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March 2, 2012

Brennan is back to TCH ER this morning. Throwing up a lot and not himself. Lets hope and pray it’s nothing.


March 2, 2012

Brennan was admitted from ER to PICU today for high heart rate and persistent fevers, from chest X-ray it looks as though he either has partial collapsed left lung or pneumonia.. leaning towards pneumonia. he's been pretty sick today, and hemoglobin at admission was 6.7 and platelets around 17..both very very low. he had blood and platelet transfusion already. just waiting to see if next X-ray will show improvement if so then its collapsed lung, if not then pneumonia.


March 6, 2012

Brennan’s second opinion from St. Jude's came back (head of their solid tumor board was head of tumor board here at TCH previously) and they are NOT comfortable calling Brennan’s new tumors Undifferentiated Sarcoma, nor Neuroblastoma anymore. Although when they requested Brennan’s original tumor slides of NB there were tumor markers one being ALK and another one (I cant remember) that showed on the NB tumor, which continue to show now.. they said its very rare to be neuroblastoma and lose the Mnyc amplified gene (which made his NB considered High risk) So literally they are calling it a tumor of Undifferentiated "something". Because they really aren't sure how/why this happened. These tumors do NOT pick up on the Neuroblastoma scan MIBG. So where this leaves us is in another "unknown" about Brennan’s cancer, but potentially leaves us with a Phase 1 clinical trial should be be accepted,

even though he's not technically NB anymore.. Results for that acceptance are pending a "special" lab testing which takes 4-6 weeks.. meanwhile we continue, scans begin tomorrow and finish next week right before chemo again.. potentially Brennan could be looking at surgery before, or after the chemo.. it all depends on how this tumor has responded and if the surgery team feel it can be removed now.

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Only about 3% of NCI’s budget is allocated to ALL childhood cancers. That's only about $197,000,000 it sounds like a lot but it’s not really. Children still get adult chemotherapy drugs just scaled down. They should have their own, a child's body is not just a small adult. I believe better drugs and treatment protocols need to be made available. TOO MANY KIDS ARE DYING.