tag:blogger.com,1999:blog-50934083856784455572024-03-20T23:02:53.947-07:00The Halcyon LifeHal-cy-on: adj.
Denoting a period of time in the past that was idyllically happy and peacefulPriscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.comBlogger92125tag:blogger.com,1999:blog-5093408385678445557.post-70294098264296845022023-08-05T12:32:00.000-07:002023-08-05T12:32:10.434-07:003 years since diagnosis, 2 years post SCT <p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8eqTL33Ml1heqpoY3CShDvS2WKfjBSCsVKwN8fZVHTlolDERspw_oIaLfRT2rxoFgTazZGoBtuExzRlC_RjeowbC44Dy_vI9C7jn2EK207cFP-somJjKG_jWhhtDVOgGVpEi15v8tEdlVA62k8RFdddV0ve7JwK98IVNRddwYreXXr3qUFAbo1juIYds/s828/308927517_10108287569007482_5002706625371363115_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="828" data-original-width="828" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8eqTL33Ml1heqpoY3CShDvS2WKfjBSCsVKwN8fZVHTlolDERspw_oIaLfRT2rxoFgTazZGoBtuExzRlC_RjeowbC44Dy_vI9C7jn2EK207cFP-somJjKG_jWhhtDVOgGVpEi15v8tEdlVA62k8RFdddV0ve7JwK98IVNRddwYreXXr3qUFAbo1juIYds/s320/308927517_10108287569007482_5002706625371363115_n.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7riABxBBLN5fktN92ELZRp26XAM8efIyEYYP1pwtZ_Jx1PgQfnBt7BGl3QSypA3zQA4soTnUvT9_8TgaL-FOC4XLXcChH-c6lEbUCgYGPZgaGDLGk_TbaUMQ0-fSmErmor7LyDzTSOh7n2OGV3kc8-inHcm6JYhGSh5SvlUngWmQ2QLLuaSQxucHf2sI/s2048/309234268_10108288879855532_4986475946296155109_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1364" data-original-width="2048" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7riABxBBLN5fktN92ELZRp26XAM8efIyEYYP1pwtZ_Jx1PgQfnBt7BGl3QSypA3zQA4soTnUvT9_8TgaL-FOC4XLXcChH-c6lEbUCgYGPZgaGDLGk_TbaUMQ0-fSmErmor7LyDzTSOh7n2OGV3kc8-inHcm6JYhGSh5SvlUngWmQ2QLLuaSQxucHf2sI/s320/309234268_10108288879855532_4986475946296155109_n.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja-zMaZTjWgI0IUffy6Fc8c_R8HPoS3cxHh3A_L27E285uuFiEFEkoAm3aI6h6FM9fX_VwjaIkGmLet8tofVFhUtM2uB2fcpmKpALuor_S1cqErKFGW7XVYBHOf7c2IJN1P5GZ6GB-yJYysJaLoW_OtKLuy-t8F1JqYLR0ZOZ5fChS92ekbVqfTVt_ukk/s2048/340849929_245395764522016_6075197725380069733_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja-zMaZTjWgI0IUffy6Fc8c_R8HPoS3cxHh3A_L27E285uuFiEFEkoAm3aI6h6FM9fX_VwjaIkGmLet8tofVFhUtM2uB2fcpmKpALuor_S1cqErKFGW7XVYBHOf7c2IJN1P5GZ6GB-yJYysJaLoW_OtKLuy-t8F1JqYLR0ZOZ5fChS92ekbVqfTVt_ukk/s320/340849929_245395764522016_6075197725380069733_n.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_ooqZmRtPXHzWLCJ7oiyAnMZ0eYViK23zM9XwE5sZGTUS_WZ5fyi884afQQ4DakhokB5TtP8hIjJy3xNPyYWDjeiEDvh7rIRhaR_7o6QoqnuidiBBbj_-5QwJl1T8RDyKO39BJ0EwjlvU_zWnOo_ncczNLGhiR0Tfp8cR20H4BK8-K4xuZNuPAWBWajk/s960/345062124_602569015182246_7516172851992895430_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="958" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_ooqZmRtPXHzWLCJ7oiyAnMZ0eYViK23zM9XwE5sZGTUS_WZ5fyi884afQQ4DakhokB5TtP8hIjJy3xNPyYWDjeiEDvh7rIRhaR_7o6QoqnuidiBBbj_-5QwJl1T8RDyKO39BJ0EwjlvU_zWnOo_ncczNLGhiR0Tfp8cR20H4BK8-K4xuZNuPAWBWajk/s320/345062124_602569015182246_7516172851992895430_n.jpg" width="319" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvtXCGo_zIXr2b69Z-KFBEeCq-S_i3lhvBjaoFn_xP0iIp2939qkGBJ97-8FIqFtw7nKumZehvC70izm5CzcMIPxgnXmIaO0bVwuoIYN05c0uEhDdV0W3P7OLDMx4rd7OIezcdAmBTaEM5NMdpRT81ZjPynznBzqAXLDTtpQFYX0KUcZLviH1ET5rVLPs/s2048/363062085_10109056410318332_1399408526523609365_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvtXCGo_zIXr2b69Z-KFBEeCq-S_i3lhvBjaoFn_xP0iIp2939qkGBJ97-8FIqFtw7nKumZehvC70izm5CzcMIPxgnXmIaO0bVwuoIYN05c0uEhDdV0W3P7OLDMx4rd7OIezcdAmBTaEM5NMdpRT81ZjPynznBzqAXLDTtpQFYX0KUcZLviH1ET5rVLPs/s320/363062085_10109056410318332_1399408526523609365_n.jpg" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkH-KZ8Gx7zP2EkKC5jqtnkaIbeOx293exFKvmgmCt3ZPF2PTFPWme5BWaQKHqC_EMydvhRHDY28D8yaX6LccfF0mhlJzs7XWy8wozCAeOoHJWnnKxwhyg8XTyXJ40M0a-bQwT2co6B0bOs6hXQHJvYUJQUochZaLe9a02x6ZSNtlPJIloeL4flC2bed4/s1800/347913265_2498004670348555_1514088656707449433_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1800" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkH-KZ8Gx7zP2EkKC5jqtnkaIbeOx293exFKvmgmCt3ZPF2PTFPWme5BWaQKHqC_EMydvhRHDY28D8yaX6LccfF0mhlJzs7XWy8wozCAeOoHJWnnKxwhyg8XTyXJ40M0a-bQwT2co6B0bOs6hXQHJvYUJQUochZaLe9a02x6ZSNtlPJIloeL4flC2bed4/s320/347913265_2498004670348555_1514088656707449433_n.jpg" width="256" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Gratitude. Grace. Mercy. Those are words that come readily to my mind as I reflect on the last three years. Today marks three years since we first heard the words "Leukemia." Three years ago, Kurt headed to UK hospital to begin the induction phase of his treatment. We were give the diagnosis, told to go home and pack our bags, and go to UK. It was a whirlwind. In some ways, we are still processing everything that has happened. I remember wishing, as we spent those first nights in the hospital figuring out the nuances of Kurt's diagnosis and treatment plan, that I could fast forward to 2023. I wished that I could have a peek into the future, a future where Kurt was free of cancer and healthy again. I also wanted to freeze time. I wanted to stay right in that moment, because I was afraid that 2023 might come and Kurt would no longer be here with us. </div><div class="separator" style="clear: both; text-align: center;">If I had gotten my wish, I would have missed out on a lot of pain, fear, and suffering. I would have also missed out on the growth. I imagine I will have a lot more to say about that in the future. In some ways it is still very raw, though this past year has brought a lot of healing to our hearts. </div><div class="separator" style="clear: both; text-align: center;">In May, Kurt reached the two year anniversary of his transplant. He had a wonderful check up and received the last of his childhood vaccines. He is still 100% donor cells and his bloodwork was excellent. Kurt's hemoglobin finally came back into the normal range this spring and it has really improved how he feels. The GVHD that effected his tendons/muscles seems to be inactive now. He has a lot of residual tightness in his arms, torso, and legs, but it has improved a bit with stretching and exercise. Kurt is medication free and doesn't have to see his oncologist again for six months. </div><div class="separator" style="clear: both; text-align: center;">This year, we have been able to enjoy so many activities as a family. In September of 2022, we went to Walt Disney World for a 10 day vacation. It was so much fun! After Kurt's follow-up in May, we have been pretty much mask-free in public. It has felt really strange after wearing them so long! Kurt enjoyed volunteering and attending our church's VBS program this July. He worked with the design crew to create some amazing lighting for our medieval theme. </div><div class="separator" style="clear: both; text-align: center;">Kurt continues to work as an IT Engineer and is enjoying being able to travel for his job again and be out with clients. Thankfully, he is home a lot of the time. We really enjoy seeing him throughout the day! It's a nice balance and was truly a life-saver during Covid and his treatment. </div><div class="separator" style="clear: both; text-align: center;">In a few weeks, Kurt will celebrate his 43rd birthday. We have learned not to take one day or one moment for granted. We are still in awe at what God has done. We are also so thankful for Kurt's oncologist, Dr. Reshma Ramlal, and her team at the University of Kentucky. We pray each day will bring us closer to a cure and better treatments for all blood cancers. </div><div class="separator" style="clear: both; text-align: center;">It doesn't seem real that it has been three years. Here we are. It's beautiful. </div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /> <p></p>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-70638205020479058422022-06-02T16:07:00.001-07:002022-06-02T16:07:06.317-07:00Days +232 to +365 (and beyond)! <div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">Day +232</div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">Kurt had another check up this morning. His bloodwork looks perfect! His hemoglobin popped up to 13! He's right on the cusp of normal. We are so thankful for this news. I think we both get some anxiety with every test and blood draw. I'm thankful that, by fixing our eyes on Christ, our anxiety dissipates. I just struggling with glancing away constantly--dratted human nature!</div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">We also got the good news that Kurt is on the list for the new Evusheld antibody treatment. This treatment doesn't replace vaccination but it will add some additional protect from Covid infections. The FDA describes it in the following way: "One dose of Evusheld, administered as two separate consecutive intramuscular injections (one injection per monoclonal antibody, given in immediate succession), may be effective for pre-exposure prevention for six months." The drug is made up of two different monoclonal antibodies (tixagevimab and cilgavimab). We'll have to wait for a call for him to come in a receive it, but we are so thankful he's on the list. This will be another big step in having some protection against severe illness for Kurt and other cancer patients. </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">We thank the Lord for these days! We continue to pray that Kurt's labs will be normal and that his vaccinations/antibody treatment won't cause any reactions. He will have another chimerism test in March and then a bone marrow biopsy in May at his one-year anniversary.</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Day +241</div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt receive the Evusheld Antibody injections today for protection against Covid! <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="👏🏻" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t58/2/16/1f44f_1f3fb.png" style="border: 0px;" width="16" /></span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="👏🏻" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t58/2/16/1f44f_1f3fb.png" style="border: 0px;" width="16" /></span> We are so thankful for this opportunity and protection for him. He did have to wait an hour for observation after the injections, but as you can see, he had it pretty easy—relaxing in a heated chair and talking to his mom and dad!</div><div dir="auto" style="font-family: inherit;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYwbdfwV3mJuQ6w9Wqs9QTzzqdyG1lamh89G-kAJAq2y3XP9fV3Y8L-Qyqnp30-jtPWdDDUuBFe_k3oVjBGyUQulFF84xRgUtqBPBg5C8HH1YnigvZA4rgF0cHMrS9FLUG_JjmvRvAXxQRB9xsvqQRiSIqPxGrgaYzYnMUOQZB5nV2bs5XMY_f4Jln/s2048/Kurt%20Evusheld.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYwbdfwV3mJuQ6w9Wqs9QTzzqdyG1lamh89G-kAJAq2y3XP9fV3Y8L-Qyqnp30-jtPWdDDUuBFe_k3oVjBGyUQulFF84xRgUtqBPBg5C8HH1YnigvZA4rgF0cHMrS9FLUG_JjmvRvAXxQRB9xsvqQRiSIqPxGrgaYzYnMUOQZB5nV2bs5XMY_f4Jln/s320/Kurt%20Evusheld.jpg" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Day +266</div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt’s check up today went well! He had another good report and received his second series of vaccines. His next appointment won’t be until April! In between, he’ll have a routine lung function test to check for GVHD of the lungs. </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt has been feeling really well. He’s working full-time at home and enjoys having the energy to play with the kids and do more strenuous activities. His muscles have been sore, as he regains strength. It’s a good pain! </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">In April, his oncologist will repeat the chimerism test and he’ll receive a third series of vaccines. In May, he’ll have his biopsy and a specific CD4 lymphocyte test to see if he can stop his last two medications! </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">We continue to pray that God will allow Kurt’s new immune system to function correctly and that he will continue to be Leukemia free. We are so incredibly thankful for how well Kurt is doing! It’s a blessing just to wake up together everyday. Praise God for His mercy and love!</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Day +300</div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Just a quick update: </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">On 3/7 Kurt was able to get an additional dose of the Evusheld monoclonal antibodies (a prophylactic Covid treatment). The FDA changed the dosing in light of newer studies involving Omicron. Kurt did great with the injections and we are so thankful that this has been available for him. </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">On 3/11 Kurt had a Pulmonary Function test to make sure his lungs are healthy post transplant. Thankfully, he passed the test with excellent scores. We were able to take a day trip, as a family, to see the giants at Bernheim Forest. It is just amazing to watch Kurt walking, running, and playing with the kids (and puppy!). We continue to thank God for Kurt’s progress and how He is using this journey to reshape our hearts and grow us.</div><div dir="auto" style="font-family: inherit;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_MLv6t0dyqtgPSq6WcLA5cFWXLz2n71KHbtFM992pNp4z9X-nwEOUcYmd3U4HycYJ5v4dMQQPIXbO9icwRMeU1zUbklL_P6Llgc1Vn-ImG4rA3zz0U3qJb4qHrxQ3Dwuvj2r8munfqGqq_juaCURJR-_VFpBTYHgaHAQtZxQA5pgsDlau5ExfYi_9/s1440/275672712_10107962581639772_2328667915149625722_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1440" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_MLv6t0dyqtgPSq6WcLA5cFWXLz2n71KHbtFM992pNp4z9X-nwEOUcYmd3U4HycYJ5v4dMQQPIXbO9icwRMeU1zUbklL_P6Llgc1Vn-ImG4rA3zz0U3qJb4qHrxQ3Dwuvj2r8munfqGqq_juaCURJR-_VFpBTYHgaHAQtZxQA5pgsDlau5ExfYi_9/s320/275672712_10107962581639772_2328667915149625722_n.jpg" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Day +330</div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt’s oncologist used the word “fantastic” to describe his blood work today! Praise God! His hemoglobin has finally popped up to 13.4. It’s definitely a marathon and not a sprint in regards to getting these numbers back into “normal” ranges. </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt has be noticing some tightness in his muscles/tendons in his arms for a couple of months. Today, his oncologist told us she believes this is a mild form of Chronic GVHD (Graft vs Host Disease). Because his eosinophils and liver enzymes continue to trend downward(these can be indicators of GVHD and both are in normal ranges now), we are praying that the flare up has already peaked and will improve without the use of steroids or immunosuppressants. The plan right now is to watch for any changes and to see her again in six weeks. </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt also had three more childhood vaccines today—his 10 month shots! Blood work was also done to check his chimerism (percentage of donor cells). </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">In six weeks, Kurt will have a bone marrow biopsy and we will meet with his oncologist again to discuss those results and the plan for the next year. We are closing in on his one-year anniversary! </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">We are so incredibly thankful for another good report. Please pray with us that this GVHD will resolve on its own. We know a little GVHD can be a good thing as it also produces a “graft vs leukemia” effect. We also pray that his chimerism test will show 100% donor cells and that his biopsy in May will continue to show he is Leukemia free. </div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><br /></div></div></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Day +365</div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Today at 12:30pm, Kurt will have his one-year bone marrow biopsy, testing for immune function, general blood work, and his chimerism test. Would you please pray for perfect test results? </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Today marks one year since his transplant. I can’t begin to express our thankfulness for this group. Each message and prayer has been felt and we are so incredibly grateful. Look what God has done this year! Rejoice with us in His great mercy and abounding love. Praise Him for the miracle of Kurt’s life today! </div><div dir="auto" style="font-family: inherit;"><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"></span></div><div dir="auto" style="font-family: inherit;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXcYaf9DQT4dYHsVT2bDM8B5TBnf770z0r0fQBa4gr3F1mU3z6a7CMaiaBW48UuzfuGr5CZwdlLdKxoFxkETXCV1GlqAVWrxJA17tL0LNlb1K1qfK-DoyZVqWQzYxE6M6qYx7cFYlamdkW6ugp3n-xgncpCVa_8FfQLbpqq8evWqa15oAh1FDN9vJw/s1285/281578878_10108065599276602_1468877909356705033_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1285" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXcYaf9DQT4dYHsVT2bDM8B5TBnf770z0r0fQBa4gr3F1mU3z6a7CMaiaBW48UuzfuGr5CZwdlLdKxoFxkETXCV1GlqAVWrxJA17tL0LNlb1K1qfK-DoyZVqWQzYxE6M6qYx7cFYlamdkW6ugp3n-xgncpCVa_8FfQLbpqq8evWqa15oAh1FDN9vJw/s320/281578878_10108065599276602_1468877909356705033_n.jpg" width="269" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">5/22/2022</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="background-color: white; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;">Two of the test results from Kurt’s bone marrow biopsy on the 18th have arrived! We are so thankful that both results are perfect! We are still waiting for the results from the MRD (Minimal Residual Disease) testing that gets sent off to Vanderbilt for processing. It’s the definitive test to determine remission. We pray that it will show that Kurt is MRD negative. We praise God for these results today!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG2Cfd8OyCJ9-UOHuia22mdBYSDmDRPkbYF2oWUeUDW3A6aFzfJQEWadQy6sWE5fjjF9YfAd9YpCE_VyA3U25AypPkVhQqiqIrH5M2g2LrEh7DtMOE28ux_h7HLOvrl5tNQY4zAw94by_wSgzUM5yu80e3XOcn_jCjpkuWQbjZnQ8mUfrRG0e1imND/s1116/282004052_10108071846367382_554868474168701595_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1116" data-original-width="828" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG2Cfd8OyCJ9-UOHuia22mdBYSDmDRPkbYF2oWUeUDW3A6aFzfJQEWadQy6sWE5fjjF9YfAd9YpCE_VyA3U25AypPkVhQqiqIrH5M2g2LrEh7DtMOE28ux_h7HLOvrl5tNQY4zAw94by_wSgzUM5yu80e3XOcn_jCjpkuWQbjZnQ8mUfrRG0e1imND/s320/282004052_10108071846367382_554868474168701595_n.jpg" width="237" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5N3rMGio2jEeFFPPrOFC5qO5SjBKG-EvDfP3P70C4FZ0uLty4KHtoeXN49gVBJahetVlUfFKhgg8sR-iNSGa3JRVGHvrcv35Sb-ljF28Ix7S261GQx9ek9bJGIowaNEUbUcxwk9Pl1bqBnVAqcqF5_AqGNg6R11qDkotovQn6-jttIqyzhuCx63ox/s934/281604498_10108071846157802_1314413961036646219_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="934" data-original-width="828" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5N3rMGio2jEeFFPPrOFC5qO5SjBKG-EvDfP3P70C4FZ0uLty4KHtoeXN49gVBJahetVlUfFKhgg8sR-iNSGa3JRVGHvrcv35Sb-ljF28Ix7S261GQx9ek9bJGIowaNEUbUcxwk9Pl1bqBnVAqcqF5_AqGNg6R11qDkotovQn6-jttIqyzhuCx63ox/s320/281604498_10108071846157802_1314413961036646219_n.jpg" width="284" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">5/27/2022</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Today, we were blessed to hear the words “complete continued remission” from Kurt’s oncologist! <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🎉" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t2b/2/16/1f389.png" style="border: 0px;" width="16" /></span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🎉" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t2b/2/16/1f389.png" style="border: 0px;" width="16" /></span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🎉" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t2b/2/16/1f389.png" style="border: 0px;" width="16" /></span> </div><div dir="auto" style="font-family: inherit;">We are so thankful for these results! His oncologist went on to express how happy she is with how he is doing. It was a blessing to hear these words after the long road we have walked since August 5th, 2020. </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">What now? </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt will continue to see his oncologist every three months for labs. </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">He will receive his 4th Covid shot and will more than likely have another dose of Evusheld in the Fall (if the FDA keeps their current recommendations). </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">We will still continue to take some Covid precautions but we can do more! Labs were drawn today to test Kurt’s immune function. We should have the results next week. This will help us determine what is safer for us to do. It will be a balancing act with monitoring local Covid/flu/RSV levels, but I think we can do it! We don’t have to be as afraid of germs. Kurt’s immune system will always be a little more susceptible to germs than someone who hasn’t gone through a transplant. We’ll just take some common sense precautions. These past two years have helped us adapt to a new way of living! </div><div dir="auto" style="font-family: inherit;"><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">If Kurt’s immune function is at a high enough level, he will be able to stop his last two meds. We pray this will happen! </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt’s GVHD seems to have calmed down a great deal and is no longer a concern. We will continue to monitor for any new GVHD symptoms that could pop up. </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">It still seems so surreal. We are overjoyed and, yet, at the same time sobered with the fact that many ALL patients don’t meet this milestone. We are humbled that a complete stranger, a world away, donated stem cells to save His life. We are in awe in all the ways God has worked, challenged, and grown us through this journey (those things continue). We pray for wisdom as we learn to navigate this new phase of life! </div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">There is much to do and navigate, many fears to overcome, battles to be won, but today…today…we dance! </div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;">6/2/2022</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><span style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;">More good news: Kurt's oncologist called on Tuesday to say he can discontinue his last two medications! </span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; height: 16px; margin: 0px 1px; text-size-adjust: auto; vertical-align: middle; width: 16px;"><img alt="🥰" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t89/2/16/1f970.png" style="border: 0px;" width="16" /></span><span style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;"> Next week, he'll have another round of childhood vaccines! He's almost done with those too. The MMR and chickenpox vaccines must wait until he's two-years post transplant.</span></div></div></div></div></div></span></div></div></div></div></div></div></div></div></div></div>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-69493917293725022212021-12-29T12:44:00.003-08:002021-12-29T16:24:13.789-08:00The longest year in history...<iframe frameborder="0" height="270" src="https://youtube.com/embed/QwaxNPY5nIY" width="480"></iframe><div><br /></div><div><br /><div style="text-align: center;"><br /><span style="font-family: arial;"><span face="Roboto, arial, sans-serif" jsname="YS01Ge" style="background-color: white; color: #202124; text-align: start;">" 'Cause we made it through, I do believe</span><br style="background-color: white; color: #202124; text-align: start;" /><span face="Roboto, arial, sans-serif" jsname="YS01Ge" style="background-color: white; color: #202124; text-align: start;">The longest year in history</span><br style="background-color: white; color: #202124; text-align: start;" /><span face="Roboto, arial, sans-serif" jsname="YS01Ge" style="background-color: white; color: #202124; text-align: start;">Thank God that it's Thanksgiving Day"</span></span></div></div><div style="text-align: center;"><span face="Roboto, arial, sans-serif" jsname="YS01Ge" style="background-color: white; color: #202124; font-family: arial; text-align: start;"><br /></span></div><div style="text-align: center;"><span face="Roboto, arial, sans-serif" jsname="YS01Ge" style="background-color: white; color: #202124; font-family: arial; text-align: start;"><br /></span></div><div style="text-align: start;"><span style="font-family: arial;"><span style="color: #202124;"><span style="background-color: white;"><span face="Roboto, arial, sans-serif"><span> </span>This Ben Rector song has been stuck in my head since before Thanksgiving. It has been sixteen months since Kurt was diagnosed with Leukemia. It has almost been two years since the Covid-19 pandemic began. It is no wonder that the lyrics: "</span><span> </span></span></span><span style="background-color: white; color: #202124;"><span>'Cause the older that I get/ I</span></span><span style="background-color: white; color: #202124;"> see that life is short and bittersweet" and "the longest year in history" resonate with me. I remember the uncertainty of last Christmas so strongly that I can literally taste the bitterness of it in the back of my throat. Kurt was weak from a fourth round of chemo and we were finding out he still wasn't in complete remission, transplant was still up in the air. One day, he told me that he needed a new pair of jeans. He told me to be sure to only buy one pair. He reasoned that he might loose a lot of weight during transplant and be a different size for awhile. I remember looking up at him and our eyes met for a brief second. I think we both let ourselves think for a moment that perhaps he wouldn't need more jeans. Maybe he wouldn't be here. </span></span></div><div style="text-align: start;"><span style="background-color: white; color: #202124; font-family: arial;"><br /></span></div><div style="text-align: start;"><span style="background-color: white; color: #202124; font-family: arial;"><span> </span>Cancer is one of those diagnoses that shakes up your world and throws mortality in your face. We all know life is fragile, but I think our frail little hearts often have to block out those thoughts to be able to cope and live. This can be a good thing. We wouldn't be very productive if we were quaking in our boots over every little task that could potentially harm us. A life lived in fear is a pretty miserable life. However, I do think it can be good to recognize the fragile state of our humanness so that we can better appreciate God's good gifts to us and to live more in the present. This year, through this suffering, this uncertainty, God has taught me to live and love better. I've seen His mercy poured out and His goodness. I feel a bit like a sleeper suddenly awakened. The world flooded with new colors, new emotions, something bigger. Through His grace and mercy, I am seeing things differently. I have gotten a little glimpse, I've seen a little more of God and the beauty of it leaves me stunned. It makes me long for more. He came in and completely changed my perspective. I can't see the whole of the journey, but He has taught me constantly refocus on what I do know--His character, goodness, and hope in Him. Some days it is like wearing faulty binoculars. I keep adjusting, things get blurry, and I adjust again and again. The peace, joy, and beauty I see when the lenses align is worth the effort and pain of constant adjustment. </span></div><div style="text-align: start;"><span style="background-color: white; color: #202124; font-family: arial;"><br /></span></div><div style="text-align: start;"><span style="background-color: white; color: #202124; font-family: arial;"><span> </span>When I look back on 2021, sometimes I want to dwell on the really tough moments. Really, I think we are just beginning to process some of those moments now. It would be wrong to ignore them because the beauty I've found would be dulled and tarnished without them. When I think of 2021, I remember...</span></div><div style="text-align: start;"><span style="background-color: white; color: #202124; font-family: arial;"><br /></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...dancing in the hospital room, the tangle of IV tubing, the view 11 stories up, out over Lexington, as we stole back a moment just for us...</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...afternoon cat naps on the bed next to the long window, a lull from the constant barrage of nurses and doctors, the sun tracing the contours of your face...</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...hard, long hugs from our children when we returned home from hospital stays-- Max's hand in mine, leading me to the couch so he could pull my arm around him, as we read a book...</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...warm spring days where you looked and felt so well that it seemed unbelievable that you were fighting Leukemia and that transplant was coming...how you styled your little "purse" for your treatment and finally found a backpack that worked...</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...the drive to clinic in heavy snow, white April blossoms, the vibrant green of summer, the flames of autumn...</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...Mabelle's 10th birthday as she twirled in pink tulle and visited friends outside. We saw their faces, we spoke to them in person, we wore our annoying but necessary masks, for a moment things felt a step closer to normal...</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...sitting in the reclining chair the day you received your stem cells, trying to watch a movie and your monitors while you slept. I held your hand, looked at each fingernail and thought about how new life had literally been poured into you an hour earlier...</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...the way the morning light looked as it spilled into the room the dawn after transplant...the towels, emesis bowl scattered on the floor, the empty place where your bed normally stood. Writhing in pain and vomiting, they had taken you down for a cat-scan to rule out anything serious with your sudden headache. Jay left the door open for a few moments letting in the light and noise of the hall. I could only hear the roaring in my head as I sat down limply, one hand on my Bible and prayed a Psalm for you...</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...we spent 48 hours in darkness and then the medicine worked...the headache abated and I breathed again...</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...sometimes we'd just lay awake and talk and laugh. You'd be in your hospital bed and I'd be on the window seat/bed. We can make home anywhere. </span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...the hot summer day Max wanted to play in his inflatable pool we'd set up on the deck...his surprised face when I dove right in and chased him around like a wild thing...we whooped and hollered...I bet the neighbors thought we were crazy. </span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...I can see you walking with the children just up ahead of me on the path through the arboretum. Max is wearing his little backpack, carrying his own water. It bobs up and down as he runs. We're together. We're outside. The scent of the flowers heavy with the summer heat fills up my nostrils, fills my lungs, quiets something inside me...