Childhood cancer is the leading cause of death by disease for our kids. Yet the National Cancer Institute directs only 4% of its funding to childhood cancer. Chances are about 1 in 300 kids will be diagnosed with cancer before age 20. 1 in 5 will die within 5 years and another 1 in 5 will die in the next 10 years. The American Cancer Society directs less than 1% of its budget to kid cancer research. These kids need your help. Here's a story I wrote about my son, who was killed by childhood cancer....
You know for the last two years, my right shoulder has really ached. I called it my torn rotor cuff. It came from throwing untold thousands of footballs to my 14 year old son, Alex John, or as we called him, AJ. Trying to lead him just right on deep post patterns, trying hard to keep up with his speed. And, after the last one every time, you see, he would only let it end after he made a great catch, from catching the big lug and hugging him as he came running and jumped into my arms, yelling "the Bills win the Super Bowl, the Bills win the Super Bowl!". Just us dreaming. It came from me trying to pitch to him as fast as I could so he wouldn't hit me, but he always did. It honestly hurt enough so that I only slept on my left side and if I rolled over on it, it would wake me up in the night. But I didn't care, how could I stop doing those things? I loved it. My new problem is that over the past month or so, my shoulder has slowly but surely stopped aching. Now what keeps me awake at night is my broken heart. You see, I have no one to throw those passes to, no one to brush back anymore. Because AJ left us on January 5, 2008, a victim of childhood cancer.
AJ truly was a remarkable young man. He was born during a blizzard in March 1993, and to this day I remember him not crying and breathing right after being born, and the doctor and nurses rushing around in the delivery room. But after he took that first breath, boy, did he breathe deep the rest of his life. He lived life. He was always smiling. He loved sports, people, music, playing the guitar, animals, movies, good books. He thought. He had fun; always made people laugh, did the right things, did everything at 110%, and was simply just a joy to be around. He was the love of our lives. During the last couple months, as we would be alone in the hospital room together at night and talk, and at finally at home, I came to know that, believe it or not, this 14 year old was truly the most evolved person I have ever known.
His sister Katelyn said, "AJ, you would say something to make me laugh or cry or think and I would just stare at you thinking how did you even think of that?" Mom’s list of about a billion things is simply too long to pick just one out to say about her little pistol. His best buddy Pablo said, "AJ's character was like the sun: brilliant, golden, and able to light up the whole world". Jimmy V would be proud of the way AJ lived.
On Father's Day 2007, AJ was diagnosed with non-Hodgkins Burkitt's lymphoma and admitted to TX Children's Hospital. It’s one of the most aggressive cancers there is. He fought bravely, elegantly and continually for eight long hard months. Finally, I guess God decided that AJ was the only person on Earth who could do what needed to be done for Him. We miss him more than words can ever describe and will forever hold him in our hearts. He will always be Mom's "white rose", Katelyn's "guitar hero " and Dad's "favorite son".
In his time here on earth he affected many people. After he left, I wrote AJ's favorite teacher and told her that she was just that, AJ's favorite teacher. How he remembered giving his science presentation on global warming and her questioning him, wondering if there wasn't something else at work here besides CO2 levels, and how he couldn't believe someone would question the science like that. And I told her that as he told me that story near the end of his life here on earth, he came to think that she was right, there is something else at work here. She said that although AJ never got A's in class, somehow she could see in his eyes that he always got the deeper meaning of the lessons. She was touched, she changed her mind, she tore up her resignation letter, didn’t quit teaching, she was going to stay on; she now knew she was reaching the good ones.
I wrote the woman who took thousands of photographs of the kids for the school yearbook, and told her how much it meant to us to see those pictures of AJ that we hadn't ever seen. She was ready to un-volunteer, but came to realize how valuable her work was and told me she would go on taking pictures of kids. He somehow affected teachers and student alike. Apparently so much that the school created a memorial for AJ, the only one in its 30 year history. They retired and framed his football jersey with a big picture of him. And Coach Pinkerton told me that when he went to get AJ’s jersey from the pile of 200 jerseys, there it was, right on top. Just like AJ to say thanks Coach, I appreciate it, but don't go to too much trouble.
He moved the Make-a-Wish people. After several attempts to get to CO to go skiing, we just couldn't do it, he was too sick. So one day, he knew the situation; he says to me out of the blue, "Dad, do you think Mom and Sis like earrings or bracelets". He changed his make a wish to diamond earrings for Mom and Sis. They didn't even know about it. The earrings arrived the day after he left. Just like AJ, they sparkle every day. Not too bad for a 14 year old eh?
