Archive for February, 2010

Arrival at NIH

Sunday, February 28th, 2010

Greetings from Bethesda!

We got here about 1PM EST and just caught the NIH shuttle from Reagan Int’l. I just love that airport. Can’t believe how small it is for a big market like DC. Of course both Dulles and Baltimore also serve the area. At Reagan, it’s like 2 minutes from the gate to ground transportation and the baggage carousel is right by the front door.

We checked in at the Children’s Inn and then hit the clinic cafeteria for lunch. Came back and watched the US heartbreaker and pretty much lounged around the Inn the rest of the day.

Josh has a blood draw in the AM for some further testing and he and Julie both have to get some sort of “mouth swab” for further genetic analysis. Not sure if we’ll meet with docs tomorrow or not.

Hopefully we won’t be in the clinic all day, cuz it’s supposed to be 50 here tomorrow. If we have the time, we’ll probably head to the National Mall and take Joshua to a museum or two.

No idea where the week will take us, but hopefully it will bring some answers as to what’s next for Josh.

Thanks again to everyone for their prayers and support.

Blessings,

Clark (Julie & Josh)

Didn’t see that coming

Saturday, February 27th, 2010

Thursday AM I posted this haiku on Facebook & Twitter:

Like a hitting slump
When life keeps throwing curve balls
Swing your way through it
James 1:2-4, 12, Romans 5:3-5, Galatians 6:9

Later that day we got a phone call from our NIH contact. She said that a minor abnormality was found in Joshua’s EKG – no big deal – but he would have to see a cardiologist on Monday. She also told us that they had found some of Julie’s cells in Joshua and they were testing to discover the percentage. Neither of these things represent anything to be concerned about, but they did sound like new obstacles to climb on this adventure.

Then yesterday while we were at Joshua’s birthday party (we celebrated early, it’s 3/16), I received a voice mail from NIH to call them. Something was up. Somewhat ironically, just a few minutes after watching the nice story that NBC 15 ran last night, we were on the phone with the doctor who is leading the Gene Therapy at NIH. Here’s the curve:

Blood tests have revealed that Joshua has an unusual number of Julie’s (maternal) cells working in his body. I can’t and wouldn’t want to get into the technical/medical explanations here, but in short, it means that there is reason to believe that at some point in the last couple of weeks to 5 years (nobody knows for sure), Joshua’s body may have begun to respond again to the Bone Marrow transplant that he received from Julie when he was 4 months old. As many of you know, Joshua became very ill at age 3 and while he recovered very quickly (miraculously we feel, see the “ABOUT” page), his immune system never did and it was deemed a failure. Now 7 years later, there’s some evidence to the contrary.

The people at NIH are wonderful. They really do  have Joshua’s best interests in mind. What the doctor told us last night is that this discovery of maternal cells and the corresponding reality that Joshua is actually producing some of his own t-cells (up to now it was assumed that it only his medicine doing this), makes pursuing the Gene Therapy treatment for Joshua a highly-questionable decision. “No matter how I look at it, I can’t see where it’s in his best interests”, said our Gene Therapist physician. The reality is that only one of their Gene Therapy patients is currently exhibiting better immune function than what these tests have revealed Joshua to possess already. The Gene Therapy process basically wipes out the patient’s existing immune function and starts over, so it’s completely possible that Joshua’s immune system could be worse after GT than it is now.

If I’ve lost or confused you, let me clarify by making sure you hear that this is GOOD news! No, we won’t be doing Gene Therapy for Joshua. Yes, our logistical circus just added three more rings to it. No, we’re not completely certain where we go from here. Yes, we’re pretty wiped out emotionally and intellectually. But that stuff all takes a serious back seat to the revelation that Joshua’s immune system is already working better than we thought it was. :)

We will still travel to NIH tomorrow and have some more tests done. We’ll be talking to both the doctors there and the doctors at Duke & UW to formulate a plan for where we go from here. While I can’t emphasize enough how fluid this situation is, the two possibilities that were discussed last night were:

1- Take Josh off his weekly shot routine (PegADA) and see how he functions on his own. This would have to be done in isolation and could take place at NIH or elsewhere.

2- Give him a “booster” bone marrow transplant from Julie again. I could be wrong, but I think this would happen at Duke.

We will continue to update, both on this blog and by email. To our praying family and friends we say “THANK YOU” and keep it up!”  To those of you who have supported us financially, we will contact you when we know more about our situation to see if you would like to reconsider your support. To those who have offered logistical support, we’ll be in touch ASAP to let you know if and where we still need help.

Not sure about the “NIH” part, but the adventure continues…

FamilyCottage

Blessings,

Clark (Julie, Josh & Timmy?) Osborn

Josh’s 1st Blog Post

Wednesday, February 24th, 2010

Josh ON the bubble at Camp Paradise

I’m excited to go to the Gene Therapy. I heard that there are alot of fun things to do there. I also heard that I will get my own Wii and Playstation system!

Best yet (I don’t mean to brag) I have ONE hour of school a day! And no you can’t come with! :)

Thank you for praying for me!

P.S. I will update my NIH adventure everyday until it ends.

May God bless you all!

Getting Ready to Leave

Tuesday, February 23rd, 2010

We fly out Sunday AM at 9:45. So much to do before then! Thanks so much to everyone for your prayers, encouragement and support. Joshua is very excited and aside from the displacement issues, we are too. We’ll try to post something every day here and get Joshua involved in the writing.

Many, many thanks and many blessings to you all,

Clark, Julie, Josh & little Timmy (we think:)

Joshua’s NIH Adventure

Monday, February 22nd, 2010

Greetings and thanks for visiting! We’re working on getting this blog set up. We will post daily updates during Joshua’s stay.