Meet the Kids

Ava

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“Yay! It’s surgery day!” exclaims Ava to her mom, Ashley, each time she heads to the operating room at Gillette Children’s Specialty Healthcare. Why does Ava so eagerly anticipate her surgeries? Although she enjoys the crafts, nighttime activities and the surprise of a new toy, Ashley explains the more serious reason for her daughter’s excitement: “She knows it fixes her pain.”

Ava has a rare condition called multiple hereditary exostosis, a condition that causes boney tumors to grow throughout her body. The tumors, though benign, must be surgically removed to prevent discomfort and permanent bone deformities, such as limb length discrepancies and limited joint movement.

At 9 years old, Ava has already undergone 10 surgeries. She’ll likely need surgeries every year until she reaches maturity. But the process is made easier, says Ashley, by Ava’s orthopedic surgeon, Stephen England, MD. “He listens to our concerns and genuinely cares. I can call with a question—even on the weekend—and he’ll get back to us right away.”

Because Ava often goes to school wearing one or more casts, she’s developed a straightforward explanation for her classmates. “I just tell them I have a bone disorder. That I grow extra bones and my doctor takes them off.”

When Ava isn’t recovering from frequent surgeries, she loves creating dance routines and planting her garden. And when surgery becomes necessary she counts on her beloved cat, Charlie, to comfort her. “Charlie likes to lay by me after my surgeries,” says Ava. “He helps me feel better and knows not to touch the places that hurt.”

Ashley, who has the same genetic condition as her daughter, says Ava approaches it with more positivity than she did as a child. “Ava never asks ‘Why me?’ This condition can be rough and even painful, but she handles everything with bravery and happiness.”

Donovan

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Donovan approaches the waves on Waikiki Beach the way he approaches everything in life—with passion and enthusiasm. For his mom, Kelley, watching her 16-year-old son master the new skill goes beyond typical motherly pride.

“When he was born, we didn’t know if he would ever be able to eat or drink, run or jump, let alone speak,” she explains. But following a series of complex surgeries and months of hospitalization, Donovan did all of those things—and more—living up to his name, which means “courageous.”

Donovan was born with esophageal atresia, a condition that occurs when the upper part of the esophagus doesn’t connect with the lower esophagus and stomach. Other physical anomalies—in Donovan’s case, severe scoliosis— can accompany the condition.

As Donovan grew, his Gillette Children’s Specialty Healthcare team helped manage his scoliosis with bracing and physical therapy, until a routine X-ray in 2014 revealed that his spine had worsened to nearly a 94-degree curve. “We learned that he would need a life-threatening, yet life-saving spine surgery—very quickly,” says Kelley. In addition to the curve in his spine, Donovan had multiple fused ribs which surgeons at Gillette separated at the time of the spine surgery.

“The surgery came with risks, risks as serious as paralysis or death,” adds Kelley. “We’re forever grateful to the pediatric orthopedic surgeons at Gillette who took Donovan into their hands. They’ve allowed him to just be a kid.”

Felix

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Felix came to Gillette Children’s Specialty Healthcare in early 2016 with a severe form of epilepsy that no medication could touch. He was having dozens of daily seizures, each one damaging to his brain. Jen and P.G., his parents, transferred to Gillette to learn more about their son’s condition and try new treatments. A room in the Pediatric Intensive Care Unit became the family’s home base for two months as specialists did everything possible to solve the mystery of Felix’s disorder.

And in that time, Felix’s Gillette caregivers loved him.

Chubby and dapper, Felix liked being cuddled to his parents’ chests because it helped his breathing and he enjoyed the closeness. His 3-year-old brother, Oscar, came to see him often.

Gillette staff members filled the walls of Felix’s room with brightly colored artwork.

Most parents celebrate their child’s first birthday, but Felix’s parents weren’t sure they’d have him for that long. They celebrated his 5-month birthday instead on March 11, 2016.

Nurses, social workers and child life specialists all showed up with gifts in hand to wish Felix a happy birthday. Felix’s doctor flagged down the Gillette staff photographer so the family would have photos.

Everyone in Felix’s PICU room sang Happy Birthday, the cake was cut, and Felix got his first taste of chocolate. He opened his eyes after the cake touched his lips—a moment his dad described as “magical.”

