Tuesday, December 8, 2009

Day +75 (A plan ...)

The doctors have put together a plan to discharge Hunter from outpatient care in Seattle as quickly and safely as possible. His Day 80 evaluation has officially begun and if all goes well (knock on wood) we could potentially and unexpectedly be home for some part of the Christmas/New Year holiday.

This Thursday Hunter will have an extensive blood work up and skin biopsy procedure. The blood analysis will look at Hunter's current immune function, still in its infantile stages, and what percentage of his immune system is the donor's versus Hunter's previous system. On Day +28 we learned Hunter was 100% donor engrafted. We hope that remains the same, however the possibility exists some of Hunter's old immune system may still be present. Luckily, this doesn't necessarily create a problem, and as we understand it, would not impede our progress in returning to L.A.

The skin biopsy is a thirty second procedure for which, unfortunately, Hunter must be sedated. This means he will have to stop eating and drinking at a certain time late Wednesday night, early Thursday morning, and the potential for a cranky little man grows. Thankfully, his procedure is scheduled for 10:45 am and we hope it takes place on time. They explained to us the surgeon will remove an area of skin from Hunter's back side about four millimeters in diameter with something similar to a hole punch. This will allow the doctors to look at whether Hunter's skin cells are normal or show signs of GVHD. If Hunter has GVHD of the skin they will also be able to tell if it is acute or chronic, and to what degree, ranging from mild to severe.

Next week Hunter is scheduled for opthamology and dental exams. Each test will determine if Hunter is suffering from GVHD in either his eyes or mouth. The Physician's Assistant explained that for Hunter's particular disease, WAS, which is not cancer related, a follow up bone marrow aspiration is not necessary, music to our ears.

If these exams and analyses come back clean for GVHD and his immune function looks good the doctors will restart Hunter's steroid taper and begin our discharge paperwork. Again, while the idea of returning home is exciting it is also daunting. We were reassured by today's Attending Physician, who specializes in long-term issues faced by people who received bone marrow transplants as children. She let us know she will follow Hunter's care closely and the SCCA has twenty-four hour phone lines available for any and every question we may have.


  1. That sounds wonderful. I hope all tests are quick, painless and produce healthy results. To be home for part of the X'mas break would be so fantastic for you all....thinking of you best wishes, Bee x

  2. Great news! An exciting thought that you can all be together as a family for the holidays. Wishing you smooth sailing through all the testing.



  3. Wow! What great news! We will be thinking of you all this week and hoping for perfect test results. Happy Holidays to you all!

    The Peterson Family - Mark, Angie, James and Ryan