Memorial Regional Cancer Center 2013 Annual Report: Pinwheel Heroes: Superkids Fighting Cancer


December

What do you want to be when you grow up? A pediatric oncologist.

It was the powerful experience Paige had growing up with cancer that inspires her to follow in the footsteps of her pediatric oncologists. Though only 5 when diagnosed with acute lymphoblastic leukemia (ALL), Paige vividly remembers the outstanding care she received and the deep connection she formed with the staff at the Memorial Pediatric Hematology/Oncology Clinic.

Paige"The nurses are like extended family and the doctors were so good to me," she recalls. "Seeing how they care for the kids makes me want to become a doctor. When I come to the unit to visit, it’s motivation for me to make this my career. I can relate to these kids and can make their experience better because of what I went through."

The senior at Elkhart Memorial, who has been cancer-free for the last 12 years, is well on her way to such a profession. Paige’s mom, Tammy, also had her career path impacted from her experience as the parent of a child with cancer. She joined the peds oncology team as Parent Advocate shortly after Paige completed therapy, and has been a valuable asset to the Clinic by assisting parents walking a similar path.

Paige recalls some of the tougher moments battling cancer, including vomiting from chemotherapy treatments as well as losing her hair. But there are uplifting memories as well, such as the time spent making crafts with the nurses.

"I remember mostly the good things about it and not the bad things," she says.

And there is evidence to prove it. Ten years have passed, but Paige has kept the stuffed animal she received from the Clinic’s gift box, one of the signature elements kids treasure about the Memorial program.

"Even with cancer, I was a happy 5-year-old," she says.

And Paige, an elementary school tutor and volleyball coach, is a happy 18-year-old today. She visits the clinic once each year for follow-up.

Despite the hardships as a kid, Paige says she wouldn’t change the past even if she could.

"I'm glad for the experience," she says. "It brought me closer to God and my family closer together. I've learned you don’t take anything for granted because there are some things you cannot control. You have to live in the moment."

It's that kind of lesson she wants to share now with other cancer patients and in the future as a doctor.

"Don't dwell on the negative aspects of being a cancer patient," she says. "It may be a different life, but you can still be yourself and live positively."


November

What do you want to be when you grow up? A salon owner.

It’s not uncommon for your family’s health history to include heart disease, diabetes or high blood pressure, but when something like lymphoma makes the list, it’s particularly worrisome.

This is the case with Stephanie Stanton’s family. So when the 21-year-old from Buchanan, Mich., learned the disease had struck her, she was not exactly shocked.

Stephanie was diagnosed in May 2012 after doctors discovered a large tumor in her neck. The good news was she was the first in her family to have the more curable Hodgkin’s lymphoma (vs. non-Hodgkin’s).

“When I learned I could be treated as a pediatric patient because I have a pediatric cancer, and this way treatment would be shorter and not as potent, I chose Memorial Children’s Hospital,” Stephanie explains. “The great thing about being treated here is I get presents, snacks and I get to play Bingo.” Research shows young adults with pediatric cancers have better outcomes when treated according to pediatric protocols, and Stephanie had a take-charge attitude from the start.

“I wanted to start treatment right away so I could check it off my list and get back to my normal life,” she says.

Optimism goes a long way when faced with a new normal like cancer, but so does a solid support system. “Everyone at Memorial Children’s Hospital, including really little patients whose battles are worse than mine, want to help, and that is both humbling and inspiring,” Stephanie says.

An iPhone doesn’t hurt, either. “I don’t leave home without bringing two things to my clinic visits – my mom and my iPhone,” she says. “I’m not sure which is more important.” Stephanie’s affinity for hair led her to enroll in cosmetology school, with hopes to open a salon one day. When she learned she would lose her hair because of chemotherapy, it wasn’t welcome news. “My hair was so long and amazing I did not want to watch it fall out,” she says. “I knew I wanted to shave my head and get it over with, but it was tough.”

