Kevin Koke is running the Boston Marathon to support the Endowment!
Help Kevin reach his $15,000 goal to receive a $25,000 match from Edrington
Boston Marathon: April 15, 2019
Raised so far: $62,527
26.2 Miles. Raising money and awareness for the Caroline Symmes Cancer Endowment while running 26.2 miles. This is what Kevin Koke will be doing for us in Boston on April 15th.
When he’s not managing a multi-state spirits portfolio for Edrington or spending time with his energetic four kids and beautiful wife, he balances out a typical day with some mind-clearing marathon training on the open road.
He first learned about the endowment by participating in the Caroline Classic Golf Scramble in 2015 and every year since, this has become an outing he won’t miss. After attending his first Pink Balloon Party in 2018 with his wife, he was inspired to raise money while running.
It also helps that his wife, Laura is a nurse at the Center for Pediatric Cancer and Blood Disorders at Riley Children’s Health who actually knew and treated Caroline. Kevin has always been inspired by her passion and the positive effect that she makes on the kids and their families during difficult times.
What makes Kevin’s journey unique? Each mile will be run in honor of a child who has been affected by cancer and has been or still is being treated at Riley Children’s Health. Kevin will focus on 26 children as he makes his way to the finish line; these 26 children will keep Kevin motivated and focused while he is Running for Riley.
How can you join the journey? Make a donation towards Kevin’s goal of $15,000! When he reaches his goal, his employer Edrington, will donate an additional $25,000.
As Kevin sets his sights on conquering his second Boston Marathon in 3 years, he is passionate about extending a helping hand to those in need. By raising money and awareness for the Caroline Symmes Cancer Endowment, Kevin hopes to teach his own children that giving is a way to make the heart feel happy.
26 Miles for 26 Kids.
As Kevin Koke prepares to run the Boston Marathon, he will be dedicating each mile to pediatric cancer patients in or out of treatment. We’ll introduce you to these amazing kids on Facebook and Instagram, every day leading up to Running for Riley.
Audrey Lupton started running by accident. Her math teacher and mentor talked her out of playing volleyball, which she was not very good at, and encouraged her to join the cross-country team. Friends assured her that it was easy and fun. It was not easy. Audrey had never run a mile. But it was fun.
She loved the friends, the camaraderie of running. She liked to stop and pet every dog that she passed on training runs through neighborhoods. She loved running even while she hated to run. Audrey rarely finished near the front of any race, but that did not matter. She celebrated her effort, her accomplishments. She understood that it was the journey, not the result that mattered. This attitude served her well. Audrey developed rhabdomyosarcoma. She died on July 6, 2017 at age 17, eight months after her last race.
From Audrey’s mother, Suzann: “Thank you for running for Audrey and the kids like her. Enjoy the journey and remember, the next mile will be better.”
With a passion for racing and working on race cars, Ben Burchard spent almost every weekend at a racetrack somewhere. In school, writing was his greatest strength. He approached school the same way he approached every race, putting everything he had into the best possible outcome.
He always loved people. Even at 3 years old, he would try to say hello to everyone when grocery shopping with his mom, even stopping to shake the hand of the older men he’d meet there. It was as if he was bound to be someone significant. He was funny and a joy to be around too. He had many friends of all ages, from 2 to 92. Ben had a reputation for making people feel welcome and comfortable. He never liked to see anyone struggle and never hesitated to help. He was never afraid to speak up when necessary. To Ben, it was all about everyone having fun.
He wrote that he was a devoted Christian and loved to serve his God – He intended to show people who he was and what he stood for as a Christian.
He said he dreamed of all the possibilities the future held for him; college, a degree, a career as a racecar driver, getting married and having a family. He was even described once as “an eternal optimist,” just like a favorite Cubbie, Ron Santo.
His heroes where James Hinchcliffe and Tim Tebow. Just like his heroes, he was proud of himself because of the way he handled tough situations.
