Beau's Battle: Darien High School senior's fight with cancer
Updated 1:26 pm, Friday, October 5, 2012
"I really don't know how to tell you this, but there is a 4-inch growth -- in your chest -- near your heart and lungs."
To many this diagnosis is an unimaginable fear. For 17-year-old Beau Taylor, it was a frightening reality that she was forced to face.
Taylor's journey began in late April when she started feeling a painful knot in her back. The Darien High School student blamed her back pain on scoliosis and muscle strain as the result of playing sports when she was younger. But the pain did not subside.
"It started hurting way worse," she said. "I started waking up in the middle of the night screaming at the top of my lungs."
Taylor's mother, Lisa Taylor, decided it was time to visit her pediatrician, hoping to end the pain, but the doctor insisted what she felt was nothing more than a knot, treatable with the use of alternating heat and ice compression. However, following one excruciating episode, Taylor went to the hospital, seeking some relief and a second opinion.
"My mom took me to the emergency room at Norwalk Hospital and the doctors gave me a chest X-ray, and the chest X-ray was clear."
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The doctors in the emergency room told Taylor the same thing that her pediatrician had told her. The pain she was feeling was muscle strain, a knot in her back. Use heat and cold compress to reduce the tension, she was told.
While that might have been it for some people, Taylor refused to relent.
"I went back to my pediatrician and said, `you're wrong; this isn't a knot in my back, I feel like something is off.'"
Taylor convinced her doctor to send her to Norwalk radiology for a CAT scan. On her way home from the radiology clinic her phone rang and it was her pediatrician. The pediatrician told Taylor she needed to get to the practice as soon as possible but refused to elaborate.
That's when it happened -- that's when everything changed.
"`I really don't know how to tell you this,' the pediatrician said, `but there is a 4-inch growth -- in your chest-- near your heart and lungs.' She didn't say tumor ... she didn't say `cancer' so I really wasn't sure what to think. My mind was going in a million different directions," Taylor explained.
The doctor said Taylor needed to get to Yale-New Haven Hospital immediately; her pediatrician had already called a specialist who would meet her once she arrived.
"I couldn't even go home to shower or pack -- do anything -- but just race up to Yale," she said.
Within a couple of days of checking into Yale-New Haven, Taylor was scheduled for a biopsy on the growth that was discovered during her CAT scan. Waking up from the biopsy was "pretty terrible," she said. The specialist and doctors found excess fluid in Taylor's chest, and needed to insert a chest tube in between her ribs.
Taylor woke up from the surgery without any pain medication and a tube still lodged in her chest. She could not move, or even lift her head and struggled to breathe properly.
"It was very scary. There were tons of tubes coming out of my arms, my wrists, my hands, and I had to be put on oxygen because the tumor was pushing on my lungs, making it uncomfortable to breathe."
After 10 traumatic days of being in the hospital without any explanation of what was wrong with her, other than growth, Taylor received a diagnosis on May 4, 2012: Mediastinal large B-cell lymphoma. The doctors at Yale-New Haven told her she was lucky -- the cancerous growth was "very treatable."
Mediastinal large B-cell lymphoma is an extremely rare type of large B-cell lymphoma. The cancer starts in the thymus gland. The thymus gland is an organ vital to the body's immune system located in the chest, behind the breastbone and between the lungs. The thymus is most important during childhood and young adulthood because of the role it plays in the production of lymphocytes, white blood cells that fight infection.
Incidentally, this type of lymphoma affects younger people, age 25 to 40, and is more common for women.
The prognosis? Chemotherapy for a period of between six and 12 months. That's when Taylor asked the doctors the big question she had on her mind the moment they said the word chemo: "Would I lose my hair?"
"Being someone with long blonde hair down to my waist, when they (her doctors) told me yes ... I had a mini-breakdown and started to cry," Taylor said.
Still though, in the beginning she was in such a shock she did not have time to truly express her full emotions of the situation.
"I can handle this, I'll be fine, really I will," Taylor convinced herself, "It wasn't until down the road that I got really emotional about it."
"Sometimes I'm glad it was me and not someone in my family or someone I know because ... I can handle having it ... I handled it. But I don't think I could handle seeing someone I love go through that, because I know -- I know what its like, and how painful it is and I can't ... I don't even want to think about seeing someone else go through that," Taylor said.
The chemo treatments started the same day she was diagnosed.
Taylor was lucky that after every chemo treatment her blood work indicated that her white blood cells were coming back very quickly -- usually chemo causes a person's white blood cell count to drop dramatically.
"Which was great because it meant that I was healthy but also wasn't so great because that meant they could slam me with higher doses of chemo. I was given five different chemo drugs within a six-day stay, and I would have treatments every two to three weeks," Taylor said.
