Getting started, sort of...

It was a long day. Max was scheduled for surgery at 3:30PM but they were backed up, so he didn't get in until 5. They put in a portacath which they will use to give the chemo drugs, blood products, and do labs. The surgery was relatively minor, but took about 1.5 hours. It took Max a while to come out of the anesthesia, and he was happy to see us, well really Josh. All he wanted was Daddy. Apparently he clung to a confused but very tall med student with glasses. Daddy substitute. :) We got settled in his room around 8:30. However, we got some bad news around 9. The line they put in slipped and so he will have to go back into surgery tomorrow to move the line. They do not have to completely repeat the procedure, but this does mean more anesthesia. It also means a delay in starting treatment. They will hopefully start tomorrow afternoon. They want to start him on a 5 day course of ATG as soon as possible.

We got a better feel for what we are facing today. 5 days of ATG and steroids. Then, they will start him on the cyclosporene. If he does really well, he will be home in a week, but there is a high chance of infection as well as just basically getting sick from the drugs, so he will probable be in longer. After he comes home, he will be on the drugs for another 6 months. He will need transfusions pretty regularly and will be at high risk for infection. Hopefully they will start seeing an improvement in two to three months. After they stop the drugs, it will take about another 6 months for his body to recover. So we are in for a long haul. However, the pedi hem/onc said that Max will be able to play with his friends. No preschool for him for at least a year, though.

I am very tired and just rambling now. Josh is with him but needs to go to work tomorrow. My parents are here. We appreciate all the help, gifts, cards, and well wishes he has received. Thank you all.