We hope everyone had a very Happy Thanksgiving!!! Ours was very quiet and we were very happy about that, especially after being in the hopsital over the last 3 weeks we weren't looking to do anything but relax.
We took Jack to clinic today. Jack was supposed to get IVIG's and Dr. Bunin realized that next week Jack is due for Pantamadine (antibiotic require for 1 year after transplant) and cut him a break and decided to have Jack get both IVIG's and Pantamadine next week. Jack ended up just getting a blood draw and we hung around for a while until those results came back. The results came back and Dr. Bunin herself handed us the lab results and said "Now these are better counts" and "now we know how much Jack's body doesn't like infection". We will now know that Jack is brewing something by his counts, so we pray from here on out that his counts keep going up and he doesn't get another infection. Now all we have to do is get his nutrition better.
Last Tuesday, while still in the hospital, Dr. Bunin and I were talking about what we are going to do with Jack's nutrition. We don't want to start crazy feeds again, so we had started him us with just 6 hours of night feeds, but that still isn't enough to sustain his weight never the less make him gain and as of right now we don't want to put in another port or central line for the risk of infection again, so what do we do? Well, I joked and said, is there a magic pill? Not long after that Dr. Bunin came back in to our room and told me about this medication that is an appetite stimulant that she normally doesn't prescribe, but desperate situations require desperate measures, so as a last resort before putting another central line in and doing IV nutrition, she had us start this medication called "Magace". It takes about 2 weeks for the medication to kick in, but it's worth the shot. So far Jack hasn't gained much weight but his hasn't lost either. I'm constantly in the kitchen making him food, so I am hoping that he will soon start eating better and gaining weight on his own. The theory is that Jack's counts as well as anything else that needs to recover from transplant will get better with better nutrition and as a doctor once told us "A bigger Jack will be a better Jack", so we are praying this medication will work.
I'm not sure if I ever mentioned this but not only is Jack 100% donor he has also become the donor. What does this mean? It means, Jack went into transplant with his own DNA from us and B positive blood type, he is now the donor's DNA and O positive blood type and we don't know if his DNA is male or female yet. Isn't that freaky? So Jack is a part of that wonderful person who not only donated bone marrow in March but also donated Stem Cells in May. This person is a saint. We won't be able to find out who the donor is until the spring but we can't wait to find out and thank them ourselves.
Please remember that there are so many people who need a matching donor. There are children with NEMO that I am in contact with who can't have their transplant because they don't have a matching sibling donor or there isn't a match in the donor registry. You could be that match. Please consider becoming part of the National Bone Marrow registry. You could give someone life, like the donor gave to Jack.
God of consolation, even were we to feel nothing of your presence, you are there. You presence is invisible, but your Holy Spirit is always within us.
Today's quote from my paster - Rev. Jeff Markay