But the stark reality of Felix’s condition was never far from the minds of his caregivers or his family. During the party, Felix had three seizures. His doctor comforted him through every one.

Felix went on to celebrate his 6-month birthday at Gillette. He passed away two weeks later surrounded by his family.

Each year, Gillette saves or improves the lives of thousands of children. But some children, like Felix, have progressive conditions or the science simply hasn’t advanced far enough for us to save their lives.

Peyton

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On May 17, 2013, 16-month-old Peyton ran across the living room, slipped, and hit his head on the hardwood floor. The impact struck him unconscious—then, he began having seizures. Peyton’s dad, Mike, is an Emergency Medical Technician (EMT) paramedic. His work had prepared him for many things, but nothing could prepare him for this.

Mike called 911 and asked that his son be taken to Regions Hospital, knowing that it partners with Gillette Children’s Specialty Healthcare to operate a Level I Pediatric Trauma Center—certified to provide the highest level of care possible for injured children.

Doctors quickly discovered that Peyton’s brain had crashed back and forth inside his skull, causing internal bleeding. Debbie Song, MD, a pediatric neurosurgeon at Gillette, provided lifesaving surgery to relieve the pressure on his brain.

“As a medical professional myself, I expected outstanding medical care from Regions and Gillette,” says Mike. “Even so, the way Gillette took care of us as concerned parents was astounding. We’ll never, ever forget that.”

Although the surgery was successful, no one could predict how fully—or if—Peyton would recover. “As a parent, you just want answers, but no one could tell me my son was going to be OK,” remembers Mike. “It was serious.”

To his parents’ joy, Peyton did begin to recover. Rehabilitation helped him regain skills such as walking, eating, talking and drinking. “We got to experience milestones—for a second time—that we hadn’t been sure he’d ever be able to achieve again,” says Mike.

Today, Peyton is fully recovered from his traumatic brain injury. “You wouldn’t know that anything had ever been wrong with him,” says Mike. Peyton loves watching football and wants to become a firefighter like his dad.

“We consider Gillette to be part of our family now,” says Mike. “They helped us through the most terrible time in our lives.”

May 17 has become a day of celebration and gratitude. Each year Peyton and his family bring treats to the Stillwater Fire Department first responders who helped save his life.

Brooklyn

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Three-year-old Brooklyn is an energetic little girl who loves the color purple and her stuffed animals. She also thinks IVs, chemo shots and blood draws are just a part of growing up.

Since being diagnosed with acute lymphoblastic leukemia in November 2015, she’s become so familiar with toxic treatments and therapies; she now tells nurses which arm to draw blood from for labs.

When Brooklyn was 2 years old, her parents, Grant and Michelle, thought she was experiencing growing pains.  She was incredibly tired and complained of leg pain in between playing.  As she became more exhausted and her legs hurt so much that she couldn’t walk steadily, they took her to her pediatrician. After receiving several blood labs and x-rays, the pediatrician told her parents to pack an overnight bag, pick Brooklyn up from daycare, and drive her immediately to the hospital where she had already been admitted.  That’s when the whirlwind started.

At the hospital the following day, Brooklyn was diagnosed with leukemia and began the first stage of treatment which included spinal taps, bone marrow biopsies and toxic chemotherapies. She also began physical therapy shortly after to get movement in her legs back.

Her parents hoped this initial, brutal phase of treatment would put Brooklyn into remission so she would remain on the standard-risk protocol, the less difficult of two paths. If she didn’t end up in remission, she would move up to high-risk and have to go through a series of therapies that would be far more trying.

At points during her treatment, Brooklyn’s blood counts were dangerously low, and she’d need blood and platelet transfusions to keep her going. After one transfusion, Brooklyn fell asleep and started singing the ABCs in her sleep in perfect tune. The heartbreaking contrast between childhood and cancer was never clearer than in those moments. The treatment left Brooklyn with tiny sores in her mouth, unbearable muscle pain and tingling in her nerves that caused her to cry out during diaper changes.

