It is ever imperative to value every day, and Alyssa Amos will forever make a point to cherish what she has gained through loss. Amos is not a typical 16-year-old Nordic skier; she has attained the understanding of a mature adult and attempts to wring the most out of every adventure she tackles due to her summit of a chronic and debilitating disease.
The extensive trek began when she had just turned 10 and was diagnosed with ulcerative proctitis, which is an ongoing disease of the colon or large intestine that is marked by inflammation in the lowest part of the colon - the rectum. Tiny open sores and ulcerations form on the surface of the colon lining and bleed before producing mucus and pus, according to the Crohn’s & Colitis Foundation of America. The inflammation makes the colon empty frequently and Amos’s symptoms included diarrhea - sometimes bloody - and never-ending abdominal pain.
"At that point we believed that it was something we could get through with medication," said Alyssa’s mother, Becky Amos. "After two years Alyssa had began to taper off of the medication and we were not that worried or had even dismissed the possibility of her condition worsening."
Amos had just entered 7th grade when she encountered a major flare that was a cause for serious concern. A flare is the reappearance of the characteristic symptoms from ulcerative colitis generally including diarrhea, rectal bleeding, urgent bowel movements, constipation, abdominal cramps and pain or weight loss.
"I was going to the bathroom 20 times a day and ended up losing 15 pounds before being rediagnosed with ulcerative colitis," Amos said. Ulcerative colitis is a more serious inflammatory bowel disease that affects the entire colon and the lower part of the large intestine. Amos was prescribed Remicade, which is a drug that reduces the effects of a substance in the body that can cause inflammation. Unfortunately, Remicade lowered her white blood cell count, which allowed more minor infections to conquer her weak immune system. "The treatment at that point was truly almost worse than the disease," said Becky Amos. "And the medications never really put her into remission." During 2007, the Amos family moved to a new doctor at the Dartmouth-Hitchcock Medical Center named Dr. Corey Siegel, who is a leader in inflammatory bowel disease research. In the summer after 8th grade, Amos decided to run with the CCFA New England Got Guts Team in the Falmouth Road Race in early August of 2007 to raise awareness for her debilitating disease. Sadly, Amos went from fairly healthy to completely bedridden in June before the race and was sent for another colonoscopy. "I had been on Prednisone since January of 2007 and it had affected me tremendously," Amos said. "I just wanted to get off of the drug because it was so bad for my bones and then in June I started to have more and more symptoms, but I didn’t want to believe that my problems were coming back; I just wanted to ignore everything that was going on." The colonoscopy in early July started a horrific chain reaction and Dr. Siegel placed Amos on Humira, which was injected into her leg - but the gruesome symptoms did not subside. "I lost 30 pounds, couldn’t walk up or down the stairs and didn’t even have the strength to brush my own teeth," Amos said. "And all of these problems were side effects due to the medication I was on, but it wasn’t doing anything to relieve my original symptoms and we were running out of options." Dr. Siegel weighed the options after attempting to minimize Amos’s ulcerative colitis with numerous medications and then recommended the family visit with Dr. Richard A. Hodin, the chief of endocrine surgery at Massachusetts General Hospital. "It’s difficult to put into words how great Dr. Siegel and Dr. Hodin were throughout the entire process," Becky Amos said. "Dr. Siegel was always willing to listen to exactly what [Alyssa] had to say and how she was feeling with a phenomenal interest." The Amos family met with Dr. Hodin for a general colonoscopy, and he immediately recommended that Amos remain at Mass. General for an emergency total colectomy. She then went into surgery on July, 27, 2007 to have her colon and rectum removed. "He came back after the colonoscopy and said ‘hope you have your bags packed, because you’ll be staying here for a couple of days,’" Amos explained. Along with the initial surgery to remove the entire colon and rectum, an opening on the abdomen was made by the surgeon through which wastes are emptied into a pouch that is attached to the stomach with an adhesive. Amos had to carry an ileostomy or external stoma for approximately three months before it was removed during the second surgery. That fall, Amos entered Stratton Mountain School as a freshman looking to make the most of the upcoming Nordic season despite missing the Falmouth Road Race due to her surgery in July. "The surgery really weighed down on her physically for a couple of weeks, but she bounced back pretty quickly," Becky Amos said. "She still had the ostomy bag until October, but handled it very well and worked hard to train hard despite the few limitations that held her back." During the month of her surgery, Amos decided to miss the Falmouth Road Race because of its proximity to her recovery, but her CCFA running-mates made a point to make her feel as comfortable as possible with everything she was going through. "It was truly amazing to see what these people did for her and our family," said Ashley Amos, Alyssa’s sister. "The letters and e-mails poured in and some people even came and visited her in the hospital; these are people that we had never met before and it was just amazing how they helped out and gave her - and our family - encouragement." Amos then received more heartening news in September, as she had won the CCFA Comeback Kid Award for ileostomy and traveled to New York City to accept the award at a banquet. "I was very nervous about getting up on stage in front of all those people and giving a speech," Amos said. "But I started it off with a couple of jokes and it went smoothly after that. "Going to New York was a great experience for me at that point because it was surprising to see how many people have gone through what I did and it felt great to talk about it because it was embarrassing in the beginning. That trip helped me realize that it really helps to just be open and honest about everything because some teenagers just don’t get it." Amos returned to Mass. General for her second surgery on Oct. 18, just three weeks before SMS fall training camp in Quebec. "It was really incredible how quickly she bounced back," Ashley Amos said. "But the most important thing was that she no longer had to battle with the disease and was now working to become a stronger athlete again." All of the Nordic coaches at SMS had