Leukemia survivor’s crew cheers launch of family-focused solution

Davis McKay, brother Grant and father BrianDavis McKay makes an impact. He might beg little brother Grant to pause Minecraft to meet a visitor. He might chatter as he makes a laundry basket his playground. And he just might drape his arm around your shoulder while he peruses photos of boys who haven’t faced the fear and pain he has.

St. Louis Children’s Hospital declared Davis, who turns 9 next month, free of leukemia not long ago.

That’s after four years of treatments, trips and—quite frankly—trauma.

Still, Davis smiles, shows you the now-tiny scar where his port used to be and grabs your heart.

Children like Davis and advocates like his parents, Brian and Courtney McKay of Champaign, are just some of the patients and families who will benefit from Carle Arrow Ambulance’s new space-themed specialty-care transport vehicle. Bedecked in stars and other bright-future images, the ambulance is a gift from Carle employees to the community that will also transport high-risk moms-to-be and babies from hospital to hospital for emergency care.

“We know Davis made waves everywhere he went,” Brian said, listing the doctors and nurses who got to know him well while he was sick.

“His demeanor, his attitude, it affected people, and it effected change.”

Carle employees, who work with patients like Davis, knew Carle could do more to help families like the McKays—something to make the hard times just a bit happier. That notion fueled the collective passion for making the specialty-care transport vehicle a reality.

In 2016, Carle’s Employee Giving Campaign, through Carle Center for Philanthropy, raised enough to purchase the vehicle, which is likely to serve more than 1,000 patients per year.

David McKay being loaded into ambulanceUsing the new vehicle, paramedics and EMTs, as well as a critical care nurse and respiratory therapists, will provide highly skilled medical care and a positive push toward brighter days, especially from communities outside east central Illinois as part of the Carle Rural Alliance for Exceptional Care.

“We had so many trips via ambulance to St. Louis, and it was never comfortable. Not only are you nervous and your child is not well, but it’s typically 1 in the morning after you’ve already been in the emergency room for five or six hours,” Brian said. 

“Of our whole experience, those three-hour trips via ambulance are my most miserable memories.”

The longer, taller, wider vehicle features captain’s chairs for adults, softer lighting, a blanket warmer, and a DVD player to make tough trips easier.

It will also carry twice as much oxygen, a ventilator, IV pumps and medications not standard on other ambulances.

“The team’s capabilities will be on full display through this ambulance,” said John Sollars, Arrow Ambulance operations manager. “We have leadership from the physician at the hospital through FaceTime, extra clinical expertise on board and the paramedics’ ability to help if the patient’s condition deteriorates.

“This means we will bring an advanced level of care to the region.”

David McKay with his portIt all started close to home for the McKays.

After an emergency C-section and 10 days in Carle’s Neonatal Intensive Care Unit (NICU), the McKays knew they’d face challenges raising a child with Down syndrome. They didn’t know three and a half years later the terrible pain nearly non-verbal Davis couldn’t describe but showed them regularly meant leukemia.

When he wasn’t crying and writhing through back-arching pain doctors couldn’t explain until his diagnosis, Davis was walking, learning his colors at preschool, brushing his teeth and receiving other at-home care. Severe cold symptoms and come-and-go high fevers finally led to the stark diagnosis.

And it led the parents to a 4-inch-thick binder that would guide them through Davis’s treatments.

“That plan of care gave us a level of confidence,” Brian said of the children’s hospital’s expertise.

The road map, though, didn’t prepare them for time in the Emergency Department and on the road. The health of children with leukemia and other serious conditions is so compromised they often face additional complications.

Those complications are sometimes life-threatening, and they are always terrifying.

“There were times when Davis was days away from death. He had pneumonia for the better part of a year,” Brian said, estimating they visited Carle’s Emergency Department more than 50 times when the children’s hospital said Davis’s condition was serious enough to do so.

More than a dozen hospital-to-hospital transports made them the kind of experts they never hoped to be.

And they vowed not to keep that knowledge to themselves.

“It’s our job to educate others who go through this,” he said. “We had so much help and support along the way. We want to make sure others have that, as well.”

So did Jaime Parkinson.

The Critical Care Unit coordinator who helped launch the new-vehicle effort envisions clearly how much it will impact families.

“When I think of this vehicle, I think of my daughter,” Parkinson said. “I can just picture if she were to ever need of care in this way, a kid-friendly space with all the staff and equipment needed would help make it a little less scary.

“I think that will mean a lot to the many children and parents we serve in this region.”

The McKay family -- Davis, Grant, Courtney and BrianIt means a lot to the McKays, who got a sneak peak of the specialty-care vehicle last week.

The impact of that part of the journey? Smiles and squeals. Tears and triumph.

And a few words from Davis’s mom for other families.

“You may be frightened but trying to stay strong and upbeat for your child. This will help,” Courtney Ballard McKay said. “Having the additional amenities will make such a difference as you do everything you can for your child.”