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The cancer is back. We are devastated.
Devastated because when it comes back once, it tends to keep coming back. Devastated because the tone with our oncologist has shifted from “survival is possible” to “survival is unlikely.”
There is no standard of care of recurrent PFA ependymoma. Said another way, there is no treatment that has been reliably effective for even a subset of patients. This means that we as parents have to decide what the next step is. Most cancer patients will enroll in a clinical trial when the standard of care runs out, but we have been monitoring clinical trials since diagnosis and there’s only one that we’d consider (more on that later). With no clear next step, the last five weeks have entailed meetings with two neurosurgeons, two radiation oncologists, four oncologists, and a scientific director of brain tumor research in order to source perspectives as we develop a plan and propose it to our oncologist.
That’s right, we initiated the majority of these conversations on our own. Why? Well, oncologists can only recommend treatments that have been proven “safe” (these include chemotherapy regimens that carry significant risk like other cancers) or clinical trials. So what happens when the only “safe” treatments offer no statistically significant benefit and the clinical trials are generally inadequate? That answer will vary from family to family. Since October 2023 we’ve spent nearly every night networking with other ependymoma families and scouring the National Library of Medicine for information on ependymoma and other brain cancers. In light of this, we took it upon ourselves to lean into our cancer network and reach out to some of the researchers and providers we learned about over the last year.
Below are the decisions we’ve made based on our research and the input we’ve received so far:
- Juliette will have brain surgery on March 4 to remove the tumor.
- The tumor tissue will be submitted to a drug screen to evaluate how the cancer cells react to different therapies; the hope is that we can use this to inform a future treatment decision.
- Juliette will begin receiving biweekly immunotherapy.
- We are not pursuing radiation at this time. The tumor is growing on Juliette’s brainstem and re-irradiating carries the risk of risk necrosis which can be catastrophic, especially if it occurs on the brainstem. Necrosis risk decreases over time so we may choose to irradiate in the future.
- Related to the above, the only clinical trial we considered is Indoximod and it is suspected that Indoximod is most effective when it is paired with radiation; therefore, we will reevaluate at a later date if we decide to administer radiation.
WHAT YOU CAN DO
I suspect some of you are wondering how you can help. For those who would like to support us by providing meals, toys, etc. we ask that you make a (tax-deductible!) donation here so that we have the control to leverage your generosity at the right time.