been informed by the Amos family of Alyssa’s condition and recovery during training, but Alyssa set herself up with goals to make the J2 championships in March of 2008. "I headed into fall camp just a couple weeks removed from surgery, felt pretty tired throughout training and couldn’t participate in double sessions," Amos said. "But it felt great to be back; it felt great to have goals again and work toward something with no major problems. And most importantly, it was such a nice change to simply be out of the hospital." Amos continued to work hard though her first season back, but couldn’t possibly be expected to compete at the high levels she imagined within her head and was constantly disappointed by finishing at the bottom of the results. "Alyssa refuses to believe that she can’t do anything that she sets her mind to, and finds it hard to believe that this sickness would hold her back," SMS J2/J3 coach Poppet Boswell said. "And all of her experiences have given her the gift to push herself even harder to her goals because she understands exactly how precious life is. "The only problem is that Nordic skiing is a tough sport and it takes time to make significant progress, so when a normal athlete is working hard to move up the ladder one step at a time, Alyssa is trying to skip three at a time and pushes herself almost too hard sometimes." The freshman’s hard work and dedication completely paid off when she qualified for the J2 championships with a 16th-place finish at a meet in Lamoille in February. "I had attained my initial goal; it was such a relief and a very emotional day for me and my family," Amos said. "I had been through so much, worked so hard, and it really hurt when I was finishing in last place at some of the first meets of the season; so qualifying for J2s was a great day." Amos didn’t only want to make it to the J2 meet; she now wanted a Top 10 finish in one of the four races at the competition. "Training is a real balancing act between pushing your body just far enough to get it into peak condition," Boswell said. "And with Alyssa, the hardest battle is to pull back on her reins a bit and get her to understand exactly how hard to push her body without going overboard." All of the precise balancing paid off in March at the J2 Championships, where she finished seventh in the classic 1K sprint - which was her final race of the day after finishing 40th in the 5K classic race and 43rd in the 5K freestyle. "I was utterly ecstatic, and I think I was even shaking on the podium," Amos said. "Getting my top ten was such a relief and it felt great to get my medal." The seventh-place finish was an emotional release not only for Amos, but also her family, coaches and teammates who had been through so much with her crusade against colitis. "Alyssa has been inspirational to all of us," Boswell said. "None of the kids on the team felt right complaining once they knew what she had gone through and the struggles she had to encounter on a daily basis even after her surgery. "It was also moving to see her attain all of the lofty goals that she set for herself; we were all very happy, and tearful, that day at J2’s." Amos’s meteoric rise continued with a 32nd-place finish at the Haywood Nationals Classic 7.5K at Whistler Olympic Park in Canada on March 28, 2008. "I was still getting tired, but it was definitely getting better," Amos said. "Instead of simply surviving races, I was able to push myself and push my body a bit with out feeling any serious consequences." Amos kept training hard through the summer of 2008 to make more of an impact in the upcoming Nordic season with a new goal of qualifying for the Junior Olympics as a sophomore. The season jumped off to a positive start with a sixth-place finish at the TD Banknorth Eastern Cup Opener Weekend girls sprint race, but Amos struggled to finish higher in the remaining JO qualifiers. "I went into the season much stronger, but again had difficulty with over-training and ended up with a common cold that held me back from attaining enough points to get to JO’s," Amos said. "That sixth-place finish was my best of the season and a definite improvement." The sophomore still qualified for the J2 Championships in March of 2009 and turned in another rousing performance by finishing sixth in the 1K sprint, 16th in the 5K freestyle and 18th in the 5K classic. The Amos family has now moved back to Bennington and Amos will transfer to Mount Anthony Union High School as a junior in the fall, but must first run in the race that her disease held her out of in the first place. "I wanted to run in the Falmouth Road Race with the CCFA Got Guts Team to raise funds and awareness about colitis and everything that I had to go through," Amos said. "But more importantly, I want to run the race and thank all of those people who helped me through such a trying time in my life when I was scared and didn’t know what would happen. "Before I had my surgeries, I talked with some people from the CCFA who said that they never wanted to forget this disease. At the time I didn’t understand what they meant, because I thought I’d want to move on and forget everything that I went through. Now I understand why I should remember and need to help out other people going through something similar." Amos won’t be alone in Cape Cod for the race on Aug. 9, as her sister, Ashley, will be running along side her; sticking together, something the sisters have done since the beginning of the disease’s onset. "I want to run the race with Alyssa because it has been an inspiration to see everything that she has gone through," Ashley said. "Not only was she trying to make it through school and life as a teenager, but she was trying to be an athlete at a high level in a very competitive sport. "Also, I want to give back to all of the people from the CCFA who assisted our family through the past couple of years." Amos is excited to participate in numerous sports at MAU and is even training to begin competing in the Biathlon, but her main focus continues to remain upon the upcoming Nordic season. "Alyssa will be a great addition to our team," MAU head Nordic coach Bruce Smith said. "Our sport is very grueling and the fact that she has persevered through her sickness is a credit to her strength of character and determination." But in the end, Amos is just happy to be a healthy teenager again. "Everyone faces challenges in their lifetime, but it’s how you deal with those problems and overcome challenges to become a better or stronger person in the end," Amos said. "A bad ski race can seem like a horrible thing at the time, but I make a point to take a step back and say that I should just be happy to be out there, competing with my friends. "Life could be so much worse, so I just try find the fun in things and get the most out of every new day."
