Day +19 to Day +80

Day +80

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.