I am participating in the 2019 Boston Marathon® Jimmy Fund Walk presented by Hyundai, taking steps toward the ultimate finish line: a world without cancer! Most of you know that I am a out of shape grandfather who just learned that one of his beautiful 11 grandchildren has brain cancer. Of course this just breaks my heart. However, if Olivia can fight this disease with her warrior spirit and her beautiful spirit I am all in with her. I ask that you read her story below and join Olivia, her family and friends in her fight. Please join our team, participate and contribute. I thank you.
What do you LIV to do?
Olivia Leigh is our 9 year old daughter living in Ofallon, MO. Liv has been a healthy, happy and energetic child till this experience and year. Liv has three older siblings: Maddi is 20 yrs, Mackinna is 18 yrs, and Johnny is 15 yrs. Liv is a family of six with both mom and dad (John and Nicholle Leigh), as well as two dogs, Brody and Gunner. Liv attends John Weldon Elementary and will be starting 4th grade in the Fall, 2019. The Leigh family is very active and many siblings play soccer very competitively. Liv tried soccer and quickly realized she doesn't like contact sports and doesn't like being pushed around. Liv has paved her own path and has gone to golf and tennis as her sports, which she enjoys very much.
Our medical journey with Olivia started in December 2018, when Liv started seeing 'color wheels' in her vision. These color wheels started to impede her vision at school while trying to see the smart board. She was experiencing headaches but not at the time of the color wheel episodes. We took her to an Ophthalmologist to get her eyes looked at. They dilated her eyes and had her read an extensive chart, where they determined she was healthy with very strong/healthy blood vessels behind her eyes. Her vision was excellent and being she wasn't having color wheels accompanied with headaches, we were sent home with the understanding that if these color wheels came more often, changed or were accompanied with headaches, then come back. When I went home I started to journal what was going on in Livs life to make a rhyme or reason out of color wheels and headaches. I saw no connection.
School conferences were in February, 2019, and I went equipped to discuss the fact I felt there was something off in Liv's learning, work and progress. She had been struggling since early on and pulled out of class every year for interventions, reading recovery and math group help. She works so hard at home and at school while being a great student and super hard worker, this just all didn't make sense. I wanted her checked for a disability or to see if there was a problem we weren't seeing. She was evaluated by a Psychologist at school and diagnosed with 'Working Memory Disability'.
In April, Olivia suffered a seizure on her way home from golf practice. She fully hallucinated before she seized, threw up and became incoherent. By the time I got her to the hospital her body had started to recover and she was very sleepy. With her body correcting itself the doctors in emergency didn't diagnose her, they said she had an abnormal circumstance, discharging her to go home and resume normal activity. They said lots of kids have one seizure and never have another. We don't have a history of seizures in our family so this didn't settle well with me. We went home and I knew I would make calls the next day to insurance and Neurology.
The next day came and I did call insurance which is when they told me I didn't need a Doctors referral to go to Neuro. I called St. Louis Children's Hospital Neurology and they listened to me. They got Olivia in for an appointment with a Neuro Nurse Practitioner, Emily Rhodes in 1 week. Once that appointment took place Emily Rhodes called for an EEG. The EEG took place on May 6, 2019, and proved that Olivia didn't have an abnormal circumstance but definitely had a seizure in the Focal Lobe of the brain. Dr. Emily Rhodes then called for an MRI to see if Olivia had and underdeveloped areas in the brain from birth. The MRI took place on May 20, and I was quoted 1-2 days for results. I was given a call in less than 6 hours by Dr. Rhodes stating that Olivia had a lesion just shy of 1" in her occipital lobe of brain, which controls vision. This was all starting to make sense about her color wheels. Dr. Rhodes also told us that this lesion would have to be surgically removed. She made us an appointment with Dr. Matt Smyth, Neurosurgeon who would be performing her surgery. Our consult with Dr. Smyth was May 22. At this appointment we were informed of the surgery and the location of lesion in her brain. We were also informed of the risks involved. The risks were (1) vision loss (2) blood transfusion, location of lesion was pressing again main artery to brain, therefore blood transfusion if artery nicked in surgery. Surgery was scheduled for May 30, 2019 at 8 am.
On May 30, Dr. Smyth successfully removed Livs tumor. We were told going into surgery that we would be given updates every hour from operating room. Second update came and this is where they referred to Liv's lesion to 'Tumor'. My heart sank at this word, I hate this word. Before this it was always referred to as a lesion. The tumor was successfully removed in entirety and they were very happy with the size, shape, texture and removal. I was happy to hear all this but still hanging on the word tumor. The tumor was then sent to pathology and we were quoted 7-10 days for results. 10 days came and went, then I called, it took 14 days for the results. I went back in for results with Neurosurgeon and Oncology, another word I don't like. Follow up appointment with Neuro and Oncology was June 13. June 13, our lives changed, the tumor was given a name and it wasn't benign. This Tumor was Anaplatic Ependymoma and she was grade 3, 4 being the worst. My heart sunk and I wanted to throw up. Grade 3 is because its aggressive. Liv's color wheels she was seeing in December was probably the first symptoms of the tumor growing. Its aggressive but apparently, so are we.
After meeting with Dr. Smyth we pressed on that day to meet Liv's Oncology team. This included Dr. Gauvain and Dr. Perkins, both out of St. Louis Children's Hospital. Liv's was set up with Make A Wish, and many other supportive groups. We also scheduled an MRI of her spine on July 5, and following this is a Spinal Tap the same day. Being this cancer lives in the central nervous system fluid, she must be cleared of spine before proceeding. If the spine is clear, Liv will endure 6 weeks of radiation everyday for 30-40 minutes (excluding weekends and holidays). If her MRI shows anything then this changes everything.
After, surgery - 3 weeks to be exact, Olivia was cleared to travel to California to watch her brothers soccer showcase. We were overjoyed that she could go and we could spend a week in California celebrating family time. This was most of our families first time seeing/experiencing the ocean, Olivia being one of them. She dipped her toes in the sand and then some. She collected sea shells, ran the beach and soaked up the sun while we as a family soaked her up, every inch of her. I've always heard the ocean is medicine for the soul, after this vacation, I truly believe there is no truer statement.