Erin and I took Patrick for the 48 hour MIBG and CT this morning. We just got home. When I saw the spot light up on his head I could not imagine how Erin felt when she saw it yesterday without preparation. The equivocal spot in the chest remains equivocal. If it is there it is very small. The CT of the head clearly showed a bony lesion – not an intracranial lesion. It is easily targeted with radiation. Bone marrow biopsies are scheduled for Tuesday; port implantation for late next week. Assuming the bone marrow is clear (please specifically pray for that), then the plan will include simultaneous chemotherapy (irinotecan and temodar) and radiation for essentially two weeks beginning a week from Monday. This treatment will be outpatient, but the days will be long and tough. He will then be off for two or three weeks, then another round of the same chemo, then we will re-scan. The goal is to achieve second remission as soon as possible. Meanwhile we will plan a maintenance regimen. Those options are many, but the choice is complicated. We are entering the world of experimental therapy in a big way. Doctors at CHOA, Sloan Kettering, CHOP, MD Anderson, Vermont, and UC San Diego are already on Patrick’s team. We will not be out-smarted or out-worked. We will continue to smile and live a fun life.
Hold on to this, because we are: Erin spoke to Dr. Kushner (Patrick’s doctor at Sloan Kettering) last night. He confidently stated that his clinic is full of survivors who defeated isolated bony relapse.
We are sad, angry, shocked, and worried. But we are also prepared, strong, inspired by how good Patrick feels, and absolutely ready to reclaim the quality of life we have enjoyed with you the last two years.
The toughest part will be breaking the news to Patrick and Madison. We will do that late next week before the port surgery. Please be careful what you say in their presence. There is no reason for them to have any extra moments of the feelings we all feel now.
As always, thanks for your support. We really need it. SRC
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