Juliette's first clean scan!

Jan 02, 2024

Happy New Year!

Juliette had her first quarterly MRI this past Friday, December 29th; we're happy to report that the scan showed no evidence of disease! While the first scan is expected to come back clean, it was still relieving to hear the news delivered by our oncologist. It's an exciting milestone but we have more scanxiety ahead of us as we know most relapses occur in the first two years following tumor resection.

What’s next?

We have the most thoughtful community; we're forever thankful for each of you. We’ve had so many of you reach out and asked us how we’ve decided to proceed - to start chemotherapy or not. Chemo is not a standard treatment for all ependymoma patients, and was offered to us as a result of Juliette's tumor exhibiting high risk molecular qualities.

We’ve decided to hold off on chemo for now as the data does not demonstrate a clear benefit for children with ependymoma and the risks are significant (including leukemia and infertility). Additionally, chemo is extremely hard on the body and if her health is reduced when a relapse occurs it could disqualify her from participating in some clinical trials. Subsequently, we are focused on returning Juliette to full health so she has all of her strength to fight again if she needs to.

In the meantime we’re researching and staying current on clinical trials and drugs to help prevent/treat a recurrence. Some examples include PNOC027 (a personalized treatment plan based on the results of 200 drugs being tested against fresh tumor tissue), MEMMAT, a diabetes drug called Metformin that has demonstrated some anti-tumor qualities, and FECO.

For now we are holding onto every word, giggle, and smile that Juliette shares with us.

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