Scan #6 | 2 Months Since Relapse
First, we want to thank you all for your incredible generosity supporting our personal fundraiser. Your donations funded the drug screen that we’re actively using to guide Juliette’s treatment, as you’ll read below.
Today is International Ependymoma Awareness Day. For about a week we’ve been planning on using the occasion to provide an update since we’re overdue. It’s especially top of mind since we learned of the passing of six-year-old Cameron Corno on June 6; she had the same diagnosis and chromosomal mutation as Juliette. Cameron fought bravely for five years and her parents have been incredible advocates for ependymoma research and treatment. We are holding them in our hearts as they navigate their grieving process.
One sentence summary: Juliette’s 4/30 scan was clean and she’s continuing to receive immunotherapy with some side effects, but there’s still no expectation that this treatment is curative.
Scan day on 4/30 went well as usual, and included a surprising milestone. It continues to be encouraging and heartbreaking to see Juliette’s excitement when we wake her at the crack of dawn. She opened her eyes and happily cheered “mommy and daddy day!” while our stomachs were knotted in anticipation of the scan; we have a lot of practice hiding our anxiety from her. The milestone that caught us by surprise is that Juliette walked by herself to the anesthesia room for the first time. We watched as she confidently strode down the hallway in her hospital gown, then when she got to the doorway she looked back at us and smiled and waved. Once she stepped into the room we were in shambles.
We’ve settled into a treatment routine where we alternate bringing Juliette into the clinic every other week. It’s a long day but the Jimmy Fund does an amazing job providing fresh crafts every week. I also want to praise volunteers from The Hole in the Wall Gang who lead the kids through crafts each week - Juliette absolutely loves Jeremiah.
Last week was the first time we were given the option to delay the immunotherapy infusion. Juliette had had some minor symptoms in recent weeks: enlarged papillae and rashes on her legs. We’ve been able to manage these symptoms with antihistamines and hydrocortisone, respectively. But last week we shared symptoms with our oncologist that prompted her to diagnose Juliette with low grade colitis. Colitis is very common with immunotherapy. We decided to push forward with the infusion but the experience was a stern reminder that nothing is “free” when it comes to treatment, there’s always a side effect.
On Memorial Day we started a new daily treatment to supplement the immunotherapy: atorvastatin, aka Lipitor. Some research suggests that atorvastatin has anti-cancer effects and it demonstrated moderate efficacy in Juliette’s drug screen. Overall it’s a very safe drug falling into the “low downside, high upside” bucket. We are evaluating another drug from the drug screen that works synergistically with immunotherapy but the side effects are more substantial. The tentative plan is to start this new drug after the next MRI in late July.
If you’ve made it this far you may be wondering “why did they write that there’s no expectation that this is curative? Then what’s the point?” There’s a lot that we don’t know about ependymoma. The gist of what do we know is:
Complete resection carries the best prognosis.
Ependymomas tend to develop rapid resistance to therapies.
Juliette’s tumor has characteristics that have been deemed as “ultra high risk”.
Once a tumor recurs, it tends to recur again and again with each recurrence happening more quickly than the last.
With that in mind our strategy is to play the long game. We want to delay the next recurrence for as long as possible while maximizing Juliette’s quality life, with the hope that the tumor inexplicably doesn’t return or that research develops an effective treatment. We are leaning on precision medicine to identify effective interim treatments.
What You Can Do
Our ask of you: activate your networks to support pediatric cancer research. June is National Cancer Survivors Month. Political decisions have led to massive cuts that threaten the future of many labs and researchers. We have written a message that you can use for social media:
Brain cancer patients need your help now more than ever. Survival rates for adult and pediatric patients with brain tumors have not changed significantly over the past 45 years despite major improvements made in the treatment of other cancers. Many labs have had to suspend their work as a result of funding cuts made by the Trump administration. Please consider donating to the Ependymoma Research Foundation.
