Bio:
As a newborn, Jack's mom says he was extremely unhappy, but she was told he was just colicky. As their firstborn child, his parents assumed it was normal and hoped whatever was causing their son discomfort would resolve on its own.
Unfortunately, it lingered, and he got worse. In 2013, over Memorial Day Weekend, Jack's mom knew something wasn't right with her son. Jack was ill, unable to keep any food or liquid in his stomach including small sips of water. They struggled to find a diagnosis, and after a few weeks of continuing symptoms, Jack was sent to St. Louis Children's to see a gastroenterology (GI) specialist.
The doctor observed he was suffering from extreme dehydration, and Jack was admitted to the hospital for further care. After a full day of GI testing, there was still no diagnosis and Jack's medical team was trying to decide how to proceed. A GI resident sat down with the family and asked if they could think of anything else that might help them determine what was wrong with their toddler. Kellie thought for a moment and then shared that both Jack's grandmother and babysitter noticed him stumbling while walking. It was like a lightbulb went off in his head. Referring to the condition as a wobbly gate, the care team sent Jack to the imaging center for an MRI. After the procedure, the GI resident shared that Jack's MRI was abnormal and someone from neurosurgery would be in shortly to speak to the family.
Jack had a golf ball size mass lodged between his brain stem and cerebellum. The location was tricky — blocking the flow of spinal fluid causing Jack to develop hydrocephalus, which was fatal if left untreated. Within 48 hours, Jack needed to undergo brain surgery to remove the tumor. Unfortunately, Jack's first surgery didn't go as planned. They were able to resolve the hydrocephalus, but unable to remove the tumor. After a few days of rest, a second surgery to remove most of the mass was successful.
What they thought would be a two-week stay at St. Louis Children's turned into three months. Jack developed meningitis and after multiple rounds of antibiotics, he had a third surgery to remove all the hardware they had placed in Jack's skull during the first two surgeries. After that, things were finally turning around for Jack. He was attending therapy sessions with St. Louis Children's physical, occupational and speech therapists but as Jack was weaned off the medication his fever started to spike. A fourth, and luckily
final, surgery finally allowed Jack to fight the lingering infection.
In August, Jack was finally cleared to go home, knowing he would need radiation therapy as part of his treatment plan. His official diagnosis was grade 3 anaplastic ependymoma. For six weeks, Jack visited Siteman Kids at St. Louis Children's Hospital five days a week to receive sedated radiation. After six weeks of radiation, Jack underwent one round of chemotherapy each month from November to February — finishing right before his second birthday.
Today Jack visits St. Louis Children's to see a team of specialists that help with the late effects of cancer treatment along with his yearly scans. Radiation and chemotherapy are known to cause long-term survivorship issues including hearing loss, weight gain and chronic fatigue.
|