Dominic's disciples: Kid draws a crowd of pros praying for him
#Prayfordominic. FLETCHER COX does. He's been praying for Dominic since March 7, when he sent a Facebook video message:
FLETCHER COX does.
He's been praying for Dominic since March 7, when he sent a Facebook video message:
"I hope you feel better, man. We're praying for you."
The message arrived just hours before doctors operated on the Grade III anaplastic astrocytoma in Dominic's brain. It is a rare, recurring, malignant tumor that turned a 7-year-old sharpshooter into the other kid on Lenape Lane with a wheelchair. Dominic Liples' 5-year-old little brother, Ciarlo, was born with spina bifida.
Ciarlo's lower body does not function, but he's spunky and fiery and Ciarlo (CHAR-lo) just got a wheelchair last year, and he used to get all of the pity, too. Now, Ciarlo is the lucky one.
Doctors told Dominic's parents that they cannot predict exactly what will happen. They told them chemotherapy and radiation might help, or might not. His parents have planned nothing for Dominic past this summer.
Cox is perhaps the best-known of a growing legion of Philadelphia athletes and others to send their prayers Dominic's way. What others?
Well, President Obama, for one. Last month the president sent Dominic a personally signed letter on his eighth birthday.
"That's been the best thing so far," Dominic says with his little half-grin.
That grin is never too far away.
The Eagles do.
Cody Parkey, the kicker, signed a football and had Swoop, the mascot, deliver it to Dominic at the Children's Hospital of Philadelphia . . . just before Dominic went for his pre-surgery sedated brain mapping MRI.
A week later, unannounced, Parkey and two teammates visited Dominic at CHOP. It was a wonderful reward, since Dominic had just finished his daily walk. This time he made it halfway down the hallway. He needed a two-hour nap when they left.
The Sixers dance team and the Flight Squad and Franklin, their mascot, came, too. Still, it was a long 26 days.
A little less than four weeks is forever when you're not quite 8 and you're very, very sick. Dominic went in as a typical kid, the best shooter on his YMCA hoops team.
He left with a 6-inch scar on the right side of his head, no use of his left hand and a plastic brace that runs from his left knee to his toes. Doctors wanted to keep him at CHOP longer, until his chemotherapy and radiation treatments began, but his mother, Kira, insisted he needed to see his bed and toys and friends.
When he woke up April 1, his discharge date, he looked at Kira and said, "Mom . . . What if it's an April Fools' joke? What if they don't let me go home?"
She hugged him tight and took him home.
Sebastien Le Toux and Ray Gaddis are praying for him; another Facebook message delivered by the Union stars. Saba is Dominic's favorite soccer player, so his prayers in particular delight Dominic . . . but not as much as Robert Covington's.
Dominic likes all sports, but he's a baller at heart. A few days after Covington recorded his message Covington's actual game jersey arrived. It was, of course, about 10 sizes too big. Dominic adores it.
He appreciates everything: The signed puck and Flyers flag signed by Wayne Simmonds; the autographed baseball from Phillies slugger Maikel Franco; the Eagles gear, fresh from the family's trip to the NovaCare Complex.
What a day that was.
On Thursday, April 28, he did all the typical things in his exhausting day. He woke up at 6, ate four bagels and three bowls of cereal (the steroids make him ravenous) and went to school for about two hours. It's all he can take, but an 8-year-old kid needs to see school. Then he scooted over to physical therapy for an hour, wolfed down some mac and cheese and took his chemo drug. Then, with his parents and Ciarlo, he rode an hour to undergo radiation therapy at CHOP. This daily commute is their family time.
Then, they headed to South Philly.
As the family got out of their van at the NovaCare Center they were met by Eagles head coach Doug Pederson, his coordinators, team president Don Smolenski and Swoop. The Birds might have drafted Carson Wentz, but Dominic and Ciarlo were the stars at the Eagles' draft party.
Prayer already has brought this young family so much support - prayer, or, if you prefer, friendships.
Every gift, every visit, every Facebook post appears unsolicited. Kira is a social media maven - she started the #prayfordominic page to divert the hundreds of daily text messages asking for updates - but all she has ever asked for is long socks, because Dominic has to wear long socks under the brace.
"One day, Ciarlo will be able to wear those socks," Kira said. It is a stunningly sad statement, delivered abruptly, but she shows no sadness. This is her life. She must be practical. After all, once your heart has broken once, then twice, how much more can it break?
They live in the house on Lenape Lane, just outside of Doylestown, where her mother, Ann Farny, wasted away from all of the painkillers she took to endure 20 years of Regional Sympathetic Dystrophy. Farny died when Dominic was 10 months old.
She never saw Ciarlo, the grandson whose spine failed to fully develop. She never had to deal with the awfulness that has befallen Dominic.
His classmates are.
The bus was due in four minutes the morning of March 5 and there was no sign of Dominic; odd, because he loves school. Kira ran upstairs and stormed into his room and saw he didn't even have his shoes and socks on. In fact, it looked as if he was goofing off, trying to put on his sock with only his right hand, and she nearly lost it. Then he looked up at her with soft green eyes and explained, fearfully, "Sometimes, I don't like to use my left arm."