</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...sharing shoes, clothes, measuring up...she's almost taller than me...her shoe size is bigger than mine...when did she become so much more of a woman than a child...it happened sometime, perhaps when I blinked a little slower...I opened my eyes and there she was...</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...we celebrated 100 days and then 41 years...it felt impossible a year ago, like it might not happen, like it would take a miracle. Grace, grace, grace....it's all I can think...</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...your hair grew back...it's still baby soft though...your beard is thick with lots of white streaks...each day, you heal a little more...you're running again, back to being dad, back to work, the race isn't over but it feels like we might be running downhill now...</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...Easter, 4th of July, Halloween, Thanksgiving, Christmas...they weren't as they had been in the past, but they were beautiful...we got to have them together again. </span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...we took a drive down a graveled road to a farm and picked up a white little doggie, when I gave her to our girls for the first time and watched them hold her, listened to the giggles, I felt something in my heart heal. When she falls asleep next to me and I glance at her profile, I see Alistair there.</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...we decorated the tree, sorted lights, spent a few hours in the garage messing with blow molds and cords...it was one of those days where the very fact that we are alive, given another day, made me laugh and cry in the same moment...</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...we sat at our kitchen table after the children had gone to bed talking about theology, looking up verses, scribbling on a note pad, my hands flying while I talked, your laughter, that twinkle in those green eyes...this friendship...it's like I knew marriage could be this way, just maybe, but we're almost to 16 years and it is far more rich than I could imagine back then...</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">...tired, my head on your chest, barely awake, thankful, just thankful for one more day, one more night like this...</span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;">Thank God for these days, the thousand little moments. May our eyes be opened to see them and to see clearly the good and merciful God who gives them. Even on the worst days, beauty is there. He is there. </span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="color: #202124; font-family: arial;"><span style="background-color: white;"><br /></span></span></div><div style="text-align: start;"><span style="background-color: white; color: #202124; font-family: arial;"><br /></span></div><div style="text-align: start;"><span style="background-color: white; color: #202124; font-family: arial; font-size: large;"><br /></span></div>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-71248954637400512022021-12-19T07:23:00.009-08:002021-12-19T07:28:18.952-08:00Day +136 to +206<div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto"><span style="font-family: times; font-size: medium;">Day +136 </span></div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto"><span style="font-family: times; font-size: medium;">Kurt’s checkup today was pretty quick. Everything continues to look great. His magnesium hasn’t really gone up, but it also hasn’t dropped with the 3 infusions a week instead of 7. We’ll take it! </span></div><div dir="auto"><span style="font-family: times; font-size: medium;">Kurt has had a few itchy spots on his forehead, so his doc held off on reducing the Tacrolimus today. She said it doesn’t look like GVHD. We will try some hydrocortisone cream and see how it looks in two weeks. Hopefully, Kurt can drop the Tacro further at the next appointment.</span></div></div><p></p><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"></div><p></p><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="text-align: start;"><span style="font-family: times; font-size: medium;">Some prayer requests: </span></div><div dir="auto" style="text-align: start;"><span style="font-family: times; font-size: medium;">-that these itchy spots will clear up and that we will discover a simple cause (new allergies can be common with stem cell transplants, as the recipient takes on the donor’s allergies)</span></div><div dir="auto" style="text-align: start;"><span style="font-family: times; font-size: medium;">-Kurt’s magnesium levels will increase </span></div><div dir="auto" style="text-align: start;"><span style="font-family: times; font-size: medium;">-Kurt’s third dose of the Covid vaccine will produce some wonderful antibodies for him (due in 2 weeks) </span></div><div dir="auto" style="text-align: start;"><span style="font-family: times; font-size: medium;">-Kurt and our family would continue to be protected from illness </span></div><div dir="auto" style="text-align: start;"><span style="font-family: times; font-size: medium;">-Kurt has a dentist appointment coming up to replace a filling that fell out. The dentist has been very accommodating. Kurt will take a prophylactic antibiotic and we hope the filling can be fixed easily and he won’t be exposed to any germs </span></div><div dir="auto" style="text-align: start;"><span style="font-family: times; font-size: medium;">-Kurt’s donor cells will continue to function at 100% and he will remain Leukemia free </span></div><div dir="auto" style="text-align: start;"><span style="font-family: times; font-size: medium;"><br /></span></div><div dir="auto" style="text-align: start;"><span style="font-family: times; font-size: medium;"><br /></span></div><div dir="auto" style="text-align: start;"><div dir="auto" style="caret-color: rgb(5, 5, 5); color: #050505; text-size-adjust: auto;"><span style="font-family: times; font-size: medium;">Day +150 </span></div><div dir="auto" style="caret-color: rgb(5, 5, 5); color: #050505; text-size-adjust: auto;"><span style="font-family: times; font-size: medium;">Today's update included some great news: magnesium has been reduced to two infusions a week! We are really excited to be able to be together on Sundays again! </span></div><div dir="auto" style="caret-color: rgb(5, 5, 5); color: #050505; text-size-adjust: auto;"><span style="font-family: times; font-size: medium;">Kurt's itchiness on his forehead has been much better since we switched around shampoo and added hydrocortisone cream. However, his oncologist did not want to proceed with reducing his immunosuppressant today. Kurt's "Absolute Eosinophils" were elevated. This elevation can be an early indicator of GVHD. In an abundance of caution, she decided to leave his dose where it is and continue to monitor this level and how he is feeling for the next two weeks. While this was disappointing, we are trusting in God's timing and his oncologist's wisdom. We have learned that elevated eosinophils do not always equal GVHD and that it can even be beneficial in creating some of the Graft vs. Leukemia effect. </span></div><div dir="auto" style="caret-color: rgb(5, 5, 5); color: #050505; text-size-adjust: auto;"><span style="font-family: times; font-size: medium;">We continue to pray that God will protect Kurt from what is harmful and allow what is beneficial for his healing. It is so amazing to see how far he has come in the last 150 days. We are incredibly thankful. Thank you for praying with us. Please continue to do so!</span></div><div dir="auto" style="caret-color: rgb(5, 5, 5); color: #050505; text-size-adjust: auto;"><span style="font-family: times; font-size: medium;"><br /></span></div><div dir="auto" style="caret-color: rgb(5, 5, 5); color: #050505; text-size-adjust: auto;"><span style="font-family: times; font-size: medium;"><br /></span></div><div dir="auto" style="caret-color: rgb(5, 5, 5); color: #050505; text-size-adjust: auto;"><div dir="auto" style="text-size-adjust: auto;"><span style="font-family: times; font-size: medium;">Day +168</span></div><div dir="auto" style="text-size-adjust: auto;"><span style="font-family: times; font-size: medium;">Kurt's appointment today went really well and we left feeling really encouraged. We're thankful for each appointment that ends this way! Today, Kurt's hemoglobin jumped up to 12. His magnesium has been stable, so his oncologist told us that she is discontinuing his infusions! She is also scheduling for him to have his trifusion port removed asap! Freedom! </span></div><div dir="auto" style="text-size-adjust: auto;"><span style="font-family: times; font-size: medium;">As you know, we have been concerned about the skin irritations that Kurt has been having. While they could be GVHD related, we are going to continue to monitor it as it hasn't worsened and seems somewhat better. His absolute eosinophils did increase again, but his oncologist told us that research is showing that an increase in eosinophils is actually a marker for a better long-term prognosis post-transplant. She will continue to watch the levels but isn't alarmed. Based on how he is doing right now, she decided to go ahead and reduce his immunosuppressant from 4 (0.5 mg) tablets daily to just 1 tablet daily! We will continue to be hyper-vigilant in regards to any changes, as GVHD can pop up at any time. While a little bit of Graft vs. Host disease is a good thing, it is certainly something we don't want it to get out of hand. </span></div><div dir="auto" style="text-size-adjust: auto;"><span style="font-family: times; font-size: medium;">Around Day +180 Kurt will repeat the blood work for the chimerism test. We pray he's still at 100% donor cells. Please join us in praying that Kurt will be able to successfully wean off the immunosuppresant without any severe issues. We pray that God will allow what is beneficial and block what is not! We are so thankful for good labs and for an uplifting appointment. Thank you for continuing to pray with us.</span></div><div dir="auto" style="text-size-adjust: auto;"><span style="font-family: times; font-size: medium;"><br /></span></div><div dir="auto" style="text-size-adjust: auto;"><span style="font-family: times; font-size: medium;"><br /></span></div><div dir="auto" style="text-size-adjust: auto;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto"><span style="font-family: times; font-size: medium;">Day +181</span></div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto"><span style="font-family: times; font-size: medium;">Kurt had his trifusion catheter (port) removed this morning. Everything went perfectly! We are thankful for this milestone.</span></div><div class="separator" style="clear: both; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhN8sNZai5bbAYmMsPuRAqMv8VJJukQ3i9Xl664YOlkvVsr6pleRywbLTpEpsXfvS9wbtHpHOmgOoVU0Jwo9GB9OmpcBCRRR6RsS4O-Dv7xxqGj7hrErorrP1pOUEYxu6h-zAtXMwZkEQLqqF6wZoq7ATKimoO6La-6t4p87E46RrWiQLf9D5BtBTEy=s701" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="701" data-original-width="526" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEhN8sNZai5bbAYmMsPuRAqMv8VJJukQ3i9Xl664YOlkvVsr6pleRywbLTpEpsXfvS9wbtHpHOmgOoVU0Jwo9GB9OmpcBCRRR6RsS4O-Dv7xxqGj7hrErorrP1pOUEYxu6h-zAtXMwZkEQLqqF6wZoq7ATKimoO6La-6t4p87E46RrWiQLf9D5BtBTEy=s320" width="240" /></a></div><div class="separator" style="clear: both; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; text-align: center;"><br /></div><div class="separator" style="clear: both; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto"><span style="font-family: times; font-size: medium;">Day +185</span></div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto"><span style="font-family: times; font-size: medium;">Kurt had another positive check up today! <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="😊" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t7f/1/16/1f60a.png" style="border: 0px;" width="16" /></span> His oncologist reduced his immunosuppressant again. If he is doing well in three weeks, he will be completely done with it. He is healing nicely from the port removal too. Labs were drawn to repeat the chimerism test to check the % of donor cells. We continue to pray that Kurt is still 100% donor cells. We should have those results back in a week. </span></div><div dir="auto"><span style="font-family: times; font-size: medium;">Kurt will receive his third Covid vaccine this evening and we pray his immune system will respond to it perfectly so that he can have some stronger immunity. </span></div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto"><span style="font-family: times; font-size: medium;">We praise God for an encouraging appointment!</span></div><div dir="auto"><span style="font-family: times; font-size: medium;"><br /></span></div><div dir="auto"><span style="font-family: times; font-size: medium;"><br /></span></div><div dir="auto"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto"><span style="font-family: times; font-size: medium;">Day +201</span></div></div><div class="cxmmr5t8 oygrvhab hcukyx3x c1et5uql o9v6fnle ii04i59q" style="margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto"><span style="font-family: times; font-size: medium;">Kurt’s checkup on Friday went great. He’s officially off of immunosuppressants! We look forward to his immune system being able function fully for the first time and for it to strengthen. We’ll continue to watch for any signs of Graft vs Host Disease and be cautious with germ exposure. </span></div><div dir="auto"><span style="font-family: times; font-size: medium;">Kurt received his flu shot on Friday and will begin his childhood immunizations in two weeks. His chimerism test wasn’t drawn correctly at the last appointment, so they made sure to do that this week. We continue to pray he’s 100% donor cells! </span></div><div dir="auto"><span style="font-family: times; font-size: medium;">As you can see from this video, he’s feeling more like his old self! He’s cleared to do normal exercise and lifting. Time to build back some muscle! <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="💪🏻" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/te7/1/16/1f4aa_1f3fb.png" style="border: 0px;" width="16" /></span></span></div><div dir="auto"><span style="font-family: times; font-size: medium;">It’s amazing to see how far he has come in 201 days! To God be the glory!</span></div><div dir="auto"><span style="font-family: times; font-size: medium;"><br /></span></div><div class="separator" style="clear: both; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwFIb8qlJrOzWI_p__lKQOK3FoAW9f5STFoVyjQPinwLsTw9zJpzs7JGLXfYEqatvCbJYhqMWS8UaU3nZTmUA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><br /></div><div class="separator" style="clear: both; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; text-align: center;"><br /></div><div class="separator" style="clear: both; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: times; font-size: medium;">Day +206</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: times; font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="background-color: white; text-size-adjust: auto;"><span style="font-family: times; font-size: medium;">Praise God! Kurt is still 100% donor cells! We are so thankful!</span></span></div><div class="separator" style="clear: both; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; text-align: left;"><span face="system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif" style="background-color: white; text-size-adjust: auto;"><br /></span></div><div class="separator" style="clear: both; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjxBcVmQweSR2Hmp7nB4ZpjCSwY5jcSnVA3xyS-eeLabAYsas2QlhY8QAGChWTLLrPhah_VyuU3GpkKntMhlHlvU4bYpkBaeUdi7KmzG6K8MbquY9enwle0OMzWiKfzyt45Jc-wtnLmpim6C5aNUXS7Y8GF14UtX5m84jG8aOHj1LHmHYrvWODMWAaB=s1138" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1138" data-original-width="526" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEjxBcVmQweSR2Hmp7nB4ZpjCSwY5jcSnVA3xyS-eeLabAYsas2QlhY8QAGChWTLLrPhah_VyuU3GpkKntMhlHlvU4bYpkBaeUdi7KmzG6K8MbquY9enwle0OMzWiKfzyt45Jc-wtnLmpim6C5aNUXS7Y8GF14UtX5m84jG8aOHj1LHmHYrvWODMWAaB=s320" width="148" /></a><br /></div><br /><span face="system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif" style="background-color: white; text-size-adjust: auto;"><br /></span></div><div dir="auto" style="font-family: inherit; font-size: 15px;"><br /></div></div></div></div></div></div></div></div></div></div>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-49646674239214534542021-09-26T08:16:00.002-07:002021-09-26T08:16:42.369-07:00Days +94 to +124<div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">Day +94</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">Kurt celebrated his 41st birthday this week. Last year, he spent his birthday in the hospital. This year was a definite improvement! </div><div dir="auto" style="font-family: inherit;">We are so close to day +100! This week, Kurt was able to completely stop taking one of the drugs to suppress his immune system--sirolimus. He also dropped the drug Ursodiol. It is exciting to see less medications in his basket. </div><div dir="auto" style="font-family: inherit;">Today, we saw Kurt's oncologist for his weekly check up. She told us that next Thursday, Kurt will also be able to stop taking two more medications: Fluconazole (to prevent fungal infections) and Prevymis (to prevent CMV). He will also begin a taper of the other immunosuppressant drug Tacrolimus. </div><div dir="auto" style="font-family: inherit;">Kurt's first post transplant biopsy is scheduled for next Wednesday, 25th at 1:30PM. He will also have a repeat pulmonary function test later that day to check for any damage the radiation could have caused to his lungs (a routine check at this stage). </div><div dir="auto" style="font-family: inherit;">Kurt was also cleared to get the first dose of the COVID vaccine next week. He will receive three doses in total in hopes that it will provide him some decent protection. </div><div dir="auto" style="font-family: inherit;">Because of the increasing cases of COVID, his doc is also hoping to switch Kurt over to magnesium infusions at home instead of going to the clinic daily. This would be wonderful but it depends on a few different factors including our insurance and the local home infusion company. We are praying it will be successful! </div><div dir="auto" style="font-family: inherit;">Kurt's labs continue to look great and his hemoglobin is finally improving now that the Sirolimus is absent. He has had more energy and is feeling better each week. His magnesium remains low, but we are hopeful that we are on the tail end of daily magnesium. Once his magnesium is stable in the normal range, he will be able to have his tri-fusion catheter removed! </div><div dir="auto" style="font-family: inherit;">As we progress toward next week, please pray with us that Kurt's biopsy will show all donor cells and no evidence of Leukemia. We pray that his COVID vaccine will go well and that he will continue to be protected from contracting COVID. We also ask that there will be no GVHD as the immunosuppressant drugs are weaned. </div><div dir="auto" style="font-family: inherit;">Kurt's recovery is far from over, but next week marks a huge milestone in the post-transplant process. We are so incredibly thankful for how well he is doing and the wonderful care he has received. His oncologist today told us that she "wished she could wrap Kurt in a bubble." While we know that isn't possible, it is very clear how much she cares about her patients and how much she wants to help keep him safe and healthy. We are so thankful for her and that God placed her in our lives during this time. </div><div dir="auto" style="font-family: inherit;">We will update next week! Love ya'll!</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Day +99</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt just had his biopsy (it went well) and is doing his pulmonary function test. Please pray with us the biopsy will be 100% donor cells with no evidence of Leukemia. We should have the results in 7-10 days. Thank y’all! </div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;">Day +108</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2JHzHBunYE4acGcvh1DKTExUXpfxjjQEd0K1yGWYtRXgrXeGRfXwHai0k80DwyD-AM5wllSl7r8aeXM-n4LcxKILqCY8b6m_WNdL2mgpkUIBxq-aDM061UQiCUPZdZYloCYhfwwQrx5I/s960/238905915_10107629946802652_4067110931289345779_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2JHzHBunYE4acGcvh1DKTExUXpfxjjQEd0K1yGWYtRXgrXeGRfXwHai0k80DwyD-AM5wllSl7r8aeXM-n4LcxKILqCY8b6m_WNdL2mgpkUIBxq-aDM061UQiCUPZdZYloCYhfwwQrx5I/s320/238905915_10107629946802652_4067110931289345779_n.jpg" width="240" /></a></div><br /><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt’s appointment went well today. All of the tests have come back great! The marrow and FISH tests from UK were perfect and the sample sent to Vanderbilt was also negative for disease and was absent of any mutations. Unfortunately, the blood clotted while preforming the testing at Vandy. They preformed the test with what they had and reported the results (no disease + no mutations), but the sample size didn’t meet the parameters. Katelyn (the PA) is going to see if Dr. Ramlal wants to re-do it (she mentioned using peripheral blood instead of a biopsy). We’ll have to wait and see what they decide. Katelyn reiterated everything was great and there’s absolutely no need to worry about the test not meeting those parameters. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt’s weekly appointments with the PA/Oncologist will now move to once every two weeks. He’ll continue with daily magnesium until his levels come up and stabilize. We hope they will continue to rise over the next two weeks! For the longest time the average was 1.5. Now, he’s seeing 1.6/1.7. They will continue to slowly taper the Tacro. Kurt’s hemoglobin was 10.9 today. Highest yet! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Last week, Kurt and Hazel received their first COVID Vaccines. Both did great! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Celebrating +108 days past transplant and Kurt being Leukemia free! <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🎉" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t2b/2/16/1f389.png" style="border: 0px;" width="16" /></span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🎉" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t2b/2/16/1f389.png" style="border: 0px;" width="16" /></span></div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;">9/9/21</span></div><div dir="auto" style="font-family: inherit;"><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;">** </span><span style="font-family: inherit;">Kurt’s oncologist called to say that the biopsy was accurate after all and he is confirmed as being MRD Negative! We thank God for this last piece of amazing news! Today, Kurt is Leukemia free and there is no evidence of any of the mutations associated with his Leukemia. He is 100% donor cells. I just keep repeating it to myself—it’s just the most magnificent news. </span></div><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🎉" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t2b/2/16/1f389.png" style="border: 0px;" width="16" /></span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🧡" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t9c/2/16/1f9e1.png" style="border: 0px;" width="16" /></span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🎉" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t2b/2/16/1f389.png" style="border: 0px;" width="16" /></span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🧡" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t9c/2/16/1f9e1.png" style="border: 0px;" width="16" /></span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🎉" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t2b/2/16/1f389.png" style="border: 0px;" width="16" /></span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🧡" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t9c/2/16/1f9e1.png" style="border: 0px;" width="16" /></span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🎉" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t2b/2/16/1f389.png" style="border: 0px;" width="16" /></span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🧡" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t9c/2/16/1f9e1.png" style="border: 0px;" width="16" /></span></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">The other great news that she gave him is that his daily magnesium infusions —that’s 91 days of going to the clinic every.single.day—-has been reduced to three days a week! <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="👏🏻" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t58/2/16/1f44f_1f3fb.png" style="border: 0px;" width="16" /></span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="👏🏻" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t58/2/16/1f44f_1f3fb.png" style="border: 0px;" width="16" /></span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="👏🏻" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t58/2/16/1f44f_1f3fb.png" style="border: 0px;" width="16" /></span></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Nothing but smiles today! </div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Day +124 </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt really enjoyed the extra time at home this week. Not having to go to the clinic daily added some more normalcy to our lives. I know Kurt really enjoyed being able to work in the mornings. He was even able to take some breaks to go for morning walks with us. </div><div dir="auto" style="font-family: inherit;">On Friday, Kurt saw the PA for his 2-week checkup. All his labs continue to look great. His magnesium was 1.8 when he went for his infusion today! She also reduced his Tacrolimus again. So far, Kurt has not shown any signs of GVHD. We continue to be on the look out for anything odd. If all goes well, in two weeks the Tacrolimus will be dropped again. He's getting really close to being done with it! They will also draw labs this week to check the % of donor cells in his blood. This will be a routine lab he will have for awhile. Thankfully, he will not need another biopsy (unless something pops up), until May 2022. </div><div dir="auto" style="font-family: inherit;">After his appointment, he and Hazel received their second Covid vaccines. They both did great! Kurt didn't have any reactions to the shot. We were hoping he might have a few indicators that he was having an immune response. We do realize that symptoms post vaccine don't necessarily equal an immune response. We pray he is creating some antibodies. In 28 days, Kurt will receive a third dose. Hazel did really well. She felt a little flu-ish yesterday, but is fine today. </div><div dir="auto" style="font-family: inherit;">We continue to pray that Kurt's donor cells stay healthy and strong. We pray that Kurt will not experience any GVHD that isn't beneficial and that weaning the Tacrolimus will go well. We are excited to start seeing his new immune system get stronger! Thank you for praying with us.</div></div></div><div dir="auto" style="font-family: inherit;"><br /></div></div><div dir="auto" style="font-family: inherit;"><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><br /></span></div><div dir="auto" style="font-family: inherit;"><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><br /></span></div></div></div></div></div></div>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-70207932561385016642021-08-08T08:06:00.001-07:002021-08-08T08:06:13.310-07:00Day +19 to Day +80 <div dir="auto" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; text-size-adjust: auto; white-space: pre-wrap;"><div dir="auto" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +80</b></div><div dir="auto" style="font-family: inherit;">Kurt saw his oncologist on Wednesday, so I am a little behind on this week's update. It was a great appointment and we left feeling really encouraged. She told us that the plan is not just to lower the Sirolimus but to go ahead and start to wean him off of it! Because, he has had no signs of GVHD, she is confident in going forward a little bit early to help alleviate the anemia Kurt has because of that drug. She also told us that at Day +100 he will be able to drop two other drugs: Fluconazole (to prevent fungal infections) and Ursodiol (to protect his liver). He should also be able to start weaning the Tacrolimus, if all is going well. It is great to know that his amount of medications will be able to be reduced! </div><div dir="auto" style="font-family: inherit;">In about three weeks, Kurt will also have his first post-transplant biopsy. This test will be able to verify at a deeper lever the % of donor cells vs. Kurt cells (though she did tell us the blood chimerism test is very accurate and the biopsy shouldn't be more than 1-2% different), show if he is still MRD-, and show if the translocation (genetic abnormality of his cancer cells) is present. He was MRD - and the translocation was absent before transplant, so we pray those two things remain the same! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Looking further out, she told us that she hopes Kurt will be off all immunosuppressants by day +180 (Mid-November). This is such exciting news, as it will mean his new immune system will finally be able to function and begin to mature. </div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">For now, Kurt will continue with the daily magnesium infusions at the clinic and weekly check ups. We are so incredibly thankful for how well he is doing! August 5th marked the one year anniversary of his diagnosis. We are thankful for all of the 365 days, even the hard ones. They were days spent together and we are looking forward, in hope, to more. I hope we never take for granted what a gift each day is. </div></div><div dir="auto" style="font-family: inherit;"><span style="font-family: inherit;">Please continue to pray that Kurt will do well with the medication reductions and that his biopsy coming up will be absolutely perfect! Also, please keep the patients on the BMT floor at UK in your prayers. We learned on Wednesday that visitors are currently not allowed on the floor because of COVID. Looking back on what Kurt went through during treatment and transplant, it breaks our hearts to think of patients having to be there alone. We pray this time of restriction will be short and for the nurses to have strength as they take on even more duties that family can normally do when there.