- Associated Press - Sunday, December 6, 2015

ASHFORD, Conn. (AP) - The lodge-style dining hall at The Hole in the Wall Gang Camp in Ashford can be a rousing place.

Colorful banners cover the rounded, cathedral-like walls that encircle those who gather there to sing, dance and cheer on children battling cancer and other serious illnesses.

“That’s where a lot of the magic happens,” Amanda Garbatini, a former camper, camp counselor and now volunteer coordinator for The Hole in The Wall Gang Camp, said. “That’s where some of the kids open up about their diagnosis for the first time during camp. There’s something really special about that place.”

It’s been 17 years since Garbatini first looked to the camp for friendship, comfort and hope. Today, she goes there with her own hugs and smiles for those seeking ways to cope with the devastating news that cancer has come into their life.

Garbatini, 29, has heard that crushing news eight times since she was 11.

Eight times. Three times before she turned 18.

Five different cancers, and three recurrences, have ravaged her petite body, taking part of her leg, parts of her lung and ribs, her hair and her breasts.

“There were many ‘why me?’ moments and times of weakness,” she said. “At 11, it’s hard to comprehend a lot of things, let alone how much pain you’re in. I had been 96 pounds, went down to 70 pounds. I was this emaciated little girl.”

Yet, through it all, Garbatini has managed to slog through the rounds of her cancer bouts with an attitude that today moves her to compete in marathons, ski and go rock climbing, an attitude some describe as infectious to the ones she touches through her work with The Hole in the Wall Gang Camp.

Garbatini’s presence at the Ashford camp is a sign to those with cancer that there is indeed a brighter tomorrow, Waterbury resident Sue Dunn said during a recent interview there. Garbatini gave Dunn’s teenage son, Trent, that hope as he battled Burkitt’s lymphoma.

“She is very inspirational,” Dunn said, “and she is so incredibly upbeat and positive.”

Now in remission, Trent is a senior year in high school, and with the help of Garbatini has given inspirational speeches at fundraisers for the camp and encouraged other children with cancer to stay positive.

“It’s been really good to have someone with me who’s been through something similar,” Trent said. “It totally helps that she’s also had a life-threatening illness. She’s the one who really helped me put my thoughts about all of this into words.”

But talking about cancer wasn’t always so easy for Garbatini.

At one time, she couldn’t even say the word.

It was when she was 11, the age when cancer first came into her life. While putting her shoes on for softball practice in the spring of 1998, Garbatini discovered a large lump in her calf.

“I remember her saying, ‘Mom, what’s this bump on my leg?’” her mother, Lace Garbatini, recalled.

The Garbatinis didn’t wait for a doctor’s appointment later in the week. They took their daughter to the hospital that day where local emergency room doctors said they thought she may have bumped her leg. But when she followed up at the pediatrician’s office, she was referred immediately to Yale-New Haven Hospital for a biopsy of a tumor.

The biopsy there showed that the tumor was benign. But the tumor grew quickly, so doctors went into her leg again for another biopsy. This time, the news was different. Part of the tumor was benign. Another part was malignant.

Garbatini’s recollections of her earliest days with cancer are foggy. She doesn’t recall a definitive moment at that time when she was told she actually had cancer.

“I can name the names of my nurses at the hospital and the names of the medicines I was taking but, honestly, for some reason, I don’t remember that initial ‘you-have-cancer’ discussion,” she said. “Maybe it was that traumatic for me that it’s blocked from my mind.”

Instead, she remembers a day of fun with her father at Yale Field, as father and daughter watched a New Haven Ravens minor league baseball game.

“And then I went in for treatment,” she said.

But she does remember the pain and other frightening signs that her life had been upended.

After waking from surgery, she felt a bump protruding from her chest, right above her heart. She said she was confused, wondering what this uncomfortable thing was tucked inside her body. She later learned it was a port, a medical device doctors implanted in her so she could receive chemotherapy treatment.

“At that point, I knew,” she said.

