Anaplastic Ependymoma

St. Louis Children’s Hospital

Olivia's Story

Looking at Olivia (Liv), you would never guess she’s been through brain cancer. Diagnosed with Anaplastic Ependymoma (cancer of the Central Nervous System), Liv has endured the removal of a brain tumor.

In December of 2018, Liv’s teacher called to state Liv was experiencing kaleidoscope images impeding her vision at school. She had been having headaches frequently, so her mom made her an appointment with an Ophthalmologist at St. Louis Children’s. Liv was diagnosed with Ocular Migraines. By February, Liv’s mom noticed that Liv’s learning was off, more specifically, math. She could master a skill in math, walk away to have dinner, return to concept and it was as if she never saw it. Liv was evaluated and diagnosed with ‘working memory disability’. Fast forward to April, Liv suffered a seizure coming home from a golf practice.

Liv was taken to a local hospital, immediately following the seizure. Liv was discharged with paperwork stating she had an unusual episode but not to be named a seizure because she was in active recovery. Liv’s mom was told by the doctor that lots of kids have one seizure and never have another, not to worry and wait until she has a second seizure and then they will test for epilepsy.

Liv’s mom left the hospital with Liv and went home with a very heavy heart and a very angered gut, which led her to call St. Louis Children’s Hospital the next morning. Liv had an appointment with Neurology in a week. In that appointment, an EEG and MRI were called for. The EEG proved Liv had a seizure in her Occipital Lobe (which controls focal vision), which connects the dots of Ocular Migraines. The MRI was done on May 20, and within hours Liv’s mom got the phone call that no parent ever wants, “Mrs. Leigh, the MRI is showing Olivia has a lesion in her brain that will have to be surgically removed as soon as possible!”

On May 30, Liv underwent brain surgery. The first call to Liv’s family from the operating room was to inform them that the ‘tumor’ had been successfully removed. This was the first time the lesion had been referred to as a tumor.  Liv came out of surgery like a champ and the tumor was sent to pathology.

When Liv’s mom received the pathology call 15 days post-surgery, a follow up visit was made with the Neurosurgeon and Oncology, her heart sank. “Why are we involving Oncology; what’s wrong?” thought Liv’s mom.

The follow up visit with the Neurosurgeon, Oncology and Hematology team was the third time Liv and her family received overwhelming news.  Liv’s tumor not only needed an Oncologist, it also had a name, Anaplastic Ependymoma, cancer of the central nervous system. Liv had grade 3 cancer. This type of cancer is specific to her spinal fluid and did not travel to the body nor lymph nodes. At this time, Liv was also scheduled for a spinal tap.

On July 7th, Liv started her six-week proton radiation, daily for 40 minutes, Monday through Friday.

Liv experienced headaches in August and she was back in Neurology.  Neuro sent Liv to see an Ophthalmologist and as quoted, her vision had changed. Liv’s mom was elated that Liv needed glasses and not another surgery. Moving forward, Liv will go for regular MRIs, on her brain every three months for five years. She will have an MRI on her spine every six months.

Liv is in a very good spot at this moment. She is currently cancer free.

How CMN Funds Help Liv & Kids Like Her:

Child Life made each Proton Radiation experience, hospital visit and scary meeting easier. Child Life became family to Liv’s family. Child Life painted with Liv and provided iPad fun as a distraction making scary appointments or treatments an experience she looked forward to. IPads were also provided allowing Liv to be a part of her classroom and connect with friends. Liv was able to stay current with her school work while absent and receiving treatment.