After visits to an ophthalmologist and a neurologist, who both ordered an MRI, a large mass and build up of fluid was discovered deep within Alyvia’s brain. “At that point, she was taken straight to emergency,” explains Karla. She further notes, “It was surprising that she was still functioning as well as she was based on what they found.”
Alyvia was diagnosed with paediatric low-grade glioma, which is the most common type of central nervous system tumour found in children.[1] Due to the size, shape, and location of the mass, surgery was not an option. Further complicating matters, while it was initially thought hers was a slow growing cancer, “It definitely didn’t act that way,” says Dustin.
Traditionally, chemotherapy would have been Alyvia’s only hope. However, as Karla explains, “We were really fortunate because our oncologist knew about and was an advocate for molecular profiling.” This is a new strategy transforming therapy for hard-to-treat cancers. Samples of Alyvia’s malignant cells were sent away to a lab where the cause of her tumour was identified, a mutation referred to as BRAF-V600E. It is known to respond poorly to chemotherapy.[2]
Fortunately, there was a medication available that zeros in on and prevents the expression of Alyvia’s mutation. However, says Karla, “This type of treatment for children was still at the trial stages, and available only after chemotherapy fails.”[3] Adds Dustin, “To have this Plan B available, we had to go through quite a few time-consuming steps. We needed to get approval to use this targeted therapy with someone as young as Alyvia. Although, we were hopeful, there were no guarantees. We faced the prospect that Alyvia would not receive the medication.”
In the meantime, Alyvia started chemotherapy, which was very hard on her young body. She suffered extreme nausea and nerve pain. The mass continued to grow, more than doubling in size. A decision was made to stop chemotherapy. “We needed another option,” recalls Karla, “and were told we did not have months to figure it out.”
Alyvia quickly deteriorated. She lost all movement on one side of her body because of the pressure building up in her brain. She couldn’t swallow and was on feeding tubes. Things became so dire that Alyvia’s parents were facing the prospect of transitioning to palliative care.
Fortunately, approval and access to the targeted treatment came through just in time. “Remarkably,” says Karla, “once we got her on the medication, her tumour quickly shrunk in size. She went home within a week. That was how fast the response was. Three years later, the mass remains stable as long as she keeps taking the medication. It’s almost unbelievable.”
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Despite Alyvia’s remarkable turnaround, her treatment is not approved as a first line of defense. “That’s why,” say Karla and Dustin, “we are passionate about sharing our story so it can help pave the way for others to benefit. If kids like our daughter can skip the ordeal of chemo and get on medication that targets their cancerous mutations right away that would make a big difference.”
When asked what she looks forward to, Alyvia breaks out in a big smile and exclaims, “I am excited to go to kindergarten!” In the meantime, she enjoys playing outside and is learning hip-hop dance. “She is,” says Karla, “a tiny party waiting to happen.” She marvels, “For all this to be possible. I mean, when we started, we were on a wing and a prayer. Dustin and I had no idea that getting to where we are today would be possible.”