</span></div><div dir="auto" style="font-family: inherit;"><b style="font-family: inherit;"><br /></b></div><div dir="auto" style="font-family: inherit;"><b style="font-family: inherit;">Day +75</b></div></div></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">At Kurt’s weekly checkup on Friday, the PA reassured us that he is doing great! His fatigue has been a little worse the last two weeks, so they ran some extra labs. All is well, but they did decided to reduced the Sirolimus to see if it will help alleviate the anemia. This will probably mean upping the Tacrolimus, which results in a continuation of the magnesium struggles. It’s complicated! <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="😅" height="16" referrerpolicy="origin-when-cross-origin" src="https://www.facebook.com/images/emoji.php/v9/tf2/2/16/1f605.png" style="border: 0px;" width="16" /></span> Kurt will also start a B vitamin complex and an iron supplement. We are looking forward to Day +90 and beginning to reduce the Tacrolimus too! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">We have been to the clinic for 51 days straight—that’s every day since June 11th minus 2 days (he got off for the 4th and missed one due to a scheduling mistake). We are thankful for 51 days without being in the hospital though! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">We are happy to report that Kurt’s oncologist tested negative for Covid, but we were told all the staff on the BMT floor is being tested as there has been a case (or cases—we aren’t sure) on the floor. We continue to pray for their safety. Kurt’s PA told us she was thankful we weren’t up there right now. <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="😢" height="16" referrerpolicy="origin-when-cross-origin" src="https://www.facebook.com/images/emoji.php/v9/tad/2/16/1f622.png" style="border: 0px;" width="16" /></span></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt should see his oncologist this Wednesday for another check up. We continue to pray his donor cells are working wonderfully, for some improvement in the anemia and fatigue, for his magnesium to come up, and for protection against Covid and other germs.</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><br /></div></div></div><div dir="auto" style="font-family: inherit;"><b>Day +67</b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt had another good check up yesterday! Unfortunately, we didn’t get to see his oncologist (we saw her amazing PA instead) because she had been exposed to Covid at the hospital and had to be tested/isolate. She’s vaccinated but we are still hoping she tests negative and can get back to her patients! </div><div dir="auto" style="font-family: inherit;">Kurt’s magnesium and hemoglobin continue to be low. We continue to go to the clinic 7 days a week. Hopefully, this will all start to taper off as they wean the immunosuppressants later in August! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt’s 2nd chimerism test came back late last night. He’s still 100% donor cells! <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🙌🏻" height="16" referrerpolicy="origin-when-cross-origin" src="https://www.facebook.com/images/emoji.php/v9/t17/2/16/1f64c_1f3fb.png" style="border: 0px;" width="16" /></span> We are so thankful! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">The next big tests/events come around day +90 to +100. He will have his first post-transplant bone marrow biopsy, receive his first Covid vaccine, and begin a taper of the immunosuppressant drugs. We aren’t sure of the exact order or times of these things but we talked about them with the PA yesterday. </div><div dir="auto" style="font-family: inherit;"><br /></div></div></div><div dir="auto" style="font-family: inherit;"><b>Day +60</b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt had another great check-up this week! We love it when the appointments are boring and quick. </div><div dir="auto" style="font-family: inherit;">The Tacrolimus is still depleting his magnesium, so he has to continue doing the daily infusions. It’s gotten pretty old by now, but we are still so thankful he can do this and be home. His hemoglobin is still hovering around 8.5, but this too is a consequence of the Sirolimus. It will be a great day when he can start to wean off those two drugs! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">The blood draw for the next Chimerism test will be this Tuesday (20th). We pray it will continue to show Kurt is 100% donor cells. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Otherwise, Kurt is working on gaining back some weight and re-growing hair. He has little spurts of growth that give him a cute, scruffy look! He has been able to work most afternoons, which he really enjoys. Last week, he was able to walk the “big loop” on our evening walk. We are looking forward to the time when he can run around and be his active, goofy self. </div></div></div><div dir="auto" style="font-family: inherit;"><b><br /></b></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +52</b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt had his weekly checkup today and got another good report. His magnesium was rather low after two days off this week (he got the 4th off and a scheduling error caused him to miss another day). To try and gain some ground, he’s been getting two bags of IV magnesium at the clinic each day. His oral magnesium was also increased again. We hope the levels will come up and stay but realize it might just stay low until the Tacrolimus is reduced. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt’s hemoglobin has come up a bit more. Testing shows his red blood cells are all working properly. The culprit of the low hemoglobin is most likely the other immunosuppressant, Sirolimus. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Those drugs are necessary but a pain! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt’s nausea still comes and goes but for now he will continue to use meds as needed for relief and his doctors will monitor it. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">As we approach day +60 and the next chimerism test, we pray he will still be at 100% donor cells. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">We have appreciated all the wonderful meals and encouragement over the past few weeks. Our kids love when <span style="font-family: inherit;"><a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl q66pz984 gpro0wi8 b1v8xokw" href="https://www.facebook.com/groups/669261783799732/user/100049200752666/?__cft__[0]=AZW2R2eHdloTZVO6k4gYIhFVytJ5j6Na_6Z--UxOzVwmOO1enEJI6Fh7TDnoeptXMSpgqjh9O-yNwF4b1bfopFtIY3AzJG-jK__NrHsc7GQ79X0obq8akLP8_8IcLX0dQWZ_gTIkGYUMdzwLWi9hsihIvxVQaSvO89o0dT11np58nhbh0EH3qsY_fR5PU4OcKIQ&__tn__=-]K-R" role="link" style="border: 0px; box-sizing: border-box; cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation;" tabindex="0"><span class="nc684nl6" style="display: inline; font-family: inherit;">Gene Bailey</span></a></span> stops by with cookies and CFA! They also wait eagerly for Miss <span style="font-family: inherit;"><a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl q66pz984 gpro0wi8 b1v8xokw" href="https://www.facebook.com/groups/669261783799732/user/100009941312420/?__cft__[0]=AZW2R2eHdloTZVO6k4gYIhFVytJ5j6Na_6Z--UxOzVwmOO1enEJI6Fh7TDnoeptXMSpgqjh9O-yNwF4b1bfopFtIY3AzJG-jK__NrHsc7GQ79X0obq8akLP8_8IcLX0dQWZ_gTIkGYUMdzwLWi9hsihIvxVQaSvO89o0dT11np58nhbh0EH3qsY_fR5PU4OcKIQ&__tn__=-]K-R" role="link" style="border: 0px; box-sizing: border-box; cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation;" tabindex="0"><span class="nc684nl6" style="display: inline; font-family: inherit;">Valerie Holland</span></a></span> and her never ending surprises! <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="❤️" height="16" referrerpolicy="origin-when-cross-origin" src="https://www.facebook.com/images/emoji.php/v9/ted/2/16/2764.png" style="border: 0px;" width="16" /></span> </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Thank you for praying along side us</div><div dir="auto" style="font-family: inherit;"><br /></div></div></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +45</b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt is doing really well. He had a good report from his weekly check up yesterday. His counts are all where they should be and his hemoglobin finally decided to come up to 8 today! We hope this signals that it is on its way up. Low hemoglobin plays a big part in Kurt’s physical exhaustion. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt is continuing with the daily magnesium infusions for now. He was able to increase the amount of oral magnesium he takes again this week. We hope this will eventually bump up his counts so we don’t have to go in every day. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">The nausea that Kurt has been dealing with seems to be getting better each week. His doctors are carefully monitoring it. It could be nausea due to medications but it could also be mild GVHD. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">We are so thankful that the chimerism test showed that he is 100% donor cells! We pray Kurt will stay at 100% for the rest of his life! He will repeat this test on day +60 and then have a bone marrow biopsy on day +100 to check at an even deeper level. We pray he will not have any kind of graft loss or graft failure. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Thank you for all your support and prayers. </div><div dir="auto" style="font-family: inherit;"><br /></div></div></div><div dir="auto" style="font-family: inherit;"><b>Day +38</b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt had a check up today. His counts look great and we talked about reducing the amount of fluids he gets. His magnesium is still low, so he will continue the daily magnesium infusions for now. </div><div dir="auto" style="font-family: inherit;">When we attended the appointment today the test results for the chimerism test were not back. We were disappointed but told they should be back early next week. Surprisingly, Kurt checked his online portal a few moments ago and we learned that he is 100% donor cells!! Praise the Lord for His mercy and tender care. We are so thankful and excited to hear this news!</div><div dir="auto" style="font-family: inherit;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi63z7cCbph2lMCDGl0IeGFpKeGQFYgQpADJAXNSb83U1IIbYqqqYh4WcaGJgCJgScHHWhZ3qPmGyP0LF02EWeo24RLeTRLRTtFAgCgFyMIrAMc7i_U8eN1e2lKMB4caGYoSpR7lzeLOg/s960/208956121_10107490996056062_1886094820561954865_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="444" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi63z7cCbph2lMCDGl0IeGFpKeGQFYgQpADJAXNSb83U1IIbYqqqYh4WcaGJgCJgScHHWhZ3qPmGyP0LF02EWeo24RLeTRLRTtFAgCgFyMIrAMc7i_U8eN1e2lKMB4caGYoSpR7lzeLOg/s320/208956121_10107490996056062_1886094820561954865_n.jpg" width="148" /></a></div><br /><div dir="auto" style="font-family: inherit;"><br /></div></div></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +29</b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt had a check up with Dr. Ramlal today. She was very please with his progress. His counts look good and she reminded us that they will still be low as long as he is on the Siro and Tacro. Kurt’s creatinine is back in the normal range and his blood pressure has stabilized more in the normal range (it was running high). He was able to discontinue his BP medicine but added a new prophylactic antibiotic. </div><div dir="auto" style="font-family: inherit;">His nausea continues to be a bit bothersome. She changed his anti-nausea meds and if there’s no improvement by next week she may order an endoscopy with biopsies just to make sure it isn’t GVHD. </div><div dir="auto" style="font-family: inherit;">On Friday, Kurt will have labs drawn for the chimera test. We’re praying he’s all donor cells! </div><div dir="auto" style="font-family: inherit;">For now, we will continue with the daily fluid appointments and lots of rest and as much food as possible. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Thank you for all your prayers!</div><div dir="auto" style="font-family: inherit;"><br /></div></div></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +24</b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt’s labs are still looking great. His platelets and hemoglobin continue to rise too. For the next 2-3 weeks (at minimum), Kurt has daily clinic appointments (at 8am <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="😱" height="16" referrerpolicy="origin-when-cross-origin" src="https://www.facebook.com/images/emoji.php/v9/tcb/2/16/1f631.png" style="border: 0px;" width="16" /></span>) for infusions of fluids and electrolytes. This includes weekends! <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="😅" height="16" referrerpolicy="origin-when-cross-origin" src="https://www.facebook.com/images/emoji.php/v9/tf2/2/16/1f605.png" style="border: 0px;" width="16" /></span> His first visit yesterday was about 4.5 hours. Thankfully today they had permission to run the fluids at a higher rate, so it only took 2 hours. He also had a 7:30am appointment with the nurse practitioner. Maybe we will become early birds?! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">The rest of the day is spent relaxing and napping. Kurt enjoyed the French Open this afternoon. He’s eating better and I think will rest better at home. We are so thankful! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Please continue to pray about the chimera testing next week to see the % of donor cells vs. Kurt’s cells. We pray it will be 100% donor cells! This test takes 7 days to process, so it will be a bit of a wait for results. We continue to pray for protection against infection and GVHD too. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Right now, his mom is making his favorite—chicken tetrazzini. He’s ready for dinner! </div><div dir="auto" style="font-family: inherit;"><br /></div></div></div><div dir="auto" style="font-family: inherit;"><b>Day +22</b> </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt is being discharged TODAY! <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🙌🏻" height="16" referrerpolicy="origin-when-cross-origin" src="https://www.facebook.com/images/emoji.php/v9/t17/2/16/1f64c_1f3fb.png" style="border: 0px;" width="16" /></span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🙌🏻" height="16" referrerpolicy="origin-when-cross-origin" src="https://www.facebook.com/images/emoji.php/v9/t17/2/16/1f64c_1f3fb.png" style="border: 0px;" width="16" /></span> We are so excited to be able to get home to our kiddos. Kurt needs a little more IV potassium and then we should be free to go later this afternoon. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">He goes home with 11 medications and daily clinic visits but...HOME! He will also see his oncologist twice weekly for awhile. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Please continue to pray that Kurt’s body will heal well, he will be free from infection and GVHD, and that on day +30 he will be 100% donor cells. Your prayers have held us up during this time. We cannot thank you enough or praise God enough for all He has done.</div><div dir="auto" style="font-family: inherit;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHHRSk93kP_E2ZgRuonnwWoX1I-PG2BNKAjhAmjzcCDo4NfRlA3tBoCKstrOt2CObg0sGquFjTJ5FOaxUtS43M7WODEgQANbcO2L4o-ihXDmp0KKbD__HdJwr4CE_ZmAw_Am_ASazcPxw/s960/195942675_10107451729431692_1713538409752502211_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHHRSk93kP_E2ZgRuonnwWoX1I-PG2BNKAjhAmjzcCDo4NfRlA3tBoCKstrOt2CObg0sGquFjTJ5FOaxUtS43M7WODEgQANbcO2L4o-ihXDmp0KKbD__HdJwr4CE_ZmAw_Am_ASazcPxw/s320/195942675_10107451729431692_1713538409752502211_n.jpg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi7kLTwr2yy3zFLWerfsO1QvhQYlKA9p1_Q2d1-nLUjmK9H1QT5Oe2KNC7DlJdgRlznJ85SHkiezbhpZ9k3aEpk8imUueuoQ8HZ8DYUsvCxsV5agxN_J4Mjbj_dIZ4Kq-NTHeah5TupiE/s960/197106230_10107451729476602_4494946015423806181_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi7kLTwr2yy3zFLWerfsO1QvhQYlKA9p1_Q2d1-nLUjmK9H1QT5Oe2KNC7DlJdgRlznJ85SHkiezbhpZ9k3aEpk8imUueuoQ8HZ8DYUsvCxsV5agxN_J4Mjbj_dIZ4Kq-NTHeah5TupiE/s320/197106230_10107451729476602_4494946015423806181_n.jpg" width="320" /></a></div><br /><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><br /></div></div></div><div dir="auto" style="font-family: inherit;"><b>Day +21</b></div><div dir="auto" style="font-family: inherit;"><span style="font-family: inherit;">Kurt’s labs continue to look great. His hemoglobin even came up a bit! He’s eating more </span></div><div dir="auto" style="font-family: inherit;"><span style="font-family: inherit;">and healing each day. Last night he ate a whole serving of lasagna and this morning two bowls of cereal! </span></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Nausea still creeps up at times, so he is trying to be proactive about getting meds before it strikes. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">His oncologist told us it will probably be Thursday or Friday before he is discharged. He’s needing quite a bit of electrolyte replacement each day. Yesterday, they started adding a pill form of magnesium and they will try to increase that and add a potassium pill so he won’t require as much via the IV. The Tacrolimus and Sirolimus cause a lot of electrolyte wasting, but his oncologist did say the body will adapt after a couple weeks. We pray that Kurt’s body will be able to get the right balance, so we can go home and then come to clinic for the infusions he does need. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Thank you for praying. We are ready to be home but trying to wait patiently to make sure Kurt’s body is ready!</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><br /></div></div></div><div dir="auto" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;"><b>Day +20</b></div><div dir="auto" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;">Kurt had another good day today. His neutrophils are way up at 3.5! His platelets have recovered a lot and are 87. His hemoglobin is still low at 7.4, but his oncologist assured us that it will come up with time. </div><div dir="auto" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;">His mouth and GI issues are SO much better. He has some nausea at times but it is well controlled with meds. We are so happy with his progress! </div><div dir="auto" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;">Today, Kurt was able to start taking some magnesium orally. We hope this will cut down on how much magnesium he needs via IV. He tolerated it well. </div><div dir="auto" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;">We hope that he will be discharged from the hospital tomorrow or Wednesday. </div><div dir="auto" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;">Praying those donor cells are working perfectly at 100%!</div><div dir="auto" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;"><br /></div><div dir="auto" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;"><br /></div></div><div dir="auto" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; text-size-adjust: auto; white-space: pre-wrap;"><b>Day +19</b></div><div dir="auto" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; text-size-adjust: auto; white-space: pre-wrap;">Kurt is doing well today. We don't have an update on all his labs (UK switched over to a new computer system yesterday and the new patient portal hasn't updated), but his oncologist stopped by and said everything looks great. His GI symptoms have improved a great deal and he is eating more each day. Small, frequent meals seem to be working much better in controlling the nausea and getting in calories. He is still fatigued and takes lots of naps--as well as one can nap in the hospital! He's had an annoying little headache the past couple of days (could be a side effect of the Tacro). Thankfully, they are going to let him try a dose of Tylenol today. Tylenol isn't generally given up here because it can mask a fever. </div><div dir="auto" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; text-size-adjust: auto; white-space: pre-wrap;">We hope Kurt will be discharged on Tuesday, but we should know more regarding that possibility tomorrow. I feel like they never really tell us until the day we are going home! </div><div dir="auto" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; text-size-adjust: auto; white-space: pre-wrap;">After he is discharged, he will have daily clinic visits for several weeks. The Tacrolimus depletes electrolytes like crazy, so he will probably need electrolyte replacement daily (this takes around 3 hours at the infusion center). We pray we will be able to navigate that well. We are so thankful that we live so close to UK and the clinic! </div><div dir="auto" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; text-size-adjust: auto; white-space: pre-wrap;">Thank you for praying with us. We continue to pray that Kurt will be protected from infection and GVHD. We pray that he is 100% donor cells and that will show plainly on the testing on day +30.</div>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-59904033353608554732021-06-06T08:40:00.004-07:002021-06-06T08:40:32.016-07:00Day +1 through Day +16: A recap of Facebook Posts <div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;"><b>Day +1 update </b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="caret-color: rgb(5, 5, 5); color: #050505; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">The headache is still with us, unfortunately. Kurt had a CT scan and we are thankful it was clear! Now, his team is trying to discern if the headache is from one of the medications he’s taking, the DMSO preservative the cells were frozen in, or just the body’s response to the transplant itself. They are trying a “migraine cocktail” now with some backup plans for later if it doesn’t help. Kurt has been very miserable with little sleep. Praying God will take this headache away and give him sweet rest.</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><span style="background-color: white; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;"> Later (5/19/21) After trying several medications, Kurt’s team decided to try the migraine medication, Imitrex. Thankfully, it has brought his headache down from a “9” to a “3”! Praise God! Hopefully, we can stay on top of it and it won’t come back. Thank you for praying with us today. God’s peace was unmistakably felt. Kurt was even able to eat some dinner and take a shower! God is good! </span></div><div dir="auto" style="font-family: inherit;"><span style="background-color: white; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;"><b><br /></b></span></div><div dir="auto" style="font-family: inherit;"><span style="background-color: white; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +2 and into +3</b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt's headache on Day +1 was finally resolved after a hot shower and the migraine medication Imitrex. By yesterday morning, the headache was gone completely! Praise God! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt is having more GI symptoms, including some mucositis. Thankfully, he doesn't have any open lesions in his mouth right now, but his throat and mouth are very red and painful. Another aggravating symptom is thick saliva--making it harder to swallow and adding to the nausea. He's talking a lot less and we've been remembering some of the sign language we used when our kiddos were babies. To help with the mucositis, his team has given him a couple different mouth washes with some pain reliever/numbing agents. He's trying to drink more to thin the saliva. Eating has been difficult but he's making an incredible effort. So far cold apple sauce and Carnation Breakfast Essentials are the winners. The dietitian is making a protein rich milkshake for him later today. We are thankful for his team, including dietary! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt also spiked a fever last night. He had been dealing with a low grade fever all day. The doctors ordered cultures and a chest x-ray. They also do stool and urine tests. We are so thankful that every test has come back negative--another huge praise! Kurt's on a stronger IV antibiotic now just to be safe. Fevers are common after transplant without indicating infection we are told. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt slept well last night and goals for today include: eating and drinking more, along with walking more. He's been more awake this morning, but post-transplant fatigue is rough. His body has been through so much and just needs to rest too. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Thank you for continuing to pray along side us. Each day is a gift from God that we don't take for granted--even the hard ones. As another patient on the floor told us while we were walking, "Everyday is a good day, but some are better than others."</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +4</b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Last night, we found out that one of the cultures taken on Thursday grew a type of "gram positive" bacteria. The team told us they will allow the culture to continue to grow, so they can identify the bacteria. They even do DNA testing on bacteria! Kurt began a stronger antibiotic called vancomycin last night. We believe this bacteria may be the source of his fevers. The team will continue to draw blood and watch the cultures until they are all coming back negative. Thankfully, this type of bacteria is very susceptible to antibiotics. It's very scary to hear the word "infection" when dealing with Leukemia, but his team has assured us almost everyone deals with similar infections post-transplant and they are well equipped to handle it. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt was up more today. He even managed to play his ukulele for a few minutes and help me with a puzzle. Unfortunately, his mouth and throat are still extremely sore. His entire GI tract isn't at all normal. Eating was a challenge again today, but he tried his best! We have a couple different mouth washes he can use, a throat spray, and he even tried a pediatric dose of morphine. Some post-transplant patients end up utilizing a pain pump. We hope Kurt can avoid it, but it is nice know medications are here if he needs them. Even though pain meds help, it is very hard to deal with mouth pain effectively. Once his new cells engraft and start working, his GI tract should begin to heal rapidly (though taste and appetite are often effected for months after). His doctor told us that the cells know what areas of the body are damaged and in pain and will go to those areas first once they start working! Again, we are left in awe of how wonderfully God made us. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">I helped Kurt cut his hair tonight and he trimmed his beard. His hair is already starting to fall out in response to the chemo and radiation last week. We look forward to it growing back again. Until then, he's cozy in the cute fleece St. Louis Cardinals hats his mom made him! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Please continue to pray Kurt will be able to eat, find pain relief and relief from GI issues, the bacteria will be completely eradicated by the antibiotic, and that his new cells will begin to engraft next week and work beautifully. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Thank you!</div><div dir="auto" style="font-family: inherit;"><br /></div></div></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +5</b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Not much new to report today! While we can't wait for the mouth/throat pain and GI issues to be gone, we are thankful for an uneventful day. Kurt's pain level is pretty much the same. Meds do help dull the pain and he was able to drink a lot more. It's still a challenge. He's been up and about a decent amount too. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">The culture hasn't grown anything--that's good news! They will continue to check for a couple of days to be sure. His temperature has been perfectly normal. Yay! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt did need platelets before bed, but those go really fast thanks to the new catheter. We are so thankful for all the blood donors. If you can donate, please know it is very much needed and very much appreciated! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Pressing on...</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +6</b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt didn't get much sleep last night--tummy issues, so this morning we did some reevaluating and his team landed on another medication to try to help with GI issues and added a pain pump to his care. While he's on a lower dose of pain medication, the pump allows him to be in charge of how often he gets relief. I think we hit on a happy middle ground--he got a lot of pain relief today and wasn't drowsy/loopy from meds either. Win! Win! Kurt told me this evening his pain level went from 7 to a 2! It is still very hard to swallow but we are hopeful managing the pain better will allow him to start eating more. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">His doctor also clarified that most patients don't engraft until around days +14 to +20. In our ALL group on FB, patients have talked about beginning to engraft from day +10 all the way up to day +25. We pray Kurt will be on the earlier side of things but adjusted our expectations accordingly. I'm still not sure where I saw the 7 -14 days, but we've had so much information thrown at us my brain is probably a little scrambled. We pray God will sustain Kurt this week, that he will be able to eat more, get continued relief, and, that by next week, we will start to see signs that the new cells are working.</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +7</b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Holding steady on day +7! The pain pump has really brought a lot of relief and Kurt was able to eat more today. Thankfully, his mouth and throat don't seem to be getting worse at this point. We pray that things will just stabilize and then get better. His GI issues are still pretty prevalent, so that's still a challenge. It makes sleep hard when frequent trips to the bathroom are necessary. