We received the latest results on Rocky’s immune function.
At last IVIg (24/6) the tests were done and show an increase of the naïve T Cells to 6% (from 5.5% at the end of April). It’s good there has been an increase, even though smaller than we were hoping, especially as he is coming off the immune suppressant.
Dr Markert said she was happy as long as it kept increasing, but did agree his cells are really taking a very long time to get there. Every child responds differently to the transplant and so we really just have to wait and see. It's hard sometimes as we are so worried for Rocky and just want to know he'll be okay.
We are not sure what the slow growth means for the future (esp in terms of timelines for Rocky to be out and about in the world). I know mentally I am preparing that 2 years post transplant will not be the date, that it will be longer. Brett is more optimistic and so I hope he is right. To give you some idea of the numbers, it was described to us that adults have 40% naive T Cells and 60% memory (the ones that remember diseases so they can fight them off in the future) T Cells. Children have less memory T Cells but they increase as they get older and as they catch more things. The Dr's said that they would like Rocky to have at least 20% naive T Cells before they think it's quite safe for him to be out in the world.
Things are otherwise great. The tube is still out and Rocky has been trying out all sorts of new foods (even stuff that's good for him! LOL.....) the best of all is some red meat. We hope this helps the issue of his ongoing iron deficiency.
Rocky is really loving climbing all over things at the moment and so we bought him a playgym for his birthday, which is in a couple of weeks. For us this was much more preferable than to continue have him climb on the TV cabinet and dance in front of the telly OMG I nearly died the first time I saw him there. But of course, he was so proud of his effort. Take care,
