When John Henkels started to write his book, it was going to tell the story of how his baby boy, Sammy, beat the odds and went on to live a full life.
"It was going to be about the miraculous recovery this wonderful kid made from this terrible disease," Henkels recalls.
At 16 months, Sammy succumbed to a rare disorder of the immune system.
Because Henkels and his wife, Suzanne, were able to take the lessons their son's illness had taught them and -- finally -- find their way back to a life of joy.
"We learned about what I call 'extravagant love,' and how you can spread it around in bits and pieces," Henkels says. "That's really Sammy's ultimate mission."
The Roller Coaster Begins
When they were first married, John and Suzanne's hopes to start a family took one bad turn after the next -- fertility treatments, a miscarriage.
Finally, in 1996 they adopted 7-month-old Zach from a Russian orphanage and life was good. It got even better when Suzanne became pregnant and, in 1998, delivered twins -- Jacob and Samuel.
"They were perfect in every way," John says. "Life was crazy with three young boys, but wonderful crazy."
He remembers the day the twins were baptized as one of the happiest of his life. But the roller coaster they were riding was cresting a hill.
"Just a few weeks later we were at the ICU at Rainbow (Babies and Children's Hospital)," he says.
At first, doctors thought Sammy must have contracted a virus. He spent a week in the hospital and went home, seemingly good as new.
A few months later, he was sick again, and this time they would learn his devastating diagnosis -- Sammy had hemophagocytic lymphohistiocytosis, called HLH, a rare but potentially fatal disease of overactive infection-fighting cells called histiocytes.
He needed chemotherapy and a bone marrow transplant. The Henkels researched the best hospitals for treating the disease and settled on a medical center in Cincinnati.
They went in with hope, but Sammy suffered extreme complications from the procedure, including being unable to eat or drink.
John remembers how furiously the tiny boy would go after a bottle of frozen Pedialyte, trying despertely to get a few drops to quench his thirst.
"It was just dreadful to bear," he says quietly.
The Henkels literally lived at the hospital for eight months, separated from Zach and Jacob, their own lives on hold while Sammy fought for his.
When they finally went home, it was with empty hearts and empty arms.
The Road Back
In the book, John writes very candidly about the pain and the grief, about how losing a child affects a relationship.
"I bring the reader to the lowest of the low," he says. "I talk about how we pulled our marriage off the edge of the cliff."
In the years since Sammy died, John kept working on the book, revising it as their lives -- and pain -- evolved.
Amazingly, it was those months in the pediatric cancer unit that ended up shaping the family's future happiness.
"It's a ghastly place, but one of the most beautiful places on earth," he says. "There's no hate there, no bias."
What there is, he discovered, is "extravagant love" -- and once you recognize that, you can use it to heal.
"We have a huge hole in our hearts, and we miss Sammy every day," Henkels says. "But we have learned to live a life of joy."
He remembers the day a few years ago when Suzanne made a conscious decision to be happy again. She announced she was going to become more social, find new friends -- and then she did it.
"She was selecting happiness," John says.
Meri Armour, president and CEO of Le Bonheur Children's Medical Center, was moved by the story.
"I was inspired at the faith John describes — it touched my heart in a way I always want to remember," Armour said.
Carolina Fernandez, author of Rocket Mom!, said everyone should embrace the book's message.
"It is the most important message of all: the message of extravagant love," she said.
It took Henkels years to lose his anger, but once he did, he was able to use the lessons he learned from Sammy, remember the love from the other sick kids, and move on.
"I followed Sammy's lead," he says, "and chose to be happy."