Are You Going Gold in September

…in support of Childhood Cancer Awareness?  In this household, we certainly are!  And here’s why, in the words of my friend, Leigh, a long-time friend and fellow Army wife and mom of the most courageous boy I know. My kids will be sporting these zipper pulls we made on their backpacks…check back tomorrow for a tutorial on making them. For today, I’d really appreciate it if you would read Leigh’s account of Tommy’s journey and consider “Going Gold in September.”

Here’s her heartfelt and information-filled account (Leigh is also one of the most intelligent women I know, and if she writes it, she’s researched it…you can believe her!):

Everyone knows the meaning of a pink ribbon. We see the remarkable campaign for breast cancer awareness starting in the early fall, and by October 1^st, local and professional sports teams proudly outfit their players in pink in support of Breast Cancer Awareness Month. Are you aware of the meaning behind a gold ribbon? Neither was I until last year.

I would like to share my son’s remarkable journey over the past 15 months. Tommy is a now 9-year-old boy who is the ultimate sports hound. He has played soccer for many years, so anxious to play at the tender age of 2, that his sister’s coach allowed him to practice with the 4-year-old team, even bringing him in on the last game of the season. A “boy of summer”, Tommy plays baseball locally while he follows the Boston Red Sox, Seattle Mariners and Cleveland Indians with great passion. He tracks collegiate and professional football like no other, with his gridiron heroes residing at Texas Christian University, Ohio State University, and Army; his NFL allegiances are broad, cheering for the Seattle Seahawks, Dallas Cowboys, Cleveland Browns, and New England Patriots. Tommy is an “Army brat” and has lived in three states, has two parents in the military who are from different states and who attended different colleges. Cheering for multiple teams is inevitable.

Tommy started a battle that was bigger and more important than any World Series or Super Bowl on 5 March 2012 when doctors found a large mass in Tommy’s brain. He was transferred to Seattle Children’s Hospital where surgeons successfully removed it, led by a brilliant neurosurgeon, Dr. Richard Ellenbogen. We could not have asked for a more skilled physician leading the team, and despite the devastating diagnosis, Tommy was impressed that the co-Chair of the NFL’s Head, Neck, and Spine Committee would perform his surgery. After we received the pathology report with a final diagnosis of cancer, he was referred to Massachusetts General Hospital for proton beam radiation treatment. Tommy’s strength and resilience were remarkable through the entire ordeal, arguably stronger than his entire family. He and his two sisters are adept at dealing with hardship brought on by war and multiple deployments, perhaps contributing to his courage and inner-strength. Noteworthy, during Tommy’s radiation treatments, he would envision the tumor being crushed, much like he crushes the soccer ball in the goal, and “CRUSH IT!” became his mantra. The radiation treatments were complete in June 2012, and we returned to Tacoma, WA to attempt to resume a normal post-cancer life.

Over the course of his treatments, Tommy lost hair on the side of his head—in the shape of a heart, which I found apropos—but this was his Achilles heel. Not the brain surgery, not being strapped down for 32 radiation treatments in a plastic mask conformed to his face, but the hair loss. He endured children pulling off his hat and at one time was called the “grumpy bald kid” after someone ripped the hat right off his head. It was devastating to him and it broke my heart to hear for the first time his profound sadness as he asked God why this happened to him. Even after the surgery and radiation therapy had passed, we were dealing with the second and third order effects of his treatments. His hair has since grown back, though his scar is still quite visible, as he insists on keeping his hair as short as his dad’s Army cut. I am happy to report that Tommy is doing extraordinarily well, and has remained cancer free for the past 15 months. He continues to get quarterly MRIs, a day that brings intense anxiety for us because while life has gone on as normal, we as parents never forget. We cannot show our fear, but the unimaginable nightmare of recurrence will remain for years. While this was one of the most difficult periods of our lives, we were able to get through this with the support of so many people in the local area, across the country and overseas. People made contact with us to get Tommy to sports people and places that have brought him tremendous joy: TCU and Army football; the Red Sox, Patriots, and Seahawks. His love for sports is driving my desire to bring greater awareness through sports organizations.

The gold ribbon I mentioned at the outset represents Childhood Cancer Awareness, recognized in the month of September. Even as a healthcare provider, I was completely unaware of this until Tommy’s diagnosis. I am happy there is a month designated for childhood cancer, but I cannot help but wonder why there are not exhaustive efforts towards this cause. I never see campaigns to “Go Gold” for the month of September to raise awareness or raise money for research. There are small non-profit organizations, but not of the magnitude we see with breast cancer awareness. As September approached this year, I got a wild hair and embarked upon my own personal CRUSH IT! Campaign for Childhood Cancer Awareness. Long term, it is my goal to see sports teams and sports men and women wear as much gold in the month of September as they wear of pink in October for Breast Cancer Awareness. For now, I am starting with my friends and my kids’ coaches, asking them to wear gold laces for the month of September while I navigate the bureaucratic hoops of bringing awareness at the collegiate and professional level. I am hoping that gold laces will appear on kid’s soccer cleats, running shoes, ballet slippers, lacrosse cleats, hockey boots, or anywhere on a uniform for the month of September to stand in solidarity the peers they do not yet know who have cancer, as well as every other child across the country whose family has been shattered with this diagnosis. I also had hundreds of gold “Team Tommy” bands with his mantra, “CRUSH IT!” made, and through a social media and direct requests, these gold wristbands will be worn for the month of September in all 50 states!

Of course this awareness campaign is of particular interest to me as a mom, but also as a researcher. When the pathology report returned with a diagnosis of “ependymoma”, I immediately went to the computer to seek information on clinical trials and evidence for best treatments, but was frustrated with not only the minimal research on ependymomas, but also the conflicting information on the optimal treatment. I also found that the disparity in Federal funding between childhood cancer and breast cancer research is staggering. I write all of this knowing that this is not a story just about Tommy McGraw. It’s about every family we have met in our journey whose child is being treated and about all the children who will be diagnosed in the future. I never imagined that my children would ever need to see the inside of a hospital unless it was coming to see me at work or related to a sports injury or perhaps a mishap from an intense desire for thrills and adventure. What I soon learned is that cancer does not discriminate among education, socioeconomic status, or healthy lifestyle. Tony Snow wrote about his own diagnosis of cancer that eventually took his life in 2008: “We don’t know how the narrative of our lives will end, but we get to choose how to use the interval between now and the moment we meet our Creator face-to-face.” I do not know the end of the Tommy McGraw story. Whether 9 years or 90 years, his legacy will always be “CRUSH IT!” It is my hope that there will be increased awareness of childhood cancer among the sports organizations and teams that he so admires and across the states with the gold laces and gold CRUSH IT! wristbands.

Childhood cancer by the numbers:

*10,400 children <15 years old are diagnosed with cancer each year….

or 28 children every day

*4 children will die from cancer every day….

or 1545 children each year.

*328,000 survivors of childhood cancer live in the U.S. today

BUT they suffer from secondary side effects of their treatment: cardiovascular, musculoskeletal, endocrine, psychological, neuropsychological, secondary cancers or tumors, infertility

*Federal funding for research:

$197 million: All childhood cancers

$296 million: Lung cancer

$625 million: Breast cancer

(Source: Children’s Hospital of Philadelphia)