He impacted visitors to the hospital. AJ and Stuart Holden and Craig Waibel from the Houston Dynamo struck up a friendship. Those two visit all the kids on the floor every chance they get. AJ would just light up and talk trash with them about sports and just forget and imagine at once. Forget where he was and imagine himself back out there on the playing field. He touched both of these big tough soccer players. Stuart, a member of the 2007 Champion Houston Dynamo soccer team, came to visit AJ one of our last days at TCH. He brought the big silver MLS Championship Cup. And his championship gold medal. He and AJ held the cup high and kissed it. He told me he always knew he would hold a professional championship cup, and Stuart made that dream come true. Before he left, Stuart took his gold medal and placed it around AJs neck and said, AJ, I want you to have this. AJ made me so proud, again, and said, I can't accept this Stuart. Stuart insisted. Simply a beautiful gesture that brought AJ so much joy. Such a selfless act. Through Dr. Thompson and Nick's team, we were lucky enough to have a chance to repay Stuart in a small way by presenting him with a Gold Medal AJ won when he played in the State Championship soccer games at the age of 8. Stuart wrote me last week and said AJs medal means more to him than the MLS medal.
We made lifelong friends at TCH. Jalane, Mittal, Pat, too many 9th floor nurses to mention, Patty Baxter, Dr. Dryer, KP. The list goes on. These people come here every day. Do the best they can. They give. They try. They battle for these kids. It's truly a war, and they fight it every single day. I don't know how they do it. I respect them all so much. And I think they too were touched by AJ. Sometimes, like most things we do, we would be late for our clinic appointments. It just got too hard on AJ to get going in the morning. Well, don't tell Dr. Poplack, but whenever we walked in, word magically got to Jalane, and within a minute, there she was grabbing AJ and heading back for immediate love and caring, and oh yeah, all the medical stuff too. One of the few times I saw AJ cry was saying goodbye to these people when we left TCH the last time.
We will never ever forget any of these names I mention here today, we love you guys.
Now, just so you know, these kinds of stories are the norm with these kids. It's not just a Dad talking about how special his kid is, they all are. Each one of them is an inspiration to those around them. They all cause us to re-think our priorities; the things they say and do cause lifelong changes in people. I am a prime example. It's a central theme of these kids, and I intend to make it much more public than it is. I recently read an article in a medical journal where the researchers completed a study and determined that children had different mechanisms for dealing with cancer, essentially saying they kept a better attitude when compared to adults. All I could think was I hope these guys didn't spend a lot of time or money researching this, simply spending a day or two on the 9th floor at TCH would have been enough. These kids are courageous, kind, innocent, loving and, most importantly, they are counting on us.
I have no idea if you have even been on the 9th floor at TCH. If you have ever walked the halls and seen the smiles or tears on the faces of these little fighters as they play on the little trikes and big wheels. How the moms and dads race behind them with the ever present IV pole. How they have little child-sized masks on because they are at high risk of infection. How the teens hang together and still try to be cool, even though they’re bald and ready to throw up at any time. How the teens have added words like methotrexate and acronyms like ANC to their vocabulary, instead of LOL and "sweet". How the poor little baby's cry because they can't even relate what hurts. Or if you've ever seen a mom or dad alone in the break room at 3 am, with their head in their hands, feeling alone, helpless, scared and mad. I don't know if you've ever visited a Care Page or a Caring Bridge site, blogs where we tell our kid's stories. I've seen it all and more. In December 2007 I had AJ, my 14 year old son ask me, "Dad, what's hospice". I have seen enough.
So, that's why I am here today. I want every other Dad's shoulders to ache their whole lives. I want every other Mom's to worry about what mischief their kids are up to, not about tomorrow's chemo regime. I want this to totally stop. I am so indebted to Dr. Pat Thompson, and so many others here, but Pat in particular. He keeps me involved in this battle, and I am like putty in his hands. If I have to stand up and cry in front of the entire world 24 hours a day the rest of my life to stop this disease, sign me up.
Unfortunately, that's about all I can really do. I have no extraordinary talents in medical research. I don't have an extra hundred lying around it seems, much less the research funding that this cause needs. So, I do what I can. I try to help this fantastic group of people here at TX Children's Cancer Center. Because I know that Dr. Poplack and his brilliant team here at TX Children's Cancer Center can do this. They just need more help.
Today my role was to give you a glimpse into the life of my dear son, my best friend forever, AJ; to briefly tell you how this lying, cheating disease impacts and kills too many of these oh so special kids. To make you think about how much more these kids can give and accomplish if given the chance. To tell you about the spirit, dedication and desire of Dr. Poplack, his team, and all these people here at TCH. To tell you how these kids and families cannot do this alone.
So, we each have a role. I just did mine. AJ's favorite line from our favorite song was "you get what you give". You and your resources are desperately needed to help stop this madness. To help these guys win this war through research specifically designed to save our children. I sorta feel bad pointing this out but, who knows, with 1 in 300 kids diagnosed with cancer, it could be your kid, niece, nephew or grandkid you help save. So now, on behalf of all these kids, I ask that you fulfill your role.
Thank you, I’m AJs Dad.
- May 2008 speech at TX Children's Hospital fundraising event
Learn more about childhood cancer at www.PeopleAgainstChildhoodCancer.org