Our cancer journey
the head tilt
In early August 2023 we noticed that Juliette’s head was consistently tilted to the left. We brought her to the pediatrician and she was diagnosed with an ear infection, but after completing antibiotics the head tilt persisted. With no other symptoms we then suspected muscle tightness in the neck or shoulder, but ibuprofen and heat pads had no effect. As August concluded we noticed Juliette experienced rapid onset fatigue and two episodes of abrupt vomiting. Unable to explain these symptoms we headed to the Boston Children’s Emergency Department on September 8, 2023.
THE DIAGNOSIS
September 8, 2023 was the worst day of our lives; it was on this day we heard the words “we are admitting you immediately, they saw something on the MRI.” There was a mass the size of a golf ball on Juliette’s brainstem. We were admitted to the ICU since Juliette was at risk of hydrocephalus and required a neurological exam every two hours no matter if she was awake or asleep. For four full days Juliette was confined to a single room, attached to monitors, getting evaluated every two hours day and night. A three-year-old is not meant to live this way, and it was soul-crushing watching her lose her spark due to this confinement.
SURGERY & RECOVERY
We didn’t see Juliette laugh or smile for five days following surgery. On September 13, 2023 Juliette was operated on for 10 hours to resect the tumor from her brainstem. The procedure caused irritation to some of the cranial nerves since the tumor was enmeshed with them. In the moment it’s impossible to know which symptoms are permanent and which are temporary. Juliette’s post-operative symptoms included inability to swallow, inability to speak, and inability to control her left eye (which subsequently created balance issues). Thanks to our world class neurosurgery team all of these symptoms resolved over the following weeks. And, most importantly, they were able to remove all of the tumor (known as a Gross Total Resection).
We were discharged on September 22 to continue recovering at home in anticipation of radiation.
RADIATION & (No) Chemo
On October 18, 2023 Juliette received her first of 30 fractions of proton radiation at Massachusetts General Hospital. The purpose of radiation is to eliminate any remaining microscopic cancer cells. For six weeks we drove into MGH every morning where Juliette was sedated so that she would be perfectly still while the radiation was administered. Her head was stabilized using the custom made “mask” that you see here.
Upon completion of radiation on November 29 we were presented with a decision to make: did we want to pursue chemotherapy? Chemotherapy for ependymoma is a controversial topic. Clinical trials have been unable to demonstrate a statistically significant benefit and so ultimately it is a personal decision. The potential side effects of chemotherapy include infertility as well as other cancers. And so it was presented to us as: what is our risk tolerance? If Juliette experiences a recurrence will we regret not pursuing chemo? Or will our regret be greater if we subject her to this pain for no benefit, and a recurrence occurs anyway?
We ultimately decided that we’d prefer for Juliette to regain her strength and revisit chemotherapy if we have to.
what’s next?
Juliette will require regular MRI scans of her brain for the rest of her life to check for tumor recurrence. She will be scanned quarterly for two years, then every four months, then biannually, and finally annually.
Tragically, Juliette’s tumor harbors a chromosomal mutation that is believed to increase her risk of recurrence. And when a tumor recurs survival expectations drop significantly.
There are some intriguing new therapies on the horizon but we are far from any guarantees.