Why I Must Be An Advocate for Change and Education
I had the pleasure of representing Cannonball Kids’ cancer (CKc) on Saturday, September 15th, at the first-ever Golden Warrior Festival in Apopka, Florida. This wonderful event was created to raise awareness of childhood cancer, and to beautifully recognize the brave warriors currently battling various childhood cancers in their community.
Day after day, these brave children face things that no child should ever have to know. They routinely undergo treatment that is unfortunately not able to be tailored to their specific illness, and they face the harsh side effects of medications designed to eradicate cancer in an adult many times their size. As I watched these extraordinary children experience each activity that was planned for them, they were so grateful, and so full of joy despite all they continue to face. It was truly such a blessing to witness them be able to simply be children, to see them smile for photos with their favorite superhero or Disney princess, to have their face painted, to enjoy cotton candy or a snow cone, and truly enjoy time spent with their families – I am absolutely in awe of these amazing children and the love and support of their families.
The coming together of this community to provide education on childhood cancer, and to rally around these amazing warriors was truly something to witness. In one afternoon, hundreds of eyes were instantly opened to the harsh realities of childhood cancer, and the dire need for change. All in attendance were able to see firsthand that that most unfortunately, childhood cancer is not rare. It does not pick and choose, it does not discriminate, and it continues to deliver devastating diagnoses on a daily basis. It takes events like this, foundations like CKc, and people who are driven to change the status quo, to make a difference. Being able to share CKc’s mission and accomplishments with members of this community, specifically the goal to create options together, when no more options are available, was incredible.
This event had such personal meaning to me, as our family was not given the option to fight cancer. After our son Maxwell passed, we learned that he silently battled neuroblastoma in the three months we were blessed to share with him. There is no doubt in my mind that if we were blessed to have Maxwell with us much longer than we were, we would have fought as hard as we possibly could for him to beat this horrible disease.
While we truly feel in our heart that there is no blame, often hindsight is 20/20, and we can now look back and see that Maxwell exhibited some symptoms that would indicate the presence of neuroblastoma. It is understandable that physicians often times avoid immediately linking these symptoms to a possible cancer, because it would cause panic to the family and oftentimes there is no cause for concern. In our case, Maxwell had a protruding stomach – it was almost barrel-like. It was never identified as a potential issue; instead we were praised for our evident success in his feeding. Babies do not have developed abdominal muscles, so a large amount of babies do have large bellies. Maxwell also would sweat profusely. When we pointed this out, our concern was dissuaded, we were thankful when the concern was simplified to explain that sometimes babies just sweat, and it does not mean that there is an underlying issue. Only in hindsight can we identify the need for education on the telltale symptoms of neuroblastoma – and, just like any other disease, it is always better to be safe in ruling out this disease than not, as we will forever wonder what may have been if we were able to identify it, and fight, in an effort to save Maxwell’s life. Instead what started as a high fever weeks later led to an emergency room visit and discharge with a diagnosis of a ‘virus’ only to lose our son less than 48 hours later. Our family is forever changed and living daily with the devastating reality that our son is with God, instead of in our arms.
The never-ceasing love of a Mother for their child makes all things possible, and was what gave me the strength to represent CKc for this event. My heart went out to each warrior family that I had the privilege to meet, and as they shared their child’s stories with me, I was able to share Maxwell’s story with them, and explain how much CKc has come to mean to me. Our lives have been forever changed because of pediatric cancer, and now the fight is mine to continue for my son. Maxwell is my “why” – what drives me to volunteer for this extraordinary organization. I must be his voice; I must be an advocate for change and education. I know that I have found the perfect place in CKc to do these things and so, so much more. The Golden Warrior Festival was a huge success, and CKc was recognized for its help making such a wonderful event a reality. The positive feedback we received, the sincere interest in what we do, the individuals and families asking what they can do to join the fight, and the pride that I felt representing CKc for this event, was immeasurable. It truly was an experience that I will never forget. I did it – and you absolutely can, too!