Home Sweet Home

Today’s update comes from back home in Wisconsin. We had an appointment with the docs at NIH last night and flew home this AM, arriving just after noon in Madison. Some our amazing collection of wonderful friends had cleaned our house while we were gone and our frig had a meal in it and some “staples”. What a blessing!  Joshua went straight to hanging out with his cats and then put together a new Lego Star Wars kit that he got as an early birthday present at a Lego store in the DC area. He’s happy to be home, though we’re not sure how long we’ll be here.
Some new tests revealed even better numbers of maternal cells working in Joshua and everyone involved seems to think it makes sense to take Joshua off his medicine and see how his immune system fares without it.  The only question that remains is the timing. If NIH does not have to come up with a formal “protocol” for this course of action, it sounds like we could be back out there in a couple of weeks or less.  If the protocol is required, we’re told that process would take at least a month. Unless there is a significant delay in this process or something else unforseen arises, I think we’ll be headed back to NIH by early April latest to put Joshua in isolation, remove his medicine and see how he does.
If his immune system does not respond well to this, it’s possible that he would be put back on his medicine and then we would discuss the additional possibility of giving Joshua a “booster” bone marror transplant using Julie as a donor. This couldn’t be done until at least 1 month after the new baby is born.  It’s also possible that his immune system could respond well enough to stay off the PegADA but fail to make significant progress producing B-Cells. In this case he would still get his monthly IVIG treatments and we would probably try a “booster” at some point to see if that would help him produce the B-Cells.  Finally, it is also possible that Josh’s system’s response to the removal of his meds (and/or the healing power of God and prayer that we firmly believe in) could completely heal him.
If we get the process started in March or early April, then hopefully by early June we will be able to come home again so that Julie can give birth here in Madison.  Then if Joshua needs a “booster”, it sounds probable that this could be done here at UW hospital.  Then finally, at some point late in 2010 or early 2011, we would return once more to NIH to enter Timothy (we think that’s his name:) in the Gene Therapy trial. That would likely mean another 3-6 months at NIH.
That’s where we’re at. Like life, it’s all subject to change and we’ll do the best we can to keep you posted on any new developments. Feel free to ask questions.
Thanks again so much to everyone who has prayed, encouraged and supported us in this time. We’re pretty blown away by you all.
Many Blessings,
Clark, Julie & Josh

3 Responses to “Home Sweet Home”

  1. Melinda Lancaster Says:

    There’s no doctor quite like the “Great Physcian.”
    No place like home…even if only for awhile.
    Our prayers continue along with so many others!

  2. Ann, Joe, Rob , Joey Byrne Says:

    Rob is thrilled to have Josh back and we’re glad to hear you’re all fine. Please let us know if there’s anything we can do at any point in this process for you guys!
    The Byrnes

  3. Joshua Osborn Says:

    Thanks for your prayers and comments!

    I am injoying seeing all my friends and family (and pets). My classmates are really happy I’m back! But it sounds like I’m leaving again on Monday!

    God Bless you!

    P.S. Keep on commenting!

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