Thank you all for your supportive comments an emails. It really meant a lot and I feel bad for leaving you hanging!
After reading all 270 abstracts (and all available articles–maybe 20) on pubmed, I started to understand more about IM. Honestly? I don’t think we have too much to worry about. The bottom line is that there were like 3 cases total that included children who presented with multiple tumors over the age of 2. So of 300 documented cases, there were about 2. IM is hard to diagnose, and therefore underreported, but I like those odds. And even in these late onset multiple cases, they were “easy” to treat with no visceral involvement. This is all very good news.
I shared my lit review and commentary with dr superstar. She loved it and asked me to send the electronic file so she can have her research asst get reprints for us. She’s also going to send them to the oncologist so that we all feel well informed going forward.
The toe is fabulously well now so the plan is to see superstar in about 3 months. In the meantime, we’ll see an oncologist on April 8th to discuss whether or not we need to go on a tiny tumor hunt (maybe ct scans of abdomen and/or head).
Until then, we’re just operating like everything is completely fine. And why the hell not.