Charlie Carey began fighting for his life just eight months after his birth.
In the beginning, he seemingly had the normal array of infant illnesses. Then, everything changed. His trips to the pediatrician came closer and closer together, seven in a matter of weeks.
His mother, Deirdre Carey, was told not to worry, that everything seemed normal. But each reassurance was less certain than the last.
"He was a great baby, he slept through the night, but something just wasn't sitting right with me." Carey said yesterday. "It was a mother's instinct."
Soon, Charlie was diagnosed with a rare and highly malignant form of cancer. His family was told that he was unlikely to live to see his first birthday.
Carey has recounted her son's illness and remarkable recovery in a new book called "Hope, Faith and Charlie." It took her five years to write.
She did it, she said, because she wanted to give hope to other families in comparable straits, knowing from experience that hope can sometimes be hard to come by.
Initially, doctors believed the baby was suffering from meningitis. After a CAT scan and an ultrasound - "his brain was hemorrhaging right there on the table - it was obvious that his condition was dire.
His life was saved at the Floating Hospital for Children, part of Tufts-New England Medical Center. There, he was diagnosed with choroidplexus carcinoma. According to his oncologist, Dr. Cindy Kretschmar, the disease, which attacks the lining of the brain, is extremely rare.
"One city might only see one case in a decade or two," Kretschmar explained to me. "When you find cases in the literature, most of the patients die.
"Usually with a brain cancer, the tumor grows and expands and impedes and infiltrates the nonmalignant part of the brain. It will squish everything that's normal in there. Patients then die from nonfunction of their brain."
His first doctors wanted to attack the problem with radiation, the standard therapy but one that Kretschmar rejected. She reasoned it would do so much damage to Charlie's healthy brain tissue that even if he survived he would be seriously impaired.
Instead, over the next 21 months, he endured three brain surgeries and several rounds of chemotherapy. Not only did he survive; he thrived. He is 8 now. He wears hearing aids in class and has a shunt to drain excess fluid from his brain.
"You couldn't pick him out of class," Kretschmar said proudly. "He runs around and is vivacious and plays with his brother and is a normal little boy."
His mother had promised that if her son survived she would find a way to try to help inspire the many other families who struggle with serious childhood diseases.
"I don't try to be religious with people, but I got on my knees and said I would do everything in my power to renew people's faith in hope and miracles," said Carey, who now lives in Franklin. "It's taken me five years to do so, but you don't promise God and renege."
She learned a lot about her herself watching her son fight for his life. "I was never a strong person," she said. "I cried at Kleenex commercials. But when you're in a position like this, you sink or swim. You find the inner strength within you."
Her book is self-published, having been rejected by four publishers. It's available at hopefaithandcharlie.com.
Charlie remembers virtually none of his ordeal. He has recently become aware that there is such a thing as cancer, and he has a child's inquisitiveness about it.
"He's aware that he was sick because he has to go back to the hospital for MRIs," Carey said. "We told him he had a boo-boo in his head that had to be removed and that there were certain medications only the hospital could give him."
He had one more question, though.
"He recently asked, 'Did I almost die?' He knows that cancer can kill you. We told him, "We prayed to God to keep you here with us. And he did."
Adrian Walker is a Globe columnist. He can be reached at walker@globe.com.
