CureSearch Ultimate Hike Heroes
Hike Hero: Braeden
Braeden "SuperBub" was born a healthy, happy baby in May, 2005. Although he was somewhat "high maintenance," he was very healthy and energetic until a few weeks before he turned two, when he woke up unable to walk without falling. After several weeks of doctors and tests, Braeden was diagnosed with stage III, high risk neuroblastoma on the day before his second birthday and began a long and difficult journey. Through chemo, surgery, clinic appointments, transfusions, and hospital stays he remained a silly, bubbly little boy who loved his bike, fast cars, trucks, motorcycles, the outdoors, and dirt. He also loved superheroes, but everyone else thought HE was the REAL superhero. His cancer responded quickly to treatment and by February, 2008, Braeden was on his way back to being a "normal" boy.
His spring and summer days were spent doing one of his most favorite things, which he wasn't allowed to do while in treatment; SWIMMING! In August, Braeden went in for regular scans and it was discovered that his cancer had returned. Not slowing down even a little, Braeden fought on through more surgeries, chemo, and radiation, like the little superhero he was. Though enduring so much, he did so with courage, spunk, and a quirky personality that just made people laugh. Having been cleared, once again, Braeden's cancer returned once more in November of 2008, but this time nothing could stop it. He was enrolled in hospice care in February, 2009 and spent his remaining weeks at home with his family playing with his trucks and treasures and on April 18, 2009 he passed away quietly at home in mom's and dad's arms.
Almost five years later, his parents Kevin and Dawn still fight. Now they fight for other children, who like Bub, endure far more than children ever should. Kevin and Dawn are the founders of SuperBub's SuperHeroes, in honor of Braeden, and GOLD: The New Pink, an advocacy and awareness network for pediatric cancer. They got involved with CureSearch's Ultimate Hike program in 2011 when they hiked the Tecumseh Trail Hike for the first time, and have been hooked ever since. In 2012 they served as volunteers, hikers, drivers, and trail support, and recruited and coached and coached in 2013. Kevin and Dawn want you to know that, whatever your reason for hiking, YOU can do this, and you CAN and WILL change the lives of children by joining Ultimate Hike!
Hike Hero: Eve
In October 2009, just days after Eve turned two, she was diagnosed with Stage V Wilms tumor (a pediatric kidney cancer). Eve underwent months of chemotherapy in addition to radiation and surgery, in which she lost her left kidney and part of her right. She has been off-treatment since May 2010 and continues to be followed by her oncologists to make sure her body shows no evidence of disease.
Eve and others like her have been through more in their short lives than most adults have been through in their decades on this earth. When the opportunity arose for Eve's mom to fund raisefor CureSearch's Ultimate Hike program, she decided that no matter how challenging it may be, it is much easier than battling cancer. The training program was invaluable, especially for someone like her who had never hiked before. She has participated in two Ultimate Hikes and will be training for a third this year; the faces of these kids are what keep her going when the blisters on her feet try to distract her.
Eve's mom encourages you to take the time to think about why you are making this commitment, especially when you are tired, weary, sore, and sweating. There are countless kids who would switch places with you in a heartbeat, and these are the reasons we hike.
Eve's mom, Christy, is a two time Foothills Trail Hiker, Alumni Challenge Hiker, and hike volunteer.
Hike Hero: Lucy
This thing we call life can throw curve ball after curve ball at us. Our resilience gets us through. And yet, this unfairness of life holds no restraint when infecting our children with deadly diseases. Brain cancer took my Lucy away from our family at just seventeen months. She fought harder than anyone should ever have to, especially at such a young age, and never gave up. From the sickness before she was diagnosed, through the brain surgery on her first birthday, the six grueling rounds of chemotherapy, and all the way to the end, she battled.
Lucy was never without love. Love to give, and the much deserved love she received. Whether she was catching the wink or smile from a nurse as she plodded up and down the halls of the hospital, or she was keeping her parents' spirits up by smiling, even if just to show us how tough she was. Her meticulous and deliberate manner on how she approached things always fascinated me. She studied, almost as if she was planning something, whenever someone or something new came her way. If I were to guess what was going through her mind, it would have been like the whole cancer thing was nothing more than an inconvenience and whatever was in front of her, at that given time, deserved her undivided attention.
Obviously, her mother and I are beyond proud of her. Anyone who is dealt that kind of hand, through no fault of their own, and given no choice but to play it, commands admiration. She will be forever on the minds of her mother, big sister Lilli, me, and all of those whose lives she touched.
I know there is nothing I could do or have done to change the outcome of what has proved to be the most difficult time of my life, but if there is a regret, it would be that I never told Lucy, "Thank you." I told her I loved her many times, gave her countless hugs and kisses, and so many other acts of affection, yet I never gave her the appreciation for what she has given me and taught. Someone so small and innocent, and in such a short time, taught me so many invaluable lessons on life that still, today, I am realizing how brilliant that child really was. Even through her most difficult times, her love shown through. What motivation and love for life I have I owe to my sweet baby girl, my Ultimate Hero, my Lucy.