Blaine was diagnosed with JMML, one of the rarest types of childhood leukemia in 2009, at the age of two. His only hope for survival was a bone marrow transplant. He received a cord blood transplant from an anonymous infant donor in 2009 at Riley Children’s Hospital and spent nearly a year on their stem cell unit.
He is now considered cured and is a happy, healthy 12 year old. He has beat the odds, and has amazed the doctors. He earns straight As in the classroom and is a student leader as a member of his school’s student council. He is an amazing baseball player, thrives on the basketball court and is a precise archer on a state ranked archery team. He is such an inspiration to everyone around him and provides hope to others fighting this ugly beast called childhood cancer.
After a normal birth and typical development as an infant, Ben Edwards from New Palestine, Ind., began falling a lot before completely losing the ability to walk as a toddler. He was just 18 months old when he was diagnosed with a brain tumor that was rapidly taking up territory in his brain. Ben underwent five surgeries, including two emergency surgeries, and 32 rounds of radiation therapy treatments at Riley Hospital for Children. Today Ben is 9 years old and cancer free. He loves outdoor activities and doing anything with his older brother, Blake.
From Brody’s mother, Celia:
Brody Stephens from New Palestine battled and beat cancer twice. In July of 2010, he was diagnosed with Acute Myeloid Leukemia (AML). He endured 5 rounds of rigorous chemotherapy with a month long stay in the hospital for each round. He was always smiling, playing with other kids and running up and down the Hem/Onc floor at Riley Hospital.
He completed his treatment in January 2011 and achieved full remission. He spent the next 5 years being a normal healthy boy. Brody loved sports and making memories with his 3 older brothers Eli, Ian and Aidan and his parents.
In December 2015, just 1 month shy of being considered 5 years from end of treatment remission, our family was blown away to hear that Brody had relapsed with a switch to a different type of leukemia called B cell Acute Lymphoblastic Leukemia. This diagnosis was considered very rare among leukemia patients and we were told that “Brody was writing his own treatment plan” with his diagnosis. Brody endured multiple rounds of chemotherapy, hospitalizations and complications.
Along his journey, he met so many children battling different cancers. HE NEVER GAVE UP! Brody loved to talk to nurses, doctors, Riley staff and friends about basketball, the Golden State Warriors, Purdue, and Legos. He loved to tell silly jokes and stories. Brody could light up a room with his courage, bravery and zest for life.
In September 2016, Brody received a stem cell transplant from a cord blood donor. He unfortunately developed multiple complications that kept him in the hospital for 120 days or more. Brody kept going and kept other cancer fighters going too. On April 25, 2017 Brody passed away from a viral illness called Adenovirus that he had caught during transplant.
Our family is eternally grateful to Riley Hospital physicians, nurses, and staff for the care of Brody. We are grateful for pediatric cancer research so that every family has hope for a cure.
Brooks was an active, fun-loving, full-of-life 5 year old boy when his world unexpectedly changed on June 13, 2015. He was diagnosed with stage IV inoperable brain tumors, often referred to as GBMs. After receiving an emergency shunt and tumor biopsy, he was put on several medicines and a treatment plan was made. However, there is no known cure for this type of brain cancer, and we were told that radiation was the best chance to prolong his life. So we did what any parent would do when hearing this devastating news…we got on our knees and prayed. Then we got right back on our feet again and fought for Brooks’s life.
Brooks stayed 10 days in the hospital and was released for home. While waiting on approval from a nearby proton beam radiation center, Brooks started acting differently again. We rushed him to the hospital to find out he had suffered a brain bleed at the biopsy site. He then had to start conventional brain radiation that day in order to save his life. The tumor had grown 40% in 10 days. He also started monthly oral chemo.
Brooks was simply amazing and beyond brave during his fight. He never asked why, never cried, and knew what he needed to do in order to get better. Brooks’s speech and physical abilities were greatly impacted from the brain bleed, growing tumor and radiation swelling. He lost all ability to walk, talk, eat, sit up, go to the bathroom, and play. He could hardly keep his eyes open. He received a ng-tube, which lead to a g-tube due to his lack of appetite and poor oral motor skills. He also had a PICC line placed a few times.
