Caleb update 12/4/23

The last 40 days have been a whirlwind, but we are starting to see a light at the end of this dark tunnel.  It has been a while, so apologies for the long update. 

On 10/25, the transplant process started with 3 days of total body radiation.  This is a super intense process which involved being transported by ambulance twice a day to Christiana Hospital for the treatment and required being sedated for each treatment.  He was incredible throughout what is such a scary process, for adults let alone a 6 year old.  He then had 2 days of high dose chemo before the transplant.  He felt pretty crappy throughout, but as always was an amazing trooper.  

Mike’s Bone Marrow Harvest was on Monday 10/30, and went really well! They collected a little over 1 liter of his bone marrow, which is just liquid gold!  He didn't have too much pain following the procedure and felt mostly back to normal in about a week. Caleb was super proud of his dad for being so brave!  Caleb’s transplant took place on Halloween (spooky) and thankfully went as expected.  He had some small reactions (nausea, high blood pressure, low oxygen saturation) during the transfusion, but they subsided within a few hours.  Then the waiting game began. 

He developed severe mucositis in his mouth and GI tract pretty quickly after his transplant.  This, so far, was the toughest part of the process and the symptoms lasted about 25 days. He was in a lot of pain requiring a morphine pump and was unable to eat or drink anything. They put in an NG tube to help with feeding, but due to the extreme nausea he kept throwing up the tube, so they started nutrition through his IV instead. 

The next phase of transplant is engraftment, which is when the new immune system starts to take hold. We were very excited when he began engrafting the day after Thanksgiving.  This was a big step forward. This also meant that his counts were going to start coming up and hopefully he would start to feel better.  The mucositis  got a lot better over the next week and his pain went down dramatically, so we were happy about that. He still  had some pretty intense nausea for the next week, but finally that has gotten better too.  

This past week they also ran a test called a chimerism test, which tests his blood to see what percentage of his cells are his own and what percentage are Mike's cells (donor cells).  We received the great news on Thursday that the results came back showing 100% Mike’s cells, which is what we were all hoping for.  Although this is not necessarily an indicator of how things will go long-term, it is a very good first step!

He is starting to feel much better these days, and more like himself we think.  He is eating on his own, although only about 10-15% of normal, but we will take it!  He is currently dealing with a virus called BK virus, which affects your bladder. It is common post-transplant, and feels similar to a UTI.  The major difference is that it can cause bleeding in your bladder leading to bigger problems.  There is nothing to do to cure it, so they just need to treat the symptoms and let it run its course.  Hopefully it stays relatively mild and under control. 

Its hard to believe after this long difficult transplant journey, but there is hope that we could be heading home in the next week or so as long as things keep progressing, so that would be amazing!  We miss our other little man so much, but he has been spoiled by his grandparents, so he is happy.  We still have a very long road ahead of us. It will be the better part of the next year before Caleb's immune system is strong enough to "be out in the world", so for now we will remain in our transplant bubble, but hopefully very soon at home! And if we have learned anything over the past 5 years, everything can change in an instant with one single test result, but we are trying to celebrate every victory, both large and small, and we are very happy and grateful to be writing this update today!

We are so thankful for all of the support from our family, friends and loved ones. We could not do this without you.  Thank you to everyone who has checked in, sent a card or gift for Caleb, offered to help us in any way, or has sent a prayer or a well wish. We have a great deal to be thankful for this holiday season.  Love you all. 

Colleen and Mike