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">We both had an afternoon nap today and went for a walk this evening. We also caught up on the latest "The Chosen" episode. This one was a bit of a cliff-hanger. The verse repeated in the episode is part of a larger passage of Psalm 139 that we have been praying. I loved when Jesus told Simeon the Zealot, "I didn't need you. I wanted you." </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Pressing onward in faith. </div><div dir="auto" style="font-family: inherit;">"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +8 </b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Not much new to report today! We are just trying to stay the course, get Kurt as much pain relief as possible, and find things he can tolerate to eat. Today's victory included a few bites of mashed potatoes! So far, most of his diet is liquid. He's trying to learn to like the Breeze and Boost type drinks. </div><div dir="auto" style="font-family: inherit;">Sleep is still a challenge with the GI issues, so we continue to pray for that as well. Kurt usually naps a fair bit throughout the day too and that helps make up for the deficit a bit. </div><div dir="auto" style="font-family: inherit;">Because the cultures haven't continued to grow, Kurt is on the last two days of IV antibiotics. After those finish, he'll go back to the regular prophylactic antibiotic Levaquin. </div><div dir="auto" style="font-family: inherit;">Thank you for praying and for your messages. They are encouraging and give us strength. We are praising God for protecting Kurt and giving him the strength to endure this. We pray that relief will soon be on the way. Come on little cells!</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +10 </b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">The past few days have just been all about holding steady. A few positives that have happened: Kurt slept much better last night, his throat pain seems to have decreased, his GI symptoms seem a tad bit better, he finished up the stronger antibiotics and can return to the regular prophylactic, and he's been getting some more fluids down. </div><div dir="auto" style="font-family: inherit;">Kurt's Tacrolimus and Sirolimus levels were high yesterday, so Siro has been paused and Tacro lowered while those come down. One of the odd side effects of the Tacro being high is a burning sensation in the feet. Thankfully, a nice foot bath in cold water brings some lasting relief. Getting the immunosuppressant levels right is a balancing act! </div><div dir="auto" style="font-family: inherit;">Today, Kurt begins a prophylactic medication to prevent a reactivation of CMV (cytomegalovirus). This is just another step in the post-transplant process for patients who tested positive for CMV prior to transplant. Like Epstein Barr, CMV is something most people have been infected with and it lies dormant the majority of the time. However, the weakened immune system post transplant can open the door for a reactivation of the illness. </div><div dir="auto" style="font-family: inherit;">We continue to tweak pain meds to help Kurt eat. His pain is much less when he is just being still, but eating or talking are still a challenge. He does have a few open lesions in his mouth, but his throat is feeling and looking a bit better. </div><div dir="auto" style="font-family: inherit;">Would you please pray that we can manage Kurt's pain well and that he will be able to eat more? Ultimately, we pray that he will begin to engraft over the next week, so that his body can begin repairing this area. We continue to pray for protection against infection of every kind. </div><div dir="auto" style="font-family: inherit;">Thank you for all your support. </div><div dir="auto" style="font-family: inherit;">"Be joyful in hope, patient in affliction, and faithful in prayer." Romans 12:12</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +11</b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">After 12 days of all neutrophils, lymphocytes, monocytes, and WBCs being 0, we were thrilled to wake up to these labs today. Based on this, Kurt’s body is starting to engraft! Praise God! He needs to have three days in a row of his neutrophils at .5 or above to be considered engrafted. His numbers could teeter-totter for a few days, but we should start to see an overall rise over the next week. </div><div dir="auto" style="font-family: inherit;">What wonderful news at the end of a hard week! There’s only thankfulness! God is so merciful! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">We pray these numbers will continue to rise, Kurt’s mouth and GI tract will heal, that he will continued to be protected from infection and that he will have the right amount of Graft vs Leukemia effect and no GVHD!</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj52K0cywkAsTgMOz4fez62sC6JzAUOhBCjtj-fjzI70zeMnnSNuSxTH8h4X-_31k0MEuuRQtMEQikASr5ZSw704PJ8_DF0z2BDF1EdlsLAWIiqYDb9BNKbmQGSBJeNn3t5nkujigWSThQ/s960/192321322_10107425465105612_3338202475898060067_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="444" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj52K0cywkAsTgMOz4fez62sC6JzAUOhBCjtj-fjzI70zeMnnSNuSxTH8h4X-_31k0MEuuRQtMEQikASr5ZSw704PJ8_DF0z2BDF1EdlsLAWIiqYDb9BNKbmQGSBJeNn3t5nkujigWSThQ/s320/192321322_10107425465105612_3338202475898060067_n.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +12 </b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt's neutrophils continued to rise today to .62! The oncologist said that today is probably the first official day of engraftment. If the neutrophils stay above .5 for the next two days, he will be considered engrafted. We pray they will hold steady and continue to rise. </div><div dir="auto" style="font-family: inherit;">Kurt's mouth is still quite sore. He's still on a mostly liquid diet, but is drinking more. Mashed potatoes and beef broth have been a good meal and he's managed to eat some soggy Rice Krispies in almond milk. We continue to pray his entire GI tract will heal this week so he can eat more and reduce the pain meds. </div><div dir="auto" style="font-family: inherit;">Kurt is quite sleepy most of the time. His body is obviously exhausted from the whole process, but the pain meds make him a little sleepy too. Last night, he made it through two episodes of "I Love Lucy" and a shower without a nap! </div><div dir="auto" style="font-family: inherit;">Tomorrow, his Tacrolimus levels will be checked again and we are hopeful they have come down within range. The burning sensation in his feet has calmed down, so that's great. </div><div dir="auto" style="font-family: inherit;">We've been at UK 20 days today and are so thankful for their wonderful care. Of course, we are looking forward to going home. Every day brings us closer! </div><div dir="auto" style="font-family: inherit;">Please continue to pray that Kurt has a smooth engraftment process, that he is protected from infection, and that his body will accept these new cells perfectly. We pray they would kill off any remaining Leukemia cells to keep Kurt healthy and that they would not see his body as foreign.</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +13</b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Happy Memorial Day! <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🇺🇸" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/tf2/2/16/1f1fa_1f1f8.png" style="border: 0px;" width="16" /></span></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt’s neutrophils continue to rise! They are at 1.02 today! <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🙌🏻" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t17/2/16/1f64c_1f3fb.png" style="border: 0px;" width="16" /></span> His mouth and GI symptoms seem to be very slowly starting to improve. His throat seems much better, but he still has some lesions in his mouth. He did manage to eat some soggy cereal this morning! <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🎉" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t2b/2/16/1f389.png" style="border: 0px;" width="16" /></span></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Eating, drink, and some good naps are ok the agenda. We are SO incredibly thankful. </div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +14</b></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt’s neutrophils are 1.24 today and he is considered officially engrafted!! <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🎉" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t2b/2/16/1f389.png" style="border: 0px;" width="16" /></span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🎉" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t2b/2/16/1f389.png" style="border: 0px;" width="16" /></span><span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🎉" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/t2b/2/16/1f389.png" style="border: 0px;" width="16" /></span> He still has a long recovery ahead but a huge hurdle has been overcome! Praise God! Join us in offering Him praise with a thankful heart today!</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div class="kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;"><b>Day +15 (Day 23 at UK)</b> </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Kurt’s neutrophils inched up a bit more to 1.27. His mouth and GI issues are continuing to heal. This morning he even ate a bowl of cereal! He looks and sounds so much better. It’s amazing the difference a week can make! </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">Tomorrow, Kurt’s Tacrolimus will be switched from an IV med to a pill form in preparation for going home. He’s still getting daily magnesium and potassium, as the Tacro depletes electrolytes. His IV fluids were reduced a bit more too. He hasn’t needed pain meds since Sunday/Monday. Nausea still strikes at times, but meds knock it out. So far, Kurt hasn’t needed a blood transfusion (pretty incredible), but he has needed platelets several times. Thankfully, he hasn’t needed any for several days. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">The tentative plan is that he might get discharged early next week! We are looking forward to being home when it is safe. After discharge, Kurt will still have daily clinic appointments for several weeks. </div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto;"><div dir="auto" style="font-family: inherit;">We are so thankful for how well he is doing and for God’s many blessings and mercies. We continue to pray against infection and GVHD. We pray these new cells will thrive and the Leukemia will never return!</div><div dir="auto" style="font-family: inherit;"><br /></div><div dir="auto" style="font-family: inherit;"><div dir="auto" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;"><b>Day +16</b></div><div dir="auto" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;">The upward trend continues! Kurt's neutrophils were 1.76 today. He made it into the bottom of the normal range (1.6-6.1). His platelets also rose a bit on their own signifying that his red blood cells are also starting to recover. His hemoglobin is still pretty low at 7.1, but we have been told that it will recover last. Kurt's hemoglobin was 15 when he was admitted to start the transplant process, so he is certainly feeling the difference. It's pretty incredible that he hasn't need a blood transfusion so far. We'll see if his hemoglobin can hang on and start to rise, or if he'll end up with a transfusion in the next day or so. No matter what happens, that's a pretty amazing accomplishment. His doctor was impressed! </div><div dir="auto" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;">Nausea still continues to try to pop up throughout the day, but Kurt is eating more. He managed to eat some bites of biscuits and gravy this morning and just finished a bowl of cereal. </div><div dir="auto" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;">Tonight, he'll get to take his first oral dose of Tacrolimus. </div><div dir="auto" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;">Overall, the days are getting more boring which is exactly how we like it! <span class="pq6dq46d tbxw36s4 knj5qynh kvgmc6g5 ditlmg2l oygrvhab nvdbi5me sf5mxxl7 gl3lb2sf hhz5lgdu" style="display: inline-flex; font-family: inherit; height: 16px; margin: 0px 1px; vertical-align: middle; width: 16px;"><img alt="🙂" height="16" referrerpolicy="origin-when-cross-origin" src="https://static.xx.fbcdn.net/images/emoji.php/v9/teb/2/16/1f642.png" style="border: 0px;" width="16" /></span> We praise God for "boring" days. </div><div dir="auto" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;">The next big milestone will be on day +30 when they do bloodwork to check the % of donor cells vs. Kurt's cells. We pray that his cells will be 100% donor cells. This test will be repeated at day +60 and then Kurt will have his first post-transplant bone marrow biopsy around day +100. </div><div dir="auto" style="font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; text-size-adjust: auto;">Counting up one day at a time!</div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></span></div></div>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-3604935390255124862021-05-18T17:45:00.003-07:002021-05-18T17:45:25.993-07:00Day 0, Transplant Day <p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDKBZH6-VjGM_k2tfAeoT7XSpr4tfEFzRjIeOCIXA0IwMtpvHUbWDSErISq8H_R5mYqd6A6EMdtXFvo17FSeupoAOX559ERFPSzmWusERFZa7N4ioKAfjeHy0tfZeaL36ZT1AG3sKKE8k/s2048/IMG_6685.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1366" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDKBZH6-VjGM_k2tfAeoT7XSpr4tfEFzRjIeOCIXA0IwMtpvHUbWDSErISq8H_R5mYqd6A6EMdtXFvo17FSeupoAOX559ERFPSzmWusERFZa7N4ioKAfjeHy0tfZeaL36ZT1AG3sKKE8k/s320/IMG_6685.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;">After a week of conditioning, Kurt received his stem cell transplant today at 2:28pm EST. Days -8 through -1 included: 11 total body radiation treatments, chemo, and three treatments of Thymoglobulin. Kurt had to deal with fatigue, nausea, fever, rash, and rigors (shaking). Today, a little over 9 months after his initial diagnosis, he received the gift of stem cells and the hope of a future without Leukemia. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;">In the Leukemia world, Day 0 is transplant day, a second birthday, a re-birthday if you will. After some pre-meds (that made Kurt pretty drowsy), the transplant team brought up the frozen stem cells. This beautiful gift from a stranger in Europe arrived in Lexington, bringing hope and new life. We are so incredibly thankful for Kurt's donor and his sacrifice of time, comfort, and stem cells to save Kurt's life. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuBYAy0vRAuDzQutm3qyZmGjCkjCmM2MJSAIxFJ3NkTzoUZCPFecg_Hkdcnv6O01a4Dm9WdUI1W7OQlVgJjbJt9cg3J1ssvkx3HPZo23Tstrj7DO1fet9HfUheBN987o1cr71g9ISPqSQ/s2048/IMG_6702.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuBYAy0vRAuDzQutm3qyZmGjCkjCmM2MJSAIxFJ3NkTzoUZCPFecg_Hkdcnv6O01a4Dm9WdUI1W7OQlVgJjbJt9cg3J1ssvkx3HPZo23Tstrj7DO1fet9HfUheBN987o1cr71g9ISPqSQ/s320/IMG_6702.HEIC" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;">Kurt received 4 syringes full of stem cells through the tri-fusion catheter in his chest. The oncologist infused them each slowly over a 30 minute period. During that time, Kurt was asked to eat hard candy, as preservative to protect the stem cells can cause a terrible taste in the mouth and tickling in the throat. He appropriately chose "LifeSavers" candy. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirhXTAijmuktUFFDeaUdlVrRW0ioFiDNAhZOdxrQrBikCacTetUY4uK1kco7aQscZqV2eEsWUo2L_iKm1aKqTqZIjT3LrDhZLLeP_7-4Fg_xHaqAqEDHv6vSLAWFFj-VCN4AwhQbHnKwM/s2048/IMG_6703.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirhXTAijmuktUFFDeaUdlVrRW0ioFiDNAhZOdxrQrBikCacTetUY4uK1kco7aQscZqV2eEsWUo2L_iKm1aKqTqZIjT3LrDhZLLeP_7-4Fg_xHaqAqEDHv6vSLAWFFj-VCN4AwhQbHnKwM/s320/IMG_6703.HEIC" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglB8_Z1Gdw70EoklD-LR97XLPORE3-TJKmjt8g2WPQy0V3kcN6zD9bZQwdCKKoblkpKQN0zObCTCyyRQ5TIZyequteRubYJmSdJa9OVJ-An8teQ62IsDQc-GOLuETsVAfXNYNweiotHEA/s2048/IMG_6704.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglB8_Z1Gdw70EoklD-LR97XLPORE3-TJKmjt8g2WPQy0V3kcN6zD9bZQwdCKKoblkpKQN0zObCTCyyRQ5TIZyequteRubYJmSdJa9OVJ-An8teQ62IsDQc-GOLuETsVAfXNYNweiotHEA/s320/IMG_6704.HEIC" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiObxTM7v4grQkFwZz0cXcXCl72ZPsShe8j-dQpLMNCbsc2MyvYGf1L8rmq3CmDlyb7OBZ0hIVZanQV5lOudZk9JiGC1UTBms0bCLLJZuu4Nbwu-lrkzoxHCGtRFNlTf0zplUsyI7nIG74/s2048/IMG_6705.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiObxTM7v4grQkFwZz0cXcXCl72ZPsShe8j-dQpLMNCbsc2MyvYGf1L8rmq3CmDlyb7OBZ0hIVZanQV5lOudZk9JiGC1UTBms0bCLLJZuu4Nbwu-lrkzoxHCGtRFNlTf0zplUsyI7nIG74/s320/IMG_6705.HEIC" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;">And now, we wait for those cells to enter Kurt's bone marrow, engraft, and to produce cells. Engraftment generally takes 7-14 days. As we wait for them to begin to work, Kurt's own marrow and cells are dying or already destroyed. His counts will be non-existent. He will require blood transfusions, prophylactic medications to prevent infection, and careful observation. Kurt has also already began immunosuppressant medications that will keep the donor cells from attacking his body. We hope he will have Graft vs. Leukemia effect where the donor cells kill off any cancer cells they encounter, but we pray he does not have Graft vs. Host Disease (GVHD) where the donor cells attack his body. They thymoglobulin treatments he had pre-transplant will also help in preventing GVHD. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;">Over the next two weeks, as we wait for the cells to engraft and begin to work, we pray that Kurt will be protected from infection, GVHD, and mucosistis (mouth sores/sores in the GI tract). We pray that his body will fully accept these new cells and that they will work beautifully for many years to come! </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;">Today, Kurt completed another part of the marathon that his fighting ALL. We come now to the longest part of his journey--the post-transplant healing. We have been told to expect a rough time for the next two weeks. We know we serve an awesome God who can take away these nasty side effects! We also know that if this prayer isn't answered the way we want, He will walk with us through the hard days. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;">Thank you for coming along side us and praying. That you for all the messages and encouragement today and on many other days. Thank you for praying for and supporting our children. We love each of you! </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /></span></div><br /><span style="font-size: medium;"><br /></span></div><br /><span style="font-size: medium;"><br /></span></div><br /><p></p>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-27686671043515657962021-05-09T17:58:00.000-07:002021-05-09T17:58:34.928-07:00And the count down begins...<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiCuLxRSLJxKxOLDEmZeuJatHRkjr6YFGhyUmWsWM4bl5CrI4yTAC8m_75-TPaO_A5ihtpNCGesZgv7KHsVZ4SRHTFsiFfcOVTvJX_QydwL8tUN1k1nxc3XQyx2-UzGbpj-8NBBfKDAyw/s2048/IMG_6581.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiCuLxRSLJxKxOLDEmZeuJatHRkjr6YFGhyUmWsWM4bl5CrI4yTAC8m_75-TPaO_A5ihtpNCGesZgv7KHsVZ4SRHTFsiFfcOVTvJX_QydwL8tUN1k1nxc3XQyx2-UzGbpj-8NBBfKDAyw/s320/IMG_6581.HEIC" /></a></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;">Last week was a busy one for Kurt! On Tuesday, we met with the radiation team and discussed the radiation treatments Kurt will have as a part of transplant. Kurt also went through the process of mapping, so the radiologists will know exactly where to "shoot" him. He was pretty disappointed to learn that he won't become the Hulk or gain other super powers. If you ask me, he's already proven he's Superman! </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;">Kurt will have a total of 11 total body irradiation treatments during transplant. The radiation serves two purposes: it will kill any leukemia cells that might be hiding out and it will kill off Kurt's own immune system, so that there is room for the new donor cells to engraft. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;">On Tuesday afternoon, we met with Kurt's oncologist. We learned that the most recent biopsy shows that he is still MRD -! We are so thankful that the Blincyto worked so well for him. The spinal fluid they tested was also negative for leukemia! Kurt was cleared for transplant and signed all the consent forms. His donor donated stem cells last Tuesday and Wednesday. We learned, based on paperwork Kurt signed, that his donor is from Europe. We know he is likely a young male, but we aren't allowed to know any further information. We are so very thankful for him and hope to be able to thank him one day! </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;">Kurt's doctor also went over the plan for transplant with us. Kurt will be admitted on May 10th to begin the process. Here is the timeline she gave us: </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">May 10th: Admit to UK (fluids, prep) <b>Day -8 </b></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">May 11th: TBI (Total Body Irradiation) 3 Sessions <b>Day -7 </b></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">May 12th: TBI 3 sessions <b>Day -6</b></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">May 13th: TBI 3 sessions <b>Day -5</b></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">May 14th: TBI 2 sessions <b>Day -4</b></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">May 15th: Etoposide (Chemo) and Thymoglobulin <b>Day -3</b></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">May 16th: Thymoglobulin, begin immunosuppressants Sirolimus and Tacrolimus <b>Day -2</b></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">May 17th: Thymoglobulin <b>Day -1</b></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><b>May 18th: Stem Cells Day 0 </b></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><b><br /></b></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;">After Kurt receives his stem cells, we begin to count up (Day +1, Day +2). We expect Kurt's new cells to engraft (begin to work) around day +7 to +14. Kurt will have a 4-6 week hospital stay and then daily clinic visits for several weeks. During the first 100 days, he is particularly susceptible to illness. When he reaches day 90-100, he will have his first biopsy and begin reducing the immunosuppressants. Hopefully, he will be able to be COVID vaccinated at 2-3 months post transplant. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;">On Thursday, Kurt had his tri-fusion catheter placed. This is a relatively short procedure but took all day, as he got bumped back for an emergency. Unlike the PICC line that Kurt has had so far, the tri-fusion is in his chest and has three lumens instead of two. It should be much easier to use and take care of. Best of all, it should also have a lower infection risk. We are so thankful that Kurt never had an infection with the PICC lines during his treatment. Kurt was pretty sore for the first 24 hours, but is feeling much better now. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;">It is hard to pack up and prepare for another lengthy hospital stay. We are so thankful for all the help we have had with our children and for all the prayers and encouragement we have received. We are both nervous about transplant but take courage in knowing we are safe in God's hands. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><b>As we head into transplant would you please join us in praying: </b></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">-For Kurt to tolerate each new treatment well with minimal side effects. We specifically pray that he will NOT have mucositis (painful mouth sores/sores lining the digestive tract). This is a particularly painful side effect, prominent during transplants, often leading to weight loss and the need for a pain pump/feeding tube. God has protected Kurt from mouth sores so far and we pray that He will continue to do so! </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">-For Kurt to be able to eat and maintain his weight during transplant </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">-For Kurt's donor cells to engraft and work perfectly </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">-For any remaining leukemia we can't see to be obliterated </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">-For minimal Graft-vs-Host Disease (we want graft vs leukemia but we don't want the donor cells to attack Kurt's body) </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">-For Kurt's organs to be protected during all of these treatments, particularly for his lungs, kidneys, liver, and GI tract to have no infections or complications </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">-For Kurt to be protected from germs and the reactivation of dormant viruses like Epstein Barr or CMV</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">-For Kurt's heart to be encouraged and for God to give him peace and comfort daily </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">-For our children at home to be comforted and have peace with mom and dad away for so long. We pray they will be protected from illness or injury during this time. We pray their hearts will feel God's loving care. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">-For our parents and family members caring for our children </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">Thank you for praying with us and for us. If you would like get daily updates during transplant, please contact me for information regarding our Facebook group. </span></div><div class="separator" style="clear: both; text-align: left;"><br /></div><p></p>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-78712266697218158602021-04-18T10:06:00.000-07:002021-04-18T10:06:09.327-07:00At the Cliff's Edge<p style="text-align: center;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVPrMpD3deLh2wvnRabaR8gPTRQD1cWWQFiel0U7tsJqlkNbLh_utKNo6joiUcifmS9AxkAVERhYgtHuC_OPb5GYoeTuMP-29-ZCslYnqm5WPWC8lSIpXvTSwSQZ4hvLTbNTqxLLSvNuc/s2048/IMG_0593.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVPrMpD3deLh2wvnRabaR8gPTRQD1cWWQFiel0U7tsJqlkNbLh_utKNo6joiUcifmS9AxkAVERhYgtHuC_OPb5GYoeTuMP-29-ZCslYnqm5WPWC8lSIpXvTSwSQZ4hvLTbNTqxLLSvNuc/s320/IMG_0593.HEIC" /></a></div><br /> <p></p><p style="text-align: center;">It's spring in Kentucky. The trees are putting on an early show with short bursts of color. The bright purples, pinks, and whites are a shock to the senses after the dull browns and grays of the long winter. The grass is starting to grow rapidly and has transformed from a dull, dark green into a vibrant, living, movement filled carpet that is so beautiful and bright it hurts the eyes. We are surrounded by new life. The birds are singing bright notes, the earth is teeming with living things. It's a low hum of life that will become louder each day until it reaches a shrill frenzy in the hot summer and regresses into sleep with the autumn days. </p><p style="text-align: center;">We celebrated Easter and Christ's resurrection with a perfect blue sky day. I watched the bees happily making their way through the warm air. I listened carefully for the frogs singing in the evening, but I couldn't hear them from the hill on which my parents' house is perched. And while my eyes delighted in the colors and my skin relished the warm breezes, I also had to fight, claw my way out of the darkness, coldness that tries to control me. </p><p style="text-align: center;">We've cruised past the one-year anniversary of Covid, one year of lock downs, isolation--one that was very different from all the years before. One year since I walked into a store, sat near a friend, hugged a friend, sat in our church, and heard voices lifted to Heaven. I could have made different choices early on in the pandemic, but God, in His wonderful grace and mercy, gave me peace regarding COVID, and also an odd desire to be careful that I couldn't always explain. I was fearful at first, like many others, but later it wasn't fear but some urging that kept me cautious. I thank God for that direction and how He kept Kurt safe. This time last year, Kurt first starting feeling faint at times, oddly out of breath. We chalked it up to getting older, being out of shape, and later I suspected Lyme disease, poor diet, anything, anything except Leukemia. </p><p style="text-align: center;">Eight months ago, after months of isolation, church on the lawn, drive by birthdays, lots of Amazon orders and grocery pick ups, life was again thrown off in kilter an even greater way when Leukemia seemed to blindside us. I'm a researcher by nature and thankfully my degree has helped me to be able to find good sources of knowledge. What is at times a gift can also be a curse. I remember wishing during that time of waiting that I wish I didn't have the knowledge--just enough--to know that something was very, very wrong. They day we got the blood work back that sent us racing to a hematologist/oncologist, I saw the results first on the medical portal while in the van. We were somewhere in Indiana driving home from Missouri. I scrolled up and down frantically, reading the numbers again and again. I knew. My stomach sank through the floor of the car. My breath grew short. I felt bile in the back of my throat. "Whatever it is, it isn't good." I knew that. </p><p style="text-align: center;">I think I have been reflecting on that day more recently, as we get closer to transplant day. A lot of those initial emotions have been washing over me again and again. There is fear of the unknown. No matter how much we read regarding transplant, no matter how much we feel prepared, we are stepping off another cliff and diving into a mysterious and unpredictable future. I, for one, am terribly afraid of heights. I can only climb onto the second or third rung of a ladder before I start become dizzy. I didn't expect the kind of cliff diving we would be called to do during the last thirteen months, but apparently metaphorical cliff diving also triggers the same dizzy, out of control feelings as I imagine the real thing does. </p><p style="text-align: center;">The truth, however, is that we are always standing at the edge of a cliff, the edge of the mysterious and unknowable future. In the long run, as believers, we know the end of the story--the magnificent and glory-filled end. As finite humans, we don't know what's coming day to day, hour to hour, minute to minute, heartbeat to heartbeat. Leukemia, and I imagine any other life changing diagnosis, just brings the cliff edge into sharper view. What we once viewed through the hazy fog of our own weak willpower and human ability to think we are in control, is given over to a sharp, clear, binocular-like focus of the cliff's edge. We don't know if we will fall in the abyss or sprout wings and soar. Perhaps we will fall a little way and land on a surprisingly soft bed of grass or snow. We might be beaten, bruised, or impaled on the sharp rocks at the bottom. </p><p style="text-align: center;">Approaching transplant is a bit like this. It's not a task that is undertaken lightly. It is a treatment reserved for when the "big guns" are needed. It's something to be avoided until it becomes absolutely necessary. It is a hope for a cure, but a road sometimes paved with hellish suffering. We won't know if Kurt will be among those who sail through or if he will be one who has a rocky road before him, until our feet leave the cliff's edge and and we jump headlong into the wind. </p><p style="text-align: center;">I find myself rocking on the ocean of a thousand emotions. Some moments are so normal that they slip by unnoticed as they did before--the daily grind of dishes, laundry, school, bedtime routines, crafts, and family walks. Other moments are filled with such a grief-filled sorrow that I can only clasp the edges of my little boat, white-knuckled until they pass--folding his shirts, his wedding band on the dresser, the soft rustle of the bed as he climbs in--what if it all passes away? And I'm off, sailing through a private storm until my little boat catches, and the anchor pulls me back to calm waters. </p><p style="text-align: center;">We are watching the sunrises and the sunsets from the cliff edge these days. They are frighteningly beautiful, so clear. Soon we will rise, dust off our feet, join hands and when he jumps into that darkness, I'll jump with him. We'll hold on tightly to the sides of the boat and trust God's hands will gently guide us through to the other side of the valley. </p><p style="text-align: center;">"But those who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint." </p><p style="text-align: center;">Isaiah 40:31</p>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-70746726058255934922021-03-13T14:47:00.001-08:002021-03-13T14:48:02.149-08:00Early 2021 Re-Cap<p style="text-align: left;"> <span> </span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUt4VlNQ-OkrBkbAtdZ6F2UgVjYY1hVmreN43k7BUkBruB5Q4cZZ8PHDQ-RRqpLUqQHHI_IjKfBDjx4zrXu3O6mweE3fD-poPfM8gQPyQU40WDc8YKsOkTOykoHT9Y-6648bEq8dhun28/s2048/820A3038-D300-4ADC-BFD5-68D09F8F3179.