We are the All American Family of four. The four of us are tight knit, loving the outdoors, history and travel. Road trips are our specialty, covering most of the Western United States by car, and even hitting spots on the East coast. Last fall, our oldest, Tyler, started to experience leg pain. He had been growing and so we assumed the leg pains were growing pains, as I remember experiencing as a kid. After a few weeks, it became obvious that something wasn’t quite right. We were referred to a pediatric orthopedic doctor.
Tyler was scheduled for an MRI, when our life changed. Tyler collapsed at school with stroke-like symptoms. After a ride in the ambulance and a CT scan, he was immediately admitted to the hospital with an entire team of doctors. No one could quite tell what was going on, but it became immediately evident that Tyler had an extreme amount of pressure on his brain due to extra spinal fluid.
The doctors’ focused on bringing Tyler’s brain pressure down. From there, they began several tests to work to identify what was causing the extra fluid in his brain. After an MRI scan, several little bubbles were found lining the bottom of his brain. Not having seen this before, the doctors agreed that this was likely causing his issue, but what were they?
It became evident that the non-invasive tests were going to identify the bubbles, so Tyler was scheduled for a brain biopsy. The biopsy was sent to St Jude’s for diagnosis, as it continued to be rare enough that the local physicians were not familiar with it. We began to prepare for the worst, while trying to stay hopeful.
After the longest week of our life, we finally had a diagnosis. Tyler had a rare, inoperable brain tumor. We quickly had to come up to speed on brain tumors, chemotherapy and all that entails.
Throughout the entire hospital stay, Tyler remained strong, routinely asking why he was in the hospital. These other kids that he saw were so much sicker than he was. He wanted to give his room up for one of those other kids. His humor in the hospital, inquisitive nature and his upbeat personality kept the doctors’ hopping. Some of his doctor’s even received homework!
While we were relieved to have a diagnosis, we began the toughest journey of our lives. We remain hopeful, knowing the strong fighter that Tyler is. His humor, personality and stubbornness are needed now more than ever. Here is where our journey begins…