Ray’s bone marrow aspirate went well and now he’s back home. He’ll be a bit sore for a few days, but hopefully no other problems. We get to sleep in our own beds tonight! That’s a really good thing as I did not get much sleep last night. Nights like […]
After a little schedule adjustment Ray and I are finally at NIH tonight for his bone marrow aspirate, scheduled for tomorrow. Hopefully it will occur early enough in the day for everyone to check out Ray and approved him to leave by tomorrow afternoon/evening. Today was one of those days […]
Next week Ray has to be at NIH for a couple of days for a bone marrow aspirate. I believe this is to provide all the information on the current or baseline ability of his bone marrow including cell production lines and chimerism. Wednesday will be all the typical pre-op […]
Waiting has been hard. Last September it seemed everything needed to start Gene Therapy for Ray would occur in record speed. I expected to see everything gear up beginning in January, but nothing happened. NIH had to wait for new vectors from St Jude and then test them to make […]
We don’t yet know when NIH will be ready to start the next step for Gene Therapy for Ray. We hope to hear a plan soon. The waiting is hard. We have trouble deciding what we can plan to do and what we cannot. I know Ray is really anxious […]
Newborn screening & gene therapy save baby from ‘bubble boy’ disease Levi with his Dad, Phillip, and Colton with his mom, Kala (photo by Amie Van Amberg) Happy to have given birth in January 2015 to two seemingly healthy boys, Levi and Colton, after an uneventful pregnancy, Kala Looks gave little […]
November 16th we were at NIH for additional blood work and for Ray to sign the consent for apheresis in order to prepare for the XSCID gene therapy protocol. However, this is not the first time Ray has been to NIH for apheresis. He was there in 2001 when both […]
We are in the process of getting Ray ready to participate in this trial. Even though it will require that Ray receive bulsulfan (a drug often used in cancer treatments). We feel that the XSCID Gene Therapy protocol is the going to be the best way to improve not only […]
June 13th and 14th, 2016 I was lucky enough to be invited to attend a SCID Symposium at St. Jude’s Research Hospital in Memphis, TN. Heather Smith and Mickey Morgan were also there. Looking back it was quite fortunate that I was able to attend. My mindset for the trip […]
