Readers share pain of boy's cancer fight
- New York boy has brain tumor
- His mom blogs about pediatric cancer
- Readers follow family's journey
PAWLING, N.Y. -- Each night, Cindy Campbell sits down in front of her computer and forges an intimate bond with thousands of strangers, divulging the sort of medical details and emotional ups and downs most people have trouble confiding to their closest friends.
In the two years since her son Ty was diagnosed with a malignant brain tumor, Campbell has blogged about her family's experience, sharing everything -- from highs like a visit from a mobile petting zoo to the lows of infections and painful chemotherapy sessions.
With Ty paralyzed and on home hospice care since Sept. 17, Campbell said she and her husband Lou see the blog as her way to ensure her son's life is documented and his legacy preserved.
In recent weeks, her entries have grown darker and more frank, describing the truth about terminal pediatric cancer in vivid detail.
"Lou and I bought Ty a casket today, online, and his suit came in. Not the kind of birthday 'presents' any parent should have to buy," Campbell wrote on Oct. 4, Ty's fifth birthday. "We are all still praying that we'll never have to use them. Those would be the best unused presents in the world. The best money we ever spent."
Begun as a way of letting friends and family know the intricacies of Ty's cancer treatments, her blog — raw, honest and often heartbreaking -- soon drew a devoted following and attention from The Huffington Post. For Campbell, it became a cathartic emotional release.
"It felt like I was doing something just by letting it go, and then I could function better the next day, feeling that sense of getting it all out on virtual paper," she said. "It was never about the audience. It was about the story."
Ty is one of those kids the word "towheaded" seems tailor-made for, with blond hair, big eyes and a messy punk-rock mohawk. He spent Wednesday morning falling in and out of sleep, looking up when his parents read him a book about Christmas -- ''Santa is probably his favorite person -- well, Santa and Nana," Campbell joked -- and mouthing "yes" and "no" in response to questions.
He smiled, too, when his younger brother Gavin, 3 and a half, bounded into the room in a hand-me-down Spiderman costume that used to be Ty's.
Campbell calls her blog Super Ty, and it's not just because her son was obsessed with superheroes when he was diagnosed. She said Ty is a "cancer warrior" and has "bravery from a little boy that you wouldn't see in some of the strongest men."
"Everything we tell him is that it's going to hurt, but it's going to help him get better. And it's hard because it hasn't helped him get better and it's just hurts more," she said. "I just whisper in his ear and I tell him that he really is going to feel better soon. I think he's just this 5-year-old boy who knows more than everyone."
The family's living room is packed with presents sent by his Internet well-wishers, from a lollipop pinata for his birthday to a hand-painted family portrait sent by a blog reader from North Carolina.
In hundreds of blog comments and more than 8,600 "likes" on Facebook, Campbell's readers -- writing from France and Nebraska, El Paso and Ohio -- tell her Ty's journey gives them strength. A prayer chain event on Facebook started by Mahopac, N.Y., resident Debbie Goodwin, a family friend, drew more than 5,300 attendees. Campbell said an aunt and uncle in Nyack, N.Y., "have their whole town praying for Ty."
Ty's last family outing included a trip to a diner on Sept. 14. But soon after Ty sipped at his strawberry milkshake, Campbell sensed something was wrong.
On Sept. 15, Ty was admitted to urgent care and two days later, results of a scan came back showing that the cancer had returned aggressively and had spread through his central nervous system. That's when the family began hospice care.
Through it all, Campbell has continued to chronicle her family's journey. On Sept. 17, she wrote about coming to grips with Ty's turn for the worse in a blog post titled, Our aching hearts.
"When I try to imagine my life without him I get lost in a fog of pure grief," Campbell wrote in a post that drew 233 comments. "How am I going to be a good Momma to Gavin, who deserves so much. And what will he make of all this? … Will his first Little League game be nothing but sadness for me because Ty never got to wear that adorable football uniform that Lou has been training him for since he was born?"
But Ty understands what's coming, Campbell said.
"We're trying to keep it as normal and the same as possible, but Ty's just so sick, it's just so hard," she said. "The things that used to make him happy I can't offer him anymore. As a parent, the hardest thing to imagine is to want this to end, but we do."
Cindy and Lou Campbell have established the non-profit Ty Louis Campbell Foundation, which will work to fund pediatric cancer research and provide support to families.
No matter what happens to Ty, Campbell said she plans to keep writing her blog and remain plugged into the community of people who care about her son -- everyone from her husband's family in Carmel and Mahopac to the reader from Germany who sent Ty a box of candy this week.
"Sharing his story helps us feel like he was here, he was known," she said, through tears. "It's just so unfair. I really hope what Ty went through and everything we can do to share his story and raise money for research and all of it, I really hope that the next kid, the next Ty Campbell, will have a different experience. He won't have the radiation that leaves him paralyzed. He won't get so sick. And he'll survive."