Back at home, more signs that she had cancer appeared. When she showered, large clumps of her hair would fall out. She was fatigued and could hardly eat. Her life became a dizzying whirlwind of medication, doctors’ appointments and visits to hospitals close to home and out-of-state, like MassGeneral Hospital for Children in Boston, Johns Hopkins Children’s Center in Baltimore and Memorial Sloan Kettering Cancer Center in New York, a daily life far different than the one she was leading as an active scholar athlete in Cheshire.

“We were all just a mess, including Amanda,” Lace Garbatini said. “Now her days were spent dealing with surgery, everything was painful, she had nausea from the anesthesia and the chemo made her sick as a dog. It was just unbelievable how sick she was. She had to be carried to the bathroom, she lost weight, lost her hair, missed school. It was just a nightmare.”

One day during treatment, a social worker approached the family with an idea.

“She said, ‘I have something to tell you about that might cheer you up,” Lace Garbatini said. The worker talked about a free, life-changing camp on a beautiful site with a 44-acre lake north of Hartford for children with cancer and other illnesses. There, she said, they can safely play, dance, sing songs and bond with other children and families dealing with illnesses.

Lace Garbatini initially was concerned about sending her ill child to a camp but the social worker assured her that there were plenty of nurses and doctors there to help.

Still numb from the diagnosis and searching for answers in all directions, Garbatini and her parents took the social worker’s advice, and soon she would have her first experience at The Hole in the Wall Gang Camp. Opened in 1988 by its founder, actor Paul Newman, the camp holds summer sessions and year-round programs at children’s hospitals for more than 25,000 seriously ill children and their families.

The camp sounded like a much-needed respite for Garbatini, her parents thought. But could that week really have such an impact on their daughter after she had been through so much in just three short months?

The counselors would have their work cut out for them.

A 1998 promotional video made by The Hole in the Wall Gang Camp of an interview with Garbatini and her parents captures the uncertainty and sadness of the time. Garbatini’s father, Neil, tells the interviewer, “She would say things like she wanted to die. She just wanted to let the cancer spread.”

In the video, a frail Garbatini walks slowly down a hospital hallway toward a room with a CAT scan machine. Her arms are folded and wisps of her blonde hair poke out from a large black hat she has on her head.

“Life is unfair. People should remain healthy, live long healthy lives. But that’s not the way life is,” Garbatini tells the interviewer.

“They took like a big chunk of the tumor out, and they found out, that’s when they found out it was …” Garbatini says before taking a deep breath. “Cancer,” she nearly whispers. “It’s pretty scary going through all of this.”

Today, Garbatini still remembers that moment when the interviewer asked her about the diagnosis.

“I couldn’t say the word cancer in the video. It took me a while,” Garbatini said. “I remember him sitting across from me and just waiting for me to say the word, not giving me a break, looking at me intently and waiting for me to say it. And I almost say it, but it’s just a breath, not actually speaking it, just a breath.”

“It was still pretty new and fresh at that point,” she said. “Now, it’s a constant part of my life. I’m very used to talking about it and I am happy to talk to people about it and to help people in any way I can. People will have me sometimes talk to their son or daughter or friend that’s going through something because I’ve been there.”

One of the hardest parts, she said, was the feeling of being alone. “And if you don’t have something like camp, it’s even harder,” she said.

Garbatini said she always recommends that young people with cancer attend the camp. The girl she was at the beginning of the camp video is not the same girl viewers see by the end. Then, Garbatini is shown singing songs by a campfire, dancing and smiling as she is lifted up in a colorful hot-air balloon.

“I am so much happier at the end,” Garbatini said, adding that she recently watched the video again after many years. “You can just see the light back in my eyes and how happy I was. There’s color in my cheeks.”

At the time, Garbatini told the interviewer, “When I came here my blood count was very, very low and the second day it shot up. Being with other kids who were going through what I was going through was comforting. I’ll think back on all of the great times we had. It was the best time I ever had.”

What Garbatini didn’t know at 11 is that she would someday return as a camper, then as a counselor and eventually an employee. It would become a major part of her life.

And she would need to hold on to those summer camp memories to help her though the upcoming fall and winter as she struggled with the aggressive cancer that hit her first - rhabdomyosarcoma, a rare tumor of the muscles that attaches to bones.

