We Have a Plan

We are home from the hospital until Thursday. The transfusions gave Max a great bump and his platelets are up to 120,000 and his hematocrit is up to 26. Even his white count and ANC was up a bit. He was, as usual, a trooper and charmed the staff. Wait until you see the video of Max playing the electric keyboard that the music therapist left him, wearing his Elton John sunglasses (thanks Uncle Paul and Uncle Roland) and rocking away. His nurse thought this was so funny that she brought the entire nursing staff in to see him. He only cried when it was time to go home. He didn't want to leave because he was having too much fun. I hope he keeps this possitive attitude over the next several months.

We got the Fanconia's Anemia test results back and it was negative. So, it's officially idiopathic aplastic anemia. As we mentioned before, because none of us matched, they are going to do immunosuppressive drug therapy. They are going to be delivering the first set of drugs via IV, and are going to start by surgically planting a catheter in his chest (a portocath). Because they couldn't get us a surgical spot tomorrow, they sent us home and we go in on Thursday to get that installed. Then, after surgery, they will send him up to Mass General Hospital for Children. He will be in a private room because he can not be exposed to other kids. They will give him ATG and prednisone for 5-7 days, and then, depending on how he tolerates it, he will come home. They will keep him on the steriods for a while and he will start on cyclosporene. The ATG may make him quite sick, or he may not have any trouble at all. It often causes something called "serum sickness" which has flulike symptoms. Because it seems that his body has pretty much stopped making platelets and red cells, they expect to need to transfuse very often, probably every week or two for red cells and every 3-5 days for platelets. They will do this through the portocath, too. They should be able to use it for labs as well, so this will really cut down on the number of needle sticks Max will need going forward. If the therapy works, they expect to see an improvement in 8-12 weeks.

We have family members coming to stay with us for the next week or so. If he needs to stay longer, we will figure it out. This is going to be a long haul, and we appreciate all the help everyone has offerred. The hospital has great facilities for Max, including music and art therapy.

I am scared, but at least we have a plan now. It is a lot better than all this waiting. We just have to get through this and keep him healthy until it works.