In December of last year, the first phase of Brooklyn’s treatment wrapped up and her family held their breath for the news: Would their daughter take the easier treatment road? Or, would they have to take the harder path? During the first month of treatment, Michelle and Grant had also welcomed their second child, Thomas, into their family —adding an extra layer of stress and joy.  Not only did they have sleepless nights from a child in pain battling cancer, but they also had a newborn to take care of.

The day before Christmas Eve, and a week after the birth of Thomas, the results came back clear: Brooklyn was in remission.

Or so they were told. Two weeks after Brooklyn began the “easier” standard-risk treatment, their family received news from their oncologist on a day they describe as the second-worst day of their lives. A second set of bone marrow results showed Brooklyn was not in remission after all – she was moved up to a high-risk treatment plan with a more harsh, toxic and difficult protocol.

Brooklyn had a severe allergic reaction to one of the chemo drugs which resulted in one of the scariest days of her life. Seconds after an infusion began, she coughed, her throat began closing and she screamed to her mom who was holding newborn Thomas in her arms, “What’s happening, Momma? What’s happening?” and “I can’t breathe! I can’t breathe! ” Nurses immediately drew the drug out of the infusion tubing and administered an epi-pen to save her life.

Doctors replaced eight more infusions of that medication with more than 40 chemo shots, and she went through intense treatment throughout the spring and summer. She is now in the maintenance phase and has finally achieved remission.

Taylor

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Any person who interacts with Taylor comes away with a reinvigorating sense of hope in a suffering world. In Taylor’s 19 years, she has experienced the loss of many close friends, emotional and physical pain from cancer and the devastating news of secondary cancer. But, despite cancer, Taylor’s joyful and graceful disposition leaves an overwhelming sense of purpose: to continue the fight for kids and adolescents like herself.

When Taylor was 15, she started having intense headaches, went in for an MRI, was transferred to an ENT, and finally, she was sent to the Mayo Clinic. In October 2012, Taylor was diagnosed with her first cancer, Ewing sarcoma (bone cancer). Her tumor in her sphenoid sinus was the size of a golf ball, and her prognosis for survival was 15 percent.

Taylor endured 15 rounds of chemotherapy and 31 rounds of sedated proton radiation. After nine months of therapy, she was pronounced “No Evidence of Disease.”

Spring of 2015, Taylor had unexplained feelings of exhaustion. Her good friend Jaimie, who initially was diagnosed with ALL and was later diagnosed with secondary AML, had experienced similar symptoms. After visiting Jaimie in the hospital, Taylor returned to tell her parents that she thought she had also developed the same cancer. After two years of being cancer-free, Taylor was diagnosed with secondary high-risk AML. The excitement of high school graduation and starting college would have to wait, as Taylor had to undergo chemotherapy for AML and then proceed to Masonic Children’s Hospital for Bone Marrow Transplant.

She had a bone marrow transplant (BMT) in the summer of 2015, which she describes as the worst experience of her life. She suffered from heart and kidney failure and went on to develop a plethora of infections as well as Graft-versus-Host Disease (GVHD). GVHD occurs when the donated bone marrow or peripheral blood stem cells view the recipient’s body as foreign and attack it; it is both painful and deadly.  On a good day, Taylor’s chance of survival is 30 percent. One in five patients dies post-BMT before they can leave the hospital.

Taylor’s cancer is gone, but she still suffers daily from side effects.  She became legally blind, had cataract surgery, which will need upcoming revisions, and has chronic joint pain. She also developed Addison’s Disease (a deadly adrenal insufficiency), along with pituitary, thyroid problems and has other significant late effects.

When asked about her journey she said, “Having gone through cancer twice, I have changed who I am. I would never go back to my former, pre-cancer, childish self. I have learned so much during my battles. They have made me a better, more compassionate person.”

Despite the challenges, Taylor began college this fall at the University of Minnesota and recently joined a sorority. She hopes to become a medical worker in the pediatric oncology field.

Nevaeh

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Eight-year-old Nevaeh wears a gold cape in the grocery store. Her hair up in a pony-tail, she’s ready to get to work bagging groceries to fund brain cancer research through her fundraiser, Superkids Never Quit.

Though Nevaeh has always had a tender, compassionate heart, her medulloblastoma diagnosis gave her focus: to defeat the disease so other kids don’t have to go through it.

