Hello to everyone - I haven't posted yet but I'm really glad this
group is going again - thanks Michelle.

Just wanted to share that Zoe finished her last proton beam radiation
treatment on Monday, marking the end of her planned course of treatment.

Her tumor was in the upper/left/back part of her brain. She had a near
total resection + chemo + 28 radiation treatments (she got the COG
99703 protocol: 3 rounds of vincristine, cisplatin, cyclophosphamide,
etoposide and 3 rounds of carboplatin, thiotepa w/ stem cell rescue).
Now we move on to MRIs every 2-3 months, and start mopping up all the
medical debris left over from treatment: feeding issues (she's still
on TPN and NG feeds, doesn't eat by mouth), hearing loss issues, and
monitoring for long-term side effects.

It is a nice milestone to achieve, but it is also scary. Especially in
light of all the losses our group has experienced over the last month.
Surviving ATRT long term still seems to be more about random luck than
anything else. I wish, as we all do, that there was a more definitive
answer - a "sure, we can cure this" kind of plan.

Though I am glad to move beyond active treatment, my heart is heavy
thinking of all our ATRT kiddos out there. To the families of those
who have departed: Blessings and wishes for peace, comfort, and the
capacity to keep putting one foot in front of the other on all those
days when it feels so impossible to do so. To the families of those
still surviving: onward and forward, as long as we can.

Love to you all - Mette Earlywine
www.caringbridge.org/visit/zoeearlywine