During his recovery from radiation, Brooks still tried so hard to do the things he loved the most… play with his hot wheels, Legos, monster trucks, books, video games, hanging out with his friends and being outdoors. He even discovered a new-found love for painting. (His first canvas painting can be found on a Bucketfeet exclusive tennis shoe and is incorporated in many of our fundraisers in his honor.)
Eventually Brooks started making progress in his recovery!!! With the help of therapy, hard work, and miraculous tumor shrinkage, he started regaining gross and fine motor function, talking, eating some, sitting up on his own…and finally started fighting with his younger twin brother and sister again! Looking back we now realize that we were witnessing a miracle. He started to do normal boy things again! In January 2016 he attended kindergarten for the first time at Cherry Tree Elementary. What a blessing that was for him!!
His follow-up brain MRIs showed tumor shrinkage until March 3, 2016. We felt in our guts something was wrong, something was different this time. Then on March 16, 2016 we were hit a heavy blow yet again. Brooks was acting differently that day so we took him to the ER. They ended up finding another tumor, but this time on his cervical spine. This was devastating news. Brooks bravely underwent risky cervical spine radiation for 10 days in hopes to slow the tumor down. Unfortunately the tumor was too aggressive and resistant to the radiation this time. Brooks’s neck and leg pain started to increase and his function began to quickly decrease. He was back to the confines of his wheelchair. He could hardly turn his head without pain, could not walk, could not use his right arm, and his voice was weakening.
Then on May 13, 2016, he caught a nasty virus and was admitted to the hospital. After several days of ups and downs, he started to quickly decline… We had to make the hardest decisions any parent should have to make… What did we want his last few breaths on Earth to look like? I still could not accept the fact that this was “the end.” I never gave up hope. This just couldn’t be happening to MY Brooks. But as his dad and I talked and prayed over every option, it was Brooks who ultimately ended up making the decision for us. During his 10 day hospital stay, while on b-pap, the only words Brooks ever said were, “I want to go home.” So, with heavy hearts, we knew what was the right thing to do.
We transferred Brooks from the hospital back to our home on May 21, 2016. He waited until he was home, he was safe, and he was surrounded by family to take his last breath here on Earth at 7:47pm at just 6 years old. One of the last sounds he heard, just minutes before, was his mommy laughing and being silly with his 21 month-old twin siblings, Ellery and Rory. True to Brooks, he wanted to make sure we were all happy before letting go.
There is not a minute that goes by that Brooks is not thought of and loved. He is in our hearts and we just tug on our heartstrings to feel him close. It is so comforting to know we will see him again someday and that he is always with us. Our lives and our hearts will forever be missing our puzzle piece.
CARMELA “CARMIE” BETSEY
From Carmie’s mother, Janine:
“Carmela Betsey ‘Carmie,’ was diagnosed in January 2011, with diffuse intrinsic pontine glioma. The weekend before she became ill, she was playing basketball at the Girl Scout Cookie Round Up with the Mayor of Indianapolis. The next weekend she was sick, dizzy, vomiting and having problems walking and an MRI, two days later revealed the bad news. She had an incurable, inoperable, tumor in her brain stem and was given a bleak prognosis.
Carmela loved to dance, sing, cook and play. She was such a smart and intelligent Kindergartener at the time of diagnosis. She loved her friends and family. She had the most gentle loving spirit and was full of sunshine.
When she was diagnosed, her oncology team in Indianapolis recommended that the family travel to St. Jude Children’s Research Hospital in order to fight this inoperable tumor that had settled in her brain stem. Most children with DIPG die within 6 months of diagnosis. With the help of St. Jude’s and the wonderful oncology team team there, Carmela was fortunate to have 14 months of rich life, before she passed away on April 7, 2012. The family donated her tumor to St. Jude’s research program to advance the knowledge and cures around this terrible disease.