She started seventh grade in Cheshire while still undergoing treatment and had to miss school regularly. She initially had tutors on the days she would miss, but eventually she had to take a year off from school as she underwent inpatient chemotherapy and eight weeks of radiation to shrink the tumor, intense treatment that left her extremely weak and sick. She also endured an 11-hour surgery to remove the tumor from her leg.

The tumor had been in her leg for so long, Garbatini said, that doctors told her muscles had grown around it and there was difficulty getting it out.

“At the time, they were trying to preserve my leg,” she said.

As level-headed and optimistic as Garbatini was known for being, there were moments when it all became just too much to bear.

She said she understood the grueling treatment was meant to keep her alive. But she was still terrified.

“I relied a lot on my brother back then to be the voice of reason,” Garbatini said about her older brother, Todd. He would talk with her on her toughest days and comfort her through the uncertainty. Years later, he would reveal to his little sister what kept him so strong in the toughest times.

“He told me, ‘This may sound cold but I never worried about you,’” he told her. “‘I always knew that you were going to be OK.’ I think he was a big help to my parents, too, when they got upset.”

Her brother also helped her find her own strength and made her realize that she needed to be strong for her parents, too. As the one with the cancer, she had control of her body and how she would react to things. She began to realize that watching a loved one go through cancer was a different experience.

“If it were me talking about my mom going through it, I don’t know how I would react,” Garbatini said. “I never want to watch anybody I love go through what I went though.”

In April 1999, Garbatini finished chemotherapy, and by September of that year she was in remission, starting up a second run at seventh grade with a little more weight and hair on her head.

But her time without cancer wouldn’t last. Eight months later, she learned that the tumor had returned and doctors were recommending that her leg be amputated.

Before the family would consent to that, they opted to have Garbatini undergo more surgeries to remove the growth.

“We just weren’t ready,” she said. But the multiple surgeries were taking a toll. She lived with a perpetual open wound in her leg that needed to be dressed and covered when she showered. Eventually, she developed an infection.

She returned to The Hole in the Wall Gang Camp in the summer of 2000, and she met a counselor who also had rhabdomyosarcoma and had her leg amputated. The counselor showed Garbatini that having one leg did not mean a lifetime of limits and that she was as active at camp as everyone else.

“She was beautiful and inspiring and could take down the world when she wanted to,” Garbatini said.

So when doctors that summer again recommended amputation for Garbatini, this time she believed she could do it.

“It was like everything fell into place,” she said.

That September, before starting eighth grade, Garbatini underwent surgery to have part of her leg removed. At the time, a full-body scan was done that found more cancer in her chest, this time chondrosarcoma, a cartilage-attacking cancer, prompting doctors to remove part of her ribs and lungs.

Chemotherapy would have a different impact on Garbatini this time, she said. She was 13 and going into eighth grade, an awkward and unsettling time for girls even without a serious illness.

“The chemotherapy still made me very sick and weak and I lost my hair again. It was different for me this time because I was an adolescent, already going through some changes, struggling to find myself.”

Thankfully, she said, her family’s decision to have her repeat the seventh grade put her in a class of loving and caring Cheshire students, she said. Now a year older, Garbatini said her friends decorated her locker with inspirational messages, wore purple ribbons to show their support, visited her at home, checking on her regularly to let her know she was missed.

Some of the best friends she has today are from that class, she said.

“They really rallied behind me,” she said. “They are some of the most kind caring and compassionate people I have ever met.”

This support, she said, helped contribute to her growing resiliency. Bald, weak, without a leg and wearing a prosthesis, Garbatini returned to the middle school and to a spot on the volleyball team.

Her time in the sport continued in high school. She played sparingly as a freshman on the junior varsity team but played more regularly as a sophomore as she learned to walk better with the prosthesis.

“In my head, I wasn’t not going to play sports. It was never an option,” she said. “I don’t remember even having a thought that I was never going to play again. Sports were a very important part of my life.”

It was around this time that Garbatini was adding to her list of speeches as a spokesperson for several charities, including The Hole in the Wall Gang Camp, where she attended camp for five years before becoming a junior counselor. For years, the promotional video in which she appears was shown at fundraisers throughout the nation, including one in 2002 to help finance Newman’s dream of a camp program in California.

