Meet the Kids

Taylor

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Trips and tumbles are a normal part of childhood. But what if every misstep brought the potential for weeks in a cast and months of physical therapy? That risk is Taylor’s reality — she has a condition called osteogenesis imperfecta, or brittle bone disease.

At 11 months old, Taylor broke her femur while playing with her siblings. Her parents, Kim and Ethan, rushed Taylor to urgent care — where the admitting physician noticed something unusual. Taylor’s sclera, the normally white part of the eye, had a bluish hue — a telltale indicator of brittle bone disease. “The doctor asked us, ‘Have you heard of osteogenesis imperfecta?’” remembers Kim. “We had never heard of it.”

An x-ray soon confirmed Taylor’s broken femur. To her family’s shock, it also indicated a second break: her tibia bone had been fractured at an earlier time. Taylor’s x-rays were sent to Stephen Sundberg, M.D., a pediatric orthopedic surgeon at Gillette Children’s Specialty Healthcare, who discovered two more previous fractures and confirmed her diagnosis. Sundberg admitted her to Gillette that evening, and the next morning she’d been placed in a full-body Spica cast to allow her fragile bones to heal.

“We quickly learned that when Taylor broke a bone, we wouldn’t always know that something was wrong,” explains Kim. “X-rays can miss things. And Taylor’s high tolerance for pain means she won’t always complain if something hurts.”

Today, thanks largely to bone-strengthening infusions Taylor receives, her fractures have become less frequent and less severe. While effective, the treatment will never eliminate the risk of breaks. As a result, her family walks a fine line—giving Taylor the freedom to be independent while also instilling the importance of caution. “Taylor’s personality is such that she’d be frustrated by feeling limited,” says Kim. “We don’t want to put her in a bubble or make her feel different. OI is all she knows — it’s her normal.”
From frequent orthopedic care to physical therapy, Kim and Ethan say they’re grateful to their Gillette team for supporting them since the beginning. “They care about our family,” says Kim. “It amazes me how many people it takes to care for one child with Taylor’s condition.”

Michael

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A favorite among his school peers, “delightfully mischievous” Michael was born with Apert syndrome, a rare genetic disorder. Its characteristics include prematurely fused skull bones, webbed fingers and toes, and a face that appears sunken in the middle.

Michael’s parents quickly discovered that not just any hospital could treat their son. In the Ruuds’ hometown, no physicians had experience operating on a young child with Apert syndrome. “We had an uneasy feeling that our son would be a guinea pig,” says Paty Ruud. “We wanted prompt treatment from an experienced surgeon.”

Robert Wood, M.D., a craniofacial surgeon at Gillette Children’s Specialty Healthcare, specializes in treating children who have disorders affecting the skull and face. He was visiting the Duluth hospital where Michael was born and met Michael’s parents when he was just days old. “We felt reassured knowing that Dr. Wood and the other specialists at Gillette had experience with kids like Michael,” Ruud says.

Wood performed Michael’s first surgery—a major procedure that expanded and reshaped his skull—when Michael was just 5 months old. Later surgeries separated Michael’s fingers and toes. “Our goal was to give Michael fingers in time for his first birthday,” his mother recalls. “We wanted him to be able to eat his own birthday cake. By his second birthday, we wanted to see him walk. With each surgery comes another new ability.”

Thanks to his surgeries and treatments at Gillette, Michael is developing normally. His parents say he’s a bright, happy child who is always smiling. Michael enjoys listening to music; playing his guitar, drums and recorder; riding bikes, and playing soccer and Wii.

“Michael understands that we are all different, but being different isn’t what defines him as a person,” Ruud says. “From a very young age, he began finding ways to adapt to situations. He does whatever he can to conquer a challenge. Because of his positive attitude, he fits in everywhere and is a favorite among his classmates and friends.”

Karee Jo

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Ten-year-old Karee Jo, whose story was originally shared during last year’s KS95 for Kids Radiothon, was diagnosed with a rare form of cancer called Pleuropulmonary blastoma in 2013. After undergoing multiple rounds of chemotherapy, Karee Jo had surgery to remove the cancerous tumors. Unfortunately, the cancer returned last December, the same week as the Radiothon. Karee Jo had planned to travel from her home in Watford City, ND to attend the event but instead went to the hospital for surgery to remove a tumor growing near her heart.

A self-described social butterfly, Karee Jo likes to make friends with other kids at the hospital and the Ronald McDonald House during her time in Minnesota. She still tries her best to be positive and outgoing despite the challenges she’s faced. One of her favorite things is making her friends and family laugh and she enjoys dressing up like a fashion model. “Chemotherapy made me to lose my hair, so I couldn’t style it anymore,” she says regretfully. “So, I do the best I can with styling my clothes and my makeup. It’s my armor, it helps me get through a procedure,” she says.

Isaac

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Eleven-year-old Isaac says things like they are and he’s not afraid to advocate for himself and his mom, especially when it comes to his cancer. “When I found out I had cancer, I was like “Yikes!” he says. “I started to worry and I was really scared of the needles. But when I did it enough times it got easier.”

Near the end of July 2014 during baseball season, Isaac started complaining that he had pain in his side and that his knee hurt. The pain became so intense, his parents Trisha and Dan took him into the clinic. An MRI revealed a tumor in his spine, and Isaac was later diagnosed with Ewing sarcoma. Ewing sarcoma represents only 2-3 percent of all children’s cancers and it is more commonly found in boys. Isaac knew he was not going down without a fight. Fighting meant enduring long hours of treatment. “Figure out stuff to look forward to and do a count down while you’re in treatment! Make sure to have movies and games!” Isaac says. During treatment, Criminal Minds was his favorite show — he wants to be a forensic anthropologist when he grows up – and once played Xbox for nine hours straight in the hospital, an achievement he is very proud of.

After two cycles of chemotherapy and one cycle of radiation, Isaac finished up treatment during May 2015. So far, a lot of exciting things are happening: Isaac and his family just got a new puppy, a 9-week old Golden Doodle named Lucy (he also has a tortoise named Tori). He’s also going to Australia for his Make-A-Wish –he really wants to try vegemite and possibly ride a kangaroo when he is there.

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!”

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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!”

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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.

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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!”