Our Inspiration

by Iconjester

It all started in February. On the 8th and 25th he threw up, but wasn’t sick. Then in March he started getting headaches. We brought him to his GP. She had no ideas. We asked her to give us referrals to an ENT and neurologist, who was a headache specialist. The appointment with the neurologist was made for 4/19 and ENT for end of March. They were the first available. Mid March he complained of blurred vision and the next day his eye seemed to be drifting inwards, so we brought him to an optometrist, who said it was strabismus and to exercise the eyes and patch the good one. The symptoms, including the headaches, could be related. ENT said everything was fine and agreed it was strabismus. My wife wanted to see on ophthalmologist prior to seeing the neurologist. She said what if it is a tumor. I was annoyed and reassured her it wasn’t that.
She is incredibly persistent, so I made the appointment on 4/14 for the next morning. It was a three hour drive to get to one that took our insurance. My wife and son left at 5am and had an appointment at 8.
She called me and said the ophthalmologist saw swelling around the optic nerve and it was a medical emergency. Was either fluid or a mass causing it.
They drove an hour and a half to the ER of the hospital that took our insurance. It was between the ophthalmologist and our residence, so I met them there. He ate on the way so was unable to do the MRI. They did a CT and saw the mass.

“No family should have to have the burden of financial hardship while watching their child fight this terrible disease.”

Day 1 for Anderson: Woke up at 5, eyes dilated for the first time, ER for the first time, COVID swab for the first time, IV for the first time in hand that didn’t take, then in arm, then shunt placed in head. Finally fell asleep at 4 am, so awake for 23 hours, and woke up at 7.
He had brain surgery on 4/19, to remove the mass. The surgery was successful. There was a full resection. I found a clinical trial at St Jude’s and emailed the head of neuro oncology. He responded promptly and welcomed us to the facility.
We arrived at St Jude’s on May 2nd. His scans were clear and so was the lumbar puncture. He through 30 proton radiation sessions to his spine and cranium. We are now navigating the choppy waters of chemotherapy.
Due to this, my wife has lost her job. It has out a significant strain on our finances and our story is not an unusual one. No family should have to have the burden of financial hardship while watching their child fight this terrible disease.