This year, 2019, is especially difficult as this will be the point in time when Carmie will be gone more days then she was here with her family. We miss her immensely and think about her every day. We sincerely appreciate you raising funds to assist in finding better cures for children with cancer.”
CHARLES “CHARLIE” LANE
Charles was diagnosed with Medulloblastoma Brain Cancer in March of 2018, at just 2 1/2 years old. After a month of unexplained symptoms and visiting multiple doctors, it was at Riley Hospital’s ED where tumors were found in Charlie’s brain that had metastasized to his spine. From March to December of 2018, Charlie spent 200 plus days in the hospital. After multiple surgeries, eight rounds of high-dose chemotherapy, and three stem cell transplants, Charlie was discharged home and able to spend Christmas with his family.
Charlie has had a complete response to treatment and is considered: “No Evidence of Disease.” As his immune system gains strength, he is currently home-bound. He sees his Neuro-Oncology team at Riley monthly, and has MRI scans of his brain and spine every 3 months. He will be closely monitored for the next five years.
Charles has two older sisters, Sadie and Mary Grace, that he adorably calls, “his girls”. He has a service dog named Princess that assists and comforts him. Charlie loves to listen and play music, Mickey Mouse, and playing outside. Charlie’s Angels have helped to carry him through, along with his light that has always shined bright on the darkest of days.
When Connor Schuelke from South Bend was diagnosed with metastatic Ewing sarcoma, a rare cancer that develops in and around the bones, he didn’t let his treatment derail his straight-A report card. Despite a lengthy stay at Riley Hospital for Children for multiple chemotherapy treatments and a hip replacement surgery, Connor kept up with school work with the help of the Riley School Program. While he was in the hospital, Connor’s school and parish community rallied to raise funds for Riley Hospital on his behalf.
Today, Connor is doing well and has transitioned back into school. This past summer, Connor spent two weeks at a music camp in Michigan, where he practiced piano for three hours a day. He also enjoys swimming, Legos and taking flying lessons. Connor is serving as a 2019 Riley Champion.
Cooper Davis was diagnosed with Philadelphia Chromosome Positive B-Cell Acute Lymphoblastic Leukemia in July of 2015 at the age of 11. Philly Positive is a rare form of ALL and because of that his treatment was much more aggressive. He had several rounds of high dose chemotherapy which meant many hospital stays. The chemo did what it should have because Cooper is in remission…but not without side effects. It definitely took a toll on him. He spent 155 days inpatient at Riley Hospital for Children. The cancer fractured ten vertebrae on his spine. He was in the PICU three different times. He has been given 26 blood transfusions amounting to 52 units of blood. He has had 26 spinal taps. He has had over 130 chemo treatment in the port in his chest and he has swallowed nearly 2,500 chemo pills. What he endured for 2 straight years was heartbreaking… it was brutal… but Praise God, it did the job.
Today Cooper is a thriving, growing 15 year old freshman in High School. He loves to play guitar and video games and hang out with his friends. He is a member of Extra Life United which raises funds for the hospital of your choice through various gaming events and live streams. Most recently Cooper was named the 2019 Children’s Miracle Network Champion of the year for Indiana by Riley Hospital for Children. It was quite an honor.
Cooper has met many friends along this journey, and unfortunately he has had to say goodbye to way too many of them, as well. They will always hold a special place in his heart. Cooper hopes to bring pediatric cancer awareness, and with that more funding, so that one day he will be able to see a cure for all childhood cancers.
Age 7, Drake Henry Williams recently rang the bell after 3.5 years in treatment for leukemia with over 25 spinal taps, 30 double shots of chemo in his legs, daily chemo through his port and one big smile. Lover of basket/baseball, Legos, vacations, his family and dog Penny, Drake will be considered cancer free after he has five years of clear bloodwork.
From Ellie’s mother, Karyn:
“Ellie, a sweet 15 year old. She was diagnosed with a brain tumor in May 2017, and has been getting chemotherapy ever since. It has been a challenging road, but she’s maintained her positive spirit and spreads joy wherever she goes.