“Caring for people is a 100 percent of who she is. She never wanted to see us sad when she was in treatment. You couldn’t cry in front of her,” says Tessa, Nevaeh’s mom. “She sees the good in things.”

At age 4, doctors discovered a tumor in Nevaeh’s brain after she had consistent, painful headaches and vomiting. “We were in the ER—I can picture the room still. Just talking about it gives me a pit in my stomach,” says Tessa. “You see the doctors walking outside, and you think they know something.”

After finding the brain tumor, doctors put a hole into Nevaeh’s skull to drain excess fluid from her brain and diagnosed the tumor as being medulloblastoma.

“She never questioned why she was put through this. She’d pray, and she wasn’t angry,” says Tessa.

Nevaeh then endured chemotherapy and, shortly thereafter, proton therapy. Proton therapy is a radiation treatment that uses protons rather than x-rays to treat cancer—and she received it almost 1,500 miles away from home in Jacksonville, FL.

Finishing up treatment and returning to Minnesota, it seemed the therapy had worked. But, routine scans revealed ten more tumors in her spine and brain stem.

And the risks were high for the next treatment, radiation sessions that were close together.  This could cause headaches, seizures and even another brain cancer.

Nevaeh responded remarkably well to the radiation and the additional six rounds of chemotherapy to kill any floating cancer cells.

Today, she wears a brace, has cataracts in both eyes, needs growth hormone as she has no thyroid, and she has hearing aids from hearing loss.

“Sometimes, people think you’re done with cancer once treatment is done, and it’s like if you only knew,” says Tessa. “I just want her to be able to do what she loves to do because there’s a lot she can’t do… I want her to know that if she has a dream and believes in something, she can follow that dream.”

Alex

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While most of his friends are headed off to college, Alex is fighting his latest post-stem cell transplant symptom: a knocked-down immune system and painful shingles that spread over his back, abdomen, head, face and mouth. It’s one of the worst cases his care team has ever seen.

An 18-year-old non-Hodgkin lymphoma survivor, this isn’t the only complication he’s had to overcome. Alex almost lost his life last fall after the transplant, leaving his family terrified. “I don’t think we were ever prepared for what we went through,” said Kirsten, his sister.

First diagnosed with cancer in October 2014 when he was 16 years old, Alex has relapsed twice with two different types of non-Hodgkin lymphoma and has contracted graft-versus-host disease.

Additionally, he has endured twelve months of chemotherapy, full body radiation and a bone marrow transplant.

With that came a slew of painful and exhausting symptoms, so much so that he doesn’t remember whole chapters of his recovery process and relies on Kirsten for the chronological details.

This school year, Alex is continuing chemotherapy and is on steroids to fight graft-versus-host disease. He has three classes left before graduation and will be Skyping into the classroom for his lessons. For a guy who loves to go out fishing, hunting and anything outdoors, not being able to see his friends as much has been especially difficult.

Alex will continue his treatment with a few more rounds of chemotherapy.

“I admire his strength,” said Kirsten. “He’s never had a pity party or used the cancer card. He’s been through hell, and I’m just really grateful he’s here.”

Maddy

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Even as a baby Maddy proved that her vibrant personality, rather than her medical condition, would shape the course of her life. You see, Maddy has spina bifida. But she also has so much more. Extraordinary compassion. A keen and often-sarcastic sense of humor. The uncanny ability to engage with everyone she meets.

Spina bifida is a birth defect in which an unborn baby’s spinal cord fails to develop properly. The condition can also cause other challenges. In Maddy’s case, she had bilateral clubfeet and an omphalocele, an abdominal wall defect in which the intestines, liver and other organs develop in a sac outside the body.

Maddy underwent three major surgeries immediately after her birth. She also began seeing multiple Gillette specialists. “It was easy to trust the experts at Gillette,” says Maddy’s mom, Rachelle. “They had a perfect balance of expertise mixed with love and genuine care about our child.”

Rachelle says the care and encouragement Maddy receives at Gillette has helped build her confidence. “Without Gillette I don’t know that Maddy would be the individual she is,” she adds. Today, Maddy happily answers questions from her peers about her condition.  She helps them understand her wheelchair, for example, by likening it to her ‘legs.’

