Hal-cy-on: adj. Denoting a period of time in the past that was idyllically happy and peaceful
Friday, October 23, 2020
Trees
Thursday, October 22, 2020
Hyper CVAD B: Day +1
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.
Since I haven't give an update in a bit, I'll back up and do that now:
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.
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.
Timeline:
Admission: 95% blast cells in the marrow
Post Induction: 15-20% blast cells in the marrow
Post Hyper CVAD A: 7% blast cells in the marrow
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.
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.
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: Be The Match
Monday, October 5, 2020
Hyper CVAD-A, Day #13
Hyper CVAD-A, Day #13
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!
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.
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!
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.
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.
Friday, September 18, 2020
Carry the Fire
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.
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.
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.
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.
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.
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.
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.
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.
One song that I have had on repeat during this time is Andrew Peterson's "Carry the Fire." One section of the lyrics say,
Though your fears assail you
And your body may fail you
There's a fire that burns within us
Of a city descending
With the sun in the center
And a peace unending
Thursday, September 3, 2020
Ways to help...
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.
If you are on Facebook, our small group has created a Facebook group called, "Ministry to Serve Johnson Family (Kurt and Priscilla). https://www.facebook.com/groups/669261783799732
In that group the following ways to help have been created/shared:
Amazon Wish List for household needs and encouragement for the children:
Meal Train Signup:
Sign up for ministry to the children:
https://www.signupgenius.com/go/20f0d45abaf28a4f49-johnson
Go Fund Me for Medical Expenses:
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.
Weary Feet and Gospel Comfort
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.
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.
We are praying for two things specifically:
Thursday, August 27, 2020
Induction Day #16
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.
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.
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.
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.
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!
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.
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.
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!
With Love,
Priscilla
