A precious life: ‘Baby Stephen’ now a CHS grad

It was one of those days in the town of Canton that sticks in the memory: Sensing a mother’s desperation, hundreds turned out at the old Canton High School cafeteria to see if their bone marrow was a match for baby Stephen Cahillane, who had been born with a rare blood disorder and was in serious need of a transplant.

Back then, the test required a sample of blood, and still people turned out in droves. One guy even came straight from the hospital, where his wife had just given birth to a little girl.

The outpouring of support meant the world to Stephen’s mother, Nancy Cahillane, who at the time had serious doubts as to whether her son was going to survive to see his first birthday.

“I didn’t think Steve was going to make it,” admitted Nancy in a recent interview. “I never thought that I would be that blessed.”

And yet here it is, 17 years later, and the once sick baby who captured the hearts of so many in this town is now a healthy and happy young man with a full life ahead of him. Tonight, he will mark another milestone when he walks across the stage as a member of the Canton High School graduating class of 2011.

For his mother, also a CHS graduate, words cannot express what this moment will mean to her — not after all of those hospital stays and sleepless nights she endured when Stephen was younger.

The disorder, known as Wiskott-Aldrich syndrome, causes the body to destroy its own platelets via the spleen, resulting in a host of complications. It is classified as an X-linked recessive disease, which means the mother is typically the carrier and it becomes active in male children only.

The overall rate of incidence is one in every 250,000 male births, but in Nancy’s case, both of her sons were born with the disorder. Her oldest son, Brian, born in 1981, had his spleen removed and then had a successful bone marrow transplant at the age of 2.

But while Brian “looked much sicker,” according to his mother, Stephen was “so much sicker on the inside.”

At 3 months old he had his spleen removed, and a few months later his family began the search for a bone marrow donor, which included the community drive at CHS in late May. Eventually, the bone marrow registry turned up a match — an unidentified man from Racine, Wisconsin whom the Cahillanes would later meet — and Stephen went in to receive his transplant on August 26, 1994, just four days after his first birthday.

Stephen Cahillane, age 1, at Children's Hospital

As Stephen explained in his college essay, “The transplant was an unbelievable success, and I am now living a normal teen life and am considered cured.”

Of course, his health at the time was a lot more tenuous, and he remained in the hospital for months after receiving the transplant. He also had to undergo full-body radiation that was “equal to 140,000 chest x-rays.”

Without question the most noticeable effect of this course of treatment was that it stunted Stephen’s growth. By middle school he was one of the shortest students in his class, and there was a period during those tumultuous adolescent years when being short really bothered him.

Looking back now, Stephen admits that he probably could have avoided a lot of the teasing had he informed his classmates of his medical condition. Instead, only a handful of his closest friends had any idea until he finally opened up about it in high school.

“I never made it a big deal,” he said, without offering much of an explanation. “I’ve always kept to myself about it.”

Today, Stephen is much more comfortable discussing his battle with Wiskott-Aldrich — to the point that he recently agreed to be featured in a student-produced documentary that went on to win first prize at the 2011 Student Television Network Convention in Orlando, Florida.

He even made it the theme of his college essay, which he opened with the simple yet provocative question: “Have you ever wondered how precious life truly is?”

He went on to explain his frightening ordeal and how his fate had been sealed before he was even born. “My situation of near-death … made me realize how truly precious life is,” he writes, “and I am happy to be alive and able to write about it.”

At the same time, Stephen said he rarely spends time thinking about his past illness, and while he still takes medication and still goes for semi-regular blood tests, he is not overly health conscious.

He did eventually have to give up sports — including both football and lacrosse — although he probably should have done so years earlier after sustaining a number of major concussions.

Stephen (center) at the 2010 STN Convention in Los Angeles

The real challenge, his mother said, was getting him off the field. But he ultimately decided to call it quits and has since discovered a new passion: filmmaking.

After learning a few pointers from CHS teacher Ed McDonough in his freshman year, Stephen dove headfirst into the TV production program and will graduate having taken every film-related course the school has to offer. He also attended STN conferences in both Los Angeles and Orlando and was named the 2011 recipient of the STN Convention CNN Scholarship.

Stephen said the first STN conference is what “sealed the deal” on his choice for a career in film, and the most recent trip was a “transformational experience.”

He plans to attend Dean College in Franklin for two years and then transfer to Emerson College to finish out his bachelor’s degree.

As he wrote in his college essay, “I strongly believe I can and will achieve my dreams in the film industry and will do whatever it takes to reach those dreams.”

In the meantime, he said he is “just trying to live life” and enjoy the present, although he will certainly not forget the past four years at Canton High School, which he admitted was a “lot of fun.”

“It still hasn’t sunk in yet that I’m done with high school,” he said.

As for his mother, she, too, cannot believe how quickly the years have flown by, nor can those who she runs into around town who remember pitching in to help baby Stephen find a donor match.

Then again, there are some things that neither mother nor son is willing to take for granted — including the fact that Stephen, at 17 years old, has made it to this next chapter in his life.

“I’m just grateful that I’m healthy and I’m living,” said Stephen.

“And I love it when he realizes that,” said his mom.

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Posted by Jay Turner on Jun 8 2011. Filed under Features. Both comments and pings are currently closed.