To share the burden, Stephanie’s friends and family organized a head shaving party in her honor the week before her treatment began. Since then she wears a trendy wig.

The latest news? She is in remission, so it won’t be long before healthy locks emerge.

“No matter what life throws at you, it is thrown at you because you can tackle it, not because it will defeat you,” Stephanie says. “Knowing you are going to survive and having that drive makes
the difference.”


October

What do you want to be when you grow up? Happy.

With no history of cancer, the Butcher family of LaPorte was stunned by the news their son, Prestin, had a brain tumor at the age of 11.

PrestinWhile the initial diagnosis was made at Riley Children's Hospital in Indianapolis, the Butchers decided to seek care closer to home at Memorial Children's Hospital, and they haven’t regretted their decision.

"We love it here because they are a fantastic team in partnership with Riley," says Dana Butcher, Prestin's mom. "Memorial considers the best interests of Prestin and has supported each one of us as a family."

Prestin was diagnosed with medulloblastoma in June 2011. Medulloblastoma is a highly aggressive brain tumor typically seen in young children. Although relatively rare, it is the most common brain tumor in children, accounting for 25 percent of all pediatric brain cancers. Approximately 500 cases are diagnosed in the United States each year.

"It was scary news," Prestin says, "but sometimes things happen that you are not prepared for, and you have to face it. And thanks to Memorial, cancer fears me."

Prestin's favorite part of his visits to the Memorial Pediatric Hematology/Oncology Clinic are the massages from Jeff Nixa, massage therapist and Prestin's best buddy.

"Prestin's a great guy with a great heart," Jeff says. "I have been impressed with his bravery and have never heard him complain."

Distractions are important so Prestin doesn't mind busying himself on the iPad a family friend gave him, or welcoming his school pals who visit him at the hospital.

Outside the hospital walls, Prestin likes to swim, camp and watch movies. He'll enjoy those activities even more now that he's conquered the cancer that fears him.

"Memorial, the prayers of friends and family, and our son's fighting spirit mean we can celebrate and say our son is a cancer survivor," Dana says.


September

What do you want to be when you grow up? A video game designer.

A 17-year-old all-star athlete is no stranger to competition, even when the competition involves cancer cells.

When Ronald Kimp's mom, Monique, noticed some sports-related bruises on her son that were not healing, followed by a bloody nose and complaints his side was hurting, not to mention how much he was sleeping, she knew something was wrong.

But a diagnosis of acute lymphoblastic leukemia in May 2010 and subsequent treatments, could not keep the sports-driven teen down. So far, Ronald is achieving his goal for the 2012-2013 school year to participate in all four of the sports he loves - football, baseball, wrestling and track.Ronald

Ronald's initial diagnosis was made at Riley Children’s Hospital in Indianapolis. Then the Kimps learned Memorial Children's Hospital partners with Riley to coordinate treatment plans for pediatric oncology patients.

Like many children in Indiana, Ronald lives more than 60 miles from any center that provides cancer therapy for children in the state. Receiving care at Memorial’s Pediatric Oncology Clinic, one of only four such programs in the state, made life more manageable for the Kimps.

"It was a no-brainer to come to Memorial to shorten our commute from Gary," Monique says. "Not only do they coordinate Ronald’s care with Riley, but we could not ask for better doctors and nurses than the ones at Memorial."

"The nurses are my favorite," Ronald adds. "They have even given me a nickname — 'Renaldo.'"

The same coaches since middle school have coached "Renaldo," and they have been among his biggest aficionados both on and off the playing field.

"My coaches know my limitations and have helped me so I can play again," Ronald says. "I've taken my conditioning and training slow and take breaks when I need them."

Because of his port, for the last two years Ronald could participate in baseball and run track, but had to give up wrestling and his favorite, football, in which he plays wide receiver. "This year I intend to play them all," he says, determined.

Ronald definitely has the winning score against cancer, and he’s scored some points for his positive attitude with mom. "Despite how bad he has felt at times, he never complains," Monique says. "I tell him all the time he is my hero."