Maddy sees her condition as an opportunity to spread a message of empowerment. “Maddy once told me, ‘I’m really glad God created me this way,’” says Rachelle. “She wants to be a voice for other kids who think they can’t do things. She wants to show them everything is possible.”

Maddy’s dreams currently include becoming a doctor and saving the white rhinos.

“She’s a warrior,” says Rachelle of her confident and spirited daughter. “She doesn’t have any barriers, and that’s an important part of who she is.” Rachelle calls 8-year-old Maddy her hero.

Colten

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Jamie kisses her 2-year-old son, Colten, goodbye as she leaves for her job as a cook at a local restaurant. Colten has been battling the stomach flu, so she and her husband have spent the afternoon trying to get their usually active son to take it easy.

A few hours into her shift, Jamie gets a frantic call from her husband, Steve, telling her to come to their local emergency room immediately. When she arrives, she learns that she and Colten are taking a helicopter flight to a Twin Cities hospital. Colten’s condition is very serious. He’s unresponsive, convulsing and having significant seizures.

“Our lives changed in an instant,” Steve says. “Things got very dark, very fast.”

An MRI showed inflammation on Colten’s brain, and doctors decided to put him into a medically induced coma to help his brain recover. “They were giving antibiotics, but he kept getting worse,” Steve recalls.

Colten spent 17 days in that hospital before the doctors told his parents there was nothing more they could do. They recommended Colten go to Gillette Children’s Specialty Healthcare for rehabilitation. At Gillette, Colten began a rehabilitation program that included five therapy sessions a day.

Meanwhile, the Gillette neurological team continued to search for answers. It wasn’t long before pediatric neurologist Amanda Moen, M.D., found the answer the family was looking for. She determined that Colten had autoimmune encephalitis—a rare condition in which the immune system attacks the brain.

Moen recommended that Colten try an intravenous drug called Rituximab. The side effects can be serious, so she encouraged Colten’s parents to weigh their options. “That was hard,” Steve says. “But we thought the drug was our best chance of giving Colten back his childhood.”

After the initial five-hour session, Colten began to improve. Over the next few weeks of his hospital stay, Colten was given four rounds of the drug, and he continued his rigorous therapy programs.

“We got our boy back,” Steve exclaims.

“Gillette was our ray of light in a very dark time,” Jamie adds.

Lexyn

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Putting one foot in front of the other hasn’t been easy for Ashley’s family—especially for her son, Lexyn, who began his cancer journey with intense leg pain that left him in tears. Langerhans Cell Histiocytosis (LCH) ate away at his left femur, leaving bones that looked moth-eaten in his scans. And, he had additional tumors lurking in the bottom of his spine and in his chest bone.

On top of suffering through surgery that left a seven inch scar, enduring around 50 scans and 19 chemotherapy treatments, he was under doctor’s strict orders to use a wheelchair and crutches.  For a boy who lives and breathes sports, this was devastating.

It all started a little over a year ago when Lexyn had random leg pain at night, which Ashley thought were growing pains. But the pains became stronger, and on October 22, 2015 it was confirmed: 8-year-old Lexyn had LCH, a disease that strikes only 3 in a million children each year.

He was put on chemotherapy and prednisone therapy, drugs that would leave him throwing up, nauseous and swollen.

In December 2015, Lexyn showed no improvements and his parents had a difficult decision to make: stick with the chemotherapy that showed a mixed bag of results or move onto a different chemotherapy that would derail his quality of life.

They chose to stick with the current plan despite doctor’s recommendations to move onto the more aggressive treatment.

“As a mom, if I had to watch my son’s quality of life decrease, I had to know that I’d exhausted all other options beforehand,” says Ashley. Her “mom-feeling” was right—he was showing progress.

Today, Lexyn is an expert negotiator when it comes to getting permission to move around.  Just this last spring, his doctor told him that jumping was off-limits. “Lexyn asked him to differentiate between a true jump and a jump shot. Needless to say, Lexyn won a small victory and was granted permission for an occasional jump shot,” says Ashley.

So, you’ll find him running up and down the hallway in his house shooting hoops in his mini-basketball net.

“When he’s around you he reminds you of the simplicity of life,” says Ashley.