Good luck on your marathon and thank you for raising awareness of the need for pediatric cancer research to have better funding!”
Gavin Hatheway is currently in treatment at Riley Children’s Hospital for Stage 4 Rhabdomyosarcoma. He was diagnosed in October of 2018.
Gavin got to ring the bell this month after completing 31 radiation treatments. He will be doing chemotherapy until August.
GRACE “GRACIE” BENNETT
From Gracie’s mother, Stephanie:
“On February 26th, at the age of 3.5, Gracie’s eye started twitching, which I thought was a seizure. I knew in my gut something was wrong. I took her to IU West where they did a CT and found a large mass in her brain. We were immediately transferred to Riley Children’s Health. A MRI was done and then Gracie was put in ICU so they could get the seizures to stop and to get the swelling down in the brain. On March 1, 2010 they did a full craniotomy and right frontal resection. After a 15 hour surgery, she was put back in ICU.
A couple weeks later, we got a call from oncology saying that Gracie had Grade II Oligoastrocytoma, which was rare in kids and mostly found in 40 year old men. She underwent 2 years of weekly chemo treatments and on Feb 14, 2012 she finished with chemo.
The nurses were amazing! Laura Koke, Lori Luke, Marilyn all bought Hello Kitty scrubs to wear on Tuesday’s for Gracie because she loved Hello Kitty! Gracie’s Nana was also going through chemo battling colon cancer and passed away 6 months after Gracie was diagnosed.
Grace still has a fight ahead of her. The tumor remains in the corpus callosum which is surrounded by a blood barrier. In October 2013, Grace had a seizure while visiting her aunt in Missouri. In the following months, she began to experience several more. After a video EEG and consult, her neurosurgeon said that the seizures were coming from the tumor where they had removed part of it before.
Grace had her second surgery on March 31, 2014. She did amazing with some left side weakness. That didn’t stop her, though. She began physical therapy and worked hard, getting herself back on the softball diamond and playing in her first tournament 3 weeks after surgery. After 3 months of PT, she was back to herself!
In July 2014 she had her 3 month MRI where a new spot showed up, so they were going to watch it. Then November 7th she had a follow up MRI that showed the tumor had grown. Grace had her third brain surgery on December 30, 2014. Dr. Smith was able to removed even more residual tumor with only 1% remaining in her memory cortex.
Grace lives life to the fullest and will be 13 in May! Her tumor is still stable Just recently celebrated finishing up chemo 9 years ago. She was recently diagnosed with Scleroderma and Juvenile Idiopathic Arthritis but doesn’t let it hold her back!
Gracie leads an annual toy drive and has donated over 30,000 toys to Riley. In 2017 she collected 11,000. She also helped grant 18 wishes for Make A Wish and raised $100,000 in 5 years with her friend Maeci Young. The received a Red Cross Humanitarian Award in 2013. Last year Gracie was named a 2018 Riley Champion.”
Jack Klein: forever 10 years old.
WITHOUT CANCER JACK WOULD BE:
being a little brother and big cousin,
enjoying comic books,
learning to cook,
learning to code,
competing in chess and robotics,
playing pranks, and
JAMES “JIMMY” MICHAEL WHITE III
On August 5, 1999, just six weeks before his third birthday, Jimmy died from Hepatoblastoma, a rare liver cancer.
His mother, Julie, died from colorectal cancer on December 20, 2015. Through genetic testing, it was discovered that she had the FAP gene and had passed it to Jimmy. Her cancer was discovered in 2004 when her 2nd son was just a few months old. We were fortunate enough to have her for 13 1/2 years.
Unfortunately, this gene was also passed on to her son Collin. Collin, who turned 17 this month, had his colon removed in January as a precaution against developing colon cancer His last yearly colonoscopy showed hundreds of polyps but thankfully no sign of cancer.