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1638" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUt4VlNQ-OkrBkbAtdZ6F2UgVjYY1hVmreN43k7BUkBruB5Q4cZZ8PHDQ-RRqpLUqQHHI_IjKfBDjx4zrXu3O6mweE3fD-poPfM8gQPyQU40WDc8YKsOkTOykoHT9Y-6648bEq8dhun28/s320/820A3038-D300-4ADC-BFD5-68D09F8F3179.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;">(Kurt working on the Lego Disney Castle we got for Valentine's Day)</div><br />It has been a couple of months since I have done an update, so this will be a quick post to catch up on recent events in Kurt's battle against ALL. <p></p><p style="text-align: left;">We really enjoyed the Christmas season and Kurt was able to rest a lot and recover from his last round of Hyper-CVAD B. Kurt's hemoglobin was really low for a few days around December 28th and he developed petechiae (small red bruises) all over his arms and legs. Thankfully, he was able to get two units of blood! Because the clinic didn't have an available chair, he had to have the transfusion down the street at Good Samaritan Hospital. It took several hours and I ended up picking him up around 11:00 PM, as no visitor were allowed. It was a long day, but the new red blood cells really helped him to feel better! </p><p style="text-align: left;"> On January 8th, Kurt's bone marrow biopsy unfortunately showed that he still had 0.03% MRD. While it wasn't what we had hoped for, we took encouragement from the fact that his numbers continued to fall. Kurt's oncologist decided that it was time to switch things up and move from more traditional chemo to immunotherapy. She decided that Kurt would do 1-2 cycles of a drug called Blincyto (Blinatumomab). This drug specifically targets the B-Cells in Kurt's body with the CD19 marker. We had been able to hear about other patients' experience with this drug and were encouraged. It has had great success at getting people MRD negative and keeping them there! We felt that God was using this situation to make sure Kurt was able to reap the benefits of this drug. </p><p style="text-align: left;">On January 19th, Kurt was admitted to start Blincyto. The plan was that Kurt would spend the first four days in the hospital, so that doctors could monitor any reactions. If all went well, he would be discharged to finish the 28 day cycle at home with an infusion pump. Blincyto has a short half-life in the body, so it would need to be given 24-hours a day without pause. During the first 36 hours of treatment, Kurt experienced an immune response to the drug. This is expected but carefully monitored to make sure it doesn't get out of control. He ran a fever and felt like he had the flu. At one point, his blood pressure was a little low. Kurt was put on continuous monitoring and labs were also ran to make sure it wasn't an infection instead. After the 36 hour mark, the fever left and he started feeling great. </p><p style="text-align: left;">On the first day we were at UK, the nurses noticed that Kurt's PICC line seemed pulled out too far. They did an x-ray to confirm. We were soon surprised to learn he would be getting a new PICC line that night. Because of the nature of Blincyto, it is only paused once a day for a couple of minutes for the bag to be changed. Since Kurt got his new PICC line a few hours after the medication was started, he had the joy of having two PICC lines in for a little under 24 hours. He told me he was a "you pick two!" The removal the next day was quick and easy. I think the thought of it coming out was worse than the actual process! </p><p style="text-align: left;">Our insurance was slow in getting things approved for us to go home with the infusion pump. After many phone calls and time spent on hold, we were finally given the all clear to come home on January 28th. It ended up being a much longer stay than we thought! We were thankful that Kurt felt really well for the remainder of that stay. He was able to do some work in the hospital. We caught up on some movies and were able to go for walks each night after 8pm on his floor. </p><p style="text-align: left;">Nothing is better than being at home! We have been able to enjoy time at home since the end of January. What a blessing to be home and to have Kurt feeling well. Because Blincyto doesn't destroy all the cells as chemo does, Kurt's hair and beard quickly began to grow back. His hemoglobin has continued to recover and was a whooping 14.5 this week! He has been able to work every day and has had some busy days working from home. The children have enjoyed these more "normal" days too. Homeschooling is going really well for us and I feel so pleased with all the ground we have been able to cover during such a crazy time. This week, we will start our 24th week of school! </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge0quzrBpeRRo70a56NAH4fGC9w393DCCmtc6bPEMtWNetK2iukHxE76EFvido7EWjO9nlEmgaRJbTfcNXHdBID4wTbmhea7uPkDx3447asbJ92xlENwWTOarqAqL3ZozDoBM4pQTLv7w/s2048/IMG_5880.HEIC" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge0quzrBpeRRo70a56NAH4fGC9w393DCCmtc6bPEMtWNetK2iukHxE76EFvido7EWjO9nlEmgaRJbTfcNXHdBID4wTbmhea7uPkDx3447asbJ92xlENwWTOarqAqL3ZozDoBM4pQTLv7w/s320/IMG_5880.HEIC" /></a></div><div class="separator" style="clear: both; text-align: center;">(Look at that beard!) </div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzFsbEj7kLm0lpIvIjDyq-9rIy3j2RocTExyI4EWD9llIDSoDoHhcopwfs7lpq0V0xzWzcyGiP72-CHPKf-xMd2A00yL07w55dGP7dkgSh35rRbUsdple00V8ZWtf-kkL7q0WTRZ0As0k/s1800/815234AC-B01C-4BAD-8656-1CD02F72DCC8.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1800" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzFsbEj7kLm0lpIvIjDyq-9rIy3j2RocTExyI4EWD9llIDSoDoHhcopwfs7lpq0V0xzWzcyGiP72-CHPKf-xMd2A00yL07w55dGP7dkgSh35rRbUsdple00V8ZWtf-kkL7q0WTRZ0As0k/s320/815234AC-B01C-4BAD-8656-1CD02F72DCC8.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;">(Finished Castle)</div><br /><p style="text-align: left;">Kurt finished his round of Blincyto on February 16th. He claims the hardest part was carrying his fanny pack and trying not to get snagged on things! Blincyto is technically a 6-week treatment, even though the infusion is only 28 days. So, on March 1st Kurt had an other biopsy preformed. We received those results this week on March 10th. When Kurt's oncologist walked into the room, her first words were: "I have GREAT news!" Kurt is finally MRD Negative! We were both thrilled to hear that right now Kurt is Leukemia free. It was wonderful to hear those words but also sobering because we know that the biggest mountain is now right in front of us: transplant. Because Kurt's ALL took longer to reach MRD negative and because of the MYC 8 rearrangement that showed up in his initial diagnosis, we know his ALL is somewhat resistant and more prone to relapse. His best chance at a cure is through transplant. We know God can cure him and pray He is using transplant as the means to do it. </p><p style="text-align: left;">Kurt's oncologist told us that they have activated his donor and sent him some dates to choose from for donation. We are currently waiting to hear back if one of those dates works or if there will be a little delay. We were told if we didn't get a phone call on Thursday that things would be progressing. No phone call came, but we are still holding our breath a little until we hear from his transplant coordinator on Monday. If transplant is on schedule, it will happen as early as 2-3 weeks. If there is a delay, Kurt will need to do an interim dose of chemo or Blincyto to prevent him from going too long without treatment. This would push transplant back. We are trusting God to work everything out for Kurt's good. </p><p style="text-align: left;">Right now, Kurt will be repeating some of the testing that he already did to clear him for transplant. We don't expect any hiccups, but continue to pray he stays healthy. Before transplant, Kurt will also have an outpatient procedure to place a tri-fusion line in his chest to be used instead of the PICC line in his arm. Before receiving his stem cells, he will have 6 days of total body radiation and chemo to ablate his own bone marrow. Radiation will be 2x a day. It is a lot to take in. but we know God will help us and protect Kurt. After the 6 days of conditioning, on day 0, Kurt will receive new stem cells and a new journey will begin! </p><p style="text-align: left;">Please continue to pray for Kurt: </p><p style="text-align: left;">-for protection against illness or anything that would delay transplant </p><p style="text-align: left;">-for strength, for him to pack on the pounds, and stamina to endure transplant </p><p style="text-align: left;">-for protection against mucositis (mouth sores) during the first phase of transplant. We are told this is one of the most common and worst side-effects. Many patients have pain pumps and even feeding tubes for a period of time. This usually resolves once engraftment happens around day +10. </p><p style="text-align: left;">-protection against GVHD (graft vs host disease) post transplant </p><p style="text-align: left;">-protection against weight loss (he's always been a skinny guy--I'm trying to fatten him up!)</p><p style="text-align: left;">Please pray for his donor: </p><p style="text-align: left;">-for protection against illness </p><p style="text-align: left;">-for a smooth donation process and no side-effects </p><p style="text-align: left;">-pray that God will use this process to reveal himself to the donor, if he isn't a believer </p><p style="text-align: left;">Thank you for praying for our family and for journeying along side us! We are so blessed. Kurt has done so incredibly well with everything and I know that this just shows how God is taking care of Kurt and being so merciful to him. There's no other way to explain it! </p><p style="text-align: left;">We look forward to sharing more concrete days regarding transplant soon. </p><p style="text-align: left;">-Priscilla </p><p style="text-align: left;"><br /></p>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-53749164712660556872020-12-31T13:36:00.000-08:002020-12-31T13:36:25.725-08:00As we close out 2020...<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2oN_p8-oBHFcfgB5xhF8P4YCUyA4E9OnL8mr8E0JLj90R2_R13NxATbJzG5l0vPrPThq74Xv7HCGVrb2JvkJHFHOAGLis6ohFGKbgShh23KzvQoLA4QnhWd8_VeR4fVfMPXl6VC4Gtdg/s2048/D256698F-E7E4-4AE8-9047-71306539A3D1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2oN_p8-oBHFcfgB5xhF8P4YCUyA4E9OnL8mr8E0JLj90R2_R13NxATbJzG5l0vPrPThq74Xv7HCGVrb2JvkJHFHOAGLis6ohFGKbgShh23KzvQoLA4QnhWd8_VeR4fVfMPXl6VC4Gtdg/s320/D256698F-E7E4-4AE8-9047-71306539A3D1.JPG" width="320" /></a></div><br /> <span> </span>2020. I can imagine years from now the mention of this date will bring with it a sigh and a heart ache for most of us. As I was reflecting on this year and trying my best to do some sort of planning for what the next couple of months could bring, I thought about some of the odd milestones we are about to reach. March 2021 will be one year since I physically went into a store! January and February mark the last months of our "normal life." March 2021 also will bring the last time we were physically inside our church building as a family--how saddened my heart is over that thought. July was the last time we saw our BFG (small group) at church outdoors. July was the last time we saw most of our Johnson family, and even that was socially distanced and outdoors. <p></p><p><span> Birthdays in 2020 were celebrated at home with drive through visits and zoom gatherings. We spent the 4th of July visiting cousins but staying 6ft apart and outside to watch Kurt's annual fireworks display. And just when we thought maybe, just maybe, it might be safe to do a little bit more, Leukemia sent us down a new path to an even deeper isolation. Shortly after, COVID began to surge again as well. </span><br /></p><p>For me, 2020 has been a year filled with both grief and joy. From talking with other families who have faced a cancer diagnosis and from our own experience, we know there is a lot of grief to process with the initial diagnosis. We grieve our "old" way of life. We grieve the sweet innocence we never really knew we enjoyed--time without direct and specific concerns for the future that seem to mar even the most joyful of days. </p><p>Having had my own battles with chronic illness, I know a smidge of what it is like to grieve the loss of a "healthy" body, a body that hasn't betrayed you or limited what you can do. I know of the trauma that can result from suffering and how it sticks with you. While I believe this knowledge is a good gift in that it will help me understand more of Kurt's battle with Leukemia and be more empathetic, it also brings me much sadness in knowing how terrible and lasting some war wounds from illness can be. </p><p>One of the most difficult things this year has been watching the impact of COVID, isolation, and Kurt's illness on our children. Anxiety, loneliness, frustration, behavioral changes have had to be met and dealt with. Sometimes we didn't deal with them well either, as we were nursing our own heartaches. </p><p>One day at a time...365 days...and we have kept marching forward with hope and through the grace of our Savior. And here we stand on the precipice of 2021, looking back and we can find blessings too numerous to list or count. I want to list some of the major ones here, so that I do not forget the goodness God has shown us. In the hardest of years, He has surrounded us with love and encouragement. He has shown Himself ever faithful. </p><p>2020 is really all about perspective, so I choose to shift mine: </p><p>-Back in January and February, Kurt had to travel to California and New Orleans for business. We are so thankful that he remained healthy. He was in California right before the March shut down for COVID! </p><p>-In the early part of the year, I was dealing with a flare up of health issues. While I am still dealing with some of them, I saw great improvement throughout the year. </p><p>-I am thankful for a wonderful doctor who always responds to emails, checks on me, and has the capability to do virtual and phone visits. I'm thankful we could see her in July and that she re-checked Kurt's blood work, sending us on a whirlwind trip to a diagnosis with Leukemia before he was very symptomatic. </p><p>-When COVID first hit, I will admit I was anxious and fearful. I had a slew of health issues that made me more vulnerable and I wondered what would happen if I caught it. We were very strict about isolating, mask wearing, and social distancing. I prayed for wisdom and discernment. I didn't want to be too lax, but I didn't want to live in fear either. God granted me such peace. I firmly believe He gave me the push to keep practicing wisdom through proper precautions because He knew Leukemia was coming and that Kurt was so much more at risk than we knew (during the summer). </p><p>-I am thankful our children celebrated their birthdays. We now have a 5, 9, and 12 year old! Each birthday showed our children just how much they are loved. Cards, phone calls, safe visits, gifts from teachers and friends all meant so much to them. Mabelle keeps a poster signed by her teacher and classmates in her room and still talks about it often. </p><p>-Because my parents have a lot of property, we were able to enjoy and explore outside a great deal. We loved hiking to the waterfall and spending time with Mamaw and Papaw in ways we normally don't get to do with hectic schedules. They let us put up a pool at their house and we enjoyed many hours swimming. </p><p>-We lost both of our dogs this year. I still miss them so much. Their presence was such a comfort in hard times. I am thankful that they both were able to pass peacefully at home with the help of a a wonderful vet from Lap of Love. When Mattie passed, God worked to allow me to be able to leave the hospital and come home for several hours. I was able to return with no issues. </p><p>-I am thankful that we have the resources of two wonderful therapists. They have helped our family process this year and have given us support in special ways. </p><p>-In July, we traveled to St. Louis to visit Kurt's family. We didn't know it then, but Leukemia cells were crowding out his healthy cells at a rapid rate. It was on the way home from this trip that we got the call to find a Hematologist/Oncologist asap. I am so thankful God protected us from illness during that trip and we got home safely. </p><p>-The week of Kurt's diagnosis is a bit of a blur for us, but one thing that stands out is how our family and friends immediately jumped into action to help us. Our parents cared for our children during that long 35 day hospital stay. Our BFG quickly organized meals, GoFundMe, and other resources to support our family. We could not have survived that time without our community. </p><p>-We got the phone call about Kurt's "terrible" blood work while we were driving home from STL. I think we were somewhere in Indiana. I had pulled the labs up on my phone. I didn't know what was wrong, but I knew enough to know it wasn't good. Our doctor called us shortly after I saw them. She told us to pull over. Kurt got out to talk with her. He was as steady as could be and took it all in stride. 15 minutes later I found myself leaping out of the van while we got gas to walk and have a panic attack alone. We messaged a few medical friends from church and within an hour had an appointment with a wonderful doctor on Monday. Again, God showed us He would make a way! </p><p>-I am thankful God allowed Kurt a quick diagnosis with mild symptoms. He was very stable and strong physically when he was admitted the first time. I know that gave him a great starting point for a hard journey. </p><p>-Kurt's parents have been able to help us so much these past five months. We are so thankful that God used such a horrible thing to give us so much time with his parents. The kids love all the grandma and grandpa time and it has been nice to have them here for longer and more frequent stays! They are so helpful with everything from household chores to installing new lights! </p><p>-We are thankful for Kurt's team at UK. How amazing that we live in a city with such a wonderful research hospital downtown?! Kurt's doctors have proven to be extremely knowledgable and also extremely kind. We are thankful that they choose to serve others by doing what we know is such a demanding and hard job--physically and emotionally. </p><p>-My BSF study this year is on Genesis. I have marveled again over God's creation and the last few weeks have focused on his mercy and love for Abraham. We feel as though we have set out on a journey far from the life we knew. Like Abraham, we don't know what is to come, but we know WHO to trust! </p><p>-Our church hung the verse Hebrews 13:8 over the year. "Jesus Christ is the same yesterday, today, and forever." What a verse for 2020! Reminding ourselves of God's steadfastness has brought such comfort on dark days. </p><p>I could go on and on (if you made it this far, wow!). 2020 has been a hard, ugly year in many ways. There's no way to sweep that under the rug and pretend everything is just great. However, I am thankful for a merciful God who does bring good out of the bad. I am thankful that He is forever steadfast, forever merciful, and forever loving. With hope in Him, I can face 2021 with a deep joy and an abiding peace. </p><p>As one of my favorite songs by Sarah Groves says, "From this one place I can't see very far. In this one moment I am square in the dark. These are the things I will trust in my heart: You can see something else." Even though I have felt completely blind a lot of times this year, I find comfort in the fact that He can see something bigger, something beautiful, something else that I cannot. </p><p>Do as the old song says, and count your blessing...</p><p>Wishing you peace and joy this New Year. </p><p>-P</p><p><a href="https://youtu.be/zQrs56F4AII" target="_blank">From This One Place--Sarah Groves</a></p><p><span style="background-color: white; color: #202124; font-family: Roboto, arial, sans-serif; font-size: 14px;">I was about to give up and that's no lie</span></p><div class="ujudUb" jsname="U8S5sf" style="background-color: white; color: #202124; font-family: Roboto, arial, sans-serif; font-size: 14px; margin-bottom: 12px;"><span jsname="YS01Ge">Cardinal landed outside my window, threw his head back</span><br /><span jsname="YS01Ge">Sang a song so beautiful, it made me cry</span><br /><span jsname="YS01Ge">Took me back to a childhood tree, full of birds and dreams</span></div><div class="ujudUb" jsname="U8S5sf" style="background-color: white; color: #202124; font-family: Roboto, arial, sans-serif; font-size: 14px; margin-bottom: 12px;"><span jsname="YS01Ge">From this one place I can't see very far</span><br /><span jsname="YS01Ge">In this one moment I'm square in the dark</span><br /><span jsname="YS01Ge">These are the things I will trust in my heart</span><br /><span jsname="YS01Ge">You can see something else, something else</span></div><div class="ujudUb" jsname="U8S5sf" style="background-color: white; color: #202124; font-family: Roboto, arial, sans-serif; font-size: 14px; margin-bottom: 12px;"><span jsname="YS01Ge">I don't know what's making me so afraid</span><br /><span jsname="YS01Ge">Tiny cloud over my head, heavy and gray with a hint of dread</span><br /><span jsname="YS01Ge">And I don't like to feel this way</span><br /><span jsname="YS01Ge">Take me back to a window seat with clouds beneath my feet</span></div><div class="ujudUb" jsname="U8S5sf" style="background-color: white; color: #202124; font-family: Roboto, arial, sans-serif; font-size: 14px; margin-bottom: 12px;"><span jsname="YS01Ge">From this one place I can't see very far</span><br /><span jsname="YS01Ge">In this one moment I'm square in the dark</span><br /><span jsname="YS01Ge">These are the things I will trust in my heart</span><br /><span jsname="YS01Ge">You can see something else, something else</span></div><div class="ujudUb" jsname="U8S5sf" style="background-color: white; color: #202124; font-family: Roboto, arial, sans-serif; font-size: 14px; margin-bottom: 12px;"><span jsname="YS01Ge">From this one place I can't see very far</span><br /><span jsname="YS01Ge">In this one moment I'm square in the dark</span><br /><span jsname="YS01Ge">These are the things I will trust in my heart</span><br /><span jsname="YS01Ge">You can see something else</span></div><div class="ujudUb" jsname="U8S5sf" style="background-color: white; color: #202124; font-family: Roboto, arial, sans-serif; font-size: 14px; margin-bottom: 12px;"><span jsname="YS01Ge">You can see, you can see</span><br /><span jsname="YS01Ge">Something else, something else</span><br /><span jsname="YS01Ge">You can see, you can see something else</span><br /><span jsname="YS01Ge">You can see something else</span></div><div class="ujudUb WRZytc" jsname="U8S5sf" style="background-color: white; color: #202124; font-family: Roboto, arial, sans-serif; font-size: 14px; margin-bottom: 0px;"><span jsname="YS01Ge">He just threw back his head</span><br /><span jsname="YS01Ge">(Take me back, take me back, take me back)</span><br /><span jsname="YS01Ge">And sang a song, it was beautiful</span><br /></div><p><span style="background-color: white; color: #202124; font-family: Roboto, arial, sans-serif; font-size: 14px;">(Take me back, take me back, take me back)</span> </p>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-31603440332537392432020-12-11T19:58:00.001-08:002020-12-11T19:58:40.541-08:00Hyper CVAD B #2<p> </p><p><br /></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG0PJqxrP1PEqHlIG_IyMKsM9uTFZYotL6jQEw5q1WedeY-Gexe0du2WrxuquCRvJb9AzRV7NVHPp7cGF3ULL7y8WV4cxnnXgVgxNF_He4QfK9NGj6CwSxyTePiEykOx8w3hc5IsWV_6w/s2048/IMG_2528.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG0PJqxrP1PEqHlIG_IyMKsM9uTFZYotL6jQEw5q1WedeY-Gexe0du2WrxuquCRvJb9AzRV7NVHPp7cGF3ULL7y8WV4cxnnXgVgxNF_He4QfK9NGj6CwSxyTePiEykOx8w3hc5IsWV_6w/s320/IMG_2528.HEIC" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div>We continue trucking along on this crazy journey. Kurt had his second Hyper CVAD A treatment in mid-November and is now inpatient at UK for his second Hyper CVAD B cycle. The A cycle went well with some nausea following it and a bit more fatigue than Kurt's experienced before. In true Kurt fashion, I was soon talking him out of climbing on ladders to hang lights and into taking more breaks from work or other activities he wanted to do. You can't keep a good man down! I am so thankful that he continues to rebound well from chemo. We watched as he grew some facial hair and laughed as it all fell out again in a 24 hour period! His hair is really keeping up the good fight and trying to gain some ground. <p></p><p>On the 8th, Kurt saw his hematologist/oncologist for an appointment. Since there wasn't a biopsy after the last cycle, there wasn't much news to relay. We did get a chance to ask and have some more questions about transplant answered. Transplant is such a BIG thing--we always have new questions pop up and want to try to be as prepared for what it will be like as possible. Our plans are still the same regarding a timeline:</p><p>-If Kurt's next biopsy (probably around January 1st is MRD Negative (0 Leukemia cells)), he will proceed to the prep for transplant. This will include organ function testing and the placement of a Trifusion catheter to replace his PICC line. The Trifusion will provide three lumens for more access points than the two on his PICC and is a bit safer and less cumbersome than the PICC line. Placement does require mild sedation. He will most likely have the Trifusion in his chest until at least 100 days post transplant. </p><p>-We were told that if he is cleared after the biopsy, it will probably be 2-3 weeks until transplant begins. Some of the timing depends on the donor. The donor's stem cells will need to be harvested and transported to UK before Kurt begins "conditioning." </p><p>-"Conditioning" for transplant will be 5-7 days of intense chemo in the hospital counting down to "Day 0" when Kurt will receive his new stem cells. The purpose of this part of the regiment is to obliterate Kurt's own bone marrow to make room for the new stem cells. He will have intense chemo and radiation. Current chemo simply is enough to kill the Leukemia but allows the bone marrow to continue functioning. "Conditioning Chemo" will be so strong it will permanently damage Kurt's bone marrow to the point it can no longer work properly, allowing the new stem cells to engraft and take over. </p><p>-During transplant, we expected to be in the hospital for 4-6 weeks. Engraftment generally starts to take place around day 10. Kurt will probably experience some degree of of Graft vs. Host Disease (where his new stem cells attack his body). This usually manifests in skin, mouth, and gut issues. Some degree of GVHD post transplant is a good thing as it creates a "Graft vs. Leukemia" effect where the new cells fight any remaining Leukemia cells! However, we don't want GVHD to get out of control and actually cause harm to Kurt's body either. It's something that is carefully watched, especially during the first tenuous weeks. </p><p>-For the first 100 days after transplant, Kurt will be on immunosuppressant drugs. If all goes well, on day 100, he can begin weaning off of those drugs, giving his new immune system a chance to really start to work and defend against germs! We will have to continue to be extremely careful during that first 100 day period of his recovery. For the first year after transplant, Kurt's immune system will still be like that of a newborn baby. We will have to be careful, especially with the COVID situation but we look forward to this healing process and getting closer to see those we love in person! </p><p>-If Kurt is not at 0 after this next biopsy, the plan is to do a round of the drug Blincyto for 28 days. Blincyto is not a chemo drug. It is a pre-programmed antibody that binds to certain markers on the Leukemia cells and destroys them. It is a revolutionary drug that we have heard great things about, getting many patients to 0 for transplant. For this medication, Kurt would do 7 days inpatient to make sure there are no reactions or side effects and then come home with a pump that would administer the drug 24-7 for the reminder of the 28 day period. We would then do another biopsy and proceed with transplant at that time. </p><p>-The great news is that there have been many donors identified for Kurt. Praise God! His doctor will choose the best fit for Kurt based on HLA typing. Male donors are preferable because many women who have given birth have additional antigens from their children. They also like to match blood type when possible. The more ways Kurt and his donor can be compatible reduces his risk for severe or chronic GVHD. </p><p>During this whole process Kurt has also been receiving spinal chemo through lumbar punctures (similar to an epidural). To administer the spinal chemo, a small amount of CSF is taken out to "make room" for the chemo (because the CSF system is a closed system, some must come out before more can go in). This allows the doctors to test the CSF for Leukemia cells. ALL is a tricky cancer and is prone to relapse in the CSF. We are so thankful that Kurt's CSF has remained clear of any Leukemia cells. His doctors had a goal for him to have at least have 8 spinal chemo treatments and Kurt completed his 9th Lumbar Puncture on Thursday. He will have one more, for a total of 10, on Monday. This should be the last one! He had some pain from scar tissue with the previous two LPs, but God showed mercy and answered our prays on Thursday. There was no pain! </p><p>If all goes well and Kurt clears the Methotrexate from his body, we should head home on Monday. I am so thankful that I am able to be with Kurt during this round of chemo. COVID restrictions at the hospital are tight, but we are so grateful that they are still allowing one visitor per patient on the Markey floor. We have also been able to walk the halls from 8-11PM. I think Kurt really enjoys getting out (I can go down for food, so I usually get one walk in a day to pick up dinner). We wear our eye shields and masks and get a little exercise. Tonight, we counted 8 doors labeled "BMT." 8 people going through the incredibly scary and taxing process of a transplant. Please pray for those 8 patients, especially as we know this is a lonely season for many of them. </p><p>Thank you for continuing to support us in prayer and through your generous gifts and service to our family. We can never express how grateful we are: meals dropped off, cleaning supplies, toilet paper, treats, gift cards, even help for Grandma and Grandpa when van battery died! We are so loved and so thankful for our families and our friends. We will continue to update you as we draw closer to transplant and we are praying that God will provide full healing and a cure for Kurt through this miraculous process. </p><p>With much love, </p><p>K and P<br /></p><p><br /></p>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-61899830591690902222020-10-23T07:37:00.005-07:002021-04-18T10:10:00.285-07:00Trees<br /><br /><div style="text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihWPHH3eatthwKu_ojI3RC5mPmWpQWCV19J186KUoi-PZ6MvpxCaIa6pbsoHL9Wm5QI2mqiKr7q7fWU2tEuv_sLz5NL3C2O0AKVGmEFcdAcyiX32kWDcxHgJGmv0OVHLfQoOxU2QTnqT8/s604/1909446_517074102602_827_n.