Day +136 to +206

Day +136

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!