Isabella (Bella) Snow Fraser: Reclaiming Childhood, Thanks to Immunotherapy

A Message from Emily Graton, Isabella’s Mother

Bella was diagnosed with alveolar soft part sarcoma (ASPS) in 2016. She was 6, just starting kindergarten. Bella had surgery to remove the tumor from her arm. Her doctors thought they were able to get it all out and that the tumor was not likely to return. However, a follow-up scan showed that the cancer had spread to her lungs. After more surgeries to remove the nodes from her lungs, Bella received chemotherapy for about a year, but her cancer kept growing. One of Bella’s providers informed us about a clinical trial that was evaluating atezolizumab (Tecentriq) for ASPS and we jumped on that opportunity. Since starting on the trial drug, the cancer has stopped growing and there have been few to no side effects. She seems healthier than ever. It is like Bella is back to normal.

The first sign of Bella’s illness appeared when she was 6 years old. She was reaching over the bathtub and got a bump on her arm. Initially, the doctors thought it was a deep bruise that might take months to heal. Months went by but the bump never went away. At that point, the doctors suspected nerve damage, which led to an ultrasound. After the ultrasound did not show anything, she was taken for a biopsy. The mass was taken out of her arm, and the biopsy led to her diagnosis of ASPS. My mother had been diagnosed with stage IV lung cancer earlier that year. And now my daughter was faced with one of the rarest cancers in the world. It was a very scary situation for our family. But I was determined to find everything there was to know about the disease and work toward a solution.

After Bella’s surgery, we went back for routine scans to ensure that the cancer was no longer growing. About five years passed without incident. I became involved with some online forums of fellow patients with ASPS, and someone suggested Bella should have more follow-up. At our request, the doctors ordered additional tests. And as it happened, her chest scan showed that the cancer had spread to her lungs.

Bella had more surgeries to have three of the lung nodes removed. She then started on a clinical trial that was testing an oral chemotherapy. She stayed on the study for a year, but the treatment was not working. The masses continued to grow, and she had some serious side effects. This was also during the pandemic. I missed a lot of work and Bella missed a lot of school just trying to fight this off. Fortunately, one of Bella’s providers called me about a promising clinical trial for patients with ASPS that was testing the immunotherapy atezolizumab. We were on standby for a while because of Bella’s age. But once the trial gave us the go-ahead, we couldn’t wait to get started.

Bella’s initial treatments on the trial were at the National Cancer Institute, so we had to travel for several weeks at a time. Bella missed a lot of school and I had to change jobs. Then she began receiving treatments at the Dana-Farber Cancer Institute in Boston. It’s still a four-hour trip each way. Every three weeks, we get up at 3 a.m, drive to the bus, take it to Boston and then make our way to Dana-Farber. It’s a challenge, but I would travel across the world for Bella, for a chance to beat this cancer.

Atezolizumab has been remarkable in many ways. First, the cancer has stopped growing. We haven’t seen any growth in over a year, but we are really hoping to see some shrinkage in her cancer. As soon as we see that, we’re going to have a celebration.

Also, there are minimal side effects. Bella gets an IV infusion for 30 minutes, which is a lot shorter than her prior treatments. She is happy, her hair is growing back, she wants to eat, and is active. I’m very thankful for this drug and what it has done for Bella. Her biggest side effect is fatigue. She needs more sleep. So, we schedule everything around Bella, to make sure that she’s doing okay. It is amazing to see how positive she stays throughout it all. She is a champion.

I cannot overstate the importance of funding cancer research. Without clinical trials such as the one in which Bella is participating, and without the funding to make this research happen, Bella would not be able to run around like she does today. She would not be able to enjoy these times with her family and friends. Because of cancer research, she gets to live a normal life; she gets to smile more. Without these treatments, it would just end.

Patients, families, and their communities rely on these treatments. Kids like Bella are our future. Without them, we are not going to go forward. By focusing on these new treatments, research can provide the best that the future has to offer. Healing those who need it the most will lead to a better world. I am hopeful. Looking toward hope can be exhausting sometimes, but it’s all worth it in the end.