6-year-old gets wish: Trip with family to Disney World
ST. JOSEPH — With Mickey Mouse ears on his head and a Nintendo DS in his hands, Will Page plopped his pajama-clad body inside his new suitcase this week and declared he was ready for Disney World.
After living half his life with leukemia and all the cruelties that come with it, the 6-year-old from St. Joseph could really use a shot of the happiest place on earth. So could the rest of his family.
Thanks to the Make-A-Wish Foundation, Will; his parents, Jim and Angela Page; brother Aric Pelafas, 16; and sister Jill Page, 24, are on the first real vacation they've ever taken together as a family.
A limousine picked them up at 6:15 a.m. Wednesday to take them on the first leg of their journey to Orlando, Fla., where they will spend seven days and six nights as pampered guests — free.
Besides all the Disney parks, Will planned to swim with the dolphins, another of his special wishes. None of the family has been to Disney World before.
When Will's doctors at St. Louis Children's Hospital first suggested a Make-A-Wish trip three years ago, Angela Page dismissed it.
"I said absolutely not because in my mind Make-A-Wish is for kids who are going to die. I couldn't even wrap my head around the fact that we had a child with cancer," she said.
With three years of intense chemotherapy, about 500 hours of driving, 28,000 extra miles on vehicles, and countless hours of vomiting behind them, the Page family is "starting to feel like we're in the end zone," said Angela.
"He's healthy enough that he deserves to enjoy something, to have a positive focus instead of a medicinal focus," she said.
Will's health problems started in October 2008, when the then 3-year-old complained of leg pain and had a fever. What was initially thought to be a malignant tumor in his left leg was eventually diagnosed as acute lymphoblastic leukemia.
"They called us to confirm it was leukemia while he was out trick-or-treating. The doctor wanted to hospitalize him right away and I said, 'No, we're going to let him trick or treat,'" said the petite, articulate mom who would become a force to be reckoned with during her baby's future treatments.
Husband Jim, a retired Urbana police officer who is now executive director of the Illinois Law Enforcement Alarm System (ILEAS) in Urbana, wasn't about to overrule his wife on that decision.
Through a Caring Bridge web site and Facebook, the Pages have kept scores of family and friends, including many people they've never met in person, up to date on what Will has endured. Even at his worst, their messages remained positive. There have been more than 43,000 visits to the Caring Bridge site.
"I don't know that it's hope. It's a discipline. Otherwise, you fall into a pit of anxiety all the time and you can't get anything done," said Jim.
Angela's eloquently penned posts have included many heartwarming acts of love shown to the family. She even coined the word "sweep" — a smile with a weep — to describe the joyful crying the acts have prompted.
Because there was no pediatric oncologist locally in 2008, the Pages chose St. Louis Children's Hospital for Will's treatment.
"They are geared for it. The traveling is a pain. The expense is a pain. Money is irrelevant when you're talking about your kid's well-being, emotionally and physically," said Angela.
Jim Page estimated they've made 70 round trips from St. Joseph to St. Louis in the last three years. When Will has been required to have a spinal tap — more than 20 of them — it's meant having to stay overnight.
"He can't eat or drink for six hours before because it's done under general anesthesia," Jim said.
As any parent knows, three-and-a-half hours in a car with a toddler who can't eat or drink is practically impossible.
"If he wasn't eating, we weren't eating. It was a lot easier to go the night before and let him sleep right up to the appointment," Jim explained.
Of all the treatment challenges, the spinal taps were the hardest for the experienced police officer to witness. When the medicine Will got before the procedure kicked in, his body went limp and he appeared dead.
"We've tried to downplay (to Will) everything as much as possible. When they know you are anxious or upset, they get that way. He knows you get the milky medicine, you take a nap, you wake up, you have a snack and we go home," she said.
A big fan of the Teenage Mutant Ninja Turtles, Will understands swordsmanship. When he was 3, his mother used swords to explain to him what was going on in his body.
"Everybody has good and bad cells. And the good and bad cells in your body are having a fight. When you take the medicine, it's like swallowing little swords to help the good cells fight the bad cells,'" she said, showing expertise in an area she never cared to know about.
"Doctors give you advice about how to dispense medicine. Who's going to tell me how to breathe?" she recalled of her early reaction to what was happening.
Jim Page said there was little written in a way they could understand when they began researching leukemia. Friend and fellow retired police officer Tim Voges, whose wife Sue battled breast cancer for 11 years before succumbing in 2010, counseled Page to allow people to help them.
"'It will make you and them feel better. You think you can do it all but you can't,'" Jim Page recalled of his friend's advice.
They have gratefully accepted.
People have sent care packages to Will, put money on their drug account at The Apothecary in St. Joseph, supplied them with cash and gift cards for St. Louis trips, taken care of Aric while they've been away, held Will's spot open in the day care center, accompanied them on the runs to Children's, purchased rubber bracelets with the words "Will Power" on them, and prayed.
Late on a Sunday night in March 2011, Jim and Angela had to flee an ILEAS conference in Springfield that they had helped plan — Angela also works for ILEAS — because Will was in the emergency room in Urbana with a fever and had to be rushed to St. Louis. Turns out he had pneumonia. They were in St. Louis three days that trip.
"I had a two-hour speech to give to 600 people Monday. I handed it off to someone else and said, 'Good luck.' My boss, the president of our board, gutted his way through the presentation," Jim said.
Angela experienced a "sweep" as she recalled the St. Joseph-Ogden High School volleyball players who sported yellow T-shirts for children's cancer for "Will Power Night" in September 2009 at the high school, an event that netted the family about $3,200 to help with expenses. The family has health insurance through the city of Urbana.
"Even the opposing team, Westville, the coach wore a yellow shirt and the girls had yellow ribbons in their hair," she said, crying. "This St. Joe community has been a godsend. You don't ever expect to be on the recipient end." And because of what they have received, they feel the only way to show gratitude is to pay it forward.
Will and his mom have baked and shipped several batches of brownies to soldiers in the Middle East and they have reached out to other parents of children with leukemia with information and support.
Will is currently feeling pretty good, having gotten his last dose of chemotherapy in January. He's scheduled to have his port, where the live-saving drugs have been pumped into his little body, surgically removed after school is out.
Both Jim and Angela want Will, now an academically bright first-grader, to be of service to others so they have to show him how by example.
"It's easy to let him be spoiled. Are you going to yell at a kid with cancer? Sometimes you do. But you also think, if we save his life, we don't want him to be a jerk," said his father.
Angela's father had lung cancer and died March 20, 2009, while Will was getting a blood transfusion in St. Louis. There were weeks when she took her dad to the doctor one day and Will the next. She's not had much time to grieve for her father.
"I feel like a piece of bubble wrap, compartmentalizing my emotions, letting out a little at a time," she said.
But the Pages have found that the joy in their suffering, manifested through the actions of others, has far outweighed any sadness they've felt.
"You don't have to spend too much time in a childhood cancer center to feel blessed," said Jim.
"It's about finding joy, If you're standing in a pitch black room and there's a little sliver of light, you don't stare at the black wall. You stare at the sliver of light," Angela said.