May 14, 2011 was a typical Saturday during baseball season, we were at the little league park for a double header. What would happen that day would be life changing, and we didn’t even know it.
Kaleb age 13 was involved in an aggressive play as he was trying to score at homeplate (this would turn out to be a blessing in disguise). What we didn’t know was he had a tumor that ruptured in the impact. 2 weeks later Kaleb asked what the “squishy” thing was on the roof of his mouth, which got larger throughout the day. A “typical” pediatrician appt led to a whirlwind of events.
Within days we had been to an ENT, sent to a head/neck specialist, had a biopsy, told this was a very aggressive cancer called Ewing’s Sarcoma, had our first visit to Riley Children’s Hospital for many scans/tests, had surgery to insert a central line, started chemo and had a treatment plan. When I say within days, I mean approx. 1 week all this took place while our heads were spinning! Kaleb underwent an aggressive chemo schedule. He would be admitted to the hospital 3 out of 4 weeks a month, 2x a week blood draws, several day of shots after chemo to help his counts rebound. We also went to Bloomington to do 7 weeks (35 rounds) of daily radiation that lead to severe mouth sores and not being able to eat or drink by mouth for 6 months. After 11 months he finished and was considered NED (No Evidence of Disease)
However, cancer doesn’t give up and decided to attack again 9 months later. After a trip to ER, many tests, a diagnosis of relapse, a tumor covering his C6 vertebrae, a spot on his L5 vertebrae and the left side of his skull, being sent to ICU, an emergency 6 ½ hour surgery to remove the C6 vertebrea, physical/occupational therapy, chemo, another 7 weeks of radiation (35 more rounds) and more mouth sores we were fighting again. After a year, we had clear scans yet again. But 6 months later he had relapsed, and he was on many chemo options and studies from Aug 2014 until he passed April 8, 2016 at the age of 18.
However, a 5 year battle with Ewings Sarcoma was not all that defined him. He was an AMAZING son and a GREAT big brother! Kaleb loved baseball, especially the Boston Red Sox and was truly blessed to have a very close friendship with Brock Holt of the Red Sox. He loved to hunt, trap fish and just be outdoors. He did not let Cancer stop him, slow him down yes, but not stop him. Anyone who knew him would say he had an amazing smile and beautiful bright blue eyes. They also knew without a doubt that Kaleb had a very strong faith and truly loved God, his family and his friends. He like all of us gained a new perspective on life and how to live every moment. He lived every day by Philippians 4:13 which reads “I can do ALL things in Christ who gives me strength” He would tell anyone and everyone this verse and how it helped him fight each day. He loved to have fun, laugh and even doctors, and nurses were not safe from his shenanigans. Even on bad days he would be able to flash his huge smile for someone.
Kaleb participated in many chemo trials/studies he felt like research was so very important. He would often say “Since I have to go through this anyway I may as well help along the way” Often times he would be down and say “Mom I really don’t care how I got this cancer I have it and that’s just how it is but I just wish the doctors had something to cure it not just for me but for all kids.”
We are so very grateful to Riley, the doctors, the nurses and researchers that care deeply for these kids and NEVER quit. Anytime we can help raise money for much needed research, we are honored to help because that is what Kaleb would want!
Kate Malone from West Lafayette, Ind., was already handling her type 1 diabetes diagnosis when she began to feel very tired, and an infection where she injected her insulin wouldn’t heal. She was airlifted from a local emergency room to Riley Hospital for Children when her blood pressure dropped severely. At Riley, she was diagnosed with acute lymphoblastic leukemia. Kate spent a month at Riley, where she participated in art therapy to express her emotions about her diagnosis. She returned home and continued treatment for two years, catching a few hours of school and dance classes when she felt well enough. Today, Kate has finally returned to school full-time, and tests show that she is in remission. Kate is serving as a 2019 Riley Champion.
