On a Tail Wind to the NIH

We flew from San Jose to Chicago with a tail wind. Then, from Chicago to Washington D.C. We hired a cab in Washington D.C. to the NIH (National Institute of Health) at Bethesda, MD. David loved flying. He really is a light to those around him. The people we shared an isle with were very pleased with his behavior and personality.

We are staying on the NIH campus at the Children's Inn. We've already met a few inspiring families with very ill children. I met a man who married a woman and both of them carry the gene for Chronic Granulomatous Disease. Both of their daughters (age 11 and 15) are very ill, especially the 15 yr old. She had shunts put in her brain, but the drainage was not working well so her brain began to swell. On top of this, she now has a lung infection. They have a 20 yr old daughter with Multiple Sclerosis, so she cannot be a bone marrow donor to her sisters, even though she is a match! Their visit was supposed to be for 3 days and now has turned into 45 days. They are from Puerto Rico and have been coming to the NIH since 1996. This man had the most beautiful, infectious smile and attitude. I was inspired.

David is participating in two studies at NIH. One is for his chronic skin GVHD. The other is for the on-going Wiskott Aldrich Syndrome study (it's a life long study as long as we want to participate).

Here is his schedule:

Monday: blood tests, clinic appt with GVHD team, echo cardiogram, bone density scan
Tuesday: clinic appt with WAS team, dermatology, photography, nutrition
Wednesday: ophthalmologist, meet with WAS team again, rehabilitation
Thursday: pain, palliative care and symptom management, dental

I'll let you all know how things go.