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="453" data-original-width="604" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihWPHH3eatthwKu_ojI3RC5mPmWpQWCV19J186KUoi-PZ6MvpxCaIa6pbsoHL9Wm5QI2mqiKr7q7fWU2tEuv_sLz5NL3C2O0AKVGmEFcdAcyiX32kWDcxHgJGmv0OVHLfQoOxU2QTnqT8/s320/1909446_517074102602_827_n.jpg" width="320" /></a></div><br /></div><div style="text-align: center;"><span style="font-family: times; font-size: medium;"><br /></span></div><div style="text-align: center;"><span style="font-family: times; font-size: medium;">Trees</span></div><div style="text-align: center;"><span style="font-family: times; font-size: medium;"><br /></span></div><div style="text-align: center;"><i><span style="font-family: times; font-size: medium;">(a work in progress..) </span></i></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><br /></span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><br /></span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><br /></span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><span> </span>The day you were diagnosed with Leukemia, the weather was full into one of those humid August days in Kentucky. While the doctor spoke to us, I remember watching the trees outside the large windows of the exam room. Our room overlooked a little stone courtyard, empty except for one woman who walked in circles talking on her cell phone for ten minutes and then disappeared. The trees were tall, spindly things with curling bark. A few yellowed leaves had dropped from the branches and scuttled along the grey cement riding the hot breeze. The trees were tall enough and full enough to create a little canopy above the courtyard. The sunlight cut through the leaves making a dappled pattern on the ground. The room in which we sat was icy cold, and I shivered, goosebumps creeping up my arms, each hair standing on alert for some sudden attack. I checked my heart rate on my Apple watch. I saw it climb, sit steady, and then slowly fall. I watched the trees and tried to breathe. Every particle of my body longed to fling myself out the window and into their arms. </span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><br /></span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><span> </span>It was to the trees I often ran as a child when the world was weighty, my heart claustrophobic in my chest. Our yard, a country yard where the yard only stopped at the edge of as far as my dad was willing to mow, contained so many trees I loved: the large dogwood with the perfect branches for sitting and climbing and the huge stately pine where I got my fingers sticky from the sap and made beds of pine needles or woodland “soup.” There was a dip in our yard surrounded on either side by much smaller trees that created a ceiling above--my own Lover’s Lane, and the exotic Mimosa, whose wild perfume and pink blossoms transported me farway during the summer. There was the dark trunk of the cherry tree and the tart cherries I had to race the birds for and the apple trees that produced the most sour green apples as the seasons hastened toward Fall. </span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><br /></span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><span> </span>I loved each of them like a little dryad. It was to the trees I would run to play, having no brothers and sisters of my own. I would lose myself in the world of fairies, King Arthur and Anne. On foggy, rainy days, the rolling land became Dartmoor and I, a female Sherlock Holmes. It was to my dogwood tree that I ran to sit, cradled in its branches to write stories of my own. </span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><br /></span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><span> </span>At Christmastime, my dad created magic in the trees with large, brightly colored bulbs. He would string them through the branches of my dogwood tree until it looked like the glittering top of a carousel. I loved to sit inside our room with the bay window that overlooked the dogwood tree and watch the lights and snow at dusk. When allowed, I would bundle up and sit in the dogwood tree surrounded by the glow of the lights, December air stinging my cheeks. I remember the feel of the warm bulbs in my mittened hands--the primary colors with chipped paint, how their minuscule warmth competed with the whipping breeze. </span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><br /></span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><span> </span>As I grew, my trees grew with me and I found new friends: the tall trees standing like centuries over the picnic tables at the camp I loved. The tree outside Cherry Hall at Western Kentucky University that turned the most brilliant shade of yellow I had ever seen each Fall, such a brilliant yellow that it made my heart ache in the strangest way, the Bradford Pear trees at the first house we owned together and their white blooms covered in a late spring snow--how I cried the day the electric company cut them down without warning. </span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><br /></span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><span> </span>There is a tree that stands alone on a hill on our family farm. It overlooks the pond my dad built many years ago, where his cattle now drink. Everyone in my family knows that as my tree. I don’t know why I love it, for I haven’t spent hours sheltered under its branches as I did the trees of my childhood, but something about it’s strength and beauty draws me to it. It leans slightly to one side but stands resolute. I photograph it, trying to catch each angle but none of the pictures I take conveys the smallness I feel as I stand at a distance and admire it. There in that smallness I find a kind of comfort that cools the burning in my heart for a few moments. It is here and yet not here and makes me now think of the tree Niggle worked to paint in Tolkien’s short story that I want to read over and over as I struggle with my own words and thoughts and the difficulty of the craft of capturing them. </span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><br /></span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><span> </span>I remember the trees that lined the winter walk to our wedding reception--the forest was so quiet that only the sound of a stream could be heard running under our feet. I was not cold on that January day, as your hand warmed mine. I remember the trees in our yard that calmed our babies as they cried from colic and how they would blink their dark eyes open at the trees above, suddenly silenced by the change of the air and feel of the breeze. My heart again pained by a queer ache of knowing and understanding the souce of their comfort. </span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><br /></span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><span> </span>I love the trees that line the edge of the farm near my parents home, the sudden transition from mown grass to woodland mystery. The trees that shelter two small graves of my best companions. I think about the wind ruffling white fur, the dart of a squirrel up a tree, and the tumult of barking and paws. I think of the day the orange earth swallowed the tiny white body curled so perfectly at peace, and the mad urge I had to run, scream, rescue him from the cold ground--how I just stood against that urge and watched, wept, and crept silently back to the house. </span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><br /></span></div><div style="text-align: left;"><span style="font-family: times; font-size: medium;"><span> </span>And so, the day the world tilted on its axis in such a sharp way, the day I had to work to coax each breath in and out of my body, the trees helped me again. Stand in the wind, bend with the breeze, they whispered. You will bend, you will not break, though your leaves yellow and fall. There is magic in the death of winter. Look for it. Be on the lookout for it. It will find you in the safety of the branches and in spring time, you will be reborn. </span></div><br />Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-85020251958964715842020-10-22T06:53:00.004-07:002020-10-22T06:54:10.014-07:00Hyper CVAD B: Day +1<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNhSVlBlJzmpFqgRpiJ36botJrmW7NiK-yCNtoVHOIsrrUFoFUg9YcClsF0VTkqE4uAkDuifvXvU8F4a8NQdPOY9XhJH-d3Lkg-BTvErBqDR54r5E0-K-PxkOF2hk3qZbycK-jnnPB7KY/s2048/IMG_3981.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNhSVlBlJzmpFqgRpiJ36botJrmW7NiK-yCNtoVHOIsrrUFoFUg9YcClsF0VTkqE4uAkDuifvXvU8F4a8NQdPOY9XhJH-d3Lkg-BTvErBqDR54r5E0-K-PxkOF2hk3qZbycK-jnnPB7KY/s320/IMG_3981.HEIC" /></a></div><div class="separator" style="clear: both; text-align: center;">(Kurt getting spinal chemo 10/21-Kurt has not had any leukemia cells in his CNS. These treatments are preventative, as the leukemia can migrate into those areas.)</div><br /><span style="font-size: medium;">After 14 great days at home, we are back at UK for Hyper CVAD B Cycle. The best part about this cycle is that we should be back home after 5 days! We already are looking forward to being back in our own bed after the first night inpatient, but we know this time will be a little different for us at home too. Kurt has normally spent his "feel bad period" in the hospital, so he will be at home for that this time. We pray he won't feel terrible, that the meds we have to treat nausea and other symptoms will work wonderfully, that he can rest well at home, and his counts will recover quickly again. I am praying I can juggle taking care of Kurt with things at home too. Homeschool provides some really great structure to our day, but it is very hard for me to "let it go" if other needs arise. </span><p></p><p><span style="font-size: medium;">Since I haven't give an update in a bit, I'll back up and do that now: </span></p><p><span style="font-size: medium;">We came home from Hyper CVAD A cycle on 10/8 after a 16 day stay. We were so excited that we got to leave earlier than we originally thought! Kurt's counts were recovering really well, so we were able to be released to come home. There was some talk of going straight into Hyper CVAD B, but his platelet counts were a little low, so we got to escape home for some rest before biopsy and the next cycle. </span></p><p><span style="font-size: medium;">On 10/13, Kurt had his bone marrow biopsy at the clinic. I got to watch this one! Kurt is such a trooper through all of these procedures. He has never complained about any of them. The PA who did this biopsy was amazingly quick. Kurt said it was probably the best one yet. On Friday (10/16), we went back in to the clinic to meet with Dr. Ramlal and discuss the results. We had been told that Kurt may not be in remission after just one cycle and that proved to be the case. He has 7% of blast cells still present in the marrow. </span></p><p><span style="font-size: medium;">Timeline: </span></p><p><span style="font-size: medium;">Admission: 95% blast cells in the marrow </span></p><p><span style="font-size: medium;">Post Induction: 15-20% blast cells in the marrow </span></p><p><span style="font-size: medium;">Post Hyper CVAD A: 7% blast cells in the marrow </span></p><p><span style="font-size: medium;">The good news is that the blast count continues to decrease. The bad news is that it is resistant to chemo because of the MYC8 rearrangement. Less than 5% blasts in the marrow is usually the threshold for remission, but we are shooting for 0 blast cells as we head into transplant. Dr. Ramlal explained that the plan forward is to complete the Hyper CVAD B cycle and do another biopsy on 11/6. Hyper CVAD B contains chemo drugs that Kurt's leukemia cells have never seen before. The hope is that these drugs will do the job and clean up this remaining bit of bad cells. If the blast cells are not decreased, we will add the drug Blinatumomab to the next two cycles. We have heard great things about this drug. It targets a specific antibody on the cancer cells and has gotten many people into a very strong remission with 0% minimal residual disease (MDR). We want to go into transplant with 0 blast cells to give Kurt the best shot at a cure! Kurt also still has another Hyper CVAD A/B cycle to go, plus chemo for conditioning prior to transplant, so more chances to kill the leukemia and keep it gone.</span></p><p><span style="font-size: medium;">We are still targeting December/January for transplant. All four of Kurt's siblings completed the bloodwork to see if they are a match for him. Those results started coming back while we were home and unfortunately all four siblings are only a half match. When looking for a stem cell match, doctors are looking at HLA markers on the cells. A perfect match has 10/10 of the same markers. Kurt's siblings only had 5/10 markers matching. The more perfect the match, the less chance of his body rejecting the cells and there is a slightly lower risk of Graft vs. Host Disease (GVHD). Now, we begin the search through the national registry (Be The Match). They even sent Kurt a little informational packet earlier in the week. There are around 30 million donors in the registry and Dr. Ramlal seems really confident Kurt will find a match there. We are praying we find a perfect match as quickly as possible. </span></p><p><span style="font-size: medium;">Several people have asked how they can get tested to see if they are a match. The best way to get tested is to go through Be the Match. You can go online and request a testing kit through them. If you are between 18-45, the whole process is free. The kit is a simple mouth swab that you do at home and mail back. If your DNA seems to be a match for a patient needing a transplant, you would then have some additional bloodwork for HLA typing. If you are registered with Be the Match, then you are a candidate for Kurt and many others in need! Donation is usually very similar to donating plasma--not a surgical procedure. You can read more about donating here: <a href="https://join.bethematch.org/s/landing?language=en_US&_ga=2.10536183.2121597481.1603373233-2021697188.1603373233&ref=supportjoin&refUrl=https%3A%2F%2Fbethematch.org%2FENDREFURL" target="_blank">Be The Match </a> </span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9T5t7z_kl5KHvBdRIInCPxyhR6-ObRX4-bGoms69f5FS03YkByriPhyyYojY6tZDSclYQ82_UUOcjfr83FhKn4hyYcNSoYQnLa8fxjcdHnOGMb6N4Le3uNZwy8AMiNOQlKC4N43O_WcQ/s2048/IMG_3968.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9T5t7z_kl5KHvBdRIInCPxyhR6-ObRX4-bGoms69f5FS03YkByriPhyyYojY6tZDSclYQ82_UUOcjfr83FhKn4hyYcNSoYQnLa8fxjcdHnOGMb6N4Le3uNZwy8AMiNOQlKC4N43O_WcQ/s320/IMG_3968.HEIC" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">So, we returned to UK yesterday for the start of Hyper CVAD B. Kurt had some pre-meds and fluids to prep for chemo today. He also had a spinal chemo treatment yesterday. Because of the issue with the headache he had last cycle, they did add steroids to the spinal chemo. We hope this will prevent headaches and help lessen inflammation. I snapped the picture above just to document how strong he is! Kurt has always hated needles, but he has done so well with all of the pokes. The oncologist who did the lumbar puncture yesterday is a big STL Cardinals fan, so he and Kurt had fun talking about baseball. I think that was a pleasant distraction. Kurt made sure to wear the Cardinals hat his mom made him because he knew Dr. Krem would notice! </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">This morning, Kurt started receiving chemo around 9:30am. He will have methotrexate over the next 24 hours via his PICC line. The next three days, he will get doses of Cytarabine and a couple of other drugs to prevent and lessen the side effects of the chemo drugs. Kurt has had methotrexate and cytarabine in the lumbar punctures, but he has never had them via his PICC line. We pray they will do the job of destroying the remaining 7% blast cells. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">As long as Kurt's body clears the methotrexate, we will be able to return home on Sunday! So far, he has tolerated each chemo drug we have encountered really well. We pray he will do the same with these drugs. Typical side effects are fatigue, nausea, and vomiting a couple of days after chemo. Kurt does have some neuropathy that has gotten a little worse from one of the other chemo drugs (vincristine), but we have been told it will go away after treatment. One of his worst days was actually the day we were discharged from the last cycle (10/8), when he had bone pain from the Neupogen injections to help boost his WBCs. He will have this drug or a similar one post-chemo this time, so we pray the bone pain will either not show up or will be as minimal as possible. Thankfully, it went away pretty quickly after the last injection. </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">Thank you for reading this crazy-long update and for praying with us! If you would like more information about stem cell donation, feel free to message me. As always, information about our meal train, etc are located on the right side of this page. We could not do this without your support! We are so thankful for all the meals, the household items, goodies to keep the kids busy, cards, texts, and words of encouragement. Your prayers mean the most to us and fill us with such joy and hope! You are a blessing to us! </span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;">-K and P</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-size: medium;"><br /></span></div><br /><span style="font-size: medium;"><br /></span><p></p>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com1tag:blogger.com,1999:blog-5093408385678445557.post-36796026791733350702020-10-05T07:43:00.003-07:002020-10-05T07:55:43.450-07:00Hyper CVAD-A, Day #13 <p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMOEpc71EJhGizmLE3vO7nCSwSJf7DNPsv8iEqLvmJrit9xc3i3MgH3XVNPkv0jPavaCJC8qxEZ9ZUZp9d47ezWCBi-IbjMAl-dkKqfHhEAwGF2hOZGVpYIhgWoY7h9UmRpifH-yeTjs0/s2048/IMG_3786.HEIC" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMOEpc71EJhGizmLE3vO7nCSwSJf7DNPsv8iEqLvmJrit9xc3i3MgH3XVNPkv0jPavaCJC8qxEZ9ZUZp9d47ezWCBi-IbjMAl-dkKqfHhEAwGF2hOZGVpYIhgWoY7h9UmRpifH-yeTjs0/s320/IMG_3786.HEIC" width="320" /></a></div><span style="font-family: times; font-size: medium;">Hyper CVAD-A, Day #13 </span><p></p><p><span style="font-family: times; font-size: medium;">We are over half-way through this next cycle of chemo. Best of all, the chemo part is finished! Because of Kurt's residual disease on the last bone marrow biopsy, this is basically "Induction #2." The goal is still to get him into remission and to keep him there. The end goal is now stem-cell transplant after three more Hyper CVAD cycles. For this first cycle, much like the last induction, patients typically remain inpatient for the entire duration of the treatment. For Hyper-CVAD cycles that cycle is usually 21 days. We remain hopeful that if Kurt's counts recover quickly, they may be generous and let him go home early, but we aren't holding our breath! </span></p><p><span style="font-family: times; font-size: medium;">With this cycle of chemo, the bulk of the treatment was administered the first 4 days. On day #11, he had a final treatment of vincristine and started another 4-day round of steroids. Now, it's just a waiting game for his counts to recover enough to have the next biopsy. Right now, his neutrophils (those beautiful infection fighting cells) are 0. We need them to come up to around 500 for biopsy and discharge. It's great that the cell counts drop--that means chemo is working! Now, we just need them to rebound. In order to help his counts come up, he is receiving a daily injection to help boost cell production. </span></p><p><span style="font-family: times; font-size: medium;">This cycle of chemo was a little bit more rough than the first (as anticipated), but Kurt has really handled things so well. Big challenges this cycle have been a headache that is more positional in nature and some mild nausea/vomiting. The mystery headache has had everyone scratching their heads. It worsens when Kurt is sitting upright, but completely disappears when he is laying flat. The most likely cause is the spinal chemo. Spinal injections are notorious for headaches and chemo in that area can cause irritation and inflammation. However, being the tricky patient that he is, Kurt's headache didn't begin until almost 48 hours after the spinal injection, so we can't be sure that is the cause. He had some fluid on his ears, which has been treated with antibiotics, and has almost felt as though it was muscular in his neck too. Thankfully, his CT scan was perfectly clear and the headache seems to be growing less prevalent each day. In the future, the oncologists will administer some steroids with the spinal chemo to see if it will prevent this from happening. Massage therapy might also be stopping by. What a treat! </span></p><p><span style="font-family: times; font-size: medium;">Last week, Kurt also had some nausea and vomiting one afternoon. I had gone down to try to meet a Door Dasher (our food was lost and never arrived--which Kurt said was God clearly knowing he wasn't going to be able to eat it!). I called up to the room to let him know and he told me he wasn't feeling well. By the time I got to the floor and rounded the corner, I could hear him. The nurses were talking--"Oh, that's Mr. Johnson." If you have ever been lucky enough to be around me when I have complained about Kurt's noisy vomiting, you'll know he could be heard clearly in the hall. We often have joked that he almost yells when he vomits. This loud vomiting trait seems to be hereditary, as Kurt's dad and brothers also demonstrate this wonderful quality. Shortly after we were married, Kurt got food poisoning during a trip to Seattle and I heard him vomit for the first time. Needless to say, I stood outside the bathroom door crying and asking if I should call 9-1-1. Now, I know what's up and quickly let the nurses know, "he's a loud puke-er." They agreed! Thankfully, it seems to have been brought on by an empty tummy (he napped through lunch after the spinal chemo that day) and, after a dose of meds, went on to eat a full dinner and has felt fine since. He joked about how loud he was and took it all in stride. "Welp, chemo is working" was one of his first sentiments. </span></p><p><span style="font-family: times; font-size: medium;">It's so hard to be stuck in the hospital, watching the cars on the street below, students walking to class, seeing the football stadium fill (only to 25%) and empty...life going on outside of these walls. We can find joy in the stillness of it all though. I am thankful for this time together. It isn't what we would choose, but we have been able to laugh until we've cried at each other's silliness, watch movies together, have long conversations, laugh at the past, and plan for the future in the face of this huge mountain before us. We have a deep hope and a joy that cannot be disturbed by the ripples on the top of the water. I am not making light of what we are going through by any means. Some days are really hard--seeing our kids over Facetime with anxious faces, worn out eyes, missing them and "normal" days. We are grieving life that was, life without the word Leukemia in it. We are missing our sweet dogs we lost this year. We are trying to process this whirlwind diagnosis that literally turned things upside down overnight. While we laughed later over Kurt's loud vomiting, I stood outside his bathroom door, fist on the wall, crying over the suffering, heartsick for him. And yet, we find God with us in the midst of all this. We hear His gentle whispers. We see Him working for us, using the hands and feet of others to hold us up. I feel like Moses in desert when Aaron and Hur held up his hands. We are thankful for those holding up our hands during this battle. We couldn't do this alone. </span></p>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-81962625430986216582020-09-18T13:24:00.000-07:002020-09-18T13:24:24.895-07:00Carry the Fire <p style="text-align: center;"> Sometimes we just don't get the answers we were wanting, but that doesn't mean God has left us for one moment or that He isn't working to bring about healing in a way we didn't expect. </p><p style="text-align: center;">Kurt had his followup appointment to go over the results of the biopsy on day 29 of induction. Unfortunately, there was some residual residual leukemia in the bone marrow. The more interesting information regarding the biopsy was that the oncologist realized that these cancer cells have a "rearrangement" called MYC 8. This is a translocation within the cancer cells that can make them more aggressive and more prone to relapse. We didn't see this initially because it takes some super sensitive testing to look for it. The good thing is that the first biopsy to show the MYC 8 noted 12.5% and that number dropped to 1% with treatment. It did respond to chemo, but more is needed. Because of the presence of MYC, the course of Kurt's treatment will be pretty altered from what we thought. Instead of three years of chemo, attempting to avoid a transplant. He will now be on a transplant track. </p><p style="text-align: center;">Next Wednesday, Kurt will be admitted to start what will be 4 rounds of different and a bit more intense chemo called Hyper CVAD. The cycles of chemo are classified into A and B. We were told the B cycles are "harder" than the A. For the first cycle, Kurt will need to remain inpatient for 14-21 days. They need to see how he reacts to the new drugs and monitor him more closely. His discharge date will depend on how quickly his counts recover (a quicker recovery means discharge closer to 14 days). They will also be be able to give him medicines to help his counts recover with these chemo cycles. For the remaining 3 cycles, he will probably be inpatient for 5(ish) days and then home through the treatment and recovery. Of course, hospital stays and being able to remain home depend on a lot of things, but we are praying he can be home as much as possible! The cycles will progress A, B, A, B. </p><p style="text-align: center;">The goal of the Hyper CVAD is to get him into remission. The oncologist said she expects him to be in remission after two rounds...possibly after the first. There are also other drugs specific to B-Cell ALL they can use to get remission too, if these were to fail. As of now, Kurt won't be participating in the drug trial but the good news is that the drug in the study (inotuzumab) is something he can still take if needed. </p><p style="text-align: center;">Following the 4 cycles of Hyper CVAD, Kurt will move forward with a stem cell transplant. We don't know much details about this, as the transplant coordinator will meet with us next week. Thankfully, he has 4 amazing siblings who will go through the process to find out of they are a match. His best chances at a match come from siblings! They told us usually 1 out of 4 siblings are a great match, so we are praying one of them will be as perfect of a match as we could dream of! We don't have a firm timeline, but the oncologist mentioned the possibility of transplant around December/January. </p><p style="text-align: center;">So many things change quickly, so I am sure some of this could be revised in the future. We are still processing all this information and still have a lot of research and learning to do. It isn't what we wanted or expected to hear, but we are trusting that God is leading us down this path for a purpose. We believe that purpose is healing. I was so encouraged when I read the story of another B-Cell ALL patient who had a transplant at 41 and is now 71 years old! There are lots of risks with transplant and it certainly is the "scarier" thing we had hoped to avoid, but it also affords a chance at a cure. </p><p style="text-align: center;">The coming days are going to be stressful and long. We will be in for an intense phase of treatment and transplant until the beginning of 2021, but we know God will carry us through. One of the first things I thought was that we have so much help! Friends and family have seen us through this first phase, and we know we will continue to have that support going forward. We are so very thankful! I can't even express the joy that springs up in my heart when I think about each gesture of love. </p><p style="text-align: center;">Please continue to pray for Kurt. Pray that the treatments will work perfectly and that he will achieve the highest degree of remission. Please pray for his body, as he endures the treatments, and that he will retain his joy that has been unquenchable so far. Pray that we can find a perfect match for the transplant and that all will go smoothly in preparation for that process. Continue to pray for our children: each has dealt with anxiety and grief in different ways, but it as been especially hard for Hazel. Please pray that my own chronic health issues will remain in control and that I can be there to help and support Kurt. Pray we fix our eyes on Jesus and continue to trust Him. He has made a way for us so many times when there seemed to be no way--from adoption, to my own health issues, to Leukemia and we know He will continue to do so. </p><p style="text-align: center;">One song that I have had on repeat during this time is Andrew Peterson's "Carry the Fire." One section of the lyrics say, </p><p style="text-align: center;"><span style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px; text-align: left;"><br /></span></p><p style="text-align: center;"><br /></p><div class="ujudUb" jsname="U8S5sf" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px; line-height: 1.58; margin-bottom: 12px;"><span jsname="YS01Ge">I will hold your hand love</span></div><div class="ujudUb" jsname="U8S5sf" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px; line-height: 1.58; margin-bottom: 12px;">As long as I can, love</div><div class="ujudUb" jsname="U8S5sf" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px; line-height: 1.58; margin-bottom: 12px;"><span jsname="YS01Ge">Though the powers rise against us</span><br /><span jsname="YS01Ge">Though your fears assail you</span><br /><span jsname="YS01Ge">And your body may fail you</span><br /><span jsname="YS01Ge">There's a fire that burns within us</span></div><div class="ujudUb" jsname="U8S5sf" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px; line-height: 1.58; margin-bottom: 12px;"><span jsname="YS01Ge">And we dream in the night</span><br /><span jsname="YS01Ge">Of a city descending</span><br /><span jsname="YS01Ge">With the sun in the center</span><br /><span jsname="YS01Ge">And a peace unending</span></div><div class="ujudUb" jsname="U8S5sf" style="background-color: white; color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px; line-height: 1.58; margin-bottom: 12px;"><span jsname="YS01Ge">I will carry the fire for you</span></div><div class="ujudUb" jsname="U8S5sf" style="background-color: white; line-height: 1.58; margin-bottom: 12px;"><span style="background-color: transparent; font-size: 14px;"><span style="color: #222222; font-family: Roboto, arial, sans-serif;"><a href="https://youtu.be/hahX10ofNYY">https://youtu.be/hahX10ofNYY</a></span></span></div><div class="ujudUb" jsname="U8S5sf" style="background-color: white; line-height: 1.58; margin-bottom: 12px;"><span style="background-color: transparent; color: #222222;"><span style="font-family: times;">We will continue to carry the fire, trusting in Christ and His Kingdom--trusting in Him for earthly healing from Leukemia. </span></span></div>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com5tag:blogger.com,1999:blog-5093408385678445557.post-56334412168157286232020-09-03T09:41:00.000-07:002020-09-03T09:41:22.602-07:00Ways to help...