Hang Tight

Thanks everyone for continuing to check the blog for JT’s status. I haven’t been on here because quite frankly it’s no fun to write when you don’t have any good news to share! Although if I step back and look at the big picture, I do have good news to share in the form of JT is alive and somewhat healthy and driving us all crazy the way every 13 year old boy does his parents – so there you go!


The last few weeks have been pretty status quo. We received the results of the second cell test and it rose to 8% Sydney cells/92% JT cells. Doctors don’t really hold out any hope that the transplant will be a success. However, because it did rise 1%, they wanted to wait another two weeks and run it again just in case it is going up. Two weeks ago they also ran blood test to check for the PNH disease and as they anticipated it has not gone away. Although the percentage of PNH is about 20% lower than it was before transplant. If Sydney’s cells were to start taking over, the PNH percentage would be expected to drop.

I mentioned in the previous entry about Sydney giving platelets – which is not exactly what she would be doing, but the easiest way I could explain it. It’s actually called a peripheral blood stem cell transplant. Dr. Horan advised us in a follow up appointment that he did not want to do it after all because there was such a huge risk of complicated graph versus host disease (GVHD) and he wanted to wait and do a second bone marrow transplant where he felt GVHD has a better potential to not be as severe for JT.

Yesterday, May 18, JT had blood drawn for another cell test. Right now I am holding out hope for a miracle that Sydney’s cells will show signs of growing and begin taking over in JT’s body. Hope, or denial perhaps, but it gives me something concrete to talk with GOD about.

So our new Plan B is a second bone marrow transplant. This time they would do a Myeloablative Transplant. The first one was a Non-Myeloablative Transplant. Myeloablative is a more intense, higher dose chemotherapy and radiation conditioning prior to the actual transplant. The result being a much rougher recovery for JT with a higher risk of GVHD, but a better outcome of success. Sydney will still be the matching donor, her bone marrow is not the reason for this transplant failing.

JT continues to take the immunosuppressant drugs so he must take precautions to protect himself. He has to wear a mask when going out, stay away from people who are sick as much as possible, stay away from public places like stores, movie theaters, and what not. He will not be able to go swimming this summer because of bacterial risks and he still has his central line in. I’m sure he is going stir crazy being in the house all the time! But he hardly ever complains. School finishes up this week so hopefully friends will be around more to visit and do sleepovers.

We should get the new blood results back around Memorial Day. If it is as expected, they will begin weaning JT off the medication, give his body a rest for a few weeks and look at going back into the hospital around the end of June for transplant.

Or “hopefully” Sydney’s cells were just slow out of the starting gate; we’ll see improved results and can just hang tight without Plan B…

xo Sabrina