Finley was diagnosed at 27 months with classic medulloblastoma, group 3 myc amplified. Her symptoms were frequent falling, vomiting (clear and egg yolk appearance, and rapid onset the day of diagnosis), headaches all the week prior to diagnosis, and sensitivity to loud noises when previously they never bothered her (e.g., lawnmower). From the start, Finley was considered high risk due to her age and the fact that she had metastases down her spine. There are roughly only about 50 children diagnosed under the age of 3 out of the 350-500 cases diagnosed annually in the entire United States. It has been discovered medulloblastoma is present from birth, but even in 2024 doctors don’t know what causes it. Finley’s was not genetic, but there are some that are. Standard treatment is surgery, chemo, and radiation. All come with late term effects and the possibility of secondary cancers. There are different types of histology: classic, anaplastic, and desmoplastic. There are four different subtypes: group 3, group 4, WNT, and SHH. The five year survival varies depending on subtype. Typically group 3 has the worst prognosis with a five year survival of under 35%.
After the surgical removal of a 5 cm tumor from her cerebellum, Finley completed Children’s Oncology Group ACNS 0334 protocol. She had three months induction chemo at Brenner, three high dose chemo cycles with autologous stem cell transplants at Levine and 6 weeks of proton radiation at Emory where she had daily anesthesia. She spent close to 200 days inpatient, had five surgeries (resection, Broviac placement, g-tube placement, Broviac removal, port placement), lumbar punctures, countless bloodraws, countless ED visits, blood transfusions, platelets, monthly IV antibiotics, daily meds, immunotherapy, frequent MRIs, and monthly maintenance chemo. After her resection Finley temporarily lost the ability to walk. Some children lose this ability altogether, some become blind, and some become deaf. All children suffer the equivalent of a traumatic brain injury lowering IQ and cognitive abilities. Finley had high frequency hearing loss due to chemo and wore bilateral hearing aids.
Finley was stable (no evidence of disease) on her immunotherapy clinical trial with Dr. Johnson for two years, but due to concerns of secondary cancers we decided to stop treatment in March 2023. Unfortunately a week later we noticed bruising under her left eye and knots on her left temple. After moving her MRI up and having a PET scan we learned she relapsed with disseminated disease the beginning of April with large tumors found in her liver and lung. The knots on her left temple were due to bone metastases. Apparently the tumors spread outside the cerebral spinal fluid and were all throughout her body. This only happens in about 1-3% of medulloblastoma cases according to Dr. Theodore Johnson who has over 20 years of experience in relapsed medulloblastoma.
Finley was able to resume the clinical trial, but it was short lived because her platelets couldn’t recover for the required threshold. She was able to take etoposide and tolerated it well, but it was only a means to attempt to buy more time. There was no cure for our precious daughter and it was only a matter of time before we would have to say goodbye to our beloved Finley.
Finley had another PET scan in June that revealed widespread progression. Her disease had also spread to her jaws, which created pain and swelling that made eating very challenging. At this point we had to resort back to bolus feeds to keep her weight up. Finley received radiation treatment to her jaw, which alleviated her swelling and pain.
Finley spent the summer of 2023 visiting family and making memories. We were grateful Finley was able to start kindergarten, but her attendance was short lived due to rapid progression and pain. The last few months of Finley’s life she continued to go for weekly labs and received palliative radiation. We said goodbye to our precious Finley on November 9th shortly after 6 pm.
We learned after Finley died that the lump under her left arm was actually one of her ribs that had been pushed up due to tumor progression. Despite the immense pain Finley endured the last few months of her life she continued to live her life to the fullest up until the very end.
Finley and other kids like her deserve so much more.
Dave and Theresa Price
