9-Year-Old Boy With Terminal Cancer Lives All Out

Published: Thursday, March 22, 2012 at 11:22 p.m.

Last Modified: Thursday, March 22, 2012 at 11:22 p.m.

Blake, a 9-year-old boy with brain cancer and no realistic hope of recovery, is far more interested in playing the living child ? zestfully, rambunctiously living.

When a stranger enters his father's Lakeland home and begins asking Blake intrusive questions about his condition, his four years of agonizing treatments and his uncertain future, the boy's defiant smile withers. He speaks in a soft voice and sometimes merely shrugs his shoulders at the unwanted inquisition.

Step back and allow Blake to be himself, though, and the smile returns. Watch as he runs laps inside his father's house, whipping past the "Do Not Resuscitate" order affixed to the refrigerator, right beside Blake's drawing of a purple pickup.

Behold the sight of Blake rolling down the road on his electric scooter, wearing an outlandishly colored helmet with a ridge of rubber spikes forming a Mohawk. Appreciate the moment as Blake, like any feisty 9-year-old boy, gives his big sister an affectionate jab.

And listen as his sister, Morgan, says she is 10, about to turn 11. Blake immediately adds, "I'm 9, about to turn 10." His father, Jason Appleton, laughingly reminds Blake that he won't be 10 until next February.

In coldly medical terms, it's unlikely Blake will see his 10th birthday. Doctors told his parents in October that without further treatment, Blake would live perhaps six months.

In November, after briefly resuming a grueling form of chemotherapy, Blake told his parents he had had enough of the treatments.

"It made me feel like I was miserable," Blake said. "It made me feel like an unhappy boy."

He stopped the treatments, he said, "because I wanted to be a fun kid."

He no longer wanted to be a cancer patient. He just wanted to be Blake again, for whatever time he has remaining. And part of that involves helping other terminally ill children through the Blake Appleton Foundation, recently created by his father and some friends.

HOPE AND DESPAIR

Here are the relevant facts: On Jan. 1, 2008, doctors discovered a large tumor embedded in Blake's brain. It was surgically removed the next day.

Since then, Blake has endured more than 50 rounds of chemotherapy, during which powerful drugs were injected directly into his brain and spinal cord. He has also gone through 30 cycles of radiation and about 20 operations, several of them involving shunts inserted to allow fluid to drain from his cranium and to relieve pressure on his brain.

Blake and his family have experienced two cruel periods of false hope, when his cancer seemed in remission only to return, most recently last fall.

Blake has long but sparse blond hair growing back after chemotherapy-induced baldness and a bump on his skull from the shunt, which he called "a big spike in my head." His chest shows rounded scars from ports used for intravenous treatments. He has a long, vertical scar on the back of his head that he calls his "zipper."

Morgan said it has been difficult to watch her brother's ordeal of the past four years.

"It made me want to cry a lot," she said. "Sometimes when I see Blake ? throwing up, I'm afraid he isn't going to live to the next day."

Since ceasing the treatments in November, Blake said he has generally felt good. His mother, Miranda Appleton of Lake Wales, said an MRI performed in January showed significant growth in clusters of cancer cells on both sides of Blake's brain and on his spinal column.

Both of Blake's parents said it was difficult to accept his decision to end treatments last fall after two new cycles of chemotherapy.

"From the first day he started (new) treatment, he kept telling me he didn't want to do it," Miranda Appleton said. "It wasn't a huge surprise to me that Blake wanted to stop the treatment. I think he was more scared that I would be hurt by him making that decision."

Blake is now under hospice care. He receives weekly monitoring, and as his condition worsens, he eventually will have a full-time nurse to administer pain-management medications, his father said. Doctors have told his parents Blake can engage in normal activities as long as he's able.

Blake decided earlier this month to stop attending Polk Avenue Elementary in Lake Wales, where he was in the second grade. Jason Appleton said his son has spent so much time around adults during his treatments that he had some trouble relating to other children.

