Son Beats Brain Cancer, Yet Battle Continues

My son William is used to proving people wrong.

Seven years ago, my then-15-month-old boy was diagnosed with a brain tumor so large and severe that one prominent neurosurgeon told my wife, Lori, and I to “take lots of pictures” and put him in a hospice.

But today, he is a vibrant 8-year-old who loves baseball, football, coloring and swimming. There's also something magical about his infectious laugh and crooked smile that touches most everyone around him.

The road from near-death to living, however, was an arduous one. While he beat cancer, William’s battles are far from over.

His journey began on May 23, 2003. Though he was born four weeks premature, he was small but healthy—or so we thought.

William's first year flew by. We loved being parents; holding William was the best feeling in the world. But shortly after his first birthday, we started to worry that he was not interested in walking.

There were other red flags as well, including severe night sweats, waking up each morning with tremors, until he eventually started having seizures. Still, while several doctors told us he would be OK, our parental instincts told us otherwise.

‘It’s Big and in a Bad Spot’

The turning point came on Labor Day 2004 when William suffered a 15-minute grand mal seizure.

Finally, a third neurologist agreed something wasn’t right and ordered a full battery of tests. Still, brain cancer was the farthest thing from our minds.

Our lives were changed forever on Sept. 9, 2004. Doctors at Sinai Hospital walked into his hospital room with the news that all parents fear: he had a tumor that was "big and in a bad spot."

Hearing those words left us feeling helpless, confused, devastated and scared that we were going to lose William, long before his life had really begun. The tumor was as big as a tennis ball and pressed against his brain stem, bending it into a "C" shape.

If the tumor could be removed (the doctors at another area medical facility were doubtful) it would be tedious and costly to William, likely leaving him unable to breathe or eat on his own for the rest of his life, however long that might be.

At one point, doctors told us to take a lot of pictures so "we will always have the memories." At that point, he was given two months to live.

Undeterred, we felt we had no choice but to seek a second opinion, which offered our little boy a glimmer of hope. At 16 months old, William underwent a 12-hour surgery to remove the tumor at Children’s National Medical Center in Washington, DC.

Surgeons removed about 90 percent of the tumor, but complications arose almost immediately. William had a stroke the next day and was in a coma for a week.

William suffered from an infection before he could start chemotherapy. That delay allowed William's cancer to come back in his brain and then spread down his spine.

Again, William's prognosis was grim. His doctors offered little hope but grudgingly agreed to try one round of chemotherapy.

Thank goodness they did.

The Long Road to Recovery

The cancer was gone, but William’s struggles were just beginning.

At a time when other kids his age were learning to walk, talk and play, William faced a dozen surgeries and a year of chemotherapy so intense that it nearly killed him.

His home was the hospital, including long stretches in the pediatric intensive care unit. During this time, he suffered four strokes, had intestinal bleeding, seizures, infections and countless other setbacks.

William also required numerous blood and platelet transfusions. Some of his chemotherapy even required William to get multiple baths a day so his skin wouldn't suffer severe burns in the process.

An "outdoor" adventure for him meant taking a short ride around the hospital floor in a wagon with an IV pole attached. This only came on days when he wasn't in an isolated room, due to a compromised immune system.

All of this occurred before his second birthday.

As horrifying as those treatments were, William pulled through them like a true warrior and has been in remission for six years. But that did not come without a price, as such intensive treatments took their toll on his small body.

William, who was 3 before he could walk, was left completely deaf in one ear and profoundly hard of hearing in the other.

He is also partially blind in his right eye and suffers from several types of seizures. Hearing aids, special glasses, daily medications and frequent doctor visits, along with unpleasant medical procedures, are all part of William's daily life.

Still, we know how lucky we are for him to be alive today.

So many of the children that were William’s friends in the hospital lost their battles. You’re left to wonder why your child made it while other parents will never get to teach their son or daughter how to ride a bike, see them graduate or walk them down the aisle on their wedding day.

William’s experience was a life-altering time for our entire family. We have become active in the American Cancer Society’s and have helped to raise money for pediatric cancer research with .

The Battle is Far from Over

William continues to have his own special needs. He is developmentally delayed, has balance issues and suffers from severe anxiety over seizures.

Doctors have told us that William would greatly benefit from a service dog.

The dog would assist William with hearing, especially in crowded places, alert others when he has a seizure and provide him with a constant companion, especially at night when he has become so scared that he told us and his neurologist, "I'm scared of having a seizure and dying."

Having a specially trained service dog will help William live a more productive and independent life, as he continues to deal with the long-term effects of his surgeries and cancer treatments.

That process, however, is long and expensive. We are required to raise $13,000 to purchase and train the dog.

We have had strangers from all walks of life from motorcycle clubs to firefighters to members of Ravens Nest #8 in Middle River offer not only their financial support, but also their compassion.

That compassion has made this ordeal become somewhat more bearable. Having others to lean on kept our faith strong at a time when we questioned why our little boy was dealt such a poor hand in life. Having so many people reach out has also let us give William the attention he needs to grow into the man we know he can become.

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Ravens Nest #8 is hosting a fundraiser to help purchase William's service dog. "The Night of Games" is set from 6-11 p.m. on Saturday, Oct. 8 at Middle River Volunteer Rescue & Ambulance Co., 2000 Leland Ave. in Middle River. Tickets are $25 and can be purchased at the door or in advance at 610 Compass Road.