St Judes Children's Hospital

OPTIC PATHWAY GLIOMA

Will's Story

Little Will has been battling cancer for most of his young life. 

When he was 7 months old, Will fell out of his car seat.  His parents took him to their local emergency room, and as a precaution, doctors performed a CT scan. What that scan revealed sent shock waves through this family—there was a mass growing on their baby’s brain.
   
His parents didn’t know what to think or do. His mom remembered, “We were completely devastated. We thought, ‘Our baby has a brain tumor. Number one, we can’t do anything about it, and number two, he might die.’”

Will was diagnosed with an optic pathway glioma, which is a dangerous tumor that grows on the pathway connecting the eyes to the brain. Doctors operated immediately to remove as much of the tumor as possible, and then referred Will to St. Jude Children’s Research Hospital hoping to save his life.

While At St. Jude's

At St. Jude, doctors placed the baby on a protocol of chemotherapy and did routine scans to monitor the tumor. Sadly, after finishing treatment, an MRI revealed that the tumor was growing back. “We felt like we’d been kicked in the stomach,” said Will’s mom.

St. Jude staff redoubled their efforts to save this little boy and performed a second operation and placed him on a three-year chemotherapy protocol.  Will’s mom said, “This will be a lifetime medical issue for Will, but we’ll always have St. Jude.”

Thanks to friends like you, St. Jude offers hope for survival to children like Will. That fact is a great comfort to Will’s family. His mom said, “Everyone at St. Jude genuinely cares about my child—they are here for one common goal: to help my child get better, and the next child and the next.” 

Thank you for sharing in this goal of finding cures and saving children, and with your help, St. Jude will never stop fighting for children like Will.

September 2010 Update

Will continues to receive chemotherapy, and he's feeling well. He loves playing with his friends at daycare.

Deflinition: 

A childhood optic pathway tumor occurs along the nerve that sends messages from the eye to the brain (the optic nerve). These tumors may grow rapidly or slowly, depending on the grade of the tumor. More than 75 percent of these tumors occur during the first decade of life. Most are diagnosed in children 5 or younger.

• Incidence: 

1. Optic pathway tumors constitute up to 5 percent of primary central nervous system tumors in children.

• Influencing Factors: 

1.  An association with neurofibromatosis is present in 50-70 percent of patients with isolated optic nerve tumors and        in 16-20 percent of patients with chiasmal or deeper optic tract tumors.

• Clinical Features and Symptoms: 

1. Signs and symptoms depend on the specific location of the tumor and the age of the patient. Young children usually don’t complain of the slow and progressive visual loss that is characteristic of these tumors. Children younger than 3 are usually taken to the doctor because of obvious developmental delays. Infants display head tilt, head bobbing, and nystamus (oscillation of the eyeballs.) Growth and endocrine disturbances can also be symptoms of optic pathway tumors.

• Survival Rates: 

1. Greatest risk is loss of vision in one or both eyes, but overall, survival is near 90 percent.