<p> <span> Several people have asked for ways to help our family during Kurt's Leukemia treatment. Since I know there are several people who read the blog and are not on Facebook, I wanted to share that information here. </span></p><p>If you are on Facebook, our small group has created a Facebook group called, "Ministry to Serve Johnson Family (Kurt and Priscilla). <a href="https://www.facebook.com/groups/669261783799732">https://www.facebook.com/groups/669261783799732</a></p><p>In that group the following ways to help have been created/shared: </p><p>Amazon Wish List for household needs and encouragement for the children:</p><p><a href="https://www.amazon.com/hz/wishlist/ls/8VIHTFQSIF2G?ref_=wl_share&fbclid=IwAR0K9J8DO98xpORZY4cu1WTF4NhMHsxV1apZH-21ANMDpEKpFRIEDQSTpi0">https://www.amazon.com/hz/wishlist/ls/8VIHTFQSIF2G?ref_=wl_share&fbclid=IwAR0K9J8DO98xpORZY4cu1WTF4NhMHsxV1apZH-21ANMDpEKpFRIEDQSTpi0</a></p><p>Meal Train Signup: </p><p><a href="https://www.mealtrain.com/trains/mnv61l?fbclid=IwAR29ZMtESA9Gr2py--2GhgV3SULTXEZ7ohjitqipG9DQKcUf1r6srX9asVM">https://www.mealtrain.com/trains/mnv61l?fbclid=IwAR29ZMtESA9Gr2py--2GhgV3SULTXEZ7ohjitqipG9DQKcUf1r6srX9asVM</a></p><p><br /></p><p>Sign up for ministry to the children: </p><p><a href="https://www.signupgenius.com/go/20f0d45abaf28a4f49-johnson">https://www.signupgenius.com/go/20f0d45abaf28a4f49-johnson</a></p><p><br /></p><p>Go Fund Me for Medical Expenses: </p><p><a href="https://www.gofundme.com/f/xu5g5-kicking-cancer-where-it-hurts?utm_medium=sms&utm_source=product&utm_campaign=p_susi-sms-welcome&fbclid=IwAR0hkcV6oRqJGkwGWCwg2v2he5q7AL76icrHGungN0zQONBuDxeHI_KSpjw">https://www.gofundme.com/f/xu5g5-kicking-cancer-where-it-hurts?utm_medium=sms&utm_source=product&utm_campaign=p_susi-sms-welcome&fbclid=IwAR0hkcV6oRqJGkwGWCwg2v2he5q7AL76icrHGungN0zQONBuDxeHI_KSpjw</a></p><p><br /></p><p>Friends and family have been such a blessing to us! Mabelle told me recently, "So many people must love us and want to cheer us up while Dad is getting better." We have felt so loved. Above all, we appreciate your prayers most of all. Thank you for supporting us during these difficult days. </p>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-61468677714170729142020-09-03T09:31:00.001-07:002020-09-03T09:31:11.609-07:00Weary Feet and Gospel Comfort<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjowWHiIWHM_LJbL-PPjNUwHRc7sQVMXkHxOackFm7NeBpeWpVnGTEM588vEnFIiCTXMt-VGECrmxLl62qspoxeuOCrhJa8U6FS2SM5RZU76wj9m1Loduzxc6h1V0RRX9isKaZDo8sDYmM/s2048/IMG_3393.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjowWHiIWHM_LJbL-PPjNUwHRc7sQVMXkHxOackFm7NeBpeWpVnGTEM588vEnFIiCTXMt-VGECrmxLl62qspoxeuOCrhJa8U6FS2SM5RZU76wj9m1Loduzxc6h1V0RRX9isKaZDo8sDYmM/s320/IMG_3393.HEIC" /></a></div><br /> <span style="font-size: medium;"><span style="font-family: times;"> Yesterday, Kurt reached a milestone in Induction: he received his last PICC line chemo drugs for this phase! The photo above shows him getting the Daunorubicin. As you can see, this med is a red/pink color. We are now in the home stretch! Baring infection or any hiccups, Kurt should be discharged on Wednesday (9/9) after a bone marrow biopsy and spinal Methotrexate. </span></span><p></p><p><span style="font-family: times; font-size: medium;"><span> On Sunday, September 6th, we will be having a day of prayer for Kurt, as we approach that important biopsy day. People from our church small group and church staff have committed to pray from 8AM-8PM on Sunday. We would love to have as many people involved in this as possible. You can commit to pray on our Facebook group. I know it will be such an encouragement to our family to see prayer times being shared there. </span></span></p><p><span style="font-family: times; font-size: medium;"><a href="https://www.facebook.com/groups/669261783799732/685855495473694/?comment_id=685872635471980&notif_id=1598991075208562&notif_t=group_comment&ref=notif">https://www.facebook.com/groups/669261783799732/685855495473694/?comment_id=685872635471980&notif_id=1598991075208562&notif_t=group_comment&ref=notif</a></span></p><p><span> <b> </b></span><b><span style="caret-color: rgb(5, 5, 5); color: var(--primary-text); font-family: times; font-size: large;">We are praying for two things specifically:</span><span class="Apple-converted-space" style="caret-color: rgb(5, 5, 5); color: var(--primary-text); font-family: times; font-size: large;"> </span></b></p><div class="bi6gxh9e" style="caret-color: rgb(5, 5, 5); color: #050505; margin-bottom: 8px; text-size-adjust: auto;"><span class="oi732d6d ik7dh3pa d2edcug0 hpfvmrgz qv66sw1b c1et5uql jq4qci2q a3bd9o3v knj5qynh oo9gr5id" style="-webkit-font-smoothing: antialiased; color: var(--primary-text); line-height: 1.3333; max-width: 100%; min-width: 0px; overflow-wrap: break-word; word-break: break-word;"><span style="font-family: times; font-size: medium;"><b>-The biopsy on September 9th will show that Kurt is in remission with no minimal residual disease shown.<span class="Apple-converted-space"> </span></b></span></span></div><div class="bi6gxh9e" style="caret-color: rgb(5, 5, 5); color: #050505; margin-bottom: 8px; text-size-adjust: auto;"><span class="oi732d6d ik7dh3pa d2edcug0 hpfvmrgz qv66sw1b c1et5uql jq4qci2q a3bd9o3v knj5qynh oo9gr5id" style="-webkit-font-smoothing: antialiased; color: var(--primary-text); line-height: 1.3333; max-width: 100%; min-width: 0px; overflow-wrap: break-word; word-break: break-word;"><span style="font-family: times; font-size: medium;"><b>-That Kurt will stay in remission permanently!</b></span></span></div><div class="bi6gxh9e" style="caret-color: rgb(5, 5, 5); color: #050505; margin-bottom: 8px; text-size-adjust: auto;"><span class="oi732d6d ik7dh3pa d2edcug0 hpfvmrgz qv66sw1b c1et5uql jq4qci2q a3bd9o3v knj5qynh oo9gr5id" style="-webkit-font-smoothing: antialiased; color: var(--primary-text); line-height: 1.3333; max-width: 100%; min-width: 0px; overflow-wrap: break-word; word-break: break-word;"><span style="font-family: times; font-size: medium;"><b> </b></span></span></div><div class="bi6gxh9e" style="caret-color: rgb(5, 5, 5); color: #050505; margin-bottom: 8px; text-size-adjust: auto;"><span class="oi732d6d ik7dh3pa d2edcug0 hpfvmrgz qv66sw1b c1et5uql jq4qci2q a3bd9o3v knj5qynh oo9gr5id" style="-webkit-font-smoothing: antialiased; color: var(--primary-text); line-height: 1.3333; max-width: 100%; min-width: 0px; overflow-wrap: break-word; word-break: break-word;"><span style="font-family: times; font-size: medium;"><br /></span></span></div><div class="bi6gxh9e" style="caret-color: rgb(5, 5, 5); color: #050505; margin-bottom: 8px; text-size-adjust: auto;"><span class="oi732d6d ik7dh3pa d2edcug0 hpfvmrgz qv66sw1b c1et5uql jq4qci2q a3bd9o3v knj5qynh oo9gr5id" style="-webkit-font-smoothing: antialiased; color: var(--primary-text); line-height: 1.3333; max-width: 100%; min-width: 0px; overflow-wrap: break-word; word-break: break-word;"><span style="font-family: times; font-size: medium;"><span> </span>Our family had a bit of a rough start to the week, but we saw God work mightily through these situations to bring comfort and care. On Sunday, our sweet poodle, Mattie, passed away. She was 17 years old and, while we expected her life to end sooner than later, her passing came at a hard time for each of us. We lost our westie, Alistair, in June. He battled lymphoma for 1.5 years. The day after Kurt was admitted to the hospital, Mattie saw the vet and they suspected she had some type of cancer. The vet gave her about a month to live. While we hoped she would make it until Kurt got home, her condition worsened rapidly. I cannot yet divulge all the details of the day, but God worked out each moment for us in such a loving way. Mattie passed peacefully at home with the help of Lap of Love and Dr. Kendra Healy (as Alistair did) and is now resting beside her brother at my parents' farm. We will miss her greatly. She was the most lovable dog and had the biggest personality. For her gravestone, we chose to write this: "She found the family who needed her the most." She found us as a stray 14 years ago, and we are thankful for each day we had with her. </span></span></div><div class="bi6gxh9e" style="caret-color: rgb(5, 5, 5); margin-bottom: 8px; text-size-adjust: auto;"><span style="font-family: times; font-size: large;"><div class="separator" style="clear: both; color: rgba(0, 0, 0, 0); font-weight: bold; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp1s_8C1UeUjHR1MQayk-IRs5NNvMUIXMY7CVLRowFuAg24BgG-XsAffBjkcxD4-dMg_a1RDhGuCe3jVt8m0Ap4GnGdumiJj7TkDUNQpgoMOrKFUqz6Oe1tmq888yFQBxQ1Cw89ZIpl-c/s1705/IMG_3305.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1137" data-original-width="1705" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp1s_8C1UeUjHR1MQayk-IRs5NNvMUIXMY7CVLRowFuAg24BgG-XsAffBjkcxD4-dMg_a1RDhGuCe3jVt8m0Ap4GnGdumiJj7TkDUNQpgoMOrKFUqz6Oe1tmq888yFQBxQ1Cw89ZIpl-c/s320/IMG_3305.JPG" width="320" /></a></div><br /><div class="separator" style="clear: both; color: rgba(0, 0, 0, 0); font-weight: bold; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA16Q_hj003CuxGybXZYKAulcgErUG1-_mAFEnGRJuZ893LGQSmTON1f7vhJHzd3yVCbGFki0gLegnIeHq2BnrP9dXg6DHOkPHydw4WUrk-ogLgk7OtUBU_gnIlLAwkN07Yl_0YhVGUs4/s1931/IMG_3312.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1287" data-original-width="1931" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA16Q_hj003CuxGybXZYKAulcgErUG1-_mAFEnGRJuZ893LGQSmTON1f7vhJHzd3yVCbGFki0gLegnIeHq2BnrP9dXg6DHOkPHydw4WUrk-ogLgk7OtUBU_gnIlLAwkN07Yl_0YhVGUs4/s320/IMG_3312.JPG" width="320" /></a></div><div class="separator" style="clear: both; color: rgba(0, 0, 0, 0); font-weight: bold; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span style="color: rgba(0, 0, 0, 0); font-weight: bold;"> </span><b style="color: rgba(0, 0, 0, 0);"> </b>On Tuesday afternoon, we got a call from Kurt's parents saying that Max had fallen and cut his forehead on a table in our house. While the cut wasn't large, it did looked deep. Our immediate fear was that we would be forced to take him to the ER for care and be exposed to all those germs right before Kurt was scheduled to be discharged. After about an hour spent on the phone talking with nurse and doctor friends, we were able to make some arrangements so that Max got three beautiful stitches at home! What a huge answer to prayer! Because of this, I was able to continue to stay with Kurt at the hospital, grandparents and our children didn't have to risk COVID exposure and potentially compromise Kurt's care at home, and Max was taken care of. He was very brave and only cried out once when the wound was cleaned. He is doing well and I think he enjoyed all the attention and fuss from his sisters too! <br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjbBuTOw0gGtp2vsmbFw7zOIbtSP_aLIKfNXjHgdQDeZORIEHf4jTHB5Oh-T_aalA5TYeayk9R_RZ0r5L8LV6w230SA0Du-SoGMCT_aPaCa2_JumY4qezpSNp5I7ACqz8cx8rQ3fboxS4/s2048/IMG_3388.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjbBuTOw0gGtp2vsmbFw7zOIbtSP_aLIKfNXjHgdQDeZORIEHf4jTHB5Oh-T_aalA5TYeayk9R_RZ0r5L8LV6w230SA0Du-SoGMCT_aPaCa2_JumY4qezpSNp5I7ACqz8cx8rQ3fboxS4/s320/IMG_3388.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;">Iron Man pjs and 3 stitches above the left eyebrow</div><br /><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><span> God sees our needs, knows our prayers before we can even utter them, and it has been amazing to see how He is continually working for our good, even when a fallen world threatens us with all sorts of problems. It seems as though we have had "one hard thing after another" but on the flip side, we have also had one good thing after another. When I have an eternal, gospel perspective, I am able to see all the blessings and God's goodness more clearly, then when I turn inward and focus on my own discomfort and woes. God is with us in our grief. Having experienced grief and physical discomfort more fully than anyone else, Jesus is able to meet us and comfort us as we walk these tough valleys of life. Each day really is filled with His mercies and grace anew. It is a powerful thing when He moves mountains and we can see Him working. We know He always is, but the glimpses we get into that work spur us on for the days ahead. In the midst of all the hard things over the last few months, He has also filled us up with joy and peace that cannot be disturbed. Today, we pick up our weary and dusty feet and continue onward with renewed strength and hope in Him. </span><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div></span></div><div class="bi6gxh9e" style="caret-color: rgb(5, 5, 5); color: #050505; margin-bottom: 8px; text-size-adjust: auto;"><b style="color: rgba(0, 0, 0, 0); font-family: times; font-size: large;"><br /> </b></div>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-36667288597578993632020-08-27T07:51:00.001-07:002020-08-27T07:52:31.783-07:00Induction Day #16<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIwVTteUZD2-XongfuHZmVGkPYoCycNz0bSd-Z5ijzsxJJboy_OBkzkPTkZ1rzAENN35LJq-nnwwwDi6Y4xOS1lliR1MX-5-SlwW-GmYXjzFDA8cauwjim8a6rze5_giQ1yTmcTN4q_Gc/s2048/IMG_3257.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIwVTteUZD2-XongfuHZmVGkPYoCycNz0bSd-Z5ijzsxJJboy_OBkzkPTkZ1rzAENN35LJq-nnwwwDi6Y4xOS1lliR1MX-5-SlwW-GmYXjzFDA8cauwjim8a6rze5_giQ1yTmcTN4q_Gc/s640/IMG_3257.HEIC" /></a></div><br /> <span> I wanted to hop on and give everyone an update on Kurt's progress so far. He is on day #16 (out of 29) of the induction phase. Yesterday (Day #15) was a chemo day. He received two chemo drugs through his PICC line and restarted steroids for another 7 day period. His clotting factors were low again, so he received two bags of "Cryo," which is basically the individual clotting factors pulled out from the plasma. It's pretty amazing how they can separate blood! The gold liquid you see in the IV bag above is the Cryo. This morning, his hemoglobin was also low, so he is currently getting some blood as well. Transfusions are pretty routine with Leukemia treatment, as the body is unable to make new blood cells. <span> </span></span><p></p><p><span><span><span> Earlier in the week, we had noticed that Kurt's heart rate was higher and his blood pressure lower. We learned that his sodium was low. The doctors were able to alter the sodium levels in his fluids and both the heart rate and blood pressure improved. Fluids in the body need to bind with sodium to be retained and because his sodium was low, he was essentially still dehydrated while receiving all those fluids! We are thankful it seems to have been an easy fix. </span><br /></span></span></p><p><span> Kurt has been feeling well this week. We have found that frequent snacks helped to maintain his glucose levels (though they will go up with steroids this week) and nausea. He hasn't been nauseous since the new snack regimen. He is eating really well and, besides some fatigue. is doing great! This is such a blessing to us. He lost a little weight but the doctor said this morning that weight loss could have been from the dehydration. He was back to his baseline weight today!! Our prayers are being answered daily. Chemo does have a cumulative effect, so we keep praying that he will continue to tolerate things very well. </span><br /></p><p><span> </span>Hospital life isn't very entertaining, but we have enjoyed movies, books, and just being together. We love getting updates from the kids. They have started making "Movies" for us using Hazel's ipod. We've enjoyed watching "Mighty Max" defeat the "Pantser" (Hazel as the villain) along with Police Woman Mabelle. Max is finally mastering riding his bike with training wheels (he hated it for the longest time....😜) and the girls taught him how to play Mario Kart on the Nintendo Switch. He's pretty proud of himself and gets embarrassed when he tells us he won a race. He covers his eyes and I can see his dimples pop out! The girls have been enjoying reading at home. Hazel loves to call and talk over Harry Potter with me, which I love. We will certainly be more than ready to be home with them. </p><p><span> We did get to talk to the discharge nurse this week about what things will look like when Kurt comes home. Lots of cleaning, hand washing, nurse visits and clinic appointments to come! Some chemo will require Kurt to be admitted for 3-5 days, but those admissions will be mapped out for us and we will have time to prepare. It was so refreshing to talk about getting out of here! I get to learn how to flush Kurt's PICC line, which sounds fun to me and probably a little scary to him! </span><br /></p><p><span><span> Kurt's treatment plan is a three year plan. It seems daunting to think about three years of this, but we will take one day at a time and we are thankful for each one! Kurt is in the first phase of treatment "induction" now. The goal of induction is remission. Without remission, induction is repeated--we are really praying for remission the first time. After induction, we move to either the trial drug phase (if he is selected--we will know this after the bone marrow biopsy at the end of induction) or to Consolidation Therapy. Consolidation therapy involves more chemo treatments over a 56 day period. Consolidation is followed by Interim Maintenance Therapy for 49 days, Delayed Intensification Therapy for 50 days, and then Maintenance Therapy for the remainder of those three years. The intensity of treatments will decrease over time, but as long as Kurt is on some type of chemo, his immune system will be impacted. This will grow less over time, but is a huge concern to us as the world deals with COVID and we approach flu season. Even the slightest cold could be very difficult for him to handle--especially right now. </span><br /></span></p><p><span><span><span> Several people have asked us about the need for a transplant, but we really don't know if he will need one at this point. Several factors go into transplant decisions (genetic factors/chromosome mutations and translocations, response to chemo, remission/relapse). So far, Kurt doesn't have any chromosome mutations, but we do still have some DNA testing pending. If he does get a transplant, that will alter the course of treatment. It's nice to have a "road map" forward but we know that any illness, reaction to drugs, relapse....could mean a deviation from the path. Leukemia can be a beast because things can really turn on a dime quickly. Jesus is really teaching us to live with thankful hearts in each moment. </span><br /></span></span></p><p><span> We appreciate all of your prayers and encouragement. Please continue to pray for protection from infection or complications, no side effects from chemo drugs, for chemo to work perfectly, and for Kurt to be in remission and stay there! </span><br /></p><p>With Love, </p><p>Priscilla </p><p><span><span><br /></span></span></p>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-10149913840676798872020-08-26T14:18:00.001-07:002020-08-26T14:22:35.648-07:00Let Your Light Shine <p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu50jLdXinKw0DddS6VMucAQccvs2-ozMOb2AUIdfQt-LCYfZvEtyU0YzZJMtZgnCAI2gWgyk3Yw97azlxNC3hcquFfdJefPhJmQm5eQpc0o5FgrthFI1NEF95rNTGvuzuKj1rqUi5SWU/s800/81e7e7bf9b776c7f912abe227fde13b6.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="600" data-original-width="800" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu50jLdXinKw0DddS6VMucAQccvs2-ozMOb2AUIdfQt-LCYfZvEtyU0YzZJMtZgnCAI2gWgyk3Yw97azlxNC3hcquFfdJefPhJmQm5eQpc0o5FgrthFI1NEF95rNTGvuzuKj1rqUi5SWU/s640/81e7e7bf9b776c7f912abe227fde13b6.png" width="640" /></a></div><br /> "You are the light of the world. A city set on a hill cannot be hidden. Nor do people light a lamp and put it under a basket, but on a stand, and it gives light to all the house. In the same way, let your light shine before others, so that they may see your good works and give glory to the Father who is in heaven." Matthew 5:14-16<p></p><p><br /></p><p> <span style="font-size: medium;"> </span><span style="font-size: medium;">One of the first songs I learned in Sunday school was "This Little Light of Mine." As we twirled our chubby fingers in the air and sang as loudly as possible, did we realize with what boldness we sang out those words? We were going to let our "lights shine" no matter what! We certainly did not want Satan to "pppfffttt" it out and energetically stomped our feet to let him know we meant business. As an adult, I don't often sing that rousing tune, especially now that our children are a bit older and Max's favorite is "I love you Lord" (that boy melts my heart!), but we do frequently listen to the words of Matthew 5 on the Slugs and Bugs Sing the Bible Vol. 2. I found that song running through my head as I read the first few chapters of Matthew this morning. </span></p><p><span style="font-size: medium;"><span> </span>Recently, I have longed to be in the four gospels, longed to hear again the words Jesus spoke. There is a closeness there that I want to wrap myself in like a cozy blanket on a bleak winter's day. I paused today, as I read those familiar words again...let your light shine--shine so that others may see---giving God glory. When our lives took a sharp turn with the word "Leukemia," I immediately desired to know why. Why? Why our family? Why now? Why Kurt? And I didn't ask in a whining, woe is me attitude at that first moment, though I am sure on low days I will wrestle there and need to refocus on Christ, but I wanted to know what purpose this journey will serve for God's kingdom. I felt that if I knew, I could march forward in confidence. While I don't know all the reasons and may not see why God allowed this in our lives on this side of heaven, I know God has already challenged me in many ways to "let my light shine" for Him. There is something about that moment when life suddenly tilts on its axis--everything goes blurry and confused, and then suddenly you land on your new plane of existence. Some things become sharply clear. For me, the moment Kurt was diagnosed, I shook off any fears I had of sharing the gospel and being bold in love for others. The nervous butterflies are still there, but, below that, there is a steely resolve to be bold in the only hope I have, have ever had--in my savior. No matter what the "why" might be and no matter if I ever know it, I know that following Jesus and letting my light shine in the darkness through this and whatever else life might throw at us is worth it if it brings Him glory. </span></p><p><span style="font-size: medium;"><span> When you look at our journey, I hope you don't look at us as much as you look towards Jesus. Whatever "good works" we may do in our lives, the strength to do them and the very desires to do them, come from Christ. The good works are only good if they bring Him glory. And even though I will keep my light shining, sometimes the darkness comes very close. I cried out in the shower (why is the shower such a good place to cry?) that frankly, I just didn't want to have to do this. I just wanted to push pause and reset my world. I didn't want to keep picking up feet and take another step in the heavy quicksand pulling me down. I remembered what Jesus prayed before the cross, "My Father, if it be possible, let this cup pass from me; nevertheless, not as I will, but as you will." Jesus met me in my grief there and I know He understands my grieving heart better than anyone else can. I am learning to pray with a "nevertheless" daily, to talk to my Father and tell Him my requests, but to always add the "nevertheless" knowing His will is higher, better, and more desirable than my own. </span><br /></span></p><p><span style="font-size: medium;"><span> All of the grief, anxieties, worries, and normal human reactions to trauma still plague me. Knowing truth and choosing daily to follow Christ doesn't mean we are released from our struggle against our human nature, but when my eyes are trained on Him, I am able to see my grief, anxieties and worries in their proper sphere. I am able to see them as the temporal things they are and look beyond to a King and a Kingdom that offer eternal hope. Do I fail at this? Yes. Do I want to despair, give up, wail to the top of my lungs. Yes (and sometimes I do those things). But---the light... my little light shines...it grows in the darkness as I train my eyes on it, opening my pupils, driving back the darkness until the shadows disappear. I have hope in that even after Jesus wept in Gethsemane, walked the lonely road to the cross, and spent three days in darkness, LIGHT burst through, the stone was rolled away and He lives. </span><br /></span></p><p><span style="font-size: medium;">May that same light shine in us now and in the days to come. </span></p><p>-Priscilla </p><p><span><span style="font-size: medium;"> </span></span><br /></p>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com2tag:blogger.com,1999:blog-5093408385678445557.post-62015384685972405292020-08-20T09:14:00.000-07:002020-08-20T09:14:03.022-07:00Chemo, Rapunzel, and everlasting joy...<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv-wcpIA_Th2YZaNdzxpSKne07AAkuWVFdyIItnt3quXrUCGnaUxbanvW5vhQC2RgiLIOxFzz2iULXP-e3j12BfkMpe3xYKmr3B5ffYvW677dYsx1RIMpADDuILWgrbK-uSvuD0lwwtjE/s569/Rapunzeltower.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="526" data-original-width="569" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv-wcpIA_Th2YZaNdzxpSKne07AAkuWVFdyIItnt3quXrUCGnaUxbanvW5vhQC2RgiLIOxFzz2iULXP-e3j12BfkMpe3xYKmr3B5ffYvW677dYsx1RIMpADDuILWgrbK-uSvuD0lwwtjE/s0/Rapunzeltower.png" /></a></div> <p></p><p>Yesterday was day 8 of the induction process and it was also chemo day for Kurt. Thankfully, it was also the beginning of a 7 day break from steroids! In Leukemia treatment, steroids count as chemo too, but every couple of days he receives one or more of the "powerful" meds. Yesterday, Kurt received a dose of Methotrexate directly into his spine (he gets three of these treatments to protect his CNS during induction--one more to go!). He was also given vincristine and daunorubicin via his PICC line. Kurt did great during the administration of these medications and continues to prove that he really is Superman. </p><p>When the oncologists do the spinal injection of Methotrexate, they first take out some spinal fluid to be tested before injecting the medication. The results from Kurt's first spinal fluid tests were negative for any cancer cells in the CNS. This is great news! We pray that this proactive treatment will continue to protect those areas of the body. They left the tubes of spinal fluid on the computer desk to be picked up, so I had to snap a picture. His spinal fluid looked beautiful and crystal clear to me! </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH49rzC62VZKlN_Cej77tP65HdFtY1YFOGvTtwul1ruz3aO4JV1mqdlEE8GXywvgMsYUYgdjXMviSg6zO7XkoilHCtDlqXTvr6TMEHUcFLlYnSG-YSdmxFwuSXbbUuBJ8y31E_xIKlmlY/s2048/IMG_3200.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH49rzC62VZKlN_Cej77tP65HdFtY1YFOGvTtwul1ruz3aO4JV1mqdlEE8GXywvgMsYUYgdjXMviSg6zO7XkoilHCtDlqXTvr6TMEHUcFLlYnSG-YSdmxFwuSXbbUuBJ8y31E_xIKlmlY/s640/IMG_3200.HEIC" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">When Kurt was admitted, his blast cell count in his blood (the bad cells that shouldn't be there) was around 16,000. After 8 days of treatment, his blast cells were 10. Not 10,000---10! It is wonderful to see that the chemo is working and working quickly. The best way to really see what is happening with Leukemia cells is a bone marrow biopsy. Kurt will have another biopsy to determine remission on day 29. Measuring the blast cells in the blood does let us know chemo is working well and that there should also be a dramatic decrease in those cells in the marrow too. When Kurt has the biopsy on day 29, they will do MRD (Minimal Residual Disease) Testing on the bone marrow. This can measure how many cancer cells are in the marrow (1 out of 10,000--1 out of 100,000--1 out of 1,000,000). We are praying for no evidence of disease! </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">As his blast cell counts fall, so does his WBC. In a healthy person your WBC usually ranges from 4,000-10,000. If you are sick with an illness, your WBC rises. With Kurt's type of ALL, his WBC rose dramatically upon diagnosis. I think the highest count we saw before they started to drop was around 25,000. Some ALL patients are admitted with WBC's in the 100,000+ ranges. We are thankful his never got to that level. Even though he had a lot of WBCs, the ones his body was making were broken or immature. They were crowding out the healthy cells and making his RBCs low. Yesterday, Kurt's WBC was 1,000. This number will fall to zero over the next couple of days as the chemo impedes cell growth/kills cells. This is the time he is most vulnerable to infections and this is one of the reasons why he is hospitalized and watched so carefully during induction. He takes a lot of prophylactic medications to prevent infections too. He has also had two blood transfusions and probably has more to come to keep his RBC levels up. