Meet the Kids

Maddy

Click Here to Donate | