The toughest Jayhawk fan you'll ever meet: Bo Macan is 26 pounds of pure heart
KANSAS CITY, Mo. -- Bo Macan is 26 pounds, all of it heart, Sisyphus in a Superman t-shirt. He was born 12 weeks early and stayed in the hospital another 12 weeks after that, a record player that runs too fast some days, too slow during others.
At nine months old, he was diagnosed with Type I diabetes. Sometimes, he's up at 4 a.m. at the family home in Roeland Park, Kan., testing gravity and his siblings' patience, the way 4-year-olds do. He'll have a half-dozen meds, and Mom checks his blood sugar again. He takes breakfast with the aid of a feeding tube that connects near his stomach, an opening smaller than a quarter that sticks out about half an inch.
"So he constantly hits it," his mother Carolyn says.
When you're a toddler, life is supposed to be about jumping off of couches -- not curling up, exhausted, in the corner of one.
"It just depends on the day," Mom notes.
Bo Macan loves his Kansas Jayhawks.
Tuesday was a good day. Bo watched his brother Johnny in a kickball tournament at Children's Miracle Network Hospital, grinning with every step.
"He got released from the hospital (Monday)," Carolyn explains. "We take it one day at a time."
You take the clouds and the silver linings. You take the blessings, even the mixed ones. Over the past year, Bo has been on five different antibiotics. Without the antibiotics, he risks an infection that could kill him. Because of the antibiotics, he's losing his functional hearing, day by day. If you're talking to him from behind, he won't always hear you.
"We had to pick and choose our battles," Carolyn says.
The path of Bo has rarely been a straight line, much less a fair one. Plant a flower, and two weeds pop up nearby to spoil the landscape.
They keep planting.
Bo Macan is one of the faces of the Sixth Annual Rock Chalk Roundball Classic, its pilot light and its soul. Kansas Jayhawk basketball players of the recent and distant past -- former skywalker-turned-Sacramento-King Ben McLemore chief among them -- will play a charity basketball game at Lawrence High School on Thursday night, with the proceeds going toward three local families. Former KU greats McLemore, Sherron Collins, Wayne Simien, Cole Aldrich, Todd Reesing and Danni Boatright get the headlines and top billing, but the real stars of the evening are Bo and two other pint-sized champions fighting big-league health scraps, Addison Whitenight and Maddox Parsons.
"You're very honored," Bo's father John says. "Sometimes, you (feel) you don't deserve something like that. So it's very humbling and overwhelming, I'll tell you that much."
The Classic is an especially cool deal for John, who played a small forward on the basketball team at Baker University -- "I'm a chucker, I just shot a lot," he says with a laugh -- in the late 1990s. And an even cooler one for the Macans' eldest son, Johnny, a Rock Chalk acolyte of the highest order.
"(Johnny) is more excited than anybody," Dad says. "I've taken him to some KU games; it's such a cool experience, going to the games. I raised him right."
Heck, Bo's even being fitted for red and blue hearing aids to mark the occasion.
"I think having older siblings helps," Mom says. Then she chuckles. "Because they're so good to him, even if he's not good to them."
Come watch Ben McLemore fly. Stay to watch Bo Macan soar.
Super Bo is a mess of tubes and hope right now, but mostly hope. The medical term for what's inside him is Immune Dysregulation Polyendocrinopathy Enteropathy X, or IPEX for short. A child with IPEX is missing a white blood cell that regulates the body's immune system, so the immune system eventually starts attacking the body itself. Bo's IPEX includes diabetes, chronic diarrhea, growth hormone deficiency, thyroid problems, seizures, chronic lung disease, to say nothing of the infections on his lungs, liver and in his bone marrow.
"(The doctor) told us, point-blank, what we're dealing with is so rare, it doesn't have a name," Carolyn says.
At the National Institute of Health, they've taken to calling it "Bo Syndrome."
To have a disease named after you is the ultimate backhanded legacy. To have a disease named after you as a toddler is almost cruel, one of fate's black-hearted jokes.
Carolyn keeps a detailed, emotive blog of the family's journey, which serves to update friends and loved ones, as well as offer a little therapeutic venting. At the end of last year, she recapped Bo's 2013 in terms that read like a macabre Christmas carol:
The chase for a cure has taken them to Cincinnati, Boston and Bethesda, Maryland. Mom estimates their personal mileage is up over the 27,000 mark, just over the past year or so. Airfare to Boston was $1,850 alone.
They fly anyway.
Home and away, Bo does Bo things, 4-year-old things, knowing the pain but oblivious to the stakes. Cars. LEGOs. Transformers. Carolyn, meanwhile, has become an expert on medical minutiae, a walking Wikipedia, trying to catch every new curve thrown the family's way.
"Four years ago, I would never have known any of this," she says. "But, obviously, as a parent, you think, 'I have to be able to know what I'm dealing with. And when I walk into that room, I have to be an advocate for that child.'"
Last fall, Bo and his family became one of the local faces of the federal government shutdown, when it meant a blood test at the NIH had to be put off. When the tests finally did come back, the results were ... well, inconclusive. They went in expecting one result, and came back with another.
Bo spent his fourth birthday battling jaundice at the University of Kansas Medical Center. They found an infection in the port connected to his chest.
More flowers. More weeds.
"The guy who came in to do Bo's IV, I've seen him (many) times, I've had a million conversations with him," Carolyn says. "And in all in sincerity, he was like, 'How do you do it? Is it your faith? Your family?'
"I was like, 'I don't have a choice. If the roles were reversed, you would do the same thing, because this is your child.' You don't ever get used to it and it's never easy, but that is your life, that's what you become accustomed to. If I let this bother me, I wouldn't get out of bed in the morning."
She gets up anyway.
Bo is their wind, their rain, their rock, their enigma. Some days are sunshine; others, silence. Toddler joys are tripled; toddler tantrums are tenfold.
In the darkest hours, Carolyn drifts back to a song by Rascal Flatts, "I Won't Let Go," and takes its lyrics as a personal mantra, a rallying cry:
It hurts my heart
To see you cry
I know it's dark
This part of life
Oh it finds us all
And we're too small
To stop the rain
Oh but when it rains
I will stand by you
I will help you through
When you've done all you can do
And you can't cope
I will dry your eyes
I will fight your fight
I will hold you tight
"That's like my motto for Bo," Mom says. "Even my bigger kids, too. You stand by each other. You get through it."
It takes a village. Or two.
Carolyn's father-in-law, now retired, has been an absolute saint, especially where Bo is concerned. John's employer, Keywest Technology, gives him rope -- and time -- when he needs it; when Carolyn has to tend to Bo full-time, especially on those long hospital days, Dad effectively has to play the role of Mom as well, taking kids to school, picking up, practices, school events ...
"(It's) just Bo," Dad says. "You want to start feeling sorry for yourself and you just see him and the hell he's going through and you're just like, 'Well, what the hell do I have to be sorry for or complain about?'
"There's only two choices, right? Keep trucking or quit. And I've never been a quitter, so I can't give up now."
They're planning to fly back out to NIH in September. More blood work. More spinal taps. More planting. More hope.
A marrow drive was held last November. Neither of Bo's two older siblings are a perfect match, which is strange. Nor is Brooklynn, his twin sister, which is stranger. At this point, they're not even sure if new marrow is the answer -- or just the door that opens up another round of unknowns.
"The question is, whether the marrow transplant can fix his immune system problems," Carolyn says. "And that's our biggest problem right now. And until we know, genetically, what's causing it, we can't risk a transplant that may or may not (be the answer)."
Given a 20 percent mortality rate, how little they know about Bo's IPEX, "Bo Syndrome," the doctors have recommended that Macans hold off. At least, for now.
"But I think we're on the right path," Carolyn says. "We're 10 steps closer now than we were year ago. But right now, we're just maintaining."
You focus on the flowers. Bo will always be diabetic. He'll always have growth hormone deficiency. He'll always be small for his age.
And he'll always be the toughest damn kid, pound for pound, in the room.
"It's so gut-wrenching," John says. "You can't do anything that you want to do for them. But, yeah, he does really good. He does really good for all the hell he's had to go through."
So do they. So do they.
To read Carolyn Macan's blog or to be a part of Team "Super Bo," visit www.macanithappen.com or check out their Facebook page: www.facebook.com/macanithappen. For more information on the Rock Chalk Roundball Classic, visit www.facebook.com/rockchalkroundballclassic. As of early Thursday morning, tickets are still available for $7 via the 23rd Street Brewery in Lawrence, the AAA on Wanamaker Road in Topeka, and at the door at Lawrence High School. Doors open at 5:30 p.m.; tip is scheduled for 7.
You can follow Sean Keeler on Twitter at @SeanKeeler or email him at seanmkeeler@gmail.com.
