Bethesda Bound

Given how fluid our situation has been, I’ve been hesitant to send another update. But I guess it’s probably about time. Since it hasn’t been done before, the doctors at NIH had to present our situation to an ethics board to get approval for the process of isolating Joshua and removing his medicine. The board was fine with it, but they recommended that the doctors run it by some experts in the field of bone marrow transplantation. This was being done last week and I am not sure yet if they have got all the responses they were waiting for. However…
They have booked us on a 1:30 PM flight TOMORROW (Mon 3/22) to go back to NIH and have scheduled Joshua for admission to the clinic and isolation room on TUESDAY.  So I guess I can say with as much certainty as I’ve had any other time in the last few weeks ;) …  IT’S ON!  So here’s the plan as it stands now:
Last Wednesday will (hopefully) have been Joshua’s last PegADA shot for his SCID condition. He will remain in isolation while we move forward without giving him that medication and we will see how his immune system responds. We are told to expect to wait app 6-8 weeks to make a final determination and are currently scheduled to return home in late May. If Josh’s system does not respond well, it’s possible that he would have to go back on his medicine.  It’s also possible that his system could respond well, but still fall short of what is ideal in terms of the body’s ability to produce both T-cells and B-cells (more on that possible outcome in a moment.) It’s also possible that his system will respond even better than well and he would essentially be completely healed/cured. Regardless of the outcome, it is likely that we will return to Wisconsin in late May or early June and be here for the birth of our 2nd child (and some graduation parties! Yeah…:)
If Josh responds well but does not achieve full reconstitution of his immune system, we will then likely take him back to Duke Children’s Hospital in Durham, NC where he originally received a “Haploidentical” Bone Marrow Transplant with Julie being the donor. There they would give him a “booster” transplant, again using Julie as the donor, in the hopes that this would boost his system to (or closer to) ideal function levels.  This would likely take place about 3 weeks after Joshua’s brother is born (we have a July 4 due date) and we would be in NC for just about 3 weeks total. THEN…
Sometime between August of this year and the end of the year (or even early 2011, there are SO many variables), we would then return to NIH to have Joshua’s brother (who has been diagnosed with the same condition) entered into the Gene Therapy trial there.  After Joshua’s brother is born and until he receives Gene Therapy, he will receive the same PegADA shots that Joshua has been on for the last 7+ years to keep him protected while we’re waiting.
Please continue to keep an eye on the blog at for further updates, new developments, etc.  One of us will post most every day. Prayer requests are posted below for praying types. :)
Thanks for being part of our adventure!
Clark, Julie, Josh & Timmy (we think:)
Prayer Requests
- That Joshua would stay safe and healthy and that his immune system would be completely reconstituted (T-cell AND B-cell function) without any further treatment or medication.
- That his brother would be healed in the womb or that the diagnosis of SCID would prove to be false.
- That there would be no more “curve balls” unless it means more good news. :)
- For health, safety and sanity for Julie and I and our unborn child.
- For Joshua to cope well with being isolated for two months (and his mom & dad too:)
- For wisdom, clarity, good communication…for all the doctors, nurses and other medical people involved.
- For this to be a special time (adventure) with each other and with God (intimacy)
- For divine appointments and opportunities for us to accomplish anything and everything God might have in mind for us to do while we’re out there.
- For protection for our home while we’re gone and blessing over everyone involved in taking care of it, our cats, etc. and over all our supporters of every kind
- For people to pray any other way they may be led to pray.
THANK YOU for your prayers!  They have been extraordinarily tanglible over the last couple of months.

2 Responses to “Bethesda Bound”

  1. Kathy Ryan Says:

    Hi Josh,

    Your cats are doing great! All 3 came to greet me today. I couldn’t find much in the way of toys, so I brought them a new one I had which is a circle w/balls inside that they grab at thru openings…hard to describe, but they love it. I’ve noticed that Esther kinda hangs back until Jessie and Pumpkin are thru, but even tho she’s shy, she’s the one that hangs out w/me the most so far.


  2. Joshua Says:

    Thanks for taking care of my cats and for bringing them the new toy. I’m glad that Esther likes you. Give them a hug for me.


Leave a Reply