August

What do you want to be when you grow up? A firefighter.

It’s an impossible assignment for anyone to contain the happy and boundless energy bursting from the body of 10-year-old Maria. Diagnosed with high-risk acute lymphoblastic leukemia (ALL) in April 2012, Maria was encouraged early in her journey when a fellow classmate stood up and announced to their fourth grade class: “If anyone can beat cancer, it’s Maria.”

That moment in time changed everything for Maria.

“I felt like I wasn’t alone at that point,” she says. “I realized others have gone through this before.”

Maria is enrolled in the most current Children’s Oncology Group clinical trial for children with high-risk disease and receives all of her therapy at the Memorial Pediatric Oncology Clinic. Treatment for girls with ALL is approximately 2½ years in duration, so the proximity of the Memorial clinic has been especially important to her family. Maria’s parents, David and Ashley; younger brother, Phillip; and church community support her.

In addition to the short distance from their home to the hospital, her parents are raving fans about the level of care at Memorial that extends beyond clinical aspects.

“The doctors here are tremendous and the child life specialists are wonderful. And the nurses simply feel like family,” says Ashley.

Because it feels like home at Memorial Children’s Hospital, Maria doesn’t hesitate to bring everything but the kitchen sink: a pillow, blanket, stuffed animals, movies and electronic gadgets. But even without a toy, she can entertain herself by dancing or playing a game of hopscotch on the hallway floor.

Despite her disease and treatments, Maria managed to win her class’s physical fitness test. Freeze tag, soccer, softball, gymnastics and her scooter make her favorite things list. But most of all, she likes horses, and riding them when she can.


July

What do you want to be when you grow up? A school teacher.

Memorial Hospital of South Bend is like a home away from home for Robyn Clements and her father Scott, who have been traveling from Goshen about every week since October 2011 for her cancer treatments.

RobynIt was a month earlier when Robyn, 12, was diagnosed with Ewing sarcoma and ever since she has undergone intense therapy resulting in multiple hospital admissions. Robyn has received the most advanced treatment for Ewing sarcoma at Memorial rather than in Indianapolis or Chicago, which has simplified life for her parents and sister.

Keeping the family together during a health crisis has been a tremendous benefit to the Clements family, with travel time to the hospital just 30 minutes to receive exceptional care at the Memorial Children’s Hospital Pediatric Oncology Clinic.

“Memorial has been excellent,” Scott says.

Despite cancer’s hindrances, the fourth grader remains as much a kid as anyone her age. Whenshe’s not playing with Barbies, she rides her bike, frolics at the playground, or pops in her earbuds to listen to Disney songs on her iPod.

Due to the generosity of the Indiana Children’s Wish Fund, she was able to travel with her family to Disney World and Sea World for a recent weeklong vacation. It was an experience Robyn won’t soon forget.

“My favorite parts about the trip were riding roller coasters and petting the dolphins at Sea World,” says Robyn.

Cancer packs a punch, but Robyn is a survivor.

“It takes a lot of strength and courage to go through this at a young age, and she’s had a good attitude about it,” says Scott.


June

What do you want to be when you grow up? Jesus: A lawyer or a hair stylist. Jessica: A clothes designer or a doctor.

Cousins Jesus Cazares, 15, and Jessica Chapa, 10, have more than just family in common. They are both fighting leukemia. And despite their young ages, they have endearingly supported each other through many difficult times.

Jesus and JessicaBoth from Elkhart, Jesus was diagnosed in March 2010 and Jessica 19 months later in October 2011.

"No one knows what Jessica is going through like Jesus," says Lucy Chapa, Jessica's mom.

"I didn't know what leukemia was until my mom told me," Jessica says. "Jesus helped me know what to expect."

"I try to help her not feel afraid, but sometimes, to be honest, she helps me not feel afraid, too," Jesus says.

When Jesus was diagnosed, he and his family were living in Mexico and decided to move to his birthplace in Indiana to receive the quality and compassionate care offered at Memorial Children's Hospital.

