Zachary Blake Goza was born on an August morning in 1992 in Abilene, Texas. He was a beautiful 9 pound boy with the biggest blue eyes you have ever seen. He was my first child and I never knew I could love any one person so much.
Zach grew into a happy, healthy boy who loved playing with his friends, swimming in Nana & Papa's pool, Pokemon and his Nintendo. He played baseball and soccer just like every other boy his age.
Then, on a Sunday afternoon in the summer of 1999, Zachary returned from a vacation trip with his dad. When I met them at the airport, we noticed he had a slight limp and his dad said that he had stumbled while on vacation. We didn't think much of it. As the week progressed, so did Zachary's symptoms. Since we attributed the symptoms to the fall, our pediatrician was looking for a trauma injury. That week he went to the doctor's office three times, had x-rays of his arm and hip and had an appointment with an orthopedist.
On the following Friday, I was meeting Zach and his dad at the pediatrician's office and I spotted them ahead of me so I called out their names. Zachary turned to look, smiled and ran to give me a hug. My heart skipped a beat and then stopped cold. He looked like a little boy who had just suffered a stroke. His left side didn't work correctly. Something was very, very wrong and the orthopedist knew immediately, this was no trauma, it was neurological.
The pediatrician did some exercises with him and sent us straight to the hospital across the street for an MRI. By this time, Zach couldn't stay still enough to finish the scan. But they didn't have to. When we walked into the MRI unit, the technicians were all kidding each other, just having a regular Friday afternoon. By the time they finished the scan, it was as quiet as a church on Tuesday. I watched the technician's faces through the glass as they ran Zachary's scan. Their smiles froze and nobody spoke above a whisper. I just kept watching, thinking "This is all a mistake. They'll figure it out." Instead they sent us right back to the pediatrician's office where we were told that they had seen something on the MRI and that I should go home immediately, pack a bag and go straight to the airport where Teddybear Air would pick Zachary and I up to take us to Cook Children's' Hospital in Fort Worth.
When I met with the neuro-oncologist that night he said to me "I'm not sure he'll make it". That was honestly the first time it occured to me that there was a chance we may lose him. I was in shock. Still, I had hope that maybe it wasn't cancer. We took Zachary to the infectuous diseases specialist as well as many others. I was on an emotional roller coaster ride; one minute thinking "all of these people are just crazy"; the next hoping they would walk in and say "False alarm, just an infection, here are some antibiotics, go home, he'll be fine in a week". They never did.
A week after we arrived at Cook Childrens', we received confirmation from St. Judes'. Zachary had an upper brain stem glioma; in layman's terms, a brain tumor. The oncologists were very forthcoming and very blunt. There was no hope for our Zachary. It was inoperable, no treatment, and no cure available. Make him comfortable. Make him happy. Spend time with him now. His prognosis was nine months.
I refused to take their terminal prognosis without a fight. I read every article I could find on upper brain stem glioma. I scoured the internet and called doctors from coast to coast. I even read an article in the Reader's Digest about a world renowned pediatric neurosurgeon who specialized in brain tumors at Beth Israel in New York City. After leaving a message with his assistant, he called me back, personally, less than 30 minutes later. I was so hopeful. Unfortunately, after he read the MRI report that I faxed him, he could offer no more than the doctors at Cook Children's Hospital. I also spoke to a leader in gamma knife technology in Los Angeles at Cedar Sinai as well as a very kind doctor at MD Anderson in Houston who was conducting clinical trials. When I asked him about the study of UBSG, he said they just didn't have anything that was "hitting home runs". That was nine years ago and they still don't.
During those six months, Zachary first lost his ability to walk. Then he began to choke on his food. In order for him to eat we had to puree everything and feed him, and shortly after that he lost his ability to speak. I felt helpless watching my beautiful son become sicker by the day; and more frustrated and unhappy as he lost his abilities to function, knowing there was nothing I could do to stop it. The whole time, I knew he was counting on all of us to make him better, even as he got worse. He still believed that mommy or daddy would fix it. Except this time we couldn't. The high doses of steroids and medication only seemed to further his suffering, but he endured all of this with steadfast resolution. Then, one evening, he finally asked if he was going to die. Sadly, I was in the emergency room with food poisoning at that moment, but his favorite nurse Chris was guided by God Himself when she said to him "Zachary sweetie, we're all going to die someday, we just don't know when". He passed four days later, less than six months after the original prognosis.
On February 3, 2000, when Zachary was 7 years, 5 months and 22 days old, his little body just could not take anymore, and I had a conversation with him that no parent should ever have to have with their child. As I held him, I told him it was ok to go, that he didn't have to suffer anymore and we would be right behind him. He was only partially conscious, but I know he heard me. Then our Father decided He needed another angel and He took my beautiful boy Home. Zachary has been safe in His arms, waiting for us patiently ever since.
Don't anyone out there kid yourself. Watching your child die is a lot different than what they show on television. I'll just say it's graphic, and something that never, ever leaves you.
We buried Zachary on February 5th. All the while, I just couldn't get my mind around the fact that we were putting my baby in the cold hard ground.
A few days after the funeral, I had a dream. I was looking for Zachary. He had just wandered off, and I began to feel that panic that all mothers feel when they turn around in the grocery store and their child isn't "there". The dream woke me up, terrified. In an instant, I went from sheer panic that he was missing, to a brief, wonderful "it's ok, it's just a dream" to, "oh my God, he's never coming back." That evening, I was reading before bed and was holding the Winnie the Pooh that had been Zachary's favorite since he was two years old. He never went anywhere without it. Suddenly, the hunny pot attached to Pooh's hand started to play the Pooh theme song. It hadn't worked for at least five years. It was as if Zachary was there with me, telling me he was ok.
The local newspaper ran the following article following his passing:
web.reporternews.com/1998/2000/local/tumor0204.html
This disease has affected me and all of Zachary's family in a profound way, and I have seen many other families deal with it as well. These people became my dear friends. I watched them go through this, and because I had been there myself, it was even more heart wrenching. All I could do was be there to support them.
Inspired by Zachary's memory, I chose to do something to try to eliminate this disease in hope that not one more child or family has to suffer through this pain. My goal is to raise awareness and funding for those that are trying to find a cure for childhood brain tumors.
The Ride for Kids event is a yearly motorcycle ride raising money for the Pediatric Brain Tumor Foundation. The Pediatric Brain Tumor Foundation is a non-profit charitable 501(c)(3) foundation that seeks to: find the cause and cure of childhood brain tumors through the support of medical research, increase public awareness about the severity and prevalence of childhood brain tumors, aid in early detection and treatment of childhood brain tumors, and provide hope and emotional support for the thousands of children and families affected by this life threatening disease.
Your donation becomes a symbol of hope to the children and their families, as they face the challenge of daily life, hoping the next medical discovery will be the key to a healthy future.
Donating through this site is simple, fast and secure. It is also the most efficient way to contribute to our fundraising efforts. Many thanks for your support -- and do not forget to forward this to anyone who you think might want to contribute too!
We raised over $300,000 at the 2009 Ride for Kids and I have every intention of making it a lot more next year. For that reason, I'm ramping up for 2010 and hoping that everyone who reads Zachary's story will be moved to help. Remember... this can happen to anyone's child.