BREAKING NEWS: After thirty five years of research, scientists at Stanford School of Medicine made this incredible discovery in February 2011 for the specific type of tumor that claimed the life of my son Zachary when he was only 7 years old. THIS is our fundraising effort at work!:
http://med.stanford.edu/ism/2011/february/pontine.html
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.
Research for pediatric brain cancer is underserved and underfunded; but it can attack anyone's child. It knows no gender, race, or socio-economic status. Your donation can help eliminate this disease.
I hope that everyone who reads Zachary's story will be moved to help change the world and lives of these children. Please know how much I appreciate your support, and feel free to forward this to anyone who you think might want to donate too!
Zachary was born in 1992, a perfectly healthy 9 pound baby boy and we couldn't have been more excited. He grew into a happy, healthy little boy who loved playing sports, video games and being silly with his friends.
On one afternoon in the summer of 1999, we noticed he had a slight limp and his dad said that he had tripped and fallen the day before. We did not 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 we took him to the doctor's office several times but no one could find the cause of the limp, or the other symptoms he was beginning to show. By the end of the week Zachary looked like a little boy who had suffered a stroke. His left side did not work. Something was very wrong and soon we all knew, this was no trauma, it was neurological.
Our pediatrician sent us to the hospital for an MRI. When we walked into the MRI unit, the technicians were friendly and talkative, it was a Friday and they were ready for a weekend like anyone else. By the middle of the scan, you could have heard a pin drop. I watched their faces through the glass as they ran Zachary's scan. Their smiles disappeared, and were replaced with a "deer in the headlights" expression and they began whispering. I kept watching, and waiting for that moment of relief where they realize everything is ok, but that moment never came. Instead they sent us back to the pediatrician's office where we were told that they had seen "something" on the MRI and that I should go home, pack a bag and go straight to the airport where Teddybear Air would take Zachary and I to Cook Childrens' Hospital in Fort Worth.
That night, I met with the neuro-oncologist who said to me "I'm not sure he'll make it". I was stunned. It had never EVER occured to me that he might die because children just aren't supposed to die. They get colds, and ear infections and then they get better. Less than a week before, he had been fine, now suddenly, he was fighting for his life.
A week later, we received confirmation from St. Judes'. Zachary had an upper brain stem glioma; in layman's terms, a tumor in his brain stem, also known as diffuse instrinsic pontine glioma. The oncologists were very straightforward. Because of the tumor's location and type, there was no hope for Zachary. It was inoperable, there was no cure or treatment available. They told us we should make him comfortable. Make him happy. Spend time with him now. His prognosis was nine months at best. Zachary had just turned 7 years old that week and the next day we had what we knew would probably be his last birthday party.
We refused to take their terminal prognosis without a fight. I read every article I could find on upper brain stem glioma, but kept seeing the same thing, that it was terminal, and most kids don't last a year. We took Zachary to a holistic health center in San Antonio. I scoured the internet and called doctors from coast to coast. I read an article in Reader's Digest about Fred Epstein, a world-renowned pediatric neurosurgeon who specialized in brain tumors at Beth Israel in New York City. After tracking him down and leaving a message with his assistant, he called me back, personally, less than 30 minutes later. 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 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 did not "have anything that was hitting home runs".
We began radiation treatment, his oncologists hoped it would shrink the tumor and buy us some time. Unfortunately, it seemed to only make matters worse. Within a few weeks, Zachary lost his ability to walk and soon after, his ability to speak. Communication was nearly impossible. Then he began to have difficulty eating. We had to puree everything and spoon feed him so he wouldn't choke. I watched my healthy, active son become sicker by the day; and more frustrated and depressed as he lost his abilities to function, and yet there was nothing I could do to stop it. The worst part was knowing that his ability to comprehend was fine, he understood everything that was going on around him, but his body wouldn't do what he wanted it to do because of the tumor infiltrating into the area of his brain that controls movement and speech. But through it all, I know he believed we were going to make him better, he never lost faith in us.
The high doses of steroids, radiation and medication only seemed to further Zachary's suffering, but he endured all of this with steadfast resolution. Finally, one evening he asked if he was going to die. We simply said to him "Zachary sweetie, we're all going to die someday, we just don't know when".
Four days after he asked that question, on February 3, 2000, when Zachary was 7 years, 5 months and 22 days old, his little body just could not take anymore. 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 I promised we would be right behind him. He was barely conscious, but I know he heard me. Then our Father decided it was time and He took my beautiful boy Home. Zachary has been safe in His arms, waiting for us patiently ever since.
The local newspaper ran the following article following his passing:
web.reporternews.com/1998/2000/local/tumor0204.html
Zachary would be 18 now and there's not a day that goes by that I don't wish I could have him back, and wonder what he would be like today, if only he had been given the opportunity.
This disease has affected me and all of Zachary's family in a profound way, and I have watched as many other families dealt with it as well. These people became my friends and because I have been there myself, it was even more heart wrenching. All I could do was be there to support them and pray for a cure.
The Ride for Kids event is an annual 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.
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 $290,000 at the 2010 Ride for Kids, let's top that in 2011!