Lexyn continues chemotherapy treatments every three weeks, with his high dose Prednisone, through November 2016.

Danny

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Danny, 11, wears braces on his legs because chemotherapy left him too weak to walk on his own. With total numbness in his fingers, toes and joints, it takes a lot of energy for him to take even a few steps.

But upon entering Danny’s house, one of the first things you see is an image of David and Goliath, depicting the biblical story about a small young man who beats a giant man despite the odds. On the same table, there’s a series of action figures, dragons and a man with a bow and arrow. His brothers say it’s Danny, slaying the “leukemia dragons.”

And, that’s exactly how Danny is approaching his high-risk T-cell lymphoblastic leukemia diagnosis.

Though leukemia is considered one of the most highly treatable cancers, Danny and his family have found that the treatments for the disease are far from perfect.

After his cancer diagnosis in September 2015, Danny spent 25 out of 40 nights in hospital and lost 20 pounds as he endured chemotherapy, spinal taps, surgeries and feeding tubes in his first month of treatment. He also suffered dehydration, could not eat as swallowing caused him chest pains and he was connected to an IV fluid bag for 18 hours each day.

Because of his severe weight loss, Danny also underwent surgery to have a feeding tube placed in his stomach. He received all medications and fluids through his feeding tube and was fed through the tube for 10 hours per day.

In spite of it all, he makes an effort to bring a light into the world– like when he gives his nurses and doctors Reese’s Peanut Butter Cups or makes a special trips to his school to read to the Kindergarten class. He’s often too sick to make it to school, so seeing Danny is a treat for his classmates.

How your donations help children like Danny:

Thanks to research funded by Children’s Cancer Research Fund, Peter Gordon, MD, PhD thinks using tiny particles to deliver drugs directly to cancer cells may help lessen side effects in childhood cancer treatments.

He has already discovered how to deliver drugs to leukemia cells using nanoparticles. This novel delivery system may help cancer drugs be more effective while making a patient less sick, because the targeted treatment avoids healthy cells and directly activates the drug in cancer cells.

Steven, 14

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In September 2013, Steven was diagnosed with a rare and aggressive form of cancer. Less than a year later, at age fourteen, he passed away. Originally scheduled for a Radiothon interview, Steven entered intensive care the night before his interview. A few months later, his mother, Kristi, spoke to Ryan and Shannon to honor his memory.

Two years prior to Steven’s diagnosis, he experienced what seemed like a painful appendicitis attack. Kristi took Steven to their local hospital where the CT scan and lab work came back normal.

A nurse, Kristi later accepted a position at the hospital and as part of her training, she added Steven’s information into the new computerized chart system. After doing this, she noticed a note for Steven’s CT scan from two years ago: “Large mass of unidentified origin. Suggest repeat scan.”

The next day, Kristi and Steven returned to the hospital to have an ultrasound performed. Her worst fears were realized when the ultrasound revealed not only one, but two large masses in his pelvis. “It was a nightmare,” she recalls.

After the initial surgery, a biopsy was performed and Steven was sent to the University of Minnesota Masonic Children’s Hospital through Flight For Life.

Kristi, who had given birth to Steven’s little brother Bryden just months prior, drove from Rapid City, SD to Minneapolis with her sister. That same day, the results of the biopsy revealed that Steven had desmoplastic small-round-cell tumor cancer, also known as “Blue Tumor Cancer.”

“We were told that he had about a two percent chance of survival. This cancer is one of the most aggressive and rare pediatric cancers in existence right now,” Kristi says.

Steven was a social butterfly and used to ask strangers while waiting in line at the pharmacy, “So, what are you in here for?” He joked that his family called him the male social butterfly, “a social butterman.”

Kristi, Steven, and Steven’s younger siblings, Abigail, Alyssa, Mason and Bryden all moved into the Ronald McDonald House in September 2013. Steven’s treatment plan included an additional pelvic surgery and eight rounds of chemotherapy followed by a bone marrow transplant in March 2014.

Since desmoplastic small-round-cell tumor cancer is so rare, Steven’s physician Dr. Brenda Weigel based his treatment plan on other more well-known cancers, such as sarcoma.