From her aunt, Cari:
“Last December, my best friend’s world came crashing down when her 5 year old daughter was diagnosed with retinoblastoma, cancer in her right eye. Since then, Kinsley has undergone many rounds of chemo and had her eye removed. Over the past couple months, the family has been confined to either their home or the hospital.
The good news is that Kinsley’s cancer was contained to her eye so with the enucleation of the eye and after a few more months of precautionary chemo, she will have a full recovery! Praise the Lord.
During their time at home, Kinsley and her parents used baking as a distraction from what she was going through. Kinsley requested to start her own cookie business. He parent are starting Kinsley’s Cookie Cart, a non-profit that will focus on Kinsley’s love of baking cookies and bringing happiness to others, but then with our outreach, it will do so much more to raise awareness and funding for pediatric cancer.”
MADELYN “MADI” ADAMS
Madi was diagnosed with Juvenile Myelomonocytic Leukemia (JMML), a rare childhood leukemia, when she was four months old. Her only option for survival was a bone marrow transplant and lucky for us, Riley has the only Pediatric Stem Cell Unit in the state of Indiana. We visited Riley weekly (sometimes more than once every week) for blood and platelet transfusions. At eight months old, Madi received an allogenic bone marrow transplant. Her cells came from an anonymous 21 year old male, and we couldn’t be more grateful for his gift of life!
After nearly three months inpatient at Riley, we were released to go home and we went back to weekly clinic visits at Riley. Over the following two years we moved those visits out to every six months! This year – this week, March 27 – we are celebrating her fourth “re-birthday!”
Madi is a sweet and smart little four year old. She is creative, kind and quite a little comedian. She is medication free and living every day to its fullest, like any four year old should. We are so excited to see where life leads this sweet little miracle we were given!
My name in Nick Foster. I am 19 years old, and I kicked Cancer’s ass!
It was a small miracle the way we stumbled upon my tumor. I had been experiencing normal, yet constant stomach pain for about 5 months starting in Fall of 2017. However one night the pain became more isolated and sharp, tender to the touch. I visited the emergency room that night and they found a softball sized mass in my abdomen.
Three days later, April 16th 2018, I went into surgery at Riley Hospital for Children. The goal was to remove the mass. However, after actually seeing the tumor, the oncologist concluded that it was malignant, a nicer way of saying Cancer. The good news was that it was contained to a single tumor, meaning it had not spread anywhere so the treatment could be more localized. A few weeks later they diagnosed it as Ewing’s Sarcoma.
Over the next several months, I underwent 5 surgeries, received 14 rounds of chemotherapy, slept 67 nights in a hospital bed, spent 1,671 hours at Riley Hospital, took 3,472 pills, and received just 1 haircut.
I finished my last treatment on the morning of Christmas Eve 2018–meaning I got to spend Christmas at home. My first couple of scans have been clear, and my hair is up to a buzz cut now. I’ll be starting college at IUPUI in August 2019. The past year has been a challenge, but I can happily say that I made it through with the help and support of family, friends, strangers, and the staff at Riley.
When 6-year-old Piper Lyon from Indianapolis first became sick, doctors thought she had tonsillitis. By the time she was referred to Riley Hospital for Children, Piper had developed tumors in her head, chest, lung, stomach, and kidneys. She was diagnosed with Burkitt Lymphoma and underwent five months of chemotherapy, spending more time at Riley than at home. Today Piper is cancer free. Her mother Kim credits programs like Child Life and pet therapy with making the hospital feel more like home.
Quinn Ealy was diagnosed with Stage 3 Anaplastic Large Cell Lymphoma in October of 2018, at the age of 16.
He had just started his sophomore year in high school, focusing on engineering. He is an avid Ohio State football fan and loves playing and watching basketball. He was very fortunate that his favorite aunt works as a hemoc nurse at Riley, and was a wonderful source. He concluded 6 months of intense chemo in March 2019 and is now cancer free.
He is now back at school, working hard to catch up and plans on getting his drivers license this summer.