At 15, Garbatini was asked to give a speech at the fundraiser in a Los Angeles theater, where she met Oscar-winning actors Julia Roberts and Tom Hanks and several other celebrities.

Scared to even speak in front of her class at school and “unbelievably shy,” Garbatini said, she wasn’t sure how she could give a speech to the thousands who would gather for the fundraiser.

“Never in a million years could you get me to speak in front of a group like that,” she said. But then the memories of camp came back, the days of laughing and singing with friends and other cancer patients during times when all hope seemed lost.

“I was old enough to recognize by then what kind of impact camp had on my life,” Garbatini said. “I wanted to give back so another kid like me could know that there is hope.”

After graduating from high school, Garbatini went on to Trinity College and earned a degree in psychology. Throughout her schooling, the cancer persisted. When she was a senior in 2005, she was diagnosed with leiomyosarcoma, a cancerous tumor that arises from smooth muscle tissue.

In December 2009, doctors found clear-cell carcinoma of the kidney and in 2013, she was diagnosed with breast cancer and had a bilateral mastectomy in May 2014.

Along the way, doctors recommended that she be tested for Li-Fraumeni syndrome, a rare inherited genetic cancer-predisposition syndrome.

When she was about 18, Garbatini said she did not have the test, deciding that “ignorance was bliss.”

“I had three cancers by then,” she said. “I thought, ‘Why does it matter that I know?”

But as she grew older and she thought about having a family someday, she realized she needed to know. People with the syndrome have multiple cancers and tumors in childhood.

Garbatini agreed to get the test in 2013. No one in her family, that she could remember, ever had cancer. So, she wondered, why did she keep getting the disease?

The tests results came back positive.

“For me, I needed to know this because if I have children, I need to know if I could pass this on,” Garbatini said. “I needed to know because I would never want any potential or future offspring to go through what I went through. Now that I know that I have this, I know that there is a 50 percent chance that I could pass it on.”

So Garbatini has taken steps to freeze some of her eggs. She said half of her eggs have the mutation and half don’t carry it. Scientists can detect which eggs carry the mutation, she said.

“For me, it was wanting to still have the choice of whether I wanted kids down the road. I did not want that taken away from me,” she said. “But I also wanted to make sure that no one - and that includes any potential children - would have to go through what I went through. I would never want to bring a child into this world who would have to suffer.”

Garbatini said that although she is currently in remission, she never considers herself cancer-free and doesn’t get too comfortable with the idea that the illness will never return. Instead, she spends her time working, getting together with friends and dating someone she met recently who accompanied her to her latest MRI.

“He said, ‘Why wouldn’t I go with you?’” Garbatini said. “He didn’t bat an eye when I told him I had a prosthetic. He’s just been one of the most kind and caring people. I’m very lucky that I found him. Not everyone would be as understanding.”

These days, Garbatini is also pushing herself physically, whether it’s skiing, rock climbing or competing in marathons and races to raise money so children can attend The Hole In the Wall Gang Camp.

A friend from work introduced her to rock climbing, something that initially caused her concern because she would have to remove her prosthetic leg.

“It was a big step for me because I knew I would have to take my leg off at the gym in front of all of these people I didn’t know. It was scary,” she said.

But no one made an issue of it, she said, and now she climbs regularly at the Wallingford gym.

To further prove to herself that she could do extreme activities with one leg, Garbatini began training in June 2012 for her first marathon, 26 miles she hoped to complete with a friend’s hand cycle, a three-wheeled vehicle with brakes and gears that allows athletes to operate pedals with a hand-crank.

For months, she worked out with the hand cycle, building the strength she needed to get through the race. As the race neared, she worked up to finishing 20 miles during training, and though she was confident with the feel of the device, she was nervous about her first long race, even if it was in friendly Disney World in Florida, a place she chose because she thought the atmosphere and energy there was similar to the atmosphere at camp.

“I was just absolutely terrified,” she said, but she would not dream of dropping out since she was raising money to send a child to camp. “My goal was to not come in last place.”

On the day of the marathon, she raced through the different parks at Disney, and at one point, encountered a steep hill that she wasn’t sure she could climb.