Lucy's dad, Brian, completed the OHT hike.
Hike Hero: Noah
Noah was born on March 31, 2004. From the get go, he had quite a few obstacles to overcome, but he was a fighter, and fight he did. Noah was born with Down Syndrome and a heart defect that required open heart surgery at ages 3 months and 9 months. Following the surgeries, Noah's days were spent with a multitude of therapists to help him learn to walk, speak, and, most of all, show the world that there was nothing that he couldn't do. He was full of smiles, and love, even though he had to work hard for things that came naturally to most people. His hugs were contagious, and he could win over every person in the room with just a smile. Soon he was attending pre-school and loving every minute of it. He enjoyed playing with dinosaurs, which he lovingly called "roars", watching SpongeBob, and cheering on his brother's football and baseball teams from the sidelines.
When Noah was only 4 years old, we noticed that he was beginning to have more difficulty walking, his balance was off, and finally he began crawling where he needed to go. A head CT revealed our worst fears. Noah had a brain tumor the size of an orange in his cerebellum which was causing his balance issues and pain. He was immediately admitted to Levine Children's Hospital in Charlotte, NC. Three days later, he underwent a 5 hour surgery to remove the tumor. At the time, the surgeon felt that he got all of it, and we would not need further treatment. It was diagnosed as Juvenile Pilocytic Astrocytoma Grade I. That initial hospitalization lasted about 4 weeks, with a few complications along the way, including meningitis, rehab and weight loss. Noah had a right sided facial droop and some right sided weakness from the brain surgery, but you would never know it to watch him fight. He continued to excel at everything he tried. He loved all animals and rode horses every week with the local therapeutic riding facility, Mitey Riders. On his first day of kindergarten, riding the bus was a huge achievement, and he loved it.
Between school and therapy appointments, Noah got regular MRI's to monitor for any regrowth. Unfortunately, his cancer returned in the summer of 2009, and we started a 14 month chemotherapy regimen. Every Friday afternoon, we would head to the clinic for 4 hours of chemo. Again, Noah fought hard, and continued to amaze us with his ability to overcome. Finally, in January of 2011, he was considered "cancer free." He went back to being a normal kid for a while, playing with his brother, friends and toys. He enjoyed the outdoors the most. He just loved life. Sadly, Noah passed away in his sleep on March 4th, 2011. It was a devastating blow to our family and friends.
Today, I continue to fight children's cancer because I hope and pray for the day that parents and children don't have to go through what our family went through. I got involved with the CureSearch Walk a couple of years ago with my team Noah's Ark, and have been fundraising ever since. This year, our team has chosen to take on the Ultimate challenge. It's only one of the ways that I try to keep Noah's memory alive. I think about the children, and what they go through while fighting this disease...hair loss, weakness, fatigue, nausea, and some pay the ultimate price by earning their Angel Wings, like my Noah. Every time I get tired, sore, or my feet hurt on the hike, I will remind myself and others "why we hike..." We do it for the kids, and their families who continue to struggle with this horrifying disease. We hike to find a CURE.
Noah's mom, Christine, and her team, Noah's Ark, have completed the Foothills Hike, and Christine and her fiancé have completed the Alumni Challenge, and look forward to hiking and volunteering for years to come.
Hike Hero: Sarah
In November of 2010, my senior year of high school, I noticed a lump on my left foot. At the time I was running cross-country and waiting for the alpine ski season to begin. The lump continued to grow but I just assumed it was from all of my different activities. When the ski season ended in March and the lump was still present, my parents decided it was time to see a doctor. On March 23rd I was diagnosed with Alveolar Rhabdomyosarcoma. My protocol called for 54 weeks consisting of chemotherapy, radiation therapy, and surgery. The tumor metastasized to my spleen and pancreas so in August surgery to remove my spleen and half of my pancreas was performed. I took that year off from college and finished treatment on May 3rd 2011. I went to school that fall at the University of Minnesota.
In August I completed CureSearch's 32 mile Ultimate Hike along the North Shore. It was during this hike that I noticed a lump on my left thigh. My doctors thought it was strain due to the vigorous hike so said to wait a few weeks before being seen. When the lump did not go away, I went in to have a biopsy done and on September 25th was diagnosed with relapsed Alveolar Rhabdomyosarcoma. This time my protocol called for 36 weeks consisting of chemotherapy, radiation therapy, and surgery. I am expected to finish treatment in August, just in time to start another semester at the University of Minnesota. Thanks to my amazing support system I know this third tumor will be the last one!
Sarah completed the Superior Hiking Trail Ultimate Hike, along with her sister.
Hike Hero: Shepard
Shepard on treatment
Shepard was diagnosed with B-cell ALL on August 23rd, 2011, just one month after his second birthday, at Children's Hospitals & Clinics of MN. He was initially diagnosed as low-risk but by the end of Induction was moved to high-risk. He had nearly nine months of intense chemotherapy (Induction, Consolidation, Interim Maintenance, and Delayed Intensification) before starting Maintenance.
The journey has certainly not been easy for Shepard, but his resilience has been incredible. With his big sister, Beela, as his co-pilot he has continued being a little boy throughout his treatments. After over three years on treatment and some scary moments, Shepard has officially completed his cancer treatment!
Shepard's mom, Jennifer, joined the Ultimate Hike Team as a Hiker in 2012, completing the Superior Hiking Trail event almost a year to the date of diagnosis. Team ShepBee has been an important part of the Ultimate Hike family ever since, with various family members and friends taking to the trail. As of January 1, 2016, Team ShepBee is our largest fundraising Ultimate Hike Team to date.
Hike Hero: Violet
When our daughter, Violet Kate, was diagnosed with Hepatoblastoma in 2011, our world came crashing down. Just before her first birthday, while visiting with some friends, we felt a lump on her abdomen. No parent thinks they will ever have to hear that their child has cancer. She began a grueling chemotherapy regimen on her first birthday, oblivious to her birthday cupcakes in the Pediatric ICU waiting room. We spent weeks at a time in the hospital, where doctors did the best they could, but mostly we felt nurses had more answers than modern medicine. Violet lost a dangerous amount of weight. We were told she would need a liver transplant.
Throughout the ordeal, we somehow stayed upbeat: Violet was alive. We had amazing support from friends and family. We found a surgeon who could remove her tumor and leave part of her liver - the best possible outcome. Now, she is a happy, healthy 3-year-old, with no evidence of disease. She has been cancer free for 2 years! We owe this wonderful second chance to pediatric doctors and scientists who dedicate their lives to finding the best treatments for childhood cancer and searching for the cures. Even before Violet completed her chemotherapy, Candi and I were signed up for the Ultimate Hike, because we knew it was our way to give back. We quickly found that Violet's story could help raise money to keep these doctors and scientists focused on the goal of improving the outcomes for families like ours. Needless to say - we're hooked.
Today, Violet loves school and ballet and art and hiking in the woods and mountains. We have met families who were not so fortunate. Families who don't have the means to travel hundreds of miles to find the best doctor. Kids with cancers which aren't as treatable or curable. These families deserve better.
-Chris and Candi Morton, three-time UH Alumni
Hike Hero: Will
In January of 2011 the Greenville, SC area got the first snow of the year. My son Will was four years old at the time. Even though he had not been quite himself for the past few days, he was excited to get out in the snow. Once he and his sisters were bundled up, they headed out to the back yard. Within 5 minutes, Will was back in the house, shivering. He felt so cold that he sat on a heat vent for the next hour. This, along with numerous, seemingly random complaints, of different aches and pains, prompted us to take him to the pediatrician. After an exam and some initial tests, the pediatrician sent him to the lab at the local hospital for more comprehensive tests. We came home and awaited the results of the tests. That was an extremely long evening as we waited. When the pediatrician called, we were instructed to come back to the hospital and be prepared to stay.
On January 25th, we heard those words that no parent ever wants to hear, "your child has cancer". Will's diagnosis was high risk acute lymphoblastic leukemia. The weeks to come were a blur. There was so much information coming at us that there was absolutely no way we could remember it all. Fortunately, the hospital had shared with us parent materials provided by CureSearch for us to use for reference and for keeping up with the treatment schedule. This was my first exposure to the CureSearch organization.
As a parent of a child in treatment, your eyes are opened to a world that, while you knew it existed, once a part of it, you have to do something about it. I learned that the parent materials that CureSearch had provided for us were just a small part of what they do and that their primary focus is funding innovative pediatric cancer treatment research. I have been an avid hiker and outdoorsman most of my life, so when I learned that one of the ways that CureSearch raises funds for research is through their Ultimate Hike program, I thought perhaps I had found my avenue to make a difference. I have been involved with the program since 2012 and have completed the 28.3 mile event on the Foothills Trail each year since as well as having been a part of hike events in Minnesota, Indiana and West Virginia. The friendships and connections I have made through Ultimate Hike have been amazing. This has kept me coming back year after year in addition my desire to make pediatric cancer a thing of the past.
Today, Will is an active 5th grader. He pressed through three and a half years of treatment and has done very well. He still struggles through some of the common long term side effects of the treatment but has grown into one strong young man.
While a 28.3 mile hike is a challenge, the training program makes it very doable. While hiking makes for a great platform for the program, it is ultimately all about raising funds for research. CureSearch makes that part very doable as well with great technology tools, a community of ideas and plenty of support. I have hiked with participants from 10 years old to 70 years old. Those who make a commitment to the training will successfully complete the event. It is a program that is making a real difference and I have been proud to be a part of it.
Join me on the trail!!