September is a glorious month in Ocean City and most locals live for this month as crowds thin out and humidity dies down, the air is crisp and clear and the water is warm.
Going on my 12th year as a true Ocean City local, September has taken on a whole new meaning. On the last day of September, five years ago, my only son, Alex, was born and September is the month to Go Gold for National Childhood Cancer Awareness Month.
In the last five months, the reality of childhood cancer hit home when Alex faced sudden diagnosis and removal of a brain tumor. When I say sudden, I mean he woke up on May 21 as a normal 4-year-old headed to another day of pre-k at Most Blessed Sacrament, to spending the very next day in the operating room at Johns Hopkins Hospital undergoing a craniotomy and full tumor resection after an emergency MRI revealed a mass in the middle of his brain.
Alex’s tumor is benign in that it doesn’t run the risk of spreading to other parts of the brain, but the tumor, called Craniopharyngioma, can recur in its place resulting in subsequent surgeries or radiation. The tumor is very rare and only diagnosed an average of 120 times a year in the U.S. among children under the age of 18. It completely wiped out all of his pituitary gland and some of his hypothalamic function. He produces no hormones on his own. Luckily, so far, we see no evidence of tumor regrowth, but he has three subsequent critical conditions with the potential of more issues down the road.
Not firsthand only with Alex, but in the three weeks we spent in Johns Hopkins Pediatric Intensive Care Unit (PICU), one week on the Pediatric Oncology floor and a month at Kennedy Krieger Institute (KKI), I saw firsthand the very real impact of childhood cancer. In PICU, I met a 13 year old who had been there six months in her battle against bone cancer. I spoke with a mother grappling with the fact that her 18 year old was diagnosed with leukemia that very day. Our roommate at KKI, just 7 years old, will miss second grade to undergo 15 months of chemo and radiation to beat malignant brain cancer.
Childhood cancer is increasingly one of the leading causes of deaths in children yet research is grossly underfunded. All cancer diagnoses are traumatizing to the patient and their families but, in children, this life sentence, whether malignant or benign, terminal or curable, just flat out seems unfair. They didn’t have time to abuse their health in their teens and 20’s, live recklessly or take chances. They will never have that illusion of being invincible or free. These kids, including Alex, face a life of hospital stays, IVs, blood draws, MRIs, the fear of recurrence, long term medications and their side effects, and the loss of the chance to be a “normal” kid. And that is if they live.
As parents of a child with a critical health condition, my husband and I face the ongoing work of getting our child the best care which means battling the insurance companies, chasing down healthcare providers, poring over research, getting second opinions, applying for and getting denied for financial assistance, analyzing the before and afters of the diagnosis and waking up every day wishing this were all a nightmare that would end and that everything would be back to normal. You never would think something like this would happen to your kid. I sure didn’t.
So as September and Childhood Cancer Awareness Month concludes, I want to thank our community of Ocean City, Holy Savior Catholic Church and Most Blessed Sacrament Catholic School for every prayer, warm thought, meal drop off and words of support. I ask people to support entities like St. Jude, that not only provide free treatment for children but also research causes and develop new therapies and treatments and ultimately perhaps a cure. Before we go into October, which is Breast Cancer Awareness Month, an equally important cause, I just wanted to call attention to the kids, the warriors who fight hard, life threatening battles during a time when they should be building with Legos or riding their bikes. They are real superheroes. Spiderman has nothing on them.
So as this September winds down, please support the movement to Go Gold to End Childhood Cancer, whether by donating to deserving causes, or even sending a letter of encouragement to a kid at one of our local pediatric cancer treatment hospitals including Johns Hopkins, Children’s National or Children’s Hospital of Philadelphia. Every little bit helps to find support those affected by childhood cancer.
West Ocean City