Days +94 to +124

Day +94

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.