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Kurt's next big chemo day will be on day 15. He will receive the vincristine and daunorubicin again, along with restarting the steroid (Dexamethasone) for another 7 day period. So far, he is feeling really well. There has been some fatigue and a bit of nausea this morning, but he's doing great overall. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Looking out from the 11th floor has me feeling a bit like Rapunzel in her tower. Our family loves Disney's Rapunzel (Frying Pans, who knew?) and I keep thinking about her song at the very beginning of the film. She recounts all the things she does all day to keep busy. Who knows what skills Kurt and I may develop while we are here? Kurt's working on learning some tunes on his new Melodica and I have some hand-lettering supplies and some embroidery that I never seem to have time to work on at home. We have Bible studies, books, games...and yet our hearts long to be home. One thing chronic illness and now a journey with Leukemia has taught me is to cherish the ordinary days. Gifts from God we often take for granted are found in the simple daily tasks of an ordinary life. When I was younger, I was sure that I was destined for something great, something big, something people would notice. As I grew older and a little bit wiser, I realized that the greatest joys are in those normal moments of every day life--the joy of serving and not being noticed, in the quiet ways days easily flow into one another. These chaotic and strange days make me long for home---and not just my earthy home. I long for a home where the peace that floods those simple days will reign always. I have faith that God will rescue us from this "tower" and that we'll have some of those peaceful days again. I also have great joy and comfort in knowing that even if those days don't come again on this side of Heaven, I'll find them again there and they will never pass away. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><p><br /></p>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-33094093589005838092020-08-14T09:37:00.000-07:002020-08-14T09:37:17.255-07:00View from the top <p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV-j91oZpLzW0h3ZIDYct39or4CXNAnLPlV3Ked9U1fYBsPqyk0E5172vkH0CPkFjQPQmE3sdSVzeMV_zHRzo-Iqy29xdpFNsVUPx1aMq6zuqsvRqxAxBXR90Em3C9fiWiCAnFjM_MrSk/s3780/AFCEFE05-20C9-47DA-895B-84CC4820F2C6.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3780" data-original-width="3024" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV-j91oZpLzW0h3ZIDYct39or4CXNAnLPlV3Ked9U1fYBsPqyk0E5172vkH0CPkFjQPQmE3sdSVzeMV_zHRzo-Iqy29xdpFNsVUPx1aMq6zuqsvRqxAxBXR90Em3C9fiWiCAnFjM_MrSk/s640/AFCEFE05-20C9-47DA-895B-84CC4820F2C6.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><span> </span>Yesterday, I finally made it back to the hospital to start my stay with Kurt. The visitation policy on Kurt's floor is always very strict and COVID has made it more so. While here, I am allowed to go downstairs to pick up food orders or things dropped off (though I should limit my visits downstairs). I cannot leave the building. If I do, my visit is over and I cannot return. Kurt only gets one visitor for this stay too. These are hard rules to navigate, though we understand and want Kurt along with the other patients to be protected. </div><div class="separator" style="clear: both; text-align: center;"><span> </span>Chemo begin on Wednesday. Kurt received a spinal injection of chemo, started steroids, and had two other chemo drugs via his PICC line. So far, he has tolerated those meds well. The steroids are making his glucose levels high, so he had to have that checked four times day. He also got a dose of insulin last night. The doctors have told us this will resolve once the steroids are stopped. His next dose of chemo drugs should be on Saturday. Today, we also found out that the fluid they took from his spine to check for malignancy came back negative. Praise God! We are so thankful for that good news. </div><div class="separator" style="clear: both; text-align: center;">As I was making my way over to the hospital yesterday (thanks for the ride, Savannah!) it felt so odd to see UK's campus coming to life with the arrival of college students. Even in the midst of a pandemic, life marches forward. In a way, it seems as though life stopped and took a sudden, sharp dive last week. But isn't that always how these things tend to go? Sometimes, I am thankful for the sharp turns and steep dives because they don't require as much exertion during those anxious "wait and see" periods. A friend shared Psalm 57:1b with us last week: "...I will take refuge in the shadow of your wings until disaster has passed..." and I keep coming back to this verse. I feel like a weak little sparrow hiding under the wings of a much stronger father. Here, we are safe from the winds and storms that rage outside of his protection. Over the last couple of days, God has granted us so much peace. For someone who tends to want to fall into anxious thoughts, this has been such a blessing. It's a blessing that I know can only come from our good Father, through the prayers of those lifting us up to Him. Last night, I slept so well. I fell back asleep each time someone came in to do vitals or other checks. The first time I awoke and realized I had been sleeping so well, I quickly breathed "Thank you, Lord" before drifting back off. Those of you who know my past sleep issues, especially sleeping in other places, will understand the miracle of this. The biggest blessing is that I know, even when I don't sleep, when the way seems dark, I am sheltered beneath his wings. </div><div class="separator" style="clear: both; text-align: center;"> We want to thank everyone for their generosity, prayers, and the different ways our family is being served: from encouraging notes and messages, to gifts for the children, food and gift cards, to ice cream--we are so thankful and so blessed by you! </div><div class="separator" style="clear: both; text-align: center;">Kurt was excited to get some Grater's ice cream last night! Thanks, Bekah! <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX73tRE6vJ2QEiH_ZlZy4tOesKn1AXzF1A1gHfSeeKTv8oHlRJd56VwsRPnTRMzUin7Br280VlsdA-YlrPnlLMxXCi5VLrMY2KiOhYBXkt9vREmTc_KxAUiTj6sLVRykNyonIBek9ki5Y/s4032/IMG_3148.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX73tRE6vJ2QEiH_ZlZy4tOesKn1AXzF1A1gHfSeeKTv8oHlRJd56VwsRPnTRMzUin7Br280VlsdA-YlrPnlLMxXCi5VLrMY2KiOhYBXkt9vREmTc_KxAUiTj6sLVRykNyonIBek9ki5Y/s640/IMG_3148.HEIC" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Being on the 11th floor has its advantages: a room with a view. As we look down on Lexington, we are reminded to pray for our community, our friends, and family. As we peek out into the halls on occasion, we are reminded to pray for the thirty-ish other patients on this floor. I pray God also uses this journey to open our eyes more to the needs of others in our community and how we might meet those needs through prayer or other avenues. </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLdj1dtTMcICsZuVjcMNnAhqGLuu34gcaGfzKypu1WX6wbfEJDE9oGRxAqvZ4YMkmjhBlBPNbg9R044MBVynXUKQ6BGmSHhEYFDo2Kf21ne4JS_DJVV0CwBNjzarmtuXeDSh6nmB9b0GM/s4032/61844548588__B8F2C6AE-9253-4845-95C9-1D51E79B561A.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLdj1dtTMcICsZuVjcMNnAhqGLuu34gcaGfzKypu1WX6wbfEJDE9oGRxAqvZ4YMkmjhBlBPNbg9R044MBVynXUKQ6BGmSHhEYFDo2Kf21ne4JS_DJVV0CwBNjzarmtuXeDSh6nmB9b0GM/s640/61844548588__B8F2C6AE-9253-4845-95C9-1D51E79B561A.JPG" width="640" /></a></div><div class="separator" style="clear: both; text-align: center;"> </div><div class="separator" style="clear: both; text-align: center;">Please continue to pray for Kurt as treatment progresses. We are praying for: </div><div class="separator" style="clear: both; text-align: center;">-wonderful tolerance for chemo drugs </div><div class="separator" style="clear: both; text-align: center;">-as few side effects as possible </div><div class="separator" style="clear: both; text-align: center;">-for protection from infection</div><div class="separator" style="clear: both; text-align: center;">-for sleep </div><div class="separator" style="clear: both; text-align: center;">-for my health to continue to be stable </div><div class="separator" style="clear: both; text-align: center;">-for our children at home </div><div class="separator" style="clear: both; text-align: center;">-for grandparents caring for them</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">Much love in Christ, </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Priscilla </div></div><p></p>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0tag:blogger.com,1999:blog-5093408385678445557.post-63736881755690678742020-08-10T10:51:00.002-07:002020-08-10T10:51:47.192-07:00Shadowlands <p> On August 5th, 2020 Kurt was diagnosed with B-Cell ALL (Acute Lymphocytic Leukemia). This diagnosis came after a quick succession of appointments that were kicked off by some mild symptoms that started back in June. Kurt noticed dizziness when standing quickly, some fatigue while doing yard work, and PVC's (skipped/double heart beats). We assumed he was anemic and bloodwork seemed to point toward that or an infection initially. We retested and numbers improved. On July 28th, we repeated the bloodwork and third time. Kurt was feeling great--better than before and we assumed that whatever it was had resolved. On July 31st, our doctor called to let us know his bloodwork had returned and it was worse than the initial results in June. More concerning was the presence of immature cells in the bloodstream and blast cells. She urged us to get in to see a hematologist and oncologist as soon as possible. </p><p>No one ever wants to hear those words. Our hearts sank, but we took courage in knowing God knew we were going to get that call. We have never left His caring and loving hands. Thanks to a friend in the medical field, we were able to get a Hematology and Oncology appointment Monday (August 3rd) morning. The doctor told us that he was sure there was an issue with Kurt's bone marrow, but the only way to really get a firm diagnosis was to do a bone marrow biopsy. On Tuesday, August 4th, he had a bone marrow biopsy. The procedure was pretty pain-free (until soreness later) and we came home to wait. </p><p>Waiting is the worst part and we were told we had an appointment Friday to hear results. Instead, we got a call Wednesday to come in at noon to talk over the results. We learned that Kurt had ALL (Acute Lymphocytic Leukemia) at that appointment. ALL is more common in children (confirming what we already knew about Kurt being big kid!) and that he was considered a "unicorn" in that he was so healthy at diagnosis and his counts (while bad) were not as bad as they usually see. While ALL is a beast of an illness to have, it does have a more optimistic prognosis than some other adult Leukemias. Part of this has to do with Kurt's age, health overall, and that he can be treated with a young adult protocol. We have been blessed to hear the words "treatable" and even "cure." And while those words are not used lightly, we cling to the hope we have in Christ and the thought that it is possible! </p><p>We were instructed to head to U.K. Hosptial to be admitted that afternoon. Kurt's immune system is extremely fragile right now and even something as simple as brushing his teeth could cause a problem. We are so thankful God led us to be careful during this COVID crisis. If we had been more lax, Kurt could have ended up very sick. </p><p>Strangely, we almost felt some relief as we left the office. We knew what we are up against. We had hope. The hardest part of that drive was knowing we would have to tell our children. They have been through a lot with my own health issues over the years and we knew it would be hard to have dad "sick" and both of us gone during this process. God is guarding over their hearts and they are doing well now. </p><p>The first part of leukemia treatment involves an "induction" phase where the end goal is remission. This means a 29 + day hospital stay. In the hospital, Kurt has been given a number of medications to protect him from fungal, bacterial, and viral infections. There are medicines to protect his kidneys too! He has had lots of bloodwork, a PICC line placed, and another biopsy. He also had some baseline tests to measure heart and kidney function. We learned he has the most common form of ALL: B-Cell and are currently waiting for a few other genetic markers to return before Chemo begins. </p><p>One of the first things Kurt said to me after he was diagnosed was "Think of all the people I can share Jesus with because of this?! If it brings glory to Him, I am fine with any diagnosis." He has been a pillar of strength this week. We have both had our sad moments and some anxious ones (that's always more me!), but God has been good to comfort us in those places. He has shown us such goodness through friends and family who have jumped into action to help support us. He has shown us mercy through a quick diagnosis, connections through friends, and by giving us a sense of hope in the diagnosis itself. </p><p>Last week, Andrew Peterson's song "Dancing in the Minefields" kept playing in my head. If you have never heard it, google it now. These are the lyrics: </p><div class="PZPZlf" data-lyricid="Musixmatch37343646" style="background-color: white;"><div class="bbVIQb" jsname="WbKHeb"><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px; line-height: 1.58; margin-bottom: 0px;"><span jsname="YS01Ge">Well, I was 19, you were 21</span><br /><span jsname="YS01Ge">The year we got engaged</span><br /><span jsname="YS01Ge">And everyone said we were much too young</span><br /><span jsname="YS01Ge">But we did it anyway</span><br /><span jsname="YS01Ge">We got the rings for 40 each</span><br /><span jsname="YS01Ge">From a pawn shop down the road</span><br /><span jsname="YS01Ge">And we said our vows</span><br /><span jsname="YS01Ge">And took the leap now 15 years ago</span><br /><span jsname="YS01Ge">And we went dancing in the minefields</span><br /><span jsname="YS01Ge">We went sailing in the storms</span><br /><span jsname="YS01Ge">And it was harder than we dreamed</span><br /><span jsname="YS01Ge">But I believe that's what the promise is for</span><br /><span jsname="YS01Ge">Well, "I do" are the two most famous last words</span><br /><span jsname="YS01Ge">The beginning of the end</span><br /><span jsname="YS01Ge">But to lose your life for another, I've heard</span><br /><span jsname="YS01Ge">Is a good place to begin</span><br /><span jsname="YS01Ge">'Cause the only way to find your life</span><br /><span jsname="YS01Ge">Is to lay your own life down</span><br /><span jsname="YS01Ge">And I believe it's an easy price</span><br /><span jsname="YS01Ge">For the life that we have found</span><br /><span jsname="YS01Ge">And we're dancing in the minefields</span><br /><span jsname="YS01Ge">We're sailing in the storms</span><br /><span jsname="YS01Ge">And this is harder than we dreamed</span><br /><span jsname="YS01Ge">But I believe that's what the promise is for</span><br /><span jsname="YS01Ge">That's what the promise is for</span><br /><span jsname="YS01Ge">So when I lose my way, find me</span><br /><span jsname="YS01Ge">And when I lose love's chains, bind me</span><br /><span jsname="YS01Ge">At the end of all my faith to the end of all my days</span><br /><span jsname="YS01Ge">When I forget my name, remind me</span><br /><span jsname="YS01Ge">'Cause we bear the light of the Son of Man</span><br /><span jsname="YS01Ge">So there's nothing left to fear</span><br /><span jsname="YS01Ge">So I'll walk with you in the shadow lands</span><br /><span jsname="YS01Ge">'Til the shadows disappear</span><br /><span jsname="YS01Ge">'Cause He promised not to leave us</span><br /><span jsname="YS01Ge">And His promises are true</span><br /><span jsname="YS01Ge">So in the face of all this chaos</span><br /><span jsname="YS01Ge">Baby, I can dance with you</span><br /><span jsname="YS01Ge">So let's go dancing in the minefields</span><br /><span jsname="YS01Ge">Let's go sailing in the storms</span><br /><span jsname="YS01Ge">Oh, let's go dancing in the minefields</span><br /><span jsname="YS01Ge">And kicking down the doors</span><br /><span jsname="YS01Ge">Oh, let's go dancing in the minefields</span><br /><span jsname="YS01Ge">And sailing in the storms</span><br /><span jsname="YS01Ge">Oh, this is harder than we dreamed</span><br /><span jsname="YS01Ge">But I believe that's what the promise is for</span><br /><span jsname="YS01Ge">That's what the promise is for.</span></div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="color: #222222; font-family: Roboto, arial, sans-serif; font-size: 14px; line-height: 1.58; margin-bottom: 0px;"><span style="background-color: transparent; color: #70757a; font-size: 12px;"><br /></span></div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;"><span style="background-color: transparent;"><span style="font-family: inherit;">Kurt and weren't quite as young when we got married but plenty young enough at 22 and 25. In early 2021, we hope to celebrate our 15th wedding anniversary. We've been dancing through the minefields all these years together and we plan to keep dancing through this one. I am thankful I get to be the one to walk through these shadowlands with him. I'll keep walking, with Jesus' help, until they disappear. </span></span></div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;"><span style="background-color: transparent;"><span style="font-family: inherit;"><br /></span></span></div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;"><span style="background-color: transparent;"><span style="font-family: inherit;">We are still processing everything that has happened, so I am sure I will post some more reflective thoughts later. Right now, Kurt is inpatient and we are waiting for chemo to being Tuesday or Wednesday. Because of the strict visitation policy, I am at home getting things settled and will go to be with him on chemo day. Once I go, I am not allowed to leave. If I leave, I cannot come back for the duration of his stay. This is VERY hard. </span></span></div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;"><span style="background-color: transparent;"><span style="font-family: inherit;"><br /></span></span></div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;"><span style="background-color: transparent;"><span style="font-family: inherit;">Would you please pray for the following needs: </span></span></div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;"><span style="background-color: transparent;"><span style="font-family: inherit;"><br /></span></span></div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;"><span style="background-color: transparent;"><span style="font-family: inherit;">-Kurt's protection from infection while in the hospital </span></span></div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;"><span style="background-color: transparent;"><span style="font-family: inherit;">-That Kurt's chemo side effects will be as mild as possible and he will tolerate it beautifully! </span></span></div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;">-That Kurt will achieve remission during this first round of treatment and get to come home at the end of the 29 days. </div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;">-For each of our children, as we are away. Their little hearts are grieving in their own ways and we know they are anxious about the future. </div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;">-For grandparents, as they care for our children </div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;">-For sleep for me in the hospital and at home. For my own health issues to stay controlled.</div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;">-For some favor possibly in the visitation policy.</div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;">-For our little dog, Mattie, who is in her last days. </div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;"><br /></div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;"><br /></div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;">Thank you all for praying for us. Thank you for all the messages, gifts of food, and all the other ways in which you have already blessed our family. I will post regular updates here and share them via social media. </div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;"><br /></div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;">Thank you for walking with us. We're going sailing in the storms...</div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;"><br /></div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;">-Priscilla </div><div class="ujudUb WRZytc u7wWjf" data-mh="-1" jsname="U8S5sf" style="line-height: 1.58; margin-bottom: 0px;"><br /></div></div></div>Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com3tag:blogger.com,1999:blog-5093408385678445557.post-24225653400317643022019-02-01T14:00:00.001-08:002019-03-03T16:21:27.352-08:00And so we are into 2019....<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "arial" , "helvetica" , sans-serif;">February 1, 2019</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It seems so strange to be back in this space and writing almost two years since my last post. What a two years it as been! I hope to use this first post of 2019 to fill in a few gaps and to talk about a special focus that I'd like to take with this blog for a bit. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My how they grow! Our kiddos are now 10, 7, and 3 years old! Yes, the preschooler you see front and center is our sweet baby M from all those adoption posts in 2015. He is such a joy and brings lots of fun (and some three-year-old challenges) to our family! :) Our daughters are enjoying 2nd and 4th grades and love the Classical Christian curriculum that their school offers. We really love the 3-days of school and 2-days of homeschool that we get there! Currently, they are reading <u>Peter Rabbit</u> and <u>Heidi</u>, so this English nerd mama is in heaven! </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">At the end of 2018, I turned 35. I have never been one to complain about growing older, but the past two years did seem to place a little urgency on my heart, maybe a little more forward thinking, into the kind of life-style I'd like to pursue to make the coming years more healthful ones. I think this type of thinking, this type of change, for me, could only come after a complete loss of the health I had taken for granted. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I'll share a little of my story here today, but I hope to be able to expound on several of the issues I've faced in future blog posts. Perhaps, someone walking a similar road can find some guidance, comfort, and a little nudge toward the next step in healing here.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I could start in 2017, when the walls began to collapse around me, but I'll go back a little further--to the beginning. I started life with a deficit, born 2 months early, I came into this world prematurely, with lungs and a body that struggled to keep up for a bit. There are a few significant things that mark my early years that I have come back to think on in recent months: </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-I was frequently sick as a child. I was hospitalized frequently around the ages of 4-6 with pneumonia. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-I grew up in a home where both my parents smoked. Though my mom stopped when I was around 7, my dad continued to smoke (mostly out of the house) until 2003. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-I had terrible seasonal allergies and did 2 rounds of immunotherapy as a child and young adult. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-Our family doctor over-prescribed antibiotics. I took low-dose antibiotics as a teen for acne. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-Our house had a damp basement. I remember my mom always running a dehumidifier. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-I ate what everyone else did--lots of junk food, soda, etc. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-I took birth control from the age of 22-24 and then later the mini pill after both our daughters were born. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My first encounter with "health issues" didn't really come until after our first daughter was born. Immediately after she was born, I felt "off"--while everyone else was constipated after birth, I had diarrhea for days. My biggest symptoms were huge adrenaline rushes, coupled with exhaustion and insomnia. Everyone around me assured me that I was just "a nervous new mom" or that my hormones would "level out." I tried to listen and convince myself that I was just the type of person who didn't cope well with these things, but in my heart of hearts, I knew that something had changed. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I won't go into the whole story here, but I was eventually talked into talking an anti-depressant drug and, while it did improve some symptoms, I never really healed. I would have periods of exhaustion--literally couldn't function after 7PM. I was 25-26 years old and I suffered from frequent periods of insomnia, fatigue, heart racing, feeling cold, catching every germ that came around easily (lots of strep throat), frequent canker sores in mouth (I remember having 10 at once)... And yet, I was told time and time again, my lab results were normal. I even vividly remember one male doctor telling me I was stressed out because I had kids. I felt ashamed and powerless. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We would go on to have our second daughter two years later and, while I was able to go off my anti-depressant for the duration of the pregnancy, I soon found myself crashing again and back on it. It was around this time that our world began to change--we found a chiropractor! I'd been having back and neck issues for a bit and we started seeing a chiro that my sister-in-law visited. When he later passed away, we went with her to a new office that focused on not only chiro care, but whole body health. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I was a wreck emotionally and physically. My husband had a vasectomy because we were terrified of how my health might respond to another pregnancy. I was growing spiritually with the Lord, but I felt like my body was failing. I'd seen multiple doctors who all told me I was "fine" but our chiro was the first to acknowledge that I was not. He recommended a local doctor--a naturopath who worked with a DO (Doctor of Osteopathic Medicine) and I made an appointment. There was a 6 month wait! </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I'll never forget that warm May day when my husband and I went to her office for the first time. I had written out my "health story" and was relieved to finally have someone who might listen. We sat in Dr. C's office for over an hour that first day and I told her everything. And something incredible happened: she listened, she was patient, she validated what I was feeling. She wasn't rushed. It wasn't the standard 15 minute appointment I was familiar with. When I was finished sharing and answering her questions, I remember she leaned back and said, "I think you are dealing with these things." I sat there as she listed them out one by one. These were real medical issues, with real tests, and with real treatments. She told me firmly, I was not crazy. I was sick. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">About two weeks later, I received those test results in the mail. I remember grabbing them out of the mailbox on my way to run errands. I drove about a mile and couldn't wait any longer to read them. I pulled over into a parking lot and ripped open the envelope. One of the first things my eyes lit upon were the words "abnormal results" and with that I just started sobbing. I wasn't crazy. I was sick. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And that's how the first part of my health journey began 7 years ago. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">In the next blog post, I'll share about my "crash" two years ago--a little reflection on some things I should have done differently. And then, I'll try to get into some individual topics more deeply. Some things I hope to talk about in the future are: </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-Autoimmune Thyroiditis </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-Diet changes in relation to inflammation/thyroid/gut health </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-Parasites </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-Candida Overgrowth </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-CIRS </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-Mycotoxin Illness/Mold Toxicity </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-MARCoNS</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-Epstein Barr Virus </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-Mineral Balancing (heart racing/ heart palpitations) </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-Genetics (testing/protocol)</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-symptoms like brain fog, fatigue, anxiety, insomnia</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-adrenal issues </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I'm not an expert on these topics, but I have spent the better part of the last seven years researching, learning, and healing. Hey, my Master's in English came in handy for doing good, sound research! :) If I can share resources, books, research that might point one person in the right direction for healing, I'll count these posts as 100% worth it. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">It's a new year! You're not crazy. You might be sick. You can heal. Never. stop. digging. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">-Priscilla </span></div>
Priscillahttp://www.blogger.com/profile/03090694085980409405noreply@blogger.com0