Sick Greenfield teen takes trip to London
Sick Greenfield teen takes trip to London
Jul. 06, 2013
GREENFIELD, Mass. (AP) — Fifteen-year-old Cameron Bluh-Derricotte was living the "normal" life of a teenage girl when on May 27, 2011 her world was turned upside down.
She had just returned home from her eighth-grade trip when she spiked a high fever of 103 degrees, and it kept rising.
"The symptoms actually started while I was away on the trip," said Cameron, who lives with her parents, Becky Bluh and Tony Derricotte, in Greenfield. "My nose bothered me, I had a cough and felt like I had a cold, and my hip joint was killing me."
Her parents took her to the local hospital.
"Her gums were purple and gushing blood," said her father. "She started bleeding from every orifice."
She was also having a difficult time breathing and local emergency room doctors started to worry, because they couldn't figure out what was wrong with her.
"They rushed her by ambulance to Baystate Medical Center in Springfield," said Bluh. "They put her in ICU. She was bleeding out of her eyes."
Bluh and Derricotte, who are married, said doctors worked around the clock to diagnose their daughter.
"They couldn't treat her, because they didn't know what to treat her for, or how," said Bluh. "It was so scary."
Their daughter, who lay in a hospital bed in critical condition, was given a lung biopsy and put on life support, because it had gotten that bad and she could no longer breathe on her own.
"Our friends and family were bringing meals to the hospital for us," said Bluh. "For days, we never left her side."
Over the past two years, Cameron has been in and out of the hospital, spending almost more time in than out.
She suffers with Wegener's granulomatosis, an incurable form of vasculitis (inflammation of the blood vessels), which typically attacks older men. One of the many autoimmune diseases, it can attack small and medium blood vessels in different organs and be fatal.
"I was just about to turn 14 when this happened," said Cameron. "I didn't know how bad it was at the time. I thought I was just really sick and that I'd be able to go to Camp Howe a month later."
But that didn't happen.
Not only did Cameron never make it to camp that year, she never made it to school that fall to start her freshman year.
Instead, she went through rounds and rounds of chemotherapy and steroid treatments, which changed her entire look and caused her to gain 70 pounds and lose her long, dark, curly hair.
"She was on megadoses of prednisone," said her mother. "She'd have multiple infusions of chemo."
Two months into her treatments, Cameron stopped responding to chemo and immediately had what she calls a "flare."
"The lesions on my lungs started coming back," she said. "That wasn't good."
By then, her parents were taking her to Boston Children's Hospital, where a team of doctors had been taking care of her.
Last year, Cameron and her parents were encouraged by her doctors to apply to Make-A-Wish Foundation and were approved within just a few weeks.
Cameron gave Make-A-Wish a list of the three top places she'd like to visit.
Necker Island, which is in the Atlantic Ocean, was her first choice, but it was too far from a hospital that could treat her if she had a bad flare while there.
London was her second choice and Atlantis her third choice.
Make-A-Wish said it would send Cameron, her family and a friend to London.
"Because I don't have a sibling that's a minor (Cameron has a 30-year-old half brother, Elliot), I get to bring one of my best friends, Maitreya," said Cameron. "My parents are going, too."
After they leave London, Cameron's parents are going to take her to Paris, France, for a couple of days, and then to Portugal for another week. The cost for Paris and Portugal will have to come out of her parents' pockets.
Make-A-Wish will send a limousine to their home, which will take them to Bradley International Airport in Connecticut and will pick them back up at the airport and take them home when they return.
"We have to seize every moment at this point," Bluh said.
She said the hardest part about taking a trip is coordinating all of Cameron's medications.
Cameron disagreed and said, "it's the packing."
At one point, Cameron was taking 35 pills a day. That has been reduced to a dozen for now, anyway. Her parents hope someday she'll have to take even less.
"When I first started taking them, I couldn't swallow pills," said Cameron. "I can now."
Cameron also has steroid-induced diabetes, so she has to check her sugar levels and take insulin daily.
In September 2012, she ended up with a staph infection in her lungs and almost died. She had to be resuscitated during that visit to the hospital, said Bluh.
"We've been in a real state over the past two years," said her mother. "We still are, to some extent. We never know when she'll have a flare. We never know how bad it will be. She could have one in London. We just don't know."
"Our life has been all about worry over the past two years," said her father.
Both Bluh, who is a social worker, and Derricotte, who is a music teacher, had to leave their jobs. Derricotte is back to work, giving private music lessons, and Bluh is still on leave.
"It has been a struggle," said Bluh. "But we've been able to be with her through all of this and we wouldn't change that at all."
Cameron, who attends the Academy at Charlemont, went back to school this past year, but had to go back as a freshman, instead of a sophomore, like all of her friends.
"It's amazing to me that they are all starting to plan for college," said Cameron. "I'm not doing that, because I'll just be going into my second year of high school next fall. I'm not ready to start thinking about college."
"She's really brave," said Bluh. "She's had to endure a major body change, losing her hair and having to wear a wig, and just being really sick all the time. She has an incredible tolerance for pain."
Even though she's lost half of the capacity in her lungs, said her father, Cameron continues to do one of her favorite activities: sing.
"She's really, really good," he said with pride.
Cameron said the whole experience has made her grateful for everything.
"I have hair again," she said. "And it opened my eyes to see how some kids have it even tougher than I have it."
Cameron said she doesn't take anything for granted anymore — and neither do her parents.
"She's so precious," said Bluh. "She's the only grandchild and niece, so she's pretty special to all of us."
Cameron is the niece of former Recorder photographer Geoff Bluh and granddaughter of former longtime Greenfield Community College professor George Bluh.
"It has also helped us connect with a lot of other people going through similar times," said Bluh. "We know people throughout the world now, and we have something in common with them."
"There are a lot of incredible people out there," said Derricotte. "This is an incurable disease, so we don't know how it is going to play out, but we know we have lots of support."
In the meantime, Cameron's mother and father said they will take their daughter's lead and keep their spirits high and their attitudes positive.
"She never whines or complains," said Bluh. "We are so indebted to her for teaching us the lessons she has and for showing us how to be strong and have grace. She is a true inspiration and deserves this trip."
Cameron and her parents said the best they can hope for, at this point, is that she goes into remission.
"I also want to help get the word out there about this disease," said Cameron. "It used to be thought of as a male adult disease, but there are kids getting it (even though it is a rare disease). I want to help others, somehow."
She said she has been able to help some of her peers just by talking with them online.
"There was one 13-year-old girl who was bleeding from her belly button and the doctors in Boston couldn't figure out why," said Cameron.
Bluh said the doctors realized they had seen it with Cameron and tested the girl for Wegener's, which ended up being their diagnosis.