Alex diagnosed with cancer.jpgIt was a beautiful summer afternoon in June at the Jersey Shore. My husband and I had taken our four year-old son to the boardwalk to play in the arcade - a rite of passage for most New Jersey children. That morning our son's eyes seemed to be crossing and he was stumbling a bit. We called the pediatrician out of minor concern because we were almost certain that he probably just needed glasses. It turned out that our son had a malignant brain tumor and had to have emergency surgery at NYU Medical Center to have it removed. The surgery was successful but our son went into an almost coma-like state for several weeks.


It was now Fourth of July weekend and I sat quietly at my son's bedside in the Pediatric Intensive Care Unit at NYU Hospital. I read the word "cancer" on a pamphlet given to me by my son's new oncologist. CANCER. The C word. That word put me into a trance-like state. I had read the word many times before. I had heard that people developed it and even died from it but not in my family, not in my husband's family and certainly NOT MY FOUR YEAR OLD BEAUTIFUL AND HEALTHY CHILD.


As I sat numbly in that intensive care unit, I developed a sense of panic for answers to this unbearable crisis that had to be provided instantly! This would be one of many, answer-seeking panic attacks for me. I had no choice but to call the pediatric brain surgeon "on call" that weekend. All the other surgeons were gone to enjoy their holiday weekend. I had a million questions for this "on call" surgeon and yet I wasn't even really sure why I was calling him at home. I was desperately searching for someone to say something, anything to make this surreal nightmare go away. So I paged the doctor and he quickly returned my phone call. I answered my cell phone and heard him announce himself. At that moment, what I heard in the background coming from the doctor's end, that split second of time, before I started to speak changed my outlook on the world forever. I simply heard children (presumably the doctor's children) laughing and playing and splashing in a pool. . . enjoying the warmth of the sunshine and indulging in the carefree happiness of childhood. . . and I was here . . . in the NYU PICU staring at my four year old little boy whose head was wrapped in a white turban and he had CANCER.


When I heard those children playing in the background on that phone call that day everything became clear to me. I was now one of them. I was now the mother of child with cancer. I was no longer that mother happily skipping through life ignorant of the heartaches and catastrophes that happen only to "other people". I was now one of them. It made no difference to me that it was actually my child that had developed cancer and not me. As any mother will tell you, a child is part of you. It would have been easier on me if I had developed cancer instead of my child.


Less than one year later, we lost our son, Alexander, to that terrible C word. However, never letting go of that moment when I became one of them, I founded Alex's Superhero Fund, Inc., a grassroots foundation created in memory of my son to raise awareness and money for other local children diagnosed with cancer or terminal illness. You see I now belong to this new club of people that have or currently are experiencing tragedy that most other blissfully ignorant people could never fathom. Nothing is the same again. The silliness that occupied my mind and time is forever gone. Now, when I am sitting peacefully poolside with my younger son on a warm summer day, I can't help but think about the mother's and fathers sitting at their child's bedside in the pediatric intensive care unit trying to make sense of the world and trying to survive their profound heartbreak.


For more information, visit Alex's Superhero Fund.

Comments (5)

Toni, My heart goes out to you and all that share you pain. Cancer is working its way through my family and it's a terrible thing for anyone to have to experience. The feeling of helplessness is overwhelming. The good is that you've turned the horrible moment you've outlined above into something positive to help others.

Toni,
Your story is touching and beautiful. I give you and your husband so much credit to share your story about your Alex. You truly are an inspiration. You are doing so much good and positive to help others in need. God Bless You!!!!! your postive energy is infectious, it just makes me want to help....

Toni,

just finished reading your piece and as usual your words and courage have moved me to tears. Somehow in a few short paragraphs, you summized the despair and anguish that goes along with your family's experience with cancer.

Rest assured knowing that Alex, your amazing Super Hero, is looking down upon you and saying..."Gee, thanks Mommy...you're the best"

Much love, Marie C

Toni,
I just read your story. It was so well written and conveyed so much feeling with few words. I loved reading it and want to send you my love and support.

Toni,
The "C" word. Oh how I used to not ever want to hear that word again. You are very blessed in that you are able to write in words and express the way that you feel. I am sure that Alex knew how much he was/is loved because of this. What a great way to honor your son with this Superhero Fund that you have set up! I am sure that he is proud of you!

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