Friday, June 10, 2005

Alex's Lemonade - Elixir of Life

"One in every 330 Americans develops cancer before the age of twenty."

Cancer is bad enough. In children, it's grotesque. There's simply no other word for it. When you hear about a child with cancer, you cringe, you pray, you try to relate. But unless you've been there, you haven't a clue. I hope you never will.

This weekend Alex's Lemonade Stand begins a summer campaign to raise money for pediatric cancer. In our family, we know how critical the cause is -- because we've been there. Our story is horrific, but it's inspirational too.

The American dream. Nice suburban house, mini-van, Mom and Dad, 2 kids and a dog -- you get the picture. Now picture this: one of those kids got cancer. It's unthinkable. Surreal. And yet, so ordinary.

Mom's folding laundry one day, chatting with her happy, healthy, precocious 4-year-old son (my nephew). He's lying on the bed on his side. She notices each time she speaks, he lifts his head off the pillow. She asks him why and he says, "So I can hear you."

Uh oh. Tonsils? Adenoids? Ear infection? If only. In dizzying progression, pediatrician leads to specialist leads to MRI leads to biopsy leads to pure, unadulterated hell. The news is so bad, it's hard to breathe.

A rare disease called Von Hippel Lindau Syndrome (VHL) has caused an extensive tumor to invade the right side of his head. It was there before he was born. It's grown hugely. And it's still growing. It might not be too late. An immediate operation is necessary.

But there's a terrifying glitch: the disease is almost never seen in children. My nephew is one of the youngest patients in the US diagnosed with VHL. A deadly distinction. No pediatric surgeon has ever removed this kind of tumor. Consultations are held, frantic research is done. It's finally decided that a neurologist experienced in adult VHL tumors will operate in tandem with a pediatric neurosurgeon.

Time contracts. We live at the hospital. The tiny patient has become so needle-phobic they hide his IV under teddy bear printed wraps. Still he screams, just knowing it's there.

His 2-year-old sister is beyond bewildered, trapped in her own special nightmare. Away from home. Her big brother--her beloved playmate--locked in this scary place, terror-striken, shrieking. Strangers coming and going. Her parents and those few who inhabit her small universe altered, different, hugging her too hard, then turning away to cry. Trying desperately to maintain some semblance of normalcy in the midst of our anguish, and mind-numbing fear.

The operation takes 14 hours. Skip over this part if you're squeamish. His right ear is removed to get to the tumor, which has invaded his auditory nerve and carotid artery. They must be severed. A chunk of his brain and skull is removed. A form of medical cement is placed in the cavity. The ear is replaced. But the hearing is gone. One side of his face is paralyzed, perhaps for months, maybe forever.

The surgeons come to us exhausted but smiling -- no matter the collateral damage, at least they don't have to deliver unthinkable news. "He's alive. Thank God. He's alive," echoes through the waiting room as wet cheeks touch, tense arms intertwine, damp hands shake, gnawed lips whisper prayers of gratitude.

The celebration of life is welcome. But the reality of recovery is torture. He wakes in fierce pain. Nauseated. Frightened. Head heavily bandaged and immobilized. The IV's, the tubes, the shots are unrelenting, sending him into frenzied panic attacks.

I sit by his bed while his mother takes a short break, a few moments to sob privately on his father's shoulder. He should drink but he's afraid to swallow. I ask for a grape ice pop--his favorite--slide it gently across his lips. For the first time in weeks, a miniscule and heartbreakingly crooked smile. I've never felt so gratified, so useful.

The family room overflows with friends and relatives. People send trays, boxes, buckets of food. Everyone wants to help. No one quite knows how.

A small sidebar: there's another little boy in Pediatric Intensive Care. We don't know what's wrong, but his mother and sister sleep on the floor next to his bed every night. We finally realize they have nowhere else to go. They're homeless. No money for food. No visitors. Nothing.

We wrap them in our good fortune, share our food, our sympathy, give them a little money. And, in the midst of our own abominable distress, realize how lucky we are.

Luck is relative, of course. VHL is genetic. In the aftermath of relief comes renewed panic -- his sister is most at risk. Everyone in the family has full body MRI's, blood studies, genetic review and counseling. All negative, thank God.

His cancer is gone for now. But the threat will linger forever. And the damage is permanent. To the body, to the soul. Five years have passed, but for the immediate family, PTSD lingers.

Because it's never over. Ongoing tests -- more needles, more IV's. Hearing aids. Vigilance. And unceasing anxiety. The most common childhood illnesses are no longer simple, or benign. Every anomaly must be viewed with caution, examined, feared.

And yet. And yet. The American Dream is alive and well in their house. In fact, it's thriving. School, homework, Little League, ballet. Scooters, computers, birthday parties, vacations. Arguments, punishments, chores, responsibilities. Jokes, laughter, life ... love. And hope.

I am in eternal awe of his parents' courage. Of his sister's resilience. And of his own enduring bravery.

But understand this: you never get over it. You just get on with it.

Help find a cure for pediatric cancer. Please.

Welcome to Alex's Lemonade Stand

Cancer Research Fund - VHL Family Alliance

You can read more about my nephew's journey here One for the "Angel Files". And here Another Glorious Birthday.

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Blogger Beverly said...

Thank you for your stories of Alex. I'm reading through my own son was diagnosed with VHL at 16 years of age. Although diagnosed with brain tumors different from the one Alex had(I know this because I know TOO MUCH! of all tumors related to VHL), the story of Alex's hospital stay brings back so many memories.

Life can be so hard, but these VHL people are so strong, aren't they?

1:00 PM  
Blogger Sally Swift said...

Beverly, all VHL people--which especially includes their parents, grandparents and siblings--are strong and brave.

Your blog on Steven's Journey is beautiful and inspiring, clearly a reflection of you and your family.

I've sent your blog to Alex's mother Karen in hopes she will find familiarity, hope and perhaps a new VHL Parking Lot Therapy friend.

PS Bravo to Steven for the B in Calculus!

3:33 PM  

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