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. Even in 2023 doctors don’t know what causes medulloblastoma. Finley’s is 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 has 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 has high frequency hearing loss due to chemo and has 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 were due to bone metastases. Apparently the tumors spread outside the cerebral spinal fluid and are 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 trail, but it was short lived because her platelets couldn’t recover for the required threshold. She has been able to take etoposide and has tolerated it well, but it’s only a means to attempt to buy more time. There is no cure for our precious daughter and it’s only a matter of time before we have to say goodbye to our beloved Finley.
She had another PET scan in June that revealed widespread progression and her disease 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.
She has spent the summer visiting family and making memories. We are grateful Finley was able to start kindergarten, but is longer able to attend. She continues to go for weekly labs and has received palliative radiation, but each day is challenging as it’s the realization that we’re one more day closer to having to say goodbye to our precious Finley. Finley and other kids like her deserve so much more.
Update:
Our sweet Finley is no longer in pain and passed peacefully after 6 pm on November 9th. A beautiful thing I shared with a few people I was able to speak with is the last thing Finley said to me was "I love you". Right before she had pointed to my heart and then hers and said "I'll be in your heart and you'll be in mine." I didn’t know this was the last thing she would say to me. What a gift. Then last night when Dave and I told her we loved her we saw a tear form in her eye. Another gift we were given was that a few minutes after passing her expressionless face transformed into a beautiful smile. I miss her terribly already, but am filled with so much peace and am so thankful she is no longer in pain. We appreciate everyone's love, support, and prayers. ❤️
Dave and Theresa Price
