On January 20, 2021 a team of two pediatric hematology-oncologists, a social worker, and a resident sat us down for a third time to deliver the final diagnosis, RAM-phenotype acute myeloid leukemia (AML-RAM) with CBFA2T3-GLIS2 fusion, a disease unique to children under five years of age. One oncologist had to write it all out for us, because it all sounded like white noise, then we heard “no one has survived this diagnosis.” Hearing about Aspen’s certain mortality brought us back. The team continued that the disease is rare, aggressive, resistant to chemotherapy, and associated with grim outcomes (>8% of survival, now with relapse its zero). We took the approach that Aspen could be the first to survive and pushed forward with a treatment plan.
Aspen would need to complete at least two rounds of inpatient chemotherapy, but as many as it takes to reach no evidence of disease (NED). As soon as the disease was destroyed, Aspen would need to exigently proceed to a stem cell transplant. Even with the transplant Aspen had a high-chance of relapse. The road ahead looked clear as mud, filled with fear, anxiety, and a profound sense of loss.
Shortly after the diagnosis, after we had time to gather ourselves we were connected with another family whose daughter, Ella, was diagnosed with the same disease as Aspen and one of the only known people alive, in sustained remission. For context, Ella is one year older than Aspen, and about a year ahead of her in treatment. We chatted with Ella’s parents, Christina and Joe, who introduced us to Project Stella, named for Stella Novotny, a little girl who unfortunately did not survive this disease. Stella’s parents channeled what energy they could muster to establish Project Stella as means to raise funds so other kids would have more treatment options.
Project Stella directly funds research being done by Dr. Soheil Meshinchi in his lab at the Fred Hutchinson Cancer Institute. Dr. Meshinichi is the leading researcher for all things related to AML-RAM. On January 13, 2022, the results of a routine biopsy showed that the cancer returned, Aspen relapsed. Now, Aspen is among ~10 children directly benefiting from Dr. Meshinchi’s research. Specifically, Dr. Meshinchi found that a certain cervical cancer drug known as STRO-001 was also effective in children with AML-RAM due to certain similar characteristics.
In order to advance the research needed for more therapies to treat this diagnosis and potentially provide a cure, more private donations are needed. Many people think that pediatric cancer research is well funded by grants, government or otherwise, but it is not. We found this out when Aspen was diagnosed and it was a hard punch to the gut, Aspen’s diagnosis is considered rare so many times it is bypassed by grants and funding. This is a boots to the ground type of situation, and we need funding to move the research forward. Aspen has already relapsed; we need to find a cure before it’s too late.
PLEASE HELP US FIGHT!
Every dollar donated between February 1 and June 30, 2022 will be matched dollar for dollar! Please help us cross the finish line by donating today! Remember, 100% of all donations go directly to Project Stella research at Fred Hutch (501(c)(3) non-profit). If you have any questions or need Tax ID information, please let us know.
If you’d like to mail in a check, please make it payable to “Fred Hutchinson Cancer Research Center,” include “Project Stella – Aspen Peck” on the memo line. The mailing address is:
Fred Hutchinson Cancer Research Center
1100 Fairview Ave. N., Mail Stop J5-200
Seattle, WA 98109
From the Project Stella Website:
Thanks to our visionary supporters, as of February 1, 2022 we have received gifts and commitments of $1,678,000 toward Project Stella’s $2 million overall goal. While this success has fueled rapid progress in the research, we can’t allow the momentum to slow, or stop, because of funding limitations. To have a chance of having a treatment ready for testing in a clinical trial by the end of 2022, we need to press on and raise the remaining funds necessary to do this important work. Because of the generous support of over 500 donors the research team has recently completed the creation of a potential new CAR-T Immunotherapy treatment option for these rare AML types. Immediately, additional funding is needed for the completion of all Project Stella related research, including the process development and testing required for submission for a clinical trial.