Didn’t see that coming

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

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