Hello all, and thank you to so many for your continued reading of our detailed blog posts. These updates really help us to process all the information we’re receiving, and we are grateful for the outlet.

Though we are still in a holding pattern with regard to a decision on Caleb’s treatment plan for the next several weeks and months…. we wanted to provide an update with where things stand as of today. The repeat chimerism blood tests we referred to in the last post were drawn today in clinic, and we hope to get results by the end of next week… and a decision on the path forward by then or early the following week (week of the 29th). 

After talking with the doctor at length, we now understand that though his immune system has shown several signs of big improvement, the concern is that this will not stick long-term without further intervention. He is making B cells now (unlike before) and he is also making some key antibodies that he was not making before (namely, IGM, or Immunoglobulin M, which is something the body must make on its own and cannot receive via IV.)

Despite these wins, the test results indicate a mixed chimerism- Caleb’s immune system is currently made up of a growing percentage of his own T cells and almost 100 percent of Colten’s B cells. The doctor isn’t sure if the two will work together long-term, which would probably manifest itself in the form of Colten’s B cell percentage also dropping here soon (which would be bad news.) Hence, the boys’ immune systems are continuing to fight this battle in Calebs little body. Originally, the Cam-path (chemo drug) suppressed Caleb’s T cell function to allow Colten’s to take over. (Caleb’s T cells were working prior to transplant.) But now, the effect of that has worn off… and Caleb’s T cells are coming back to fight with Colten’s new T cells. Talk about sibling rivalry… I don’t think it ever ends, does it?

Caleb is now completely off the immune suppressant medication he was taking to prevent GVHD, so the first step is to see if removing that will allow Colten’s T cells to take over a larger percentage. If we see growth of Colten’s T cells and also maintenance of Colten’s B cells in the high 90s, we probably will just watch it (and do a victory dance.) However, we are sensing that this scenario is becoming less and less likely, just based on multiple trends in the wrong direction and conversations with the doctor. 

If we see Colten’s B and T cell percentages stay the same or go down, they will move forward with a procedure to “harvest” both Colten’s T cells and stem cells at the same time. The T cells would be used for monthly DLI for Caleb (donor lymphocyte infusions), and the stem cells would be used in the event of a repeat mini transplant. This means that if the decision is made to get more cells from Colten, regardless, he will need to be hooked up to a machine for four (ish) hours rather than receive a simple blood draw. We will be talking to a doctor from IR (interventional radiology) at the next visit about more details, but this procedure has already been scheduled as a tentative for November 8. (And no, Colten still is not aware of this.) The reasoning behind doing it all at once is that in the event the DLIs don’t increase Colten’s T cell count and they need stem cells, they don’t have to put him through a procedure twice. Crazy enough… medical science is unbelievable… and they can store all of it in a freezer and pull it out for later use as needed. This would give us more flexibility and options.  

If they see enough regression in Colten’s B or T cell percentages inside Caleb, they may go straight to the repeat mini stem cell transplant. This would involve about a week hospital stay for Caleb, with a few days of chemo (“conditioning”) beforehand. We need prayers that this isn’t the direction we go! 

The doctor has also reached out to several immunologists across the country today and is going to see what their thoughts are on getting both Colten’s T and stem cells at the same time. She is also going to discuss if, based on test results, they should go straight to a mini stem cell transplant or not. The next step is very much based on the discussion they have, but their opinions will hold a lot of weight since Caleb is so rare. 

Despite the uncertainty, Colten is still set to go back to school November 1… and the doctor is supportive of the need for him to do this. We are keeping in close contact with regard to illnesses in the classroom and around the school. 

Next appointments (not including BMT clinic visits):

October 22 – eye apt follow-up (check script and glasses)

November 7 – developmental/behavioral pediatric evaluation (Columbus)

November 8 – Colten’s T / stem cell collection procedure (tentative)

December 4 – Sleep psychologist evaluation, Westerville location. 

(Sleep update: The sleep doctor we saw last week said she doesn’t feel his sleep problems are medical, but behavioral (behavioral insomnia). She referred us to a psychologist who has a set regimen to help children with sleep issues (often due to medical history) normalize and learn how to fall asleep on their own, in their own bed. This apt has been pushed out due to a potential repeat transplant. Don’t plan to address this until we are more confident that hospitalization isn’t a concern. Sleep improvement process will take about six months of determination and consistency, and we don’t want to make headway and then have to start all over again.)