From May to mid-August, she continued inpatient IV chemo treatment every three weeks in five-day in the pediatric oncology unit of the Smilow Cancer hospital at Yale-New Haven. The doctors originally told her treatment would last a period of six to 12 months, but after seven weeks of intensive treatment, they called her with unexpected news.
"They said, `the scan is clear, we don't see a tumor anymore.' I just freaked out. I felt like Superwoman!" she said.
And rightfully so: Taylor surprised her doctors by tolerating the heavy chemotherapy treatment and in a seven-week period her body fought off a 4-inch tumor -- a period of time equivalent to summer vacation for that of her peer group at Darien High School. "It was so amazing to hear," she said.
While Taylor's personal battle with cancer came to end in August, her fight against cancer as a whole has not.
Her father, Hap Taylor, participated in the Hackers for Hope golf tournament Sept. 21, to raise money for cancer research.
Since 1988 Hackers for Hope has raised money for cancer research, primarily through an annual golfing event held in Darien. The organization was founded by friends Alfred E. Smith, IV (Al) and Edward D. Brown (Tim). Smith and Brown were diagnosed with cancer in the spring of 1986 and underwent treatments of chemotherapy and radiation. During their medical leaves from work, both Smith and Brown, members of Wee Burn Country Club in Darien spent the summer on the golf course. Golf provided an outlet for physical activity to combat the feeling of weakness both Smith and Brown shared from their treatment. In 1988, Smith and Brown formed the first Hackers for Hope tournament, raising $47,000 dollars for the American Cancer Society. Since then Hackers for Hope's mission has been to provide funding for local cancer research and treatment centers in the Connecticut and New York areas. In total, Hackers for Hope has successfully raised and donated more than $10 million.
"My dad has played in the tournament for a couple years, but I think this year it really hit home," Taylor said.
Just weeks before she was diagnosed her grandfather, on her father's side, died from complications do to lymphoma.
"My dad and I are very close, I couldn't have gotten through it without him. He was with me everyday in the hospital," she said.
When Taylor was going through treatment, her dad surprised her with something special. A permanent reminder of Taylor's strength, a tattoo.
"I didn't think it was real!" she said. When she went to visit her Dad one day, she saw the green cancer ribbon -- the color designated to lymphoma is green -- and Taylor's name emblazoned on his arm.
"That's fake!" Taylor said as she tried rubbing it off his arm.
"It took my dad five minutes to convince me that it was real. I think it is so cool," she said.
"I want to try and help keep people aware of the disease. What it takes to cure it and make a patient's life more comfortable" Hap Taylor, said when explaining why he got the tattoo.
"I knew Beau would appreciate it and I don't want to forget what she went through and that she's not out of the woods yet!"
Now that a member of their family has died from complications due to lymphoma and Taylor has fought off a disease similar to that of her grandfather, both she and her dad more than ever want to make a difference.
"I love how Hackers for Hope is donating to a hospital," Taylor said.
This year the money raised at the Hackers for Hope event will benefit Memorial Sloane-Kettering Cancer Treatment Center in New York. Taylor believes that rather than donating to a specific organization -- rather a specific type of cancer donating to a specific treatment center -- is more beneficial.
"After having cancer, I cannot imagine trying to pick one organization over the other, having to choose donating to leukemia instead of breast cancer or vice versa. Instead of donating to an organization -- to a name -- donate to a hospital, because making sure patients are getting the best treatment is so important."
Along with her continued effort to raise awareness and funds for cancer, Taylor also wants to share her message with the Darien community.
"I want to thank a lot of people, without the support of friends and family I don't think I could have gotten through it everyone was so generous and nice. I also want to say, `Please if you are doing anything dangerous to yourself that could cause a disease or could cause cancer please stop. I'm telling you it's not worth it,'" she said.
Taylor is looking forward to her senior year at Darien High School and from her experience has gained a new outlook on life.
"From now on if I want something I'm going to get it. There's such random things that just pop into my head and I'm like `I'm gonna do that.' I was barely done with chemo and I remember telling my mom, `I'm gonna go rock climbing one day.' I want to go horseback riding on an island; I want to do so many random things, you know? Now I'm actually going to do it."
She's also looking forward to her last year at DHS.
"Because we are seniors I think we should all have the greatest year ever," she said. "Then go to college and just study what you love and figure out what to do from there."
Taylor's close friend, Kaitlyn Marino, knows how difficult Taylor's battle was.
"She is one of the most beautiful people I know and one of my best friends. I love her and am so proud of everything she has overcome," Marino said.
"That's honestly so great to hear, because I really don't feel that way at all. I feel like a normal person and that this was just a blip on the screen," Taylor said.
Taylor's strength, bravery, and determination are all characteristics one cannot help but admire. Taylor is a "superwoman" and an inspiration to the Darien community and beyond.
To donate to the Hackers for Hope: http://www.hackersforhope.org
Mac McDonough is a freelance writer.