Welcome to William’s Page!

William received an MRI due to his eyes shaking at 10 months old. It showed "Bilateral optic pathway gliomas". This means there are tumors wrapped around both eye nerves from the back of the eyes through the brain.

We we're on a watch and wait, MRI and Eye exams every 3 months. November his eye exam showed more atrophy with his eye nerves. Means there is more death noticed to his nerves that allow him to see.

William started a MEK Inhibitor Mekinist December 2024. At his 3 month MRI February 28th it showed hydrocephalus. Which means there is fluid in the brain. His tumors grew so much it was cause his central nervous fluid to not flow correctly.

March 1st he had brain surgery for emergency permanent shunt placement. This shunt is placed in the middle and right side of his brain and drains to a device on the outer skull that monitors the flow then the fluid drains down his neck and into his belly to be released.

A week later he started to experience left left/foot weakness. They did another MRI and his tumors grew even more in 1 week. He went into surgery to receive a port placed in his chest. This port is to help reduce the amount of times he is poked by an IV needle into his arm, hand, foot, etc. It makes it easier to put an IV in for his weekly Chemotherapy treatments.

William got an updated diagnosis of "Bilateral Optic Pathway Gliomas and Gliomas of the Hypothalamus and Thalamus.". March 11th William received his first dose of his Chemotherapy treatment drugs Carboplatin and Vincristine.

His treatment plan is a 10 week induction. Which means he gets 10 straight weekly doses. After the induction round he starts his maintenance doses. This maintenance peroid is to have 8 rounds. Each round has 4 weeks straight of treatments. Every time he has to get treatments they do blood draws to check his labs to see how his body is doing.

Chemotherapy kills all cells, good and bad. It is especially hard on his liver and kidneys. With it killing good cells it drops his white blood counts making it easier to get infections or harder to fight off an infection. So if his blood counts are too low he would have to miss chemotherapy for a week and his routine gets pushed back every time.

If William gets a fever of 101 he has to be brought in to the closest ER for a blood work up to make sure he isn't septic. Meaning his body is infected and it happens fast and can cause his system to start shutting down.

Williams diagnosis isn’t a high mortality rate. He is able to live with this but there are life threatening symptoms these tumors cause and just symptoms that can effect his day to day living. He is loosing his sight.

The tumors can cause hydrocephalus again, on his left side. They can also cause; seizures, body temperature irregularities, behavioral disturbances, hormonal disturbances, sleep disturbances, hunger, body movements/functions, memory, cognitive functions, etc.

This treatment that he is on could stall the growth of these tumors, but for how long? We don't know. At any time in his life they can become active again and grow. They can grow fast or slow. No one knows. We also don't know how fast or slow he will loose his vision.

Every 3 months he will always receive Eye exams and MRIs. We take every day day-by-day. We hope and pray that this treatment will keep his tumors dormant for as long as possible.

William has been such a Warrior through all of this. He let's them take care of him every time hes in the hospital. Its like he knows he's there for them to help him feel better.

No 1 year old should have to go through any of this, no child at all!