The experience of Steven’s diagnosis and passing has been extremely difficult for the entire family—but Kristi carries a message of forgiveness.

On Steven’s CaringBridge she wrote, “My hero taught me so much about unconditional love and to forgive the ones who have done us wrong. Steven, you were a better person than I can ever be!”

Ling

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One fact about Ling’s childhood is clear: she was born ten years ago in China with two clubfeet. Beyond that, the story of her first 16 months is cloudy.

When Bob and Fay adopted Ling, they knew that their daughter had health challenges. In fact, rudimentary medical records showed that she had suffered a coma as an infant, and her weight had dropped to only 3 pounds. But it wasn’t until the family came to Gillette that Ling’s parents understood the full extent of their daughter’s needs.

She Almost Starved to Death
Even after successful treatment of her clubfeet at Gillette, Ling had difficulty lifting the front of her feet when walking. Weak muscles left her unable to stand without support. She couldn’t run or jump. With her clubfeet corrected, her parents began to suspect something more was going on with their daughter. “We couldn’t make as many excuses for her being so delayed,” says her mom, Fay.

After multiple tests and medical evaluations, Gillette doctors surmised that Ling had almost starved to death during her first months of life. The malnutrition likely caused her coma and affected the part of her brain that controls motor function and development.

Ling now receives comprehensive care at Gillette, including physical and occupational therapy, strength testing, and has regular visits with a pediatric rehabilitation medicine physician. “We never knew there was such a specialty in medicine,” Fay says, “but we were so relieved when we found it at Gillette!”

“We’re a Strong Family Because of Gillette”
Though Ling still struggles with muscle problems – she continues to see a Gillette neurologist who specializes in muscle disorders – the family says they’ve seen immeasurable improvements, describing their daughter as “healthy and vibrant.” For example, the little girl who missed 28 days of preschool because of illness is now thriving in school. She especially loves science, and is learning to speak both French and Chinese.

“We have a fourth-grader who can swim the butterfly, who aces every spelling test, who has lots and lots of friends, and who has few issues about her health challenges,” her dad, Bob, says proudly. Ling has even learned to play the piano, despite weakness in her arms and hands.

“We haven’t encountered one thing we weren’t able to get done at Gillette,” Bob adds, “and we’re a strong family because of Gillette. Ling is going to have a great life!”

Zach, 18

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Zach Sobiech, 18-year-old teen from Stillwater, Minn., was never far from his friends, and his guitar.

Upon his diagnosis of terminal cancer in May 2012, Zach turned to music in a big way – writing and performing songs as a way to say goodbye, at first to his friends and family, and then to the world when millions who became affected by Zach’s heartfelt lyrics and irresistible positivity in the face of adversity.

When Zach passed away on May 20, 2013, his fans pushed ’Clouds’ to up to #1 on iTunes, Spotify and the Billboard charts – a fitting tribute to a remarkable young man.

Zach bravely battled osteosarcoma, a rare bone cancer, with which he was diagnosed at age 14. As the disease progressed, doctors had no more effective treatment options to offer him a cure. Still, Zach decided to live like he always had, with a smile on his face, embracing every day with hope and joy.

Zach and his and his family started the Zach Sobiech Osteosarcoma Fund at Children’s Cancer Research Fund, and directed proceeds from his music and other fundraisers held in his honor to help researchers find better treatments to prevent and cure this devastating disease.

In collaboration with sarcoma expert Dr. Brenda Weigel, one of Children Cancer Research Fund’s Chief Medical Advisors and Zach’s primary doctor, a multi-phase research project is now underway. The project has brought together an A-team of basic and translational scientists with outstanding records of achievement in sarcomaresearch, including a veterinarian who treats canine patients with osteosarcoma. The partnership with Children’s Cancer Research Fund allows 100% of donations made to Zach’s Fund to go directly towards research.

Cancer may have taken Zach too soon, but his spirit remains a beacon of light and benevolence in a world that sometimes weighs too heavily. He has received several prestigious awards posthumously; his video for ‘Clouds’ was awarded an Upper Midwest Emmy award, and Katie Couric presented him with the Dream Maker Award, Children’s Cancer Research Fund’s highest honor. His fund for osteosarcoma research keeps growing, now at nearly $600,000. He will continue to inspire his family, his community and his fans to continue to help the children of tomorrow who learn that they have osteosarcoma.

