Sophia had a very challenging battle with cancer. At age three, she was diagnosed with leukemia (blood cancer). She relapsed around her fourth birthday, and had to have a stem cell transplant, a very serious life saving procedure that was fraught with complications. She spent most of 2017 in the hospital.
The transplant cured the leukemia, but caused devastating side effects, including a blood disorder and a brain injury. Then, just a few months into the COVID lockdowns, Sophia presented with some unusual symptoms and was diagnosed with a terminal brain tumour. Surgery, radiation, and chemotherapy extended her life for a short time, until she sadly passed away in November of 2020, just five months after her brain tumour diagnosis. She was seven years old.
What her family discovered during this ordeal is that brain tumour research, despite being the most fatal cancer for people under age 40, is grossly underfunded and lags far behind other cancers in terms of treatment options, especially for children.
When Sophia was dealing with leukemia, there were protocols and trials and medication options. But almost nothing was known about the type of brain cancer she had. It is incredibly hard for her family not to dwell on the fact that had more treatments options been available, Sophia might still be with them.
What her family also found was that while there are lots of charities working to provide support or experiences for children with cancer, none are really set up for the palliative situation. Some charities require that a child be "on active treatment.” Since palliative care often centers on keeping a terminal patient as comfortable as possible, it may not fall into that category. Others have long application time frames, time a child in palliative care may not have.
Her family never applied for help from any of the big charities when Sophia went through cancer the first couple of times, because they assumed that it was for kids with more serious prognoses than Sophia’s. By the time Sophia received a terminal diagnosis, they had a very short window in which to apply while she was still well enough to benefit.
If Sophia had survived a bit longer, they would have wanted as much help as possible to make happy memories with her, as that is all they have left now.
Having met Caleb and his family through Sophia's journey, her family was delighted to hear that Caleb's Trio of Hope will focus on brain tumour research and supporting families of palliative kids, as these are two areas that are currently overlooked.
