Good Evening,

Somehow, summer always flies by and it has been a minute since we have posted an update. Today marks day 142, post transplant for our dad! He has been enjoying his “newfound” freedoms: playing golf, going into the office (masks and precautions to allow him to do so), logging hours in the new “Tut Hut” (pic attached), and spending time with family at Lake Lotawana.  

Tut has consolidated to bi-weekly doctor appointments, and is weaning off several of his medications. These are important to prevent graft vs host disease and rejection of transplant. When you stop any of these medications, you do so with a watchful eye to look for any new symptoms/changes. Thank goodness for our Lele, monitoring him so well.

Two weeks ago after feeling short of breath, we found he had pleural effusions (fluid built up around lungs) and had 1L of fluid drained. This has been monitored and following improvement. 

Tut had a planned bone marrow biopsy procedure about 6 weeks ago. This is a significant marker, as it’s the first test to show how the bone marrow transplant “took” & how his “new cells” are really working down on the cellular level. GREAT NEWS to report -- the biopsy came back clean and and NO leukemia detected in the bone marrow!! 

In addition to this, we continue to look at the blood counts for how his immune system is functioning. Some of these blood counts were lower than the doctor’s would like — making him still very susceptible to infections. In order to help these blood counts go up, Dr McGuirk & Team asked Jackson to come home for a stem cell “boost”.  Donating his cells again, was a similar process for Jackson as the first go-around. This was all done in the apheresis clinic at KU/Med— he was a trooper! Tut received the “boost” which is just like getting a bag of IV fluids… uneventful for him and no complications.

Tut has his labs drawn at least once a week, and his blood levels— platelets, hemoglobin and white blood cell counts are increasing, which is what we want to see, we are hopeful they continue to trend in the right direction and stabilize. Dr. McGuirk is extremely pleased with dad’s progress at this point post transplant. He reminds dad his body recovering from the BMT is a process, recovery takes up to a full year.

My mom will be receiving her 4th, and final radiation treatment on September 14th.👏🏻 She will have imaging and follow up appointments later this fall, we will then be able to provide updates regarding how the overall treatment has gone. Back in June (prior to her 3rd round), she was given the encouraging news that her “tumors remain stable and have not grown”, which is great, great news!

Nothing is “too much” for Lele’s plate: She has been in full wedding-planning mode with Mallory for the past several weeks, but with the finishing touches wrapping up, the countdown is on. We are so excited to celebrate Mallory and Max’s Wedding in 10 days! It will be a magical celebration and a weekend we are all looking forward to, especially given the circumstances with our parents over past 9 months.

I try to note the positives and the real strides they have made together over the past 142 days. Certainly there have been many, many hard days for our dad, our mom and our family. We continue to ask God for his guidance and patience during this healing process. Slow and steady wins the race! 

Ashley