Indiana childhood cancer survivor finds 'recipe for life' in mom's St. Jude journal

EVANSVILLE, Indiana — Cancer survivor and Ph.D. student Adam Ferrari may be too busy to take your call right now. 

He might be studying.

Or he might be conversing with a lab mate that sparks an idea who leads to another idea that prompts a breakthrough.

Surely, he's engrossed in something.                   

But that’s OK because when a person has something important in front of them, it’s right to focus.

And Adam has something important in front of him: He’s trying to cure ovarian cancer.

It was eight years ago in Evansville, and Adam, then a college sophomore at the University of Southern Indiana, just had his mind blown.

He was reading the details of his chemotherapy treatment, the pages held within a dusty three-holed binder.

The notebook was one of several mementos from St. Jude Children’s Research Hospital his mom stashed in a bin in the attic of his childhood home, saved for all these years. 

Stacy Ferrari, a nurse, used that binder to create her own medical chart for her son — “because that was my trade, and that’s what I knew.” It’s where she kept Adam’s St. Jude treatment schedule and made her meticulous notations.

Adam could see that for the entirety of his 2 ½-year treatment for acute lymphoblastic leukemia, which began in 2000 when he was 7, she’d documented every chemo, the dosages, and the day-to-day effects it had on his blood counts. Her notebook included chemo information sheets, X-rays and vitals. And what she called the “recipe” of medications he would need during the time he spent back home.

She’d carried that thick binder — her vast investment of time and heart — around to every appointment, but for Adam as a child with cancer, the notebook had been invisible because of its ubiquity.

Older now and able to comprehend, he felt awestruck.

“This is the recipe for my life,” Adam remembered thinking as he poured over the notebook. “This is what gave me life.”

Ideas were sparking everywhere.

The irony: As a little boy, Adam didn’t want to know.

“When the doctors would speak, I had a tendency to throw the covers over my head out of being overwhelmed and being afraid,” he said.

But through his doctor’s steadfast kindness, silly jokes and even magic tricks, Adam warmed to him.

What he has, mostly, are flashes of memory:

The army of nurses that surrounded him when he arrived. When he and his parents came through the front door of St. Jude at 10:30 p.m. after a 5 ½-hour drive from Evansville in a borrowed truck, a phalanx of nurses surrounded them, guided them where they needed to go, measured his vitals and took his labs with competence, compassion and quick dispatch – “just an army of nurses waiting for me, ready to take on whatever I was bringing.”

He remembers the shine of a quarter his doctor pulled from behind his ear.

The bob of the balloon the woman in registration always gave him.

And the walls themselves.

“If you think of a hospital, you have a very clear image. But those murals on the walls made it feel nothing like a hospital, and so when I describe it, I realize I start with,  'St. Jude has these murals...' It was a fun place to be at. Because amongst everything going on, it needed to be.

“It’s really hard to describe feelings, but you know, St. Jude is built on hope, so that’s how you can describe the hospital. A place of hope.”

With murals.

When you do catch Adam, he’s apologetic and generous with his time.

“It’s kind of a funny story,” he tells you when you manage to reach him, how much that dusty notebook changed him.

“It was essentially a puzzle, and at that moment, I knew what I wanted to do with my life is to build one of these. To put the puzzle together for someone else.”

Today, Adam, 28, devotes his professional life to unlocking the mysteries of fatal ovarian cancer as a researcher and cancer biologist.

He works hard to keep his spot in the competitive Cancer Biology Ph.D. program at the University of Pennsylvania.

Before his Board exams this past spring, he disappeared into his studies.

“It’s been a hard month for him because you can only do so much, and then that crushing and crunching your study, trying to recall everything you can,” said Stacy. “The exams he and the other students took were pass/fail, and it was at that pivotal point where he was either going to be able to continue in the program or he would have to leave the program.”

But Adam has done difficult things before. He buckled down, ignored the outside world for a while and passed his Boards.

His grandmother had ovarian cancer at 58 and survived it. He wants to help other women like her.

Before St. Jude, in Evansville, Stacy had worked for years as a nurse in a family clinic. She had a co-worker there whose daughter had gotten chemo at St. Jude. Adam had spent a good deal of his childhood in the clinic when he was little, soaking in the rhythms of the office on the days when childcare fell through or there were snow delays from school. He would sit in the back room playing games as the nurses and doctor wandered in and out, and he enjoyed the office patter about medical things he didn’t quite understand yet.

What he’s always loved, he realizes, is the feeling of being part of a group working toward a common goal.

There’s something else here, too: Adam’s desire to belong. Because, in the beginning, St. Jude felt insurmountably difficult to him when he compared it with the doctor’s office back home, which had felt so familiar. Stacy may have already known St. Jude as a place that cured other Indiana kids, but to Adam, it felt foreign.

Things didn’t get better for him at St. Jude until he got to know the people.

The woman at registration brought a balloon for Adam each time he came to St. Jude, not just because it made the intake process easier, but because she loved him. And he loved her.

St. Jude makes room for that deep caring as part of what makes a child well.

It took time. It didn’t happen overnight, but he came to know St. Jude and everyone there, and now it’s a place, in a sense, he doesn’t want to leave.

His doctor who did the magic tricks was not only a kind clinician, but also a dogged researcher who wrote the treatment plan that saved Adam’s life.

And maybe his mom’s insights, the notes she kept in her notebook, had helped him do his work.

Stacy hoped if she followed the medical plan at St. Jude to a T at every stage, it could save his life and give him the best possible outcome, “so you do everything you can to make sure the care is on time, everything is done, nothing slips through the cracks.

“That was my job, to make sure Adam had the best care that he could, and I worked side by side with the providers at St. Jude, and they let me do that. They let me do my part to help.”

Collaboration, Adam realizes: That’s the way that knowledge builds. Not every experiment is a success, but as the famous Indiana historian Edward Eggleston once said: “Persistent people begin their success where others end in failure. Dr. Tim Ferguson back home in Indiana was also an important part of this team.”

You keep with it — and trust the power of the team.

“I think a successful day in the lab is when you bounce ideas off of each other, and you both excitedly ask questions and explore an area.

“So it’s not only the science giving you information to work with, but also the environment. I love to talk science, and so I like talking with my peers and my lab mates. It’s a great, great time.”

And it’s a spirit of collaboration he learned at St. Jude.

After Adam found the notebook, he started a conversation with his doctor at St. Jude about the treatment he received and the decisions that went into it and the science of it all.

Later, his doctor “mentioned that St. Jude was starting a Ph.D. program, and I kid you not, that was the first time I looked into a Ph.D. program and realized that these biomedical programs are out there.”

It was a eureka moment on par with finding the notebook: “I knew that I was going to do a Ph.D. instead (of medical school) and get deep into the research.”

His doctor wrote Adam’s letter of recommendation to Penn Med. They still talk, colleagues now, but maybe they always were.

It’s all there in that notebook.

She’s kept every I.D. bracelet he ever had, kept the crutches he used when the avascular necrosis from his chemo caused a fracture, and saved all the cards from the children at Corpus Christi School, where Adam went to elementary school in Evansville when he wasn’t too sick.

Adam has taken the notebook to Penn. He can sift through whatever he wants, Stacy says, and focus on whatever is most important to him. It’s his life, after all.

But, no matter how much time has passed, she can’t bear to toss any of it herself, so fully is her heart intertwined with these totems from a time in her life she worried she’d lose her little boy.

After Adam found the notebook, he brought it to his mom.

“Explain everything in this book to me,” he said. “I want to know everything."   

“What chemos St. Jude combined together was intriguing to him, and he wanted to know why,” said Stacy. He wanted to recall the science of what made him well.

And when Adam wants to know something, he wants to know it thoroughly. He gives it all his focus. You want that in a researcher.

So Stacy sat down with her oldest son, and they went through the notebook together.

Page by page, she shared the recipe of his life.