heinz family

264 popes, 43 presidents, but only 40 cases of Alice’s tumor type documented

Ok, so this is a hard blog to write. My head is tired and confused and I keep thinking … when do I wake up … this is some weird dream.

I received a call from Alice’s oncologist yesterday at 5:40 PM, 2 weeks and 3 days after her surgery, with her final pathology report. I was unclear why no one was giving me the results and knew they were being sent off for 2nd (and apparently 3rd) opinions. Turns out Alice has an “extremely rare” tumor type. Her oncologist, who we’ve know and trusted for over 6 years, was, “for the first time in over 10 years stumped by a path report”. He told me it was the first time he didn’t know exactly what had to be done when we got a report.

Basically she has a tumor type that was only identified 9 years ago and there have only been 40 cases reported in the literature – generally in adults and rarely in the brain. These are encouraging words to hear. I thought I’ve had some overwhelming conversations with this man before, but this one took the prize.

They are now talking surgery. What surgery??? But we were clearly told this was in inoperable tumor. Yes surgery. Big surgery. No little cookie cutter surgery here. He then had conversations about permanent damage from surgery, risks of not doing the surgery (death obviously the big one), etc. I was overwhelmed. I kept trying to stay with the facts but it was difficult.

So they are now talking about operating on an inoperable tumor. There is no data about chemotherapy being successful on these types of tumors. Radiation is a possibility, but most likely with surgery.
Did I tell you that Stacy said if you polled 1000 neuro-oncologists you might find one who has seen this type of tumor in the brain?

Here’s the funny thing. I was not looking forward to this blood brain barrier disruption chemotherapy, but it was my hope. It was my hope that we’d do this and wipe all this shit out; my hope for a cure – or at least a remission. But now, it’s been taken away, struck as an option. Now we’ve moved into the area of being one of those case reports:
“#41, AH, a 12 year old female …”

So the plan is, tumor board meeting Friday (tomorrow) which Stacy will call me after and let me know what everyone there said – though he has already been talking to every brain tumor specialist he knows (and it’s a tight group – they know each other). Alice is to have another MRI and we go back to clinic Wednesday to talk surgery (or whatever).

And through it all, there is lots of strange humor (and tears) at our house. We’ve now moved out of “tumor humor” and into “rare tumor humor” (personally we don’t like our tumors rare, we like them well done – preferably FRIED). Humor is how we cope; laughter IS the best medicine.


And mostly, through it all, there is you. The love and support we have felt has been well beyond anything I could have imagined. We receive food, meals, money, gifts, and mostly (and most importantly) incredible love and support, prayer, and positive energy and thoughts.

So as we enter this season of light, I ask for one simple (yet amazing) gift for our holiday season – believe. Share hope. Believe in miracles and know we are living a miracle, thanks to all of you.

Peace and love,
Susan