She got him dressed then watched, uneasily, as he walked down the hallway. His left shoulder drooped. His left leg dragged a bit. She remembered, then, how over the past few days Dominic had struggled to buckle his seatbelt; how he couldn't put on his T-shirt because his left arm couldn't find the hole.
They went to the family doctor that night and, suspecting Lyme disease, the doctor sent them to Doylestown Hospital for blood tests, and they thought, "Great: spina bifida, and a lifetime of operations and dietary restrictions and enemas and handicap accessibility . . . now, Lyme disease."
The blood work didn't show Lyme disease. They ran a CT scan and they found the mass on his brain and they sped him to CHOP in an ambulance that night, and everyone began to #prayfordominic.
The next day, Dominic saw Ciarlo at the hospital; Ciarlo, his famous little brother. Ciarlo, buoyant and charismatic, has twice been a guest of Claude Giroux and the Flyers, and, through various charities, he has been a guest of the Sixers, Eagles and Phillies, too. Ciarlo is on a CHOP billboard, but now, finally, Dominic had an advantage.
"Hey Ciarlo!" Dominic called when his brother rolled in. "You might be famous, but I got to ride in an ambulance!"
That is Dominic as usual, at his best, but he isn't always so sunny. He has 'roid rage and energy lapses and he worries that he can't play with kids who come over for play dates.
Sometimes he sees his mother cry, and he knows why she's crying, and he looks at her and he says:
"I'll never stop loving you."
So, there's your answer.
Your heart can break every single day.
He wakes up five or six times a night, usually to go to the bathroom. He has trouble getting back to sleep, so, after he wakes up the first time, Kira spends the rest of the night in his bed, the way she slept with him every night at CHOP.
He has a wheelchair but it's a regular wheelchair, and, since he has only one functional arm, it's a bad joke wheelchair, only good for making circles in the driveway. A special model for one-armed patients exists but the insurers have been slow to provide it.
"They say it could take six months," Kira says, angry. "Six months? We might not have six months!"
A proper wheelchair would be a blessing, and a respite. Dominic's needs and bodily functions arrive intensely, without warning: hunger, sleep, No. 1, No. 2, you name it. They keep the bathroom doors open, but sometimes there's nothing they can do.
Sunday morning, as the family got ready for church, he vomited, and violently, and the Liples had to change their plans, Kira says:
"Happy Mother's Day. To me."
She laughs, and there is lots of laughter in the little house because the family is strong, religious. Kira is trim, athletic, a fine match for her husband Ken. Both look younger than 40. On this gray day, she wears a wine-colored sweater and wine-colored lipstick that match the wine-colored dye in her hair.
The ordeal has sapped her appetite, she acknowledges, "But, hey, at least I finally got rid of that baby weight."
Since March, Kira has lost 15 pounds.
Pray for that family, as strong as it is, because it lives in a forest of reminders.
An adjustable basketball hoop stands at the end of the driveway, leaning forward, ignored among weeds. It is set at 7 feet. It will never be raised higher.
Kira and Ken were jocks in high school. They remain rabid sports fans. Their basement is decorated with a Tiffany-style Eagles lamp and a framed Eagles pennant. They took Dominic to a Sixers game in January and, for once, he seemed interested in something besides the mascot. He finally shared their passion! He would play sports, too!
"I was always OK with Ciarlo and his situation," Kira said, "because, before, I had Dominic."
At the back of the big yard there stands a two-level tree house. Ken and a friend started building it Memorial Day of 2014. It took a full year to finish, partly because the bottom level had to be handicap accessible.
"The bottom of the tree house was Ciarlo's," Kira said, gazing out of her patio door. "The top, that was Dominic's. But now . . . "
Now, no one goes to the top of the tree house.
Do it, even though the teams have been as kind as the gene pool has been cruel.
The community has rallied, of course. Gifts arrived by the bushel. Lego sets, 25 in all, sit piled on the kitchen table. Dominic can still manage Legos.
Ken had to put a big, white cooler outside their front door so friends could leave meals if the family was out. Neighbors take turns cutting the lawn. A woman Kira met at church just before the surgery produced 600 "Pray For Dominic" wristbands by the time the surgery was over. Adult sizes have sold out online. A different version is still available.
Like mushrooms after a rain, #prayfordominic signs appeared overnight all over Bucks County; at theaters, coffee shops, pizza joints, even inside those little lending libraries on street corners.
The family sees the signs, and they feel the love, but they knew it would come, the way it came for Ciarlo. They are part of the fabric of this small community. Kira is the mom who makes a meal for that family whose dad died, or the family whose mom lost her job, or the people at church who just adopted a foreign kid.
They expected the community to rally for Dominic the way it supports Ciarlo, but they simply cannot believe what the professional teams have done.
"It helps," Kira says. "It just helps so much."
Dominic has to wear socks so he wears the coolest socks he can find. Today his favorites are green, with aliens on them, and they match his T-shirt: a Minion wearing an Eagles helmet and jersey, No. 1/2
The other day he wore his Phillies outfit to physical therapy.
"I told the therapist, 'I'm Phillies down below, but I'm Flyers up top!' " he said, and pointed to his gap-toothed smile. "Get it? No teeth! Like a hockey player!"
Really, how could you not be like Fletcher and Cody and Saba and Obama?
How could you not #prayfordominic?