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Update:
With a summer full of therapy, doctor appointments and small improvements, everyone was optimistic that Fiona’s 3 month post-operative MRI would bear favorable results. However, it showed residual tumor as well as some new growth. Fiona was able to begin 1st grade, but getting through a full day is exhausting. She is struggling with fatigue and double visions amongst other deficits. Fiona and her family are heading to LeBonheur Children’s Hospital in Memphis with the hopes of having the entire tumor resected and gone for good!
Fiona Rose Lytle just celebrated her 6th birthday March 20, 2023. Up until the age of 5 1/2, Fiona was sweet, inquisitive, and full of life. She always put others before herself. Fiona started Kindergarten during the fall of 2022 at Land O Pines Elementary School in Howell, NJ. She loved going to school. Fiona quickly made friends and loved learning. However, Fiona’s mom, Lisa, and her dad, John, started to notice that Fiona was acting differently. Fiona became more reserved, quiet, and lost interest in things she loved. Physically, Fiona looked pale, tired and thin. Additionally, Fiona, who never complained, started to complain about headaches and nausea. She requested naps often. Due to the severity of the headaches and nausea, Fiona did not want to go to school or partake in social activities. But like any good kid she made valid attempts to do the “normal” things kids her age did. Due to the totality of the circumstances and two worrisome parents, Fiona was taken to the doctor for a check-up and bloodwork. All appeared normal, but Fiona still didn’t feel well and the pain in her head increased causing intense nausea and fatigue.
Two days after her birthday, where she celebrated in obvious discomfort, Fiona was brought to the emergency room with an excruciating headache. Tests revealed that Fiona had a brain tumor, specifically, pilocytic astrocytoma. This tumor was the cause of Fiona’s ailments and discomfort. It was greatly affecting her ability to enjoy life as a 6-year-old. Fiona spent a month at Jersey Shore Medical Center in Neptune, NJ where she underwent four invasive brain surgeries, including a grueling 10 hour craniotomy. After spending a month in the PICU, Fiona was transferred to Children’s Specialized Hospital in New Brunswick, NJ for inpatient rehab, where she would relearn the basics like walking and feeding herself.. After a month of intensive rehab, Fiona was finally released to go home and would continue outpatient physical therapy, occupational therapy, speech and neurological therapies. She will have continued MRIs to determine future treatments.
Prior to the brain tumor affecting her quality of life, Fiona loved doing art, swimming, t-ball, and activities with her Daisy Troop. She enjoyed pizza and mint chocolate chip ice cream. She loved animals, feeding the family pigs and chickens and especially playing with her puppy Rosie. She always looked forward to family trips to Florida and sleepovers with Grandma. She was a proud big sister and loved teaching and playing with her little sister, Matilda aged 4. Fiona is slowly getting her life back and finding joy in these things again, but she has a long road ahead of her. We are so proud of Fiona and the courage and perseverance she has shown during this battle. The fight has been a challenge for our family, both emotionally and financially. We will be faced with multiple medical appointments, trips to rehabs, and childcare issues. We are optimistic Fiona will continue to flourish while undergoing intense therapy for the foreseeable future. We pray for a full recovery!
If you'd prefer to send a check for Fiona's family please send it to:
ILFKFC
c/o: Fiona Strong
P.O. Box 4064
Middletown, NJ 07748
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