Xander's Orange Crush
Team Xander's Orange Crush is back in action, with an exciting and very apropos twist, for the eighth annual 2017 Hope and Heroes Walk!
In late July, Xander will reach two milestones. First, SEVEN YEARS CANCER-FREE, and a few days later, his TENTH BIRTHDAY! When Xander was in treatment seven years ago, we weren't sure if he would survive this insidious illness to see his third birthday, and now here he is, on the cusp of ten years old.
The heartbreaking reality is that not all children are as lucky as Xander. Each day 43 children are diagnosed with cancer… that's more than a classroom of kids per day. Over 40,000 children are currently in treatment; approximately 25% of all kids who are diagnosed with cancer do not survive.
Although Xander is still subjected to medical tests, needle pricks and doctors’ prods, we are overjoyed to say that he is just “a normal kid" in every other regard. He doesn’t have much recollection of being under treatment, and it doesn’t factor into his very active daily life of family, friends, school and sports. He doesn’t regard himself as a victim, or expect any special treatment because of what he’s been through. He just wants to be a normal boy, albeit one who is drafted for a life of professional sports out of third grade at a height of four-foot-one. This is all we prayed for seven years ago, when Xander needed a feeding tube and was too sick to lift his head off his pillow.
At almost ten, Xander remains vivacious, friendly and precocious. Along with Asher, Gage and step-brother James, he switched schools to Fair Haven’s public school, Sickles School, this year and is hitting it out of the park academically and socially, pun intended. Sports remain Xander's first love, particularly baseball, basketball, soccer and football. This year alone, he has played on three travel teams, as well as in various town recreational leagues. When he is not playing sports, he is watching sports, talking about sports, reading about sports, or playing sports video games with his five partners in crime (a.k.a, brothers and step-brothers). At present, he’s extremely invested in the Yankees and the Cleveland Cavaliers. He’s hoping that the Cavs can pull off another NBA championship this year, and argues passionately with anyone who will listen that Kyrie Irving is “better” than LeBron James. In school, Xander is having an incredible year. He has a nearly perfect report card, is well liked by his teachers, and has finally decided that reading isn’t so bad. His favorite color is still orange, and he would eat pizza for every meal if we let him. Some things never change!
Unlike most other “normal” children his age, though, Xander is subjected to the unpleasant after-effects of pediatric cancer. Issues like irreversible, bilateral hearing loss and crumbling tooth enamel, both side effects from the chemotherapy, are part of his daily life. He wears hearing aids to school, which he despises because it makes him feel different, and has frequent dentist trips for tooth repair and extraction, which are unpleasant and painful despite the Tooth Fairy pay-out. This year, he has reluctantly accepted the fact that having his gallbladder removed means he can’t digest some of his favorite foods and treats, like milkshakes. Still, Xander remains a happy, quirky, optimistic kid who weathers these challenges like a champ. We remain so proud of him and are constantly inspired by his positive attitude and ability to take it all in stride.
When Xander finished treatment, our family made a commitment to support Hope & Heroes, the charitable foundation that supports the Division of Pediatric Hematology, Oncology & Stem Cell Transplantation at Columbia University Medical Center, where Xander is a patient. It is one of the largest and most distinguished pediatric oncology programs in the United States, and does not turn anyone in need away. All patients, regardless of financial or insurance status, receive the same exemplary treatment as Xander. In the current climate of government, hospital and insurance funding, programs such as these cannot be sustained without ongoing philanthropy.
For six years, our support of Hope & Heroes has been large-scale participation in the annual walk… but this year, we have an exciting twist!
On the date of this year’s walk, May 21st, you will not find Team Xander’s Orange Crush in its prominent spot on Pier 84. Instead, we on team XOC will be closer to home, watching Xander step up to the pitcher’s mound. Along with the rest of the Fair Haven White Diamonds travel team, Xander will play a baseball double header, as any healthy, almost-ten-year-old would be able to do on a Sunday morning. It is a departure from our original plans, but we feel it is extremely timely and apropos, considering our son and his love of the game.
For many children in treatment for cancer, being well enough to once again play sports is a dream. For Xander, and for us as his family, we feel so blessed that a normal Sunday at the baseball diamond has become our reality.
Despite the fact that we will be playing baseball in New Jersey and not physically walking in New York City, we are still asking for your help! We have decided to honor this day in support of pediatric cancer patients and their families… kids like Xander, who were thrust into battles they never asked for and don’t deserve. Xander’s baseball team, the Fair Haven 9U White Diamonds, has kindly agreed to turn the H&H NYC walk into a baseball team fundraising effort, including both financial fundraising and grass-roots participation by Xander and his fellow players. Instead of Team XOC’s typical orange, the kids will don gold wristbands, the color of childhood cancer awareness, in honor of kids currently battling this devastating illness.
Childhood cancers are the #1 disease killer of children - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined. Still, all types of childhood cancer combined receive only 4% of total U.S. federal funding for cancer research.
As parents, we do everything in our power to protect our children, yet we are powerless over so many things. The simple truth is that children, of all people, should not be afflicted with life-threatening illnesses. They should be able to live life with reckless abandon, unaware that things beyond their control can strike at any moment and take it all away. They should not have to contemplate their own mortality or undergo treatments with devastating side effects. Instead of sitting inside a hospital room, THEY SHOULD BE ABLE TO PLAY BASEBALL.
With your help, Hope & Heroes can continue supporting the exemplary care and cutting edge research conducted at the Division of Pediatric Hematology, Oncology & Stem Cell Transplantation. Please consider supporting Hope & Heroes by sponsoring Xander's Orange Crush and the Fair Haven White Diamonds. Every dollar helps! We are immeasurably grateful for the ongoing support from our friends and family. From the bottom of our hearts, we thank you. We hope to have only good news to report as Xander continues his very active, healthy, “normal” life.
And if you live locally, please join us at the field, for very few "walks" and hopefully team victories! Go Diamonds!