Sunday, August 7, 2011

What a great summer it was! I loved watching Mac do everything he couldn't do the last 1 1/2 years! It was a mixture of camps, trips, movies, games, and down time. School starts next week and for the first time ever, I'm actually a little bummed. As the kids get older, the schedules get more intense, and I'm not necessarily looking forward to being the taxi driver again. (Or waking up so early either!)

Mac's labs from Children's in July were low, and then the labs at St. Jude on Friday were consistent. So that's not such good news. Remember we had taken the shot down to the .05 level, which is tiny, and were assuming we would discontinue the shot after this visit. But with a hemoglobin of 9.3 and platelets at 79K, we have to continue the shot and actually increase it back to the .1 level. All things considered, that is still a tiny amount, but Mac was really looking forward to having no daily shot. But we have to get the counts back up because school & soccer are about to start. He needs his platelets up and his energy up. When I got a little panicked at the drop, Martha said we're still watching and waiting. She assured me that other patients have taken a long time to taper from the medicines and still went on to full recovery. (She said there really is no "normal" for aplastic anemia patients, there is a best case scenario, and obviously we're way past that point!) Also keep in mind that Mac is not on the same medicine most people are on... this treatment is ATG (rabbit) and Tacrolimus. I call these the "cousins" of the real medicines used, but those are the ones that resulted in the downward spiral 2 years ago. So, our recovery time may be slower for a reason. All we can do is keep our fingers crossed and keep thinking positive!

Since Mac's appointment Friday wasn't until noon, we got in a visit to Graceland, home of Elvis. I figured it was time to see it since we've driven past Exit 5 just south of Memphis so many times. It was very groovy, very entertaining, and we enjoyed it. Not a must see attraction, but definitely fun to see if you're in the area!

We'll get labs checked here in 3 weeks, and back to St. Jude in 6 weeks. Next week, Mac will start 8th grade at Jesuit HS. That's big stuff! Thanks for checking in with us and keeping Mac in your prayers. Obviously we're going nowhere fast...