After Jessica was diagnosed, there was no doubt in the Chapa's minds she would be treated at the same place. So it became a family affair, with the cousins often at the Pediatric Hematology/Oncology Clinic at the same time for treatments.

The peds oncology team at Memorial Children's Hospital works tirelessly on behalf of the many young people facing various forms of cancer.

"The hospital is a great place to hang out and be around others who get what you're going through," Jesus says.

Time is well-spent at the hospital, and not only because they receive strategic cancer care. Jesus indulges in the hospital's video games, while Jessica likes hanging out with the nurses.

"The nurses and doctors are always making us laugh and trying to help make us comfortable," Jessica says.

Family and friends have also played a vital role in rooting for the courageous cousins. One relative in particular has stepped up to help Jesus, who needs a bone marrow transplant.

"My brother, Julio, is a 100-percent match and at only age 10 is willing to undergo the procedure on my behalf," Jesus says.

Cancer is but one aspect of their young lives. When they're not at the hospital, Jesus likes to draw and watch TV, and Jessica likes to skate, go bowling and to the movies.

Their advice to other young people facing cancer?

Jessica – "Stay strong, be positive and pray."

Jesus – "You are not alone. Be brave. There are a lot of things to live for, and your whole life is ahead of you."


May

What do you want to be when you grow up? Undecided.

Sam Grewe, 14, is a no nonsense kind of kid. He’s the first to say he doesn't like his cancer and he doesn't like his cancer treatments. Period. But when the motivated athlete shoots, he scores.Sam Grewe

The straight A student from Middlebury was diagnosed with osteosarcoma in December 2011 at Riley Children's Hospital in Indianapolis. When the family discovered Memorial Children's Hospital partners with Riley, they knew Memorial was the best choice for quality care nearby.

Sam's cancer affected his femur and hollowed out the bone. He underwent an innovative procedure called Rotationplasty, and now his foot is positioned backwards and reattached to the rest of his leg. His ankle now functions like a knee and he has a prosthetic to wear so he can walk and play sports.

Sam's paid his dues and spent more time than most at the hospital since his diagnosis – 75 to 80 nights in fact. He's on round 15 of 21 intense chemo treatments, each lasting five to 10 days. It takes its toll emotionally, mentally, and physically, but Sam lives by his nickname, "SamStrong."

"Cancer has thrown so much at me over the last year, but I'm still standing," Sam says. "With the support of others and because my will to live is bigger than this disease, I keep going. No matter what it takes."

Sam is a stellar athlete and happiest when he can be at school and participate in sports. He was pumped when he caught the attention of Notre Dame Head Football Coach Brian Kelly. Inspired by Sam's story, Coach Kelly adopted him as part of the team's Believe Like a Champion program.

An official "adoption" ceremony was held April 2, 2012, two days before Sam's surgery, in which the whole team wore "Grewe Crew" T-shirts in Sam's honor, stood up to speak to him, and gave him an autographed football, his own jersey and helmet.

That same night Mark Herzlich, linebacker for the New York Giants, Skyped with Sam. Herzlich was diagnosed with a rare form of bone cancer in May 2009, and was determined to rid his body of the disease. By September 2009 he was cancer free, and since then encourages others, like Sam, to fight to win against cancer.

Sam's battle isn't over, but his last scans were clear, and he is getting a glimpse at an all-star, cancer-free future.


April

What do you want to be when you grow up? A babysitter and nurse.

When you look at 6-year-old Tatum Gumpf, all you want to do is squeeze her rosy cheeks, which have managed to stay rosy despite chemotherapy.

Tatum was diagnosed with acute lymphoblastic leukemia in July 2010 and finished her treatment in September 2012. Her diagnosis came from Riley Children's Hospital in Indianapolis, which recommended she begin treatment at their partnered site, Memorial Children's Hospital.

Her mom, Deanna Gumpf, head Notre Dame girls' softball coach for 12 years, was happy to learn her daughter could receive excellent care right in her hometown.

