+962 First Etanercept and Trip to NIH

A lot has happened since I last wrote an update.

1. On Thursday, March 19, David had his first shot of Etanercept (a TNF blocker). We hope this helps control the skin GVHD so we can begin tapering the steroids. The great news is that today is Saturday, March 21, and it appears to be working already! He'll have two shots/week. The next one is on Monday. He did well with the shot even though he thought is was going to hurt. I used the EMLA cream.
2. The whole family took a trip to Maryland to visit the team of doctors at the NIH. The nutritionist said we need to cut back on his dairy because the has high cholesterol (due to the medications). He donated a lot of blood for research. We spoke with the WAS team too. It was nice to see them. We saw the dermatologist and decided to do a skin biopsy next year, if David still has skin GVHD.
3. While we at the NIH we met a wonderful mom and her WAS son who flew in from Australia. The NIH is willing to see anyone from other countries. This mom's son was just diagnosed, he is 14 years old!
4. I am amazed at another WAS boy, Declan, who was only at the hospital for a short time after transplant and already went home! We were all on the edge of our seats as he battled breathing issues and was in ICU on a ventilator. He is doing really well and is engrafted!
5. The next boy we are praying for is Ayden. He is undergoing preconditioning right now.