Elise is a 12-year-old girl who underwent brain surgery for hydrocephalus in December 2019, and who was subsequently diagnosed with a malignant neoplasm of the brain. She was treated with proton radiation at Massachusetts General Hospital (MGH) from January 31 to March 13, 2020. On April 6, she underwent surgery at Boston Children’s Hospital to implant a chemo port, remove an ovary for fertility preservation and to biopsy spinal fluid and bone marrow. One day later, she began chemo at the Dana Farber Jimmy Fund Clinic. Since then she’s struggled with fever, nausea, and drastic weight loss, and now requires a feeding tube. She has at least 6 more months of weekly chemo to go.
Elise lives with her single mother Susanne in Massachusetts (about 90 miles one-way from the hospital). Elise’s father passed away about 5 years ago from cancer, leaving her mother as the primary income-earner for the family. Since Elise’s treatment began, her mother has had to stop work. Elise and her mother have been staying near MGH at Christopher’s Haven whose motto is “A Home for Kids When Cancer Hits Home”. While the lodging costs are reduced, the family is struggling to cover lodging on top of home expenses, as well as out-of-pocket medical expenses.
Update from mom March 2022
Elise is doing well. Her most recent scan showed a small tumor that is likely scar tissue. Doctors will continue to watch that over the next two years. No change means that she is far less likely to have any recurrence.