Tatum and her mom"We love coming here because the staff make it fun and there is not one scary thing about this place," Deanna says. "That is a special trait about the Pediatric Oncology Clinic. Their fun-loving spirits make getting spinal taps and accessed for ports a little lighter experience."

When the diagnosis came, Tatum felt sad and scared. So did mom and dad.

"It's the worst news we could have gotten," Deanna says. "But it's amazing the response we've received from family, friends and the community."

Last school year Tatum only made it to school 30 days due to a fragile immune system. So Tatum's kindergarten teacher came up with a creative way to engage her with the class through daily Skype sessions.

Deanna said even strangers have rallied behind Tatum and given of themselves to help her cause.

To pay it forward, Deanna and her softball team created the Strike Out Cancer Weekend, in which they devote one game from the regular season to raise funds and awareness for Memorial Children's Hospital. To date the team, along with the University of Notre Dame, have raised more than $50,000 for the Pediatric Oncology Clinic at Memorial.

Tatum looks forward to playing shortstop one day and making coach mom proud. But she's always a champion in the eyes of her family, and not only for achieving remission after going to bat against leukemia.

Tatum's hero? Ask her who and watch a big smile come across her face as she says, "My big brother, Brady."


March

Saint Mary's student beats cancer.

Someday you might read the memoirs of Elizabeth Majewski. It's still early, but the 22-year-old English major has experienced a remarkable journey that began at age 2 when she was diagnosed with Wilms tumor, a type of kidney cancer in children. Now a senior at Saint Mary’s College, Elizabeth was in remission by age 3 and has remained cancer-free for the last 19 years.

Undergoing chemotherapy was challenging at first for Elizabeth and her family. In addition to the treatment’s side effects, Elizabeth and her parents had to travel each week to Indianapolis for her chemo. That all changed in 1992 when Memorial’s Pediatric Oncology Program began. Elizabeth was the first of many patients that would follow in her footsteps to receive breakthrough care for childhood cancer at Memorial.Elizabeth

"Having Memorial so close made a big difference in the lives of my parents and me," says Elizabeth. "To know they could count on such wonderful care for me close to home was a huge comfort to them."

Her memories of Memorial are recalled with welcome nostalgia, particularly toward the fun-loving nurses.

"Most of my nurses from when I was little are still in the pediatric oncology unit, so their dedication to such a wonderful program over the years really shows," she says.

An avid runner, Elizabeth remembers very little about her cancer experience, yet it has remained a significant part of her life. She stays connected through holiday parties, reunions, summer camps and most recently with her internship, where she encouraged kids facing cancer just like she did.

"Much of the internship work I did this past summer was directly related to my experiences as a cancer survivor," says Elizabeth. "I had the privilege of working with Camp Watcha- Wanna- Do, which I attended as a child. This camp provides a wonderful week of activities for children who have had or have cancer or a brain tumor. I love being connected to the same opportunities provided to me as a child."

Watching these children heroically face cancer is like a muse to the aspiring writer.

"I get motivated by their strong will and courage through this difficult journey," Elizabeth says. "Out of this darkness, there are many important friends and memories created. As a 19-year cancer survivor, I want to tell those struggling with the disease there are many great opportunities waiting for them in their futures. Motivation, courage and strength are traits they will gain from their struggles."

What do you want to be when you grow up? An English professor or book publisher.


February

What do you want to be when you grow up? A farmer.

Wearing blue jean overalls, there are few things more fun for the nearly 2-year-old Caleb Hoppe than pushing around his John Deere toy tractor. Caleb may have acute lymphoblastic leukemia (ALL), but this toddler rules the roost along with his twin brother, Carsen.

The twins' parents, Seth and Andrea, of Hamlet, were understandably uneasy and filled with uncertainty while they awaited Caleb's diagnosis in May 2012. Caleb was referred to Memorial Children's Hospital when his pediatrician detected abnormal blood work, and his parents' anxiety level diminished when physicians immediately outlined a treatment plan for their son.

