It was October 2014. After suddenly losing vision in her left eye, Adela went to Sainte-Justine, where the medical team began investigating the potential causes. They first suspected juvenile macular degeneration, but a subsequent MRI showed what every parent fears the most: a brain tumour.
Adela was only 5 years old at the time. The tumour was biopsied right away. A few days later, the doctors had some good news for her family: it wasn’t cancer.
What it was, was a low-grade glioma, a non-malignant brain tumour that nevertheless continues to grow until adulthood. Its position in the brain can create significant neurological issues, some irreversible. Symptoms can include weakness, loss of motor control and vision problems. Given how close the glioma was to Adela’s optic nerve, chances were, as it grew, her sight would be in jeopardy.
A plan was quickly put into place: Adela was fitted with a port-a-cath device so she could start chemotherapy to keep the mass from growing any larger. The treatments went on for a year – a year that would be a very emotional one for her whole family.
Chemotherapy required spending one day a week at the hospital, complete with hydration rounds, blood tests and the chemo itself. Then there were the side effects. For every day of treatment, there were two or even three days of fatigue and uncontrollable vomiting, making Adela weaker and prone to dehydration. For her parents, Gabriela and Georges, seeing their daughter like that was heart-wrenching.
When Adela was feeling sick to her stomach, I would sometimes get terrible nausea, too. It often seemed to come out of left field, but it was because I couldn’t stand to see her suffer that much and go through this whole ordeal.
While they were caring for her, her parents did everything they could to make things as normal as possible and help her keep up with her school work. Gabriela stopped working for about two years to be there for the treatments. They even hired a tutor so she could catch up on anything she missed in class.
An 18-month pause in treatments was a welcome break, but not too long afterward a scan taken in the middle of a growth spurt for Adela showed that the glioma had followed suit.
Back to square one. More chemo. This time, at the end of the treatments, they didn’t take any chances. After check-ups every three months during the first year, it was decided to maintain MRIs every four months instead of every six in the second year. Unfortunately, at her first follow-up appointment in April 2020, the radiologist said the results weren’t what they had hoped.
Our morale sank to a new low when we got the news. When Adela saw how devastated I was to learn the tumour hadn’t shrunk, she’s the one who reassured me. ‘Don’t be sad, Mom. At least I’m here.’
New Hope on the Horizon
In early June 2020, in the middle of the COVID-19 lockdown, Adela, now 11½, started a clinical trial for a targeted therapy, under the supervision of Drs. Samson and Perreault.
This time, there are no weekly IVs at the hospital. The drug being used, trametinib, is given once a day in syrup form – a less invasive approach with much gentler side effects. The study has shown some promising results in stabilizing low-grade gliomas.
We are constantly thinking about finding more effective treatments with as few side effects as possible; it's what guides us through more difficult times, such as therapeutic dead ends for our patients. Donor funding, especially for clinical trials, allows us to tranform our dreams into reality.
Dr. Sébastien Perreault
For Adela and her family, the coming year will be filled with hope, but any sit-back-and-enjoy vacation plans will have to remain on hold until her tumour has been stabilized. In addition to their own resilience and determination, the family gets a regular morale boost from the team of caregivers who have been supporting them from day one.
Throughout our journey these past years, we have dealt with lots of doctors and nurses whose praises we can’t sing enough. We have always felt that they are really there for us, whether the news is good or bad. The donations to families like ours from the CHU Sainte-Justine Foundation and its partners have been incredibly helpful when things have gotten tough.
Illness can strike at any time – and it never takes a holiday, summer or otherwise. Fortunately, neither does Sainte-Justine.
Please become a front-line donor to support innovative research and treatment at Sainte-Justine and to reach out to families like Adela’s.