posted on CarePages September 12, 2011

I just hung up with Dr. Maris and Erin. Dr. Maris confirmed what we have seen for the last week – that Patrick looks good, feels good, and there is no reason to believe that MIBG is not working. He is therefore moving ahead with stem cell infusion this afternoon. Meanwhile, the IRB approval of the hu14.18 trial appears imminent, and Dr. Maris believes that Patrick could be eligible to begin this treatment within a few weeks if he does not begin to experience pain and if his cell counts remain decent. We will be at the ready to return to Philadelphia for a complete disease evaluation including repeat MIBG scan, CT, and bone marrow biopsies and aspirates, and if those studies suggest that Patrick could benefit from this therapy then we will move forward. There will be several forks in the road ahead, but there is still hope that we can regain the advantage over Patrick’s cancer. Please pray that MIBG continues to relieve Patrick’s disease burden, that the hu14.18 trial in fact opens very soon, that Patrick’s disease evaluation confirms he is eligible for this treatment, and that the treatment is effective without harsh side effects.

Even this elusive treatment will not cure Patrick, and it is toxic. If we get what we pray for, we will re-evaluate his disease after a couple of cycles to make sure we are not putting Patrick through a harsh treatment that is not effective. For now we will press on.


PS – We are certainly not telling the girls anything right now. We have discussed this difficult topic with the girls’ counselor and have decided to tell them together but later in the course when there is no possibility of the news finding its way back to Patrick.