Thanks to Memorial's strong connection with cancer research, Caleb is enrolled in a Children's Oncology Group clinical trial for leukemia that offers the most current, front-line therapy for children with ALL. And in just one month after chemotherapy, Caleb achieved remission.

To sustain remission for the long haul, the standard treatment duration for boys with ALL is 3 1/2 years. So at least once a week, the Hoppe family makes the nearly 50-minute drive to Memorial's Pediatric Hematology/Oncology Clinic for Caleb's therapy.Caleb

The Memorial atmosphere is quite different from what they experienced at Riley Children's Hospital in Indianapolis, where Caleb underwent initial treatment last spring. While the Hoppes praised the medical care provided at Riley, they felt disconnected within its larger medical environment compared to the more intimate and personal setting found at Memorial.

"The personable and knowledgeable staff at Memorial Children's Hospital have been great," says Seth. "Even when we email Dr. Morrison on the weekend with questions, she responds to us quickly."

Despite ongoing treatment, Caleb has remained an energetic little boy. Whether it's playing toy trucks complete with lots of "vroom vroom" sound effects, or riding high in the perch of his great-grandpa Jim's tractor, life is pretty good for Caleb. Though nothing is certain with cancer, the Hoppe family is confident their son will keep revving his engines to beat the disease long term.

"We are so grateful to everyone at Memorial who has helped care for Caleb and filled the journey with so much hope and promise," says Andrea.


January

Introducing Destiny - January's Pinwheel Hero of Memorial Children's Hospital

Crossing her right leg over her left as she doodles on her iPad, 9-year-old Destiny is a sort of paradox – a blend of adult wisdom and childlike wonder. This fusion is a result of living with a brain tumor called juvenile pilocytic astrocytoma, diagnosed when she was only 10 months old. Due to the type of tumor, she has required chemotherapy on multiple occasions over the past eight years.

DestinyDestiny's plan of care is an outstanding example of the teamwork between Memorial's Pediatric Hematology/Oncology Program and Riley Children's Hospital. The hospital relationship has allowed Destiny and her mom, Angie, to stay close to home in Michiana for cutting-edge therapies.

Destiny, who charms just about anyone who comes in contact with her thanks to long, curly hair and a pearly smile, hasn't known a life without cancer. But this disease and the accompanying visits to Memorial for treatment haven’t dampened her spirit. Maybe that's partly why despite ongoing chemotherapy, her black curls continue to grow as thick and full as ever.

"A brave and strong role model" is how Angie describes her daughter. By Destiny's own example, she helped a cancer-stricken classmate feel more at ease among the other students.

"She is the kind of child who even when she’s sick from the side effects of chemo, still makes people smile with her positive glow," Angie says.

While Destiny will continue this round of chemo through February, Angie remains steadfast about her daughter’s ability to keep going every day.

"Whatever it takes," Angie says.


Welcome

You are about to enter a world of children who have a story to tell, and they each play the part of the hero. We like to call them Memorial Children's Hospital Pinwheel Heroes, and they are the reasons we love our jobs, because we are inspired by these Superkids and their journeys every day.

Colleen Morrison, M.D. with Superkid MariaOur team is excited to feature 13 Pinwheel Heroes whose engaging stories get us thinking about life and what is most important. We are also thrilled to inform you that survival rates for children with cancer have improved dramatically over the past 30 years, which gives our program the wonderful opportunity to care for hundreds of cancer survivors.

Started in 1992 in affiliation with Riley Children's Hospital in Indianapolis, the Pediatric Hematology/Oncology Program at Memorial Children's Hospital has evolved and grown in both the services it provides and the population it serves. One of only four centers for Pediatric Hematology/Oncology care in Indiana, our program provides care to children from an approximate 60-mile radius of South Bend, giving families the opportunity to stay close to home while receiving state-of-the-art care.

We provide cutting-edge diagnostic ser