When I first started this blog, one of the goals was to raise awareness of childhood cancers and disabilities, in children and adults. It is my honor and esteemed pleasure to present Sue Axelrod, who reminds us that childhood cancers do exist and to cherish every minute you have with your son, daughter, nephew, niece, grandson or granddaughter because tomorrow is not promised.
The Superhero Behind Isaiah Alonso Foundation
Isaiah was a typical, silly and fun-loving six-year-old boy who loved to wear costumes of his favorite superheroes everywhere he went. On Friday, September 3, 2010, my sister, Cheryl, took him to the doctor for a cough, and he was diagnosed with allergies. Hours later, he stopped breathing, collapsed in front of his parents and was rushed to the hospital. When Cheryl called me very late that night, I immediately knew something was very wrong. Isaiah had been without oxygen and, although he received CPR almost immediately, he didn’t regain consciousness and they weren’t sure if he would make it.
They live in Kentucky, so I left for the six-hour drive to go see Isaiah in the hospital first thing the next morning. I literally threw a few things in a small bag and dropped everything. My family was left at home to wait. That drive was one of the most difficult rides of my life. About an hour into my trip, I got the devastating news. Isaiah was diagnosed with cancer. They didn’t know what kind of cancer he had at that point, but they did know that he had a huge tumor pressing on his airway. I also learned that they were afraid Isaiah may have suffered brain damage from lack of oxygen. Needless to say, I cried the whole way there. Cancer? Brain damage? How does this happen to a seemingly healthy first grader?
Shortly after I arrived at the hospital, we learned Isaiah had T-cell Lymphoma, which is a type of non-Hodgkin’s Lymphoma, a cancer in the lymphatic system, which is part of the immune system and functions to fight disease and infections. Most cases of lymphoblastic lymphoma involve the T-cells in the thymus, and usually become evident with a mass in the chest and swollen lymph nodes. Isaiah’s tumor grew very large and very fast. I’m still wondering how “allergies” become lymphoma in a matter of hours.
My sister and her husband, Vinnie, stayed in the hospital with Isaiah all day and night, and I spent my nights at the Ronald McDonald House Kentuckiana while we all hoped for a miracle. No miracle came. There were no prior symptoms other than the cough, but Isaiah suffered severe brain damage as a result of complications from the T-Cell lymphoma, which wasn’t diagnosed until the Friday he collapsed. He never regained consciousness and took his last breath a week later on September 10 in his mother’s arms.
The next few days were a blur as we made preparations for Isaiah’s services. I will never forget preparing his favorite Batman costume for burial. My husband and children came to Kentucky to join me, and we actually went to Isaiah’s wake dressed in superhero costumes. I wouldn’t wear a short Super Girl costume for just anyone, so that shows just how special Isaiah was to me. During the funeral procession, we drove by Isaiah’s school and were amazed to see all the kids and staff standing outside, and they all released balloons as the hearse drove by. We were all incredibly touched by that heartfelt gesture.
Shortly after Isaiah’s untimely death, the charity that bears his name, the Isaiah Alonso Foundation, was born. Isaiah’s parents realized that many families don’t have the level of support they had or the financial means to care for kids who sometimes battle cancer for years. These parents need to be able to focus on their children, especially during treatment. Everyday finances become increasingly more difficult to manage and expenses such as groceries, the cost of gas to get to and from the many doctors’ appointments, lodging when a child is admitted to a hospital or even utility bills can cause undue stress and hardship.
Our mission at the Isaiah Alonso Foundation is to raise awareness for childhood cancer and raise money to lighten the financial strain on families dealing with this type of crisis, as well as helping to fund a cure. We are a registered 501(c)(3) public charity headed by Cheryl and Vinnie Alonso. I run our social networking sites, help out in many areas of day-to-day operations and head our Georgia chapter. We are all very passionate about raising awareness for pediatric cancer.
I’m ashamed to admit that before Isaiah’s diagnosis, I was blissfully unaware of the realities of pediatric cancer before it was too late. Yes, I donated to other cancer charities before, but I never paid attention or took the time to really get involved. I didn’t want to think that kids got cancer, but they do. Did you know? There are roughly 13,000 new cases of childhood cancer diagnosed every year in the U.S. alone. Childhood cancer isn’t just one type. There are actually twelve different types of cancer with unique mutations within each type. Cancer is the leading cause of disease-related deaths in children under the age of 20; more than asthma, diabetes, cystic fibrosis and AIDS combined. Every day, 46 children are diagnosed with cancer, and seven will die from it.
Presently, pediatric cancer remains grossly underfunded. If children are our future, then why are they being left behind? For Isaiah and others, a pediatric cancer diagnosis is a death sentence. Cancer often strikes with little or no warning and is often misdiagnosed. Those who beat cancer can’t ever really leave it behind. The effects that chemotherapy and other treatments have on a child’s body can last a lifetime and sometimes cause other cancers. Sometimes the treatments themselves are deadly. We need more funding to change all of that.
I truly hope no one else has to feel the pain a childhood cancer diagnosis brings. I grieve not only for my loss, but also for my children’s loss. I especially grieve for my sister, Cheryl, and her husband, Vinnie, whose tremendous loss is truly unthinkable. They’ve shown such strength, courage and grace though it all, and they have inspired me in so many ways. Isaiah himself has inspired us all to help kids with cancer and their families. I would tell families facing a new childhood cancer diagnosis to educate themselves about the disease and make sure they are the best possible advocate for their child. It’s also important to use the many resources available and to ask for help because there will be times when they need it.
I wouldn’t say that this experience has made me a better person, but I do appreciate life and my loved ones so much more. I remember to tell people I love them since tomorrow isn’t guaranteed for any of us. Helping families battling cancer in Isaiah’s name has been very rewarding as well. We are very fortunate to have so much support from family, friends, Isaiah’s community and his school.
No parent should ever be told, “Your child has cancer,” but it happens 46 times every day. Right now there is an urgent need to help parents who often have to quit their jobs to care for their child; meanwhile, their medical bills continue to mount. Until there is a cure, we are determined to make a difference “Helping One Family at a Time.” Will you help?
By Sue Axelrod
For more information about the Isaiah Alonso Foundation, to make a donation or learn about volunteer opportunities, visit http://www.isaiahalonsofoundation.org.
About Sue Axelrod
Sue Axelrod is a stay-at-home mom with three teenagers who keep her busy. She moved to Georgia from New England about four years ago and lives in Atlanta. Moving to the South was a huge change for her, but the biggest change in Sue’s life came in September 2010 with the passing of her six-year-old nephew, Isaiah, from complications from cancer. Sue is now very active trying to raise awareness for childhood cancer and make a difference in the lives of the families still battling this horrible disease.