Forget the bald head or the liquid nutrition strapped to their backs. Forget the IV and the sickbed. Forget any of the things that make you think the inner life of a child who has cancer must be unrelatable because the children in your own life are all well.
The kids Mark Lavoie saw at St. Jude Children’s Research Hospital the first time he visited several years ago with his Best Buy colleagues were happy and laughing and, well, he hates to use the word normal, but normal. Just like his own kids.
“They all smiled, they all had a good disposition about themselves, so it didn’t feel like you were in a hospital setting.”
Because they were so normal, he was normal, too. Just like a dad.
As great as this experience was for Mark, it was also terrifying because he realized: Any one of these children could be my child.
The truth of this came pounding on his front door.
“I didn’t want to scare him”
Mark replays certain conversations from 2020 in his head. Like the one he had on Sept. 18, 2020, with the ambulance driver on the way to the children’s hospital in Memphis. He’d been told by the doctor in the emergency room that his 12-year-old son Tyler had elevated white blood cell counts and needed more tests. “At the time, I had no idea what that meant,” said Mark – and how it would change all their lives.
Now he was sitting next to the ambulance driver. Tyler was being cared for in the back.
Within a few days, Tyler had gone from seeming fatigued to very sick. Spots had appeared on Tyler’s skin. His tongue had taken on a bluish tint. His back hurt so bad he could hardly stand up straight. It just wasn’t right.
“Did they tell you what was going on?” the ambulance driver asked him.
Not really, he told her, just the thing about the white blood cell counts.
He’ll never forget what she said next: “Well, they’re looking at possible leukemia.”
“You know, he’s kind of hard to show his feelings, and when he does show his feelings, it’s like a dam broke,” said his wife, Sharon.
As he relays the story of how the fear washed over him that day, there are long pauses.
Even in the rearview mirror of his life, this moment feels raw and imbued with terror. A short conversation made longer in memory by its import.
Objects in mirror are closer than they appear.
Tyler did have a type of cancer called acute myeloid leukemia. Before the night was over, he would become a patient at St. Jude.
And then Mark, who works six days a week as an assistant manager for Best Buy, who describes himself as analytical, whom his wife, Sharon, describes as being “a take-charge person…that has to know what’s going on around him,” snaps out of it.
He dams his emotions up, just like he did on Sept. 18.
His talk returns to its normal pace.
As hard as it was, he’s grateful to that ambulance driver for their conversation because it helped him be the kind of dad he wanted to be for his son – the strong kind.
“It’s what allowed me to kind of get my feelings in check because I didn’t want to scare him.”
Finding the right words
Mark knows something about how important it can be to project calm, no matter what. As an assistant manager for the third-party workforce that does complex installations for Geek Squad Best Buy, his territory includes 18 stores.
He provides installers with on-the-ground support and key troubleshooting, advising them on how to make sure each customer has a great experience.
When he talks about what most impresses him about St. Jude, it’s the cure of course, the competence of Tyler’s medical team, but also the way they had of talking to Tyler – at a time when Mark and Sharon’s words often failed them.
“They kind of explain that you have leukemia, what leukemia is, how we’re going to go about treating it, and everything, and it was just the way they presented it to the kids made a lot more sense than, ‘You have cancer,’” said Mark.
For a process guy, saying all the right things to Tyler felt like the height of professionalism.
He wouldn’t talk to anyone
“Don’t take it personal,” Sharon would tell the nurses and nutritionist at St. Jude when Tyler wouldn’t talk to them.
Tyler understood they needed to do their work to make him well. He would do what they said, but he would not speak.
“Tyler is Tyler,” Sharon said by way of explanation.
That is to say, Tyler had never been talkative outside of his close-knit group of family and a few friends.
He’s like Mark in this way, Sharon said. A straight shooter. Not really one to waste a lot of words or try to please people.
“He’s a little mix of the both of us really,” said Sharon. “He’s got the emotional side where he wants to be friends. Maybe he’ll be friendly and courteous on my part as far as the emotional part, you know. He loves children. He loves animals. You know, he’ll help with anything you ask him to.”
But he gets his dad’s side where he can care less if you don’t like him. …But he’s a good kid though.”
Mostly his parents spoke for him at St. Jude.
Besides, words often weren’t necessary because you could see how much he was hurting.
“It was miserable for him, not being able to eat without throwing up. Even if he drank something, he was throwing up.”
Tyler endured it all silently.
Would his parents have preferred that Tyler talked?
Was his medical team concerned that Tyler wouldn’t speak?
But maybe Tyler’s dogged silences at St. Jude were his way of taking control of a situation that sometimes seemed out of control.
‘Take the time you need’
Certain conversations from last year linger in Mark’s mind. He remembers people who said the right words at the right time. These are gratitude conversations.
Like with his leader at Best Buy when he found out Tyler had cancer.
“Take the time you need,” his manager, Norris Delatte, told Mark, “and use work only when you need it as a distraction.”
Norris knew all too well what Mark was going through.
Norris’ son had contracted a bacterial infection that resisted treatment, requiring hospital stays. The boy had to relearn basic milestones, taking physical therapy to learn how to walk again.
Norris’ son was undergoing treatment when Tyler became ill.
“Best Buy supported me during what my son was going through, which allows me to support you,” Norris told him.
For Mark, the future seemed uncertain, but this, at least, was a solid foundation of support. Norris helped him through the process of obtaining caregiver leave, a benefit offered through Best Buy. It gave Mark the ability to have a flexible schedule - to work when he could or take the necessary time off to care for his family.
And sometimes he wanted to work – it took his mind off things.
Tyler’s room connected to a parents’ suite, where Sharon and Mark could set up their computers and work as they took care of Tyler.
This all happened during COVID-19 when visits were limited to the patient and one family member.
“Every time I was there, I put my phone on speaker and just let them know, ‘My husband wants to listen in,’” said Sharon. “He’ll do the same for me when he was there.”
So Sharon and Mark shared many of the ups and downs of Tyler's treatment by speakerphone until one day it was all good news - Tyler was in remission and his treatment was done.
"I dearly appreciate St. Jude for who they are and what they do for these children," said Sharon. "They took care of everything. As far as: You hungry? Just go down to the cafeteria and get whatever you want. If we had to drive back and forth, they reimbursed the gas we used to drive up there. Like they said, you don’t see a bill. You see the bill, but you don’t actually have to pay the bill. … It was mind blowing."
Part of the flow again
A few months after Tyler celebrated the end of chemo, the family vacationed in Mexico, where Tyler rode on personal watercrafts and swam out into the sea.
The scar on his chest from his chemo port has all but disappeared.
He’s happy to be doing his own thing again. Enjoying food. Feeling the sunshine.
And blocking cancer from his mind.
He loves his STEM classes at school and aims to join the robotics team. Like most 14-year-old kids, he spends a lot of time playing video games. Sharon and Mark were gamers, too, before they got so busy with work and kids. Mostly, this family loves being together doing family stuff. Playing with the dogs, playing board games. Tyler just became an uncle.
“He doesn’t bring that up,” Sharon said. “He just chalks that all up to an experience of what happened in his life, and he’s moved on from it.”
Maybe one day he’ll want to talk about all of this.
But for now, he looks like every other boy on vacation with his parents.
You would never know.
He likes blending in, being part of the flow of life.