Update
Tuesday, March 30th, 2010


The docs gave us permission during the first week of isolation to take Josh out of the room as long as he was wearing a mask and gloves and steered clear of other kids. So Julie had him out and gave him a tour of the NIH patient library. This video wasn’t playing very well for me on YouTube. Might have to reload in a different format.
Everything’s good here so far. Today is the first full day without medicine for Josh. He normally gets his shots on Wednesdays but didn’t get them yesterday. He’ll have some blood work done early next week to get an early peek on how his immune system responds.
The docs said that in the first week it would be OK for Josh to leave the room wearing a mask and gloves, so Josh got to explore the clinic yesterday and do a little running around. That will probably be the hardest part of his adventure, the activity limits imposed by his isolation that is. We’re still waiting for his Wii system and hopefully a Nerf ball & hoop too. I had asked previously about a mini-trampoline, but they weren’t going for that one.
It was beautiful here yesterday – sunny and 67. Julie and I got to walk the campus a bit but were turned away at the nearby Naval Hospital in our attempts to reach their McDonalds for a couple of McDoubles for the boy. Our contact here said that we should have been allowed in, so she’s going to accompany us today, so hopefully Josh will get his McDoubles. To our friends at home: please patronize McDonalds for us so that they stay in business.
Hope all is well with everyone who reads this. Thanks to our good friend Kathy for taking such good care of Pumkin, Esther and Jessie. Just a reminder to anyone who might want to talk to and/or see Josh: we have our cell phones here and are also set up on Skype for both audion AND video Skyping. Just contact us to arrange a time for that.
We’ll work on getting some NIH pictures together.
Many Blessings,
Clark, Julie & Josh
Just a quick note to say that we made it to NIH just fine and Joshua has been admitted. Still quite a bit to do to get settled. Josh did some reading and math homework and is now checking out the Playstation they just wheeled in. Looks like Wisconsin’s got better weather than we do today, but tomorrow’s forecast is sunny and 67, so those of us who can leave the room will enjoy that no doubt.
Blessings,
Clark, Julie & Josh
Josh turns 11 today and we’re celebrating the incredible blessing that he is to us and to so many others. Feel free to leave birthday greetings in the comments.
Clark & Julie
Thanks to everyone who has commented, emailed, called… with encouragement and to see how we’re doing. We can’t repeat enough how much we appreciate our family and friends. I’m trying to get Joshua to do more of these updates, but he hit the ground running here in Wisconsin and between school, homework and playing with friends, he hasn’t found much time for it.
We’re still expecting to head back to NIH at some point. We’re just waiting to hear from them to formulate a plan. In the meantime, we’re keeping plenty busy at home with all sorts of things.
We spoke to Joshua’s doctor at Duke (where he was first treated and transplanted). After we take Joshua off his medicine and at least a couple of weeks after Josh’s brother is born, we may go back to Duke to have a “booster” bone marrow transplant done on Josh to boost the immune function that they found recently at NIH. We’re hoping that when we take Josh off his medicine that his system will respond to everything (including people’s prayers!) in such a way that the booster will not be necessary. Wouldn’t that be cool?!? If not, then it’s probably out to NIH, back home for childbirth, down to Duke for the booster and then back to NIH for Gene Therapy! (I knew I shudda taken that left toin at Albukoykee!)
That’s all folks!
Clark Osborn
We’re all back over at the Children’s Inn tonight. Yeah!!! Joshua is back to his old self and running all over the Inn after almost 3 days in the hospital room. He’s down doing some supervised arts & crafts stuff at the moment. These places, both NIH & the Children’s Inn, are exceptionally well run and well equipped facilities.
Tomorrow we’ll get Josh’s regular PegADA shots in the AM and then we’re going to jump on the Metro and head to the National Mall to spend the day in the museums and monuments. The boy has earned a little play time we think.
Friday at 5:30 PM we will meet with the doctors one more time to see what they know and what they are thinking for us moving forward. If we would choose to put Joshua in isolation and remove his medicine to see how he responds, it sounds like it would be a couple weeks to a month at least before we would start that. We think that would probably happen here, but that’s one of many questions that are yet to be answered for certain. We also are waiting for the docs at Duke to chime in on the situation. Not sure if that will happen before our meeting tomorrow, so it will be no surprise if we still have unanswered questions at day’s end tomorrow.
We will be flying back to Wisconsin Saturday and be home until we know what we’re going to do next. Could be just a week or two, could be considerably longer. It’s definitely a season of uncertainty unlike anything since the original diagnosis over 10 years ago, but we’re happy to report it’s a peaceful uncertainty. God’s in control and He’s just chosen to limit how far we can see where we’re going. We trust Him completely so “it’s all good”.
Thanks over and over again for all you support, encouragement and prayers. Please continue to pray for peace and protection, for clear direction and for spirit-led discernment and wisdom for all the doctors involved.
Many Blessings,
Clark, Julie & Josh
Thanks to everybody for praying for me! I feel much better today. Sorry I haven’t been sending blogs out everyday. I’ll send them out when I can. This is my third day (second full day) being in the hospital room. I having a really fun time by watching movies and going on the computer. And I have a really nice teacher!
God bless you!
Joshua