“Every muscle in my body was tense,” she said. “And then I looked over and saw people dressed as army men from the movie ‘Toy Story’ and they had microphones, saying, ‘Smile through the pain.’ I thought that was so Disney. It was awesome.”

Garbatini’s biggest race challenges were in 2014 and earlier this year, when she joined a team to compete in the Ragnar Relay in Cape Cod.

In her first relay, she completed about 16 miles of the 200-mile relay, which is divided among 12 people.

In the second Ragnar relay, she went farther: 28.7 grueling miles. She looks back on it now and wonders just how she did it.

“I’ll get the occasional thought of, if I had my leg, it wouldn’t be this hard or this would be much easier if I had my leg but it’s always, well, you don’t have your leg, what are you going to do about it?” she said. “I had those ‘why me?’ moments as an 11-year-old, but now I’ve gone through this so many times that it’s part of my life now.”

She said she never made a conscious decision to say to herself, “Don’t pity yourself,” but she instead tries to take a bad day as just that - a bad day.

She said she could not have survived each battle without the help of her family, whether it was the encouraging words of Todd, a reassuring look from her father or the endless protein fruit smoothies and supplements her mother provided for her through the years. Without her family, prayer and laughter, she said, she could not have such a positive outlook.

“It’s just who you have to be to get through life with the smallest iota of positivity,” she said. “I hear from people a lot, ‘How are you so happy?’ Well, what’s the other option? Are you going to be sad all the time? I don’t want to be sad all the time.”

Garbatini said she reasons with herself that everyone has cancer in their body but, because of the syndrome she has, she can’t fight cancerous tumors like others can. So she has accepted some of the things she has to do in life, like getting regular body scans and MRIs.

And her worst days are usually around the time of these scheduled tests.

“I do get scared or have anxiety that I am going to get cancer again,” she said.

Lace Garbatini said she is in awe of her daughter and now shares her daughter’s attitude that people need to make the most of the time they are given.

“It’s been a long journey but I am grateful for where we are right now because there were many times along the way when we were not given very encouraging news,” Lace Garbatini said. “But she has beat the odds and outsmarted everybody. I think Amanda probably at this point does believe what I’ve always believed, that what she is going through has a purpose.”

For now, much of that purpose lies in her work at The Hole in the Wall Gang camp, where she’s been working since 2010, first on the organization’s special-events team and then as a volunteer coordinator. One of her tasks is to help campers tell their stories at fundraisers that are held throughout the year.

“She’s such a powerful speaker and teaches them how to craft their story. She is amazing at giving back,” said Jimmy Canton, CEO of The Hole in the Wall Gang Camp organization, which is based in New Haven and employs 80 people year-round. About 30 percent of the summer staff is made up of former campers.

Canton still recalls the change Garbatini went through during her first week at camp.

“She responded so well to camp,” Canton said. “You saw the transformation over the week and that joy that naturally came back to her face. There was a light that came back.”

Canton said she works hard to make sure other children have the same experience she has had at camp.

“I look at Amanda and honestly, she is pure inspiration,” he said. “She’s one of the most courageous people I’ve ever met. There’s something unique and special about having her in the office. She’s a real anchor for all of us to remind us of why we are doing what we are doing and to never take for granted the good health we have.

“She’s extraordinary,” he said. “She’s a warrior who has fought many battles.”

Garbatini said many people have told her that they see her as “a healer,” but she’s not certain what they mean.

“Every time I’m told that, my reaction is to shrug because I tell them I don’t know what to do with that information. And they tell me, ‘You will know when the time comes,’” she said.

Maybe so, she said, but for now she offers this to someone who is diagnosed with cancer:

“Don’t panic. I won’t sugarcoat it, there’s going to be pain, you’re going to get very sick. It’s gonna suck but you do what you have to do to live your life. Friends and family will get you through this. So much depends on your attitude.”

As for children with cancer, Garbatini said they all should experience that special camp in Ashford that helped her see brighter days right from the start.

“It’s like a second home to me now. I still love going there. I will never forget what it did for me at such an important time in my life.

___

Information from: Hartford Courant, http://www.courant.com

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