Days +232 to +365 (and beyond)!

Day +232

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.