"He kind of gets the mentality of an older person, so when he goes back to school, he doesn't feel like he fits in with the kids because their thinking pattern isn't the same," Jason said.

Gail Quam, the principal at Polk Avenue Elementary, said she supports Blake's decision, even though the staff and students feel his absence deeply.

"Blake is a young man who has just obviously more courage than anyone that I know," Quam said. "He is a positive spirit. He always has a smile; he's always happy even if he's not feeling well. ? He's just an amazing young man, and we miss him here at school but he has to do what's right for him and right now, this is what's right for him."

MEETING TEBOW

Blake has acquired a certain fame as a young cancer patient. He got a full tour of an Auburndale Fire Department station last year, and the Polk County Sheriff's Department made him an honorary deputy in January.

Blake has received autographed photos from various country singers, including Rodney Atkins, and a pair of size-18 shoes from Orlando Magic center Dwight Howard. But his most cherished encounter came Jan. 1 ? exactly four years after his cancer diagnosis.

Somehow, word about Blake's plight reached Tim Tebow, the former University of Florida quarterback who led the Denver Broncos to the NFL playoffs last season (before being traded Wednesday to the New York Jets). Blake has long been a Gators fan, and much of his treatment took place in Gainesville, a place he calls "Tebow Country."

In December, Blake received a surprise call from Tebow at his mother's home. And then an Orlando TV station helped arrange a trip to Denver for Blake and his mother and sister for the Broncos' regular-season finale.

During pregame warmups, Blake met Tebow inside the stadium, and the two chatted for a few moments.

"He said I'm his hero," Blake recalled.

He now wants to be a hero for other kids who are enduring life-threatening illnesses. With Jason Appleton's blessing, a group of family friends has created the Blake Appleton Foundation, a nonprofit whose main purpose is providing toys and other gifts to terminally ill children, starting with patients at Arnold Palmer Hospital for Children in Orlando, where Blake has undergone treatments.

Lora Donley, one of the foundation's directors, said the family has received so many gifts and monetary donations that Jason now wants to pass along the generosity to others.

"They've been blessed beyond what the average family would be blessed," Donley said. "Instead of keeping everything, they want to be able to give it back. They don't want to take advantage of the generosity of the public."

SERIOUS SHOPPING

Blake, along with his father, Morgan and a few of her friends and supporters of the foundation, made a trip to a Lakeland Target store Tuesday evening to buy gifts for patients at Arnold Palmer. Blake, trailed by his entourage, tossed boxes of Lego sets, a toy machine gun, a slew of movies on DVD and some coloring books into an oversized shopping cart. Morgan and her friends handled most of the gifts for girls.

As Blake sat in the "buggy" at the checkout line, he mentioned wanting a real gun, which led to talk of a possible turkey hunting trip. And then Blake flashed his "guns" ? flexing his biceps for those around him who were holding cameras.

The total for the purchases came to $495.73.

"They will all thank me now," Blake said.

As part of Blake's bucket-list approach to the rest of his life, his mother is giving him the chance to travel. Miranda Appleton, Blake and Morgan left Thursday for a long weekend in New York City. If Blake's health allows, they plan to visit Hawaii in April.

Even as he tries to live a normal life, Blake said it's impossible to distract himself completely from the reality of his cancer.

"It's always in my mind," he said.

On the drive to Target, Blake casually told Donley that he would be going to heaven to join his girlfriend, a former Arnold Palmer Hospital patient who recently died of cancer.

Miranda Appleton said her son is determined to live fully in each day he has left.

"Blake's been happier and he feels like for the first time in four years he's been able to just live a normal life and have a childhood," she said. "He still runs and plays and goes swimming and hangs out with his friends and laughs. He's a little ball of fire."

[ Gary White can be reached at gary.white@theledger.com or 863-802-7518. Join his discussion of books at www.facebook.com/ledgerlit. ]

Source: http://www.theledger.com/article/20120322/news/120329713

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