Saturday, January 17, 2015

JD here----As many of you know Clay had experienced a period of blessed stability in large part due to the experimental therapy he was receiving as part of a FDA Phase 1 Clinical Trial.   The trial had reached its legal limit on November 1 and all 7 kids on the trial were required to disengage from the therapy for a minimum of three months prior to "reapplying" for further use.   While this arrangement was established after a very complex decision-making process the simplest explanation is that the possible long-term side effects are a complete unknown which makes both the researchers and manufacturer very reluctant to push the boundaries any further. 

Clay had his first MRI scan since the conclusion of the protocol on January 2 and to our dismay the results showed renewed  growth across the entire disease "footprint" in the brain and spine.   Of particular concern is a specific lesion on his lower spine that the Docs now conclude was showing modest growth even while Clay was on the therapy but which has grown at a rapid rate since the conclusion of the trial.   Beyond the fact that this spot is exhibiting a confounding and worrying unique growth behavior the concern is that the lesion is in a position and of a size to be a serious threat to Clay's nerve functioning.  Due to the pressure on this spot of his spinal cord they believe he is in danger of losing sensory and motor ability in the lower half of his body.  It is the Docs' view that Clay cannot risk waiting for a chemo therapy to act (or not) on this spot and so have recommended immediate surgery to "de-bulk" this one tumor in hopes that it will relieve the pressure on his spinal cord and buy some time for the next chemo therapy agent to exert some control over the growth of his entire disease state. 

Of course this procedure has much inherent risk---opening up the spinal column and operating on the spinal cord is no run-of-the-mill procedure but Mary and I have interviewed neuro-surgeons and have decide to have Dr. Jallo at Johns Hopkins perform the procedure which is now scheduled for the morning of Wednesday,  January 21st.  Jallo is a nationally acclaimed surgeon who specializes in spinal cord operations.   We feel very fortunate to have the "best of the best" just an hour from our home and are hopeful for a good outcome under his care.   The projected recovery period includes 3-5 days in the hospital and roughly two weeks of recuperation before returning to school.  We will keep this page updated as we have more information.   Once more into the breach!

 Clay's spirits are high though he admits to being a bit "nervous about having to be on 'his' back" for so long.    His school mates and teachers gave him a cheerful send-off yesterday with a pizza party and arms full of stuffed animals,  get-well notes (in braille) and books on tape.   When we first shared with Clay the news of the need for this operation and its intent he responded by saying:  "Dad, wouldn't it be great if when  they took out this tumor it was attached to the other ones and they all came out!"  Yes Clay, that would be great.

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