By Nassim Benchaabane • St. Louis Post-Dispatch
ST. LOUIS —
Christmas Day marked exactly one year since Auggie Powers, 4, was diagnosed with acute lymphoblastic leukemia, cancer of the blood and bone marrow.
Auggie’s body doesn’t fight infection very well. He can’t afford to get sick: A high fever will send him to the hospital. In the most intensive part of his ongoing treatment, he spent months receiving chemotherapy, blood transfusions and a cocktail of up to 20 pills a day.
But since volunteers transformed Auggie’s bedroom into his favorite hangout in October, he’s been able to forget the doctor visits and chemotherapy, unleash his seemingly endless energy and imagination and spend time with the things he loves: firetrucks and trains.
Auggie is one of more than 40 kids in the St. Louis region since 2011 whose rooms have been remodeled by the local chapter of Special Spaces, a national nonprofit that strives to make the bedrooms of kids with terminal or other life-challenging illnesses a special space just for them. The group, consisting of a core of about eight volunteers, remakes rooms for up to about 10 kids a year.
“Honestly, the one thing was to try to get back to some sense of normalcy,” Auggie’s father, Doug Powers, said. “For a kid that age, not knowing what’s going on other than you’re going to the doctor every day and then every other day and then spinal taps and you’re getting poked and prodded and then medicine makes you go crazy … Special Spaces brought that sense that this is my space, this is my room, I can have fun in here.
“He can go in there and escape, in his own way.”
More than a makeover
Teresa Hutton, co-director, got “hooked” on Special Spaces when a professional association she belonged to sponsored one of the charity’s first rooms.
“I saw the smile on the kid’s face, and there was no turning back,” she said. “When children don’t feel well, and particularly when they’re going through a significant amount of serious treatment and they’re tired and worn out, they spend a lot of time in their bedrooms.
“We make it so they can feel safe and special there.”
For each makeover’s inspiration, Hutton, co-director Keelyn Schwegel and lead designer Julie Haloftis go straight to the source, talking to each child about his or her passions and ambitions. They keep their plans for the room a surprise.
Then comes a special Saturday when volunteers send the family out of the house with a fully planned day of events. Other volunteers, meanwhile, put in a nonstop 12 hours of work building the kid’s dream hangout spot, from a ninja-warrior room — complete with a rock climbing wall and jungle gym — to a shabby chic urban farmhouse out of HGTV.
Volunteers make special considerations for children’s medical needs when they can, from building a shelf to house a breathing apparatus to replacing worn carpet with laminate flooring, helping eliminate dust that made breathing hard for a child with cystic fibrosis.
Special Spaces made a ballerina-themed room for Arianna “Ari” Dougan, who died in November at age 11 after an 8-year battle with neuroblastoma cancer. She was featured in the Post-Dispatch in April after she befriended St. Louis Blues forward Vladimir Tarasenko and accompanied the hockey team on a road trip.
“You become so much a part of the family’s lives,” Hutton said. “… We truly love giving joy to the kids in the time that they can enjoy it. We know and remember the smiles on their faces when we do their room reveal, and we know that we’ve brought them joy.”
Another child, Keira Stout, died in May after a 3-year battle with rhabdomyosarcoma, a rare cancer of the muscle. She was 9.
It was a friend of the Stout family who nominated Auggie for a room makeover, his parents said.
The community of families whose kids face life-challenging diseases is tight-knit and supportive, Doug Powers said. Many have a connection to Special Spaces, and they often recommend one another.
“We didn’t know any of these people initially, and they just kind of came in on their own wanting to do this incredible thing for our Auggie,” he said. “The outreach and support from everybody is incredible.”
The local Special Spaces chapter doesn’t get funding from the national nonprofit; it relies on local fundraising — about $3,000 for each makeover — volunteers’ time and donations from area businesses and organizations. St. Louis Blues for Kids helped remake a room last year for a 10-year-old boy with osteosarcoma, a type of bone cancer.
“These children go through so much and the families go through so much, and you know that although you can’t take away their pain or you can’t heal them or make them better, you can make their home better and make their time better,” Schwegel said.” And give them a special space where they’re safe and comfortable.”
A phone alarm rings one Monday night at the Powers family home in Des Peres. Auggie, 4, is around the corner playing with a train set. “Medicine time!” he says.
Auggie was 3 years old when he was diagnosed on Christmas Day. His mother had been growing more and more worried in the weeks leading up to the holiday as Auggie became sick with bronchitis and frequent fevers.
“He fell in the basement one day and got a bruise on his cheek almost immediately,” Libby Powers said. “The bruise was just not healing.”
“Christmas morning he came into our room around 4, and he lay in bed and was clearly uncomfortable. He just kept getting more and more and more uncomfortable and in more pain.”
Within an hour of blood tests at a hospital, three doctors came into the room and gave the Powers the diagnosis. The doctors talked through all the different types of leukemia and treatment plans.
“It’s an overload of information and emotions all at once,” Doug Powers said. “I didn’t really know what leukemia was at the time. You hear about it, but it’s always someone else’s kid.”
The family checked into the hospital that day, and Auggie immediately started blood transfusions. Hospital staff brought Christmas presents up to Auggie’s room. Auggie began chemotherapy the next day.
“Everyone in the hospital heard the story of the boy who got diagnosed Christmas morning,” Doug Powers said.
Auggie had to take steroids for a week each month. The drugs had him waking up at 3 a.m., extremely hungry. He gained weight and often appeared bloated and tired, struggling to move on his own.
He spent every night at home sleeping in his parents’ bed, avoiding being alone in his own room.
Then Special Spaces reached out.
“When an organization like this comes along and says they want to do something special for your child, what else do you say?” mom Libby Powers said. “Absolutely, you say yes.”
When it came time to remake the room, Special Spaces sent the Powers family to the West County EMS and Fire District, where Auggie got a behind-the-scenes tour of the firehouse, with a ride in a real firetruck to boot. After lunch at the Shack, they spent the rest of the day at the Transportation Museum.
“We had no idea, and Auggie was overwhelmed,” his father said. “They gave him a brand-new helmet; he got to try on the clothes, got a ride in the firetruck. Got to put the ladder up. Actually, we were all a little overwhelmed. It was so cool.”
They returned to a house packed with family and friends awaiting Auggie’s room reveal.
“The experience that we got to spend the day together as a family, and then the experience he got to come home and walk into this room — your heart explodes that people put it together and just want to give themselves to make him so happy,” Libby Powers said.