Archive for March, 2010

Update

Tuesday, March 30th, 2010

JoshatComputerJulie and I are also well. We’ve found a schedule that seems to work well.  I stay with Joshua overnight in the room (on a pull-out couch) and hang out with him in the morning. His teacher comes at noon so we’ve been able to catch some walks together during that time. Julie spends time with him in the afternoon while I work back across the street at the Children’s Inn (where we have a room) and sometime catch a nap since the sleep in Josh’s room isn’t always the best.  Then we all spend some time together in the evening before Julie retires to the Inn.
 
The people and facilities of the Inn are amazing. I can’t imagine a place being run and equipped any better for families in situations like ours. I’ll spare you all the details, but if you’re curious about the Inn, see www.childrensinn.org.

JoshnTony
Joshua had a blood draw this morning. He would have normally had his shots last Wedensday, so it’s been almost a week now without the meds he would have normally had. I don’t think they expect to see much yet, but if you’re praying for us, please pray that the results would show a positive response to the removal of his medicine. And please continue to pray for our protection, health, peace, strength… for wisdom, skill, etc. for all the doctors and nurses involved and that Josh will respond well and quickly so we could come home as early as possible.
 
 
Thanks again so much for all your support, encouragement and prayers.
 
Many Blessings,
 
Clark (Julie & Josh) Osborn

JoshontheLoose
Josh breaks out of his room in style!
 
 

On the Loose

Sunday, March 28th, 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.

 

Breaking Out

Thursday, March 25th, 2010

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

Locked Up

Tuesday, March 23rd, 2010

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

Bethesda Bound

Sunday, March 21st, 2010
 
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 www.JoshuaOsborn.com 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.

Happy Birthday Josh!!!

Tuesday, March 16th, 2010

Life is so COOL!

Life is so COOL!”

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.

Thanks!

Clark & Julie

The Waiting Game

Thursday, March 11th, 2010

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

Home Sweet Home

Saturday, March 6th, 2010
 
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

Please Release Me Let Me Go…

Wednesday, March 3rd, 2010

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

A Note from Josh

Wednesday, March 3rd, 2010

JoshatComputer

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