Wall of Support

On Thanksgiving Day (11/22/2018) a few family members holed up in my mom's garage and all buzzed our heads with James in preparation for his Stem Cell Transplant and his continued chemotherapy that would eventually take his hair over the coming months. It was amazing to see the support and make James feel like one of the gang with his matching haircut. I'll never forgot how much that meant to James, Rita and me.

Fast forward to March 7th, 2020 and James began losing his hair again for another reason... his continue fight against Chronic GVHD. Rita and I began to notice strands of James' hair in our hands when we would run them through his hair, just like you do with any 3 year old. Over the next week his hair loss continued to accelerate.... first he lost his eyebrows, followed by the daily thinning and loss of the hair on his head. I must say I never thought we'd be in this situation again in 2020... we had envisioned a normal(ish) life for James by now, not backwards steps and more hurdles to climb.

On March 19th, 2020 just 12 days after his hair began to thin, we decided it was time to buzz James' hair. James and Daddy went into this together, just like in 2018, and got matching haircuts once again. I'm vowing to keep my hair short as long as James does.

Unfortunately we are not sure if James' hair will ever grow back as the GVHD is killing his hair follicles as it attacks his skin. If that's the case you're going to be looking at two good looking bald guys for the next (many) decades to come and that would be a great problem to reflect on 20 years from now. There is absolutely a chance for his hair to return... we just don't know, nor do the Doctors.

This disease and complication is serious; James' GVHD has been diagnosed as "severe" on a scale of mild, moderate and severe. This means we have another battle ahead, just like we did with leukemia and stem cell transplant, but James will attack it head on just like he has with everything else during this journey.

After beating JMML which has a ~50% mortality rate James is now battling cGVHD which has it's own ~50% mortality rate. Add to that the severe diagnosis and we're not in a group that we want to be in. It has been a difficult mental battle as we've come to realize that the fight James is in right now is similar to the one he went through 18 months ago against Leukemia... it took me a long time to realize and accept this. The many medications used to treat James' cGVHD drastically suppress his immune system which is part of, if not the largest, risk with this disease.

The GREAT news is James is responding well to his medications and we're very optimistic that he is going to get through this..

If you're looking to give yourself a free haircut/save a few bucks and support James grab a clippers and submit a photo or video via the link below... let's add it to the wall!

You got this James!

Love, Dad
03/20/2020

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