Caleb update 5/4/24

Hi everyone,

We realized recently that it has been a few months since our last update. These last 4 months since being home from the hospital have been a complete whirlwind, but truly a time of complete transformation. Caleb has grown so much stronger and healthier since we brought him home in January. 

The transition home has been full of ups and downs. It has been challenging, (understatement of the century) to have all of us here at home 24/7, working and going to school and just living our lives while trying to function in a bubble shielding us from the outside world. Thankfully, with time and warmer weather on the horizon, we have been given the go ahead to start reentering society again, and even better, without masks!!! It's scary to say the least, but a very welcome gift!

Caleb passed the 6 month post transplant marker on 4/30, and we are so happy to say that he continues to do well. The markers that they track to make sure the transplant is still "working" continue to remain right where they want them to be! Caleb does have a case of graft vs. host disease right now in his skin. Thankfully its a mild rash and this is a very common complication after bone marrow transplant. We have spent the bulk of the last 5 weeks, fighting with insurance to get a specific medication approved to treat his graft vs. host disease. Unfortunately despite multiple efforts from our team at Nemours, neither of Caleb's insurance's wanted to pay for this medication. (I will save my rant for the broken healthcare system for another day) But his team at Nemours was finally able to get him the medication as a part of a research study, so he can now start this new medication and get off of the steroids he has been on for the last several weeks!

He has also worked so hard with physical therapy, occupational therapy, behavioral therapy and psychology, his teachers at school and at home to literally transform himself both physically and emotionally after the months of trauma and treatment his little body and mind had to endure. It hasn't been an easy road, but we are so proud of what he has overcome and how hard he has worked to rehab from it all. Its humbling to see.

As of Monday, Mike and I will both be back to work, in person and functioning in our respective roles in the way we did before Caleb's relapse last summer. I think we both feel like we have been living a Groundhogs Day situation for the past two years, with Caleb's relapses both happening two Augusts in a row. We're trying to make sure we plan for normalcy and look forward to a life without leukemia, but also try to remain realistic that in no way shape or form are we "out of the woods". We are constantly trying to balance two contrasting realities, and the weight of that some days is palpable. That being said, we are so excited for Caleb to have the opportunity to start 1st grade this coming August and we look forward to him having the ability to finally be in a classroom with other kids, getting to do all the fun kid things he wants!

We pray every day that Caleb can finally be allowed to live the life of a "normal" 7 year old, while also holding space for the reality that there is only so much we can control. We continue to be immensely grateful for everyone who has checked in, brought us dinner, called, texted, sent letters, thoughts, prayers, etc. our way. We could not have endured these last several months/years without our community holding us up. Thank you all from the bottom of our hearts!

Colleen and Mike