Sloane was diagnosed in November of 2017 with stage 4 bilateral retinoblastoma, advanced cancer in both of her eyes. She was only 15 months old. This particular cancer is very rare, and Riley is the only hospital in Indiana that has a retinoblastoma specialist. Immediately upon diagnosis Sloane underwent further testing which showed us this cancer was caused from a genetic mutation and something that she will live her life with.
From November 2017-May 2018, Sloane went through chemotherapy at Riley every 4 weeks. Thursday’s and Friday’s were our chemo days. The summer involved a few trips to NYC for further treatment recommended by her doctor for Sloane’s right eye. Sloane underwent multiple treatments directly to her eyes to treat the cancer on top of chemotherapy. While her tumors behaved well while she was going through chemo, in June of 2018 the cancer started worsening in her left eye. Last July Sloane had her left eye removed at Riley to keep the cancer from spreading to her brain. While that surgery proved to be no walk in the park, she finally got her new prosthetic eye just before this past thanksgiving.
Sloane is in remission now. She is happy and thriving and keeps everyone around her laughing. Sloane goes back to Riley every 3 months for check ups with her oncologist. She also has eye exams under anesthesia every 6-8 weeks with Dr. Plager, her ophthalmologist. These eye exams will be frequent for the next few years as she’s still at a high risk of her cancer coming back until age 5 or 6.
Sloane loves her big sister Audrey, loves gymnastics and dancing, and is one of the funniest kids I’ve met. Her spirit is high, and we always say cancer never stood a chance against her.
At just six years old, Tatum Parker began a year-long battle with Ewing’s sarcoma. She underwent three major surgeries and 13 rounds of chemotherapy to beat her cancer, but unfortunately, she had a relapse in December 2008. Tatum bravely fought cancer for another year, and now she’s been cancer-free since September 2009!
In August of 2008, Tatum and her family started Tatum’s Bags of Fun, which soon became the The Tatum Parker Project. Today the organization gives backpacks to every child diagnosed with cancer in Indiana while also donating money to endowments and organizations that fund pediatric cancer research.
Tatum’s role as an activist for pediatric cancer research keeps her passion moving forward. It will always be a part of her life, which may include a career in medicine to help fight pediatric cancer in the trenches. Currently Senior Class Vice President and Counterpoints Co-President at North Central High School, Tatum has lived a lifetime in just 18 years.
TYLER TRENT (Honorary Analyst)
Kevin will be dedicating his last mile to national hero and Purdue Athletics super-fan Tyler Trent.
We were thrilled to have Tyler as our guest of honor at the 2018 Pink Balloon. It was his speech that night that helped inspire Kevin Koke to run the Boston Marathon tomorrow.
Tyler lived a selfless, passionate life that inspired millions across the country. He battled osteosarcoma three times before he passed away on January 1, 2019 at age 20. He was featured on ESPN, received the Sagamore of the Wabash, and won Disney’s Wide World of Sports Spirit Award.
Tyler dreamed of accomplishing so many things — among them, doing freelance analytics for the Indianapolis Colts.
Tyler also dreamed of being a sportswriter for the IndyStar. Before he passed away, he wrote and published his story in “The Upset.” You can order a copy today at: tylertrentbook.com
Tyler wanted to use his legacy for good and make an impact, which he has already achieved tenfold. We are so grateful to have known him, to have learned from him, and to be able to continue his mission to raise funds for pediatric cancer research.
June 3rd, 2014. The day that changed our family dynamic with 4 words: “Your son has cancer.”
After a month of unexplained pains and fevers, Zane was diagnosed with Acute Lymphoblastic Leukemia and underwent three and a half years of treatment. He is in remission and trying to ﬁnd his “new normal” post-treatment, which includes braces and Drivers Ed! Although the battle was hard at times, he persevered. At 10 years old he stated, “I don’t feel sorry for myself, I just want to get through it.” Just like that, he led the way.
In 2014 a pale, bald 10 year old became our hero. Zane “rang out,” signifying the end of treatment in September 2017 and hasn’t looked back. We are grateful and blessed.