We’ll see you again, Zach, up in those clouds.

Zac, 11

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“A Walking Ray of Sunshine.That’s how Carol Ann described her 11-year-old son Zac, of Chisago City, Minn. Despite his life-long battle with a disorder, neurofibromatosis (NF), Zac inspired and brought smiles to the faces to everyone he met.

When Zac was nearly 19-months old, he developed what doctors refer to as “café au lait” spots on his skin. Carol Ann also recalls noticing that he seemed to be stumbling more than his older siblings had at his age. Carol Ann worked at a hospital and started to ask her colleagues about these symptoms, and they recommended she take Zac to a doctor right away.

Carol Ann brought Zac in to the doctor just a few days before Christmas, 2003. After an MRI and some tests, doctors discovered benign tumors in his brain and diagnosed Zac with neurofibromatosis type 1 (NF1), which causes tumors to grow in his brain and along his nerves and lymph nodes — and for which there is no known cure. The difficulty of the diagnosis was compounded because, at the time, Zac’s father Nathan was overseas in Iraq as part of his service with the Minnesota National Guard. Carol Ann, an admitted Christmas enthusiast, recalls, “That Christmas was incredibly tough. Not only was Nathan away from home, but I was dealing with a devastating diagnosis. I did all I could to pull myself together and make it a happy Christmas for the kids.”

NF is one of the most common genetic disorders in the United States. It affects more than 100,000 Americans; more than cystic fibrosis, hereditary muscular dystrophy, Huntington’s disease and Tay Sachs combined. Though many people have a family history and inherit the disorder, between 30 and 50 percent of cases occur due to a random gene mutation, as was the case for Zac. As a first course of defense, Zac received regular low-dose chemotherapy treatments to stop the growth of the tumors, which continued successfully until he reached age 5. Then, doctors noticed a new tumor, and a biopsy confirmed that it was malignant. Because this tumor was inoperable, doctors had to try different chemotherapy options to shrink it.

One tumor, an optic glioma, left Zac blind in his left eye. In 2009, Zac had surgery to remove painful fibroids that had grown outside of his skull – another common side effect of NF.

Despite the years of chemotherapy, surgeries, long doctors’ appointments and other challenges, Zac remained an inspiration to others with his social intelligence that allowed him to talk to kids and adults alike. Zac “brought out the best in everyone,” says mom Carol Ann .

One of Zac’s favorite activities was helping “coach” his older brother Nick’s hockey team. Before most games, the team’s coaches let Zac have the last word in the locker room. His go-to advice to the players? “All hat tricks, no penalties. Get out there and play hard!” Zac would sit behind the players’ bench during the game, and cheer them on. The team and coaches embraced Zac’s presence on the team. During a playoff game last year, Zac wasn’t allowed to sit behind the bench like he normally does, but instead sat in the seats right next to the bench. When the team won – they skated right over to Zac and pounded their sticks on the glass in celebration. The team even gave their trophy to Zac.

This past spring, the family organized a benefit near Chisago City. Included in the silent auction were drawings that Zac created. The event drew around 700 people and raised more than $24,000 for the Zachary Neuro­fibromatosis Fund that Zac’s grandfather, Harvey Bartz, organized. As Harvey saw it, “This community wrapped their arms around Zac and his family to say ‘we’re with you.’ Just as important as the money, is seeing the community rally around Zac.”

Zac underwent radiation treatment called tomotherapy, which finished in March, 2011. “Tomotherapy hit him hard,” says Carol Ann. After Zac developed an osteosarcoma in his leg he could no longer walk without crutches.  Carol Ann and Zac both vowed “if you keep going Zac, I’ll keep going.”  In support of Zac, his classmates have shaved their heads to join the “Zac Pack.”

Zac passed away on November 20th, 2013 at home with his family- a wish he had expressed, as he had grown tired of being in hospitals and was missing his home and family members.

Doctors are hard at work in search of better treatments for Zac and other kids and adults living with NF. Until then, we can all bene­fit from Zac’s sage advice to “Get out there and play hard!”