We went to Memphis earlier this week for another check up. Mac's counts were good - hemoglobin back to 10, platelets 92K, and so now we start with plan B: decrease the 2nd medicine while keeping the first one (the GMCSF shot) at a low level. Where will this take us? Hopefully stable or up! I am hoping that we do not find he is dependent on the medicine to keep his counts up, because that would lead us straight to transplant. (And there is never a good time in a kid's life to take a year off and have a BMT!) They also sent some labs off to test his telomere length - that is a word you haven't heard in a while. Suffice it to say that hopefully his telomeres are longer than they were 2 years ago. We also had our final appointment with Neurology as he has been off the anti-seizure medicine for a month. He passed all the tests and we got to say adios to that department.
So, in this month of Thanksgiving, I am once again thankful Mac is alive, in school and having a good time. I am thankful he has been transfusion independent since Feb. 2010. I am thankful he is smart and schoolwork comes easy to him as his health has been such a challenge. I am thankful God has given us the strength to get to where we are. I am thankful for St. Jude and the good work they do for sick kids. And I am thankful to you - for always checking in and keeping Mac in your prayers.
Remember someone once told me we could be very specific when talking to God? We're 2 years out and I was hoping to see the light at the end of the tunnel by now. Instead, the prayers we need now are for stable/upward moving counts as we decrease the Tacrolimus and improved telomere length. That's it! One day at a time!
Happy Thanksgiving!!