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.
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.
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.
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.
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.
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.
It doesn't seem real that it has been three years. Here we are. It's beautiful.
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!
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.
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.
Day +241
Kurt receive the Evusheld Antibody injections today for protection against Covid! 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!
Day +266
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.
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!
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!
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!
Day +300
Just a quick update:
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.
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.
Day +330
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.
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.
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).
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!
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.
Day +365
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?
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!
5/22/2022
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!
5/27/2022
Today, we were blessed to hear the words “complete continued remission” from Kurt’s oncologist!
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.
What now?
Kurt will continue to see his oncologist every three months for labs.
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).
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!
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!
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.
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!
There is much to do and navigate, many fears to overcome, battles to be won, but today…today…we dance!
6/2/2022
More good news: Kurt's oncologist called on Tuesday to say he can discontinue his last two medications! 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.
" 'Cause we made it through, I do believe The longest year in history Thank God that it's Thanksgiving Day"
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: "'Cause the older that I get/ I 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.
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.
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...
...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...
...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...
...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...
...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...
...the drive to clinic in heavy snow, white April blossoms, the vibrant green of summer, the flames of autumn...
...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...
...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...
...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...
...we spent 48 hours in darkness and then the medicine worked...the headache abated and I breathed again...
...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.
...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.
...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...
...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...
...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...
...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...
...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.
...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.
...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...
...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...
...tired, my head on your chest, barely awake, thankful, just thankful for one more day, one more night like this...
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.
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!
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.
Some prayer requests:
-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)
-Kurt’s magnesium levels will increase
-Kurt’s third dose of the Covid vaccine will produce some wonderful antibodies for him (due in 2 weeks)
-Kurt and our family would continue to be protected from illness
-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
-Kurt’s donor cells will continue to function at 100% and he will remain Leukemia free
Day +150
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!
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.
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!
Day +168
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!
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.
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.
Day +181
Kurt had his trifusion catheter (port) removed this morning. Everything went perfectly! We are thankful for this milestone.
Day +185
Kurt had another positive check up today! 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.
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.
We praise God for an encouraging appointment!
Day +201
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.
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!
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!
It’s amazing to see how far he has come in 201 days! To God be the glory!
Day +206
Praise God! Kurt is still 100% donor cells! We are so thankful!
Kurt celebrated his 41st birthday this week. Last year, he spent his birthday in the hospital. This year was a definite improvement!
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.
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.
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).
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.
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!
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!
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.
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.
We will update next week! Love ya'll!
Day +99
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!
Day +108
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.
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!
Last week, Kurt and Hazel received their first COVID Vaccines. Both did great!
Celebrating +108 days past transplant and Kurt being Leukemia free!
9/9/21
** 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.
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!
Nothing but smiles today!
Day +124
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.
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.
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.
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.
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!
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!
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.
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.
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.
Day +75
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! 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!
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!
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.
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.
Day +67
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!
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!
Kurt’s 2nd chimerism test came back late last night. He’s still 100% donor cells! We are so thankful!
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.
Day +60
Kurt had another great check-up this week! We love it when the appointments are boring and quick.
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!
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.
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.
Day +52
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.
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.
Those drugs are necessary but a pain!
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.
As we approach day +60 and the next chimerism test, we pray he will still be at 100% donor cells.
We have appreciated all the wonderful meals and encouragement over the past few weeks. Our kids love when Gene Bailey stops by with cookies and CFA! They also wait eagerly for Miss Valerie Holland and her never ending surprises!
Thank you for praying along side us
Day +45
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.
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.
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.
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.
Thank you for all your support and prayers.
Day +38
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.
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!
Day +29
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.
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.
On Friday, Kurt will have labs drawn for the chimera test. We’re praying he’s all donor cells!
For now, we will continue with the daily fluid appointments and lots of rest and as much food as possible.
Thank you for all your prayers!
Day +24
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 ) for infusions of fluids and electrolytes. This includes weekends! 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?!
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!
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.
Right now, his mom is making his favorite—chicken tetrazzini. He’s ready for dinner!
Day +22
Kurt is being discharged TODAY! 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.
He goes home with 11 medications and daily clinic visits but...HOME! He will also see his oncologist twice weekly for awhile.
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.
Day +21
Kurt’s labs continue to look great. His hemoglobin even came up a bit! He’s eating more
and healing each day. Last night he ate a whole serving of lasagna and this morning two bowls of cereal!
Nausea still creeps up at times, so he is trying to be proactive about getting meds before it strikes.
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.
Thank you for praying. We are ready to be home but trying to wait patiently to make sure Kurt’s body is ready!
Day +20
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.
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!
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.
We hope that he will be discharged from the hospital tomorrow or Wednesday.
Praying those donor cells are working perfectly at 100%!
Day +19
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.
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!
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!
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.
