Scan #3 | 11 months since dx
What a July! We took our first international family trip to Portugal for Uncle Ryan’s wedding; Juliette was the most adorable flower girl. We celebrated Juliette’s fourth birthday on July 28. And two days later we headed into Boston for her third MRI. We’re thrilled to report another clean scan!
It’s incredible seeing how upbeat and brave she is. When we woke her at 5am we explained that we needed to drive into the city so the doctors could take pictures of her head, she immediately smirked and replied “sounds like a quick trip!” When it was time to place her IV she didn’t even cry, which she proudly shared multiple times that afternoon. (I would be remiss if I didn’t celebrate the incredible nurses at Boston Children’s who administered local anesthesia to Juliette’s hand and expertly placed the IV on the first try.)
The following day we returned to Boston, this time to meet our oncologist at Dana Farber. Juliette breezed through the neurological exam while playing “keepy uppy” with an inflated purple latex glove. We spent some time aligning on our relapse plan in the event the tumor returns, and discussed some active initiatives at Dana Farber Cancer Institute that are relevant for pediatric brain cancer.
what we’re watching and doing
Ependymoma Research Foundation is soliciting proposals now and will be awarding two $50,000 grants. Thank you all, from the bottom of our hearts, for making our fundraising so successful.
We are awaiting updates on B7-H3 CAR T Cell Clinical Trials, as B7-H3-CAR T cells have promising antitumor activity in preclinical models.
A potentially groundbreaking discovery was shared on July 9, where a feature unique to PFA ependymomas was identified: TULIPs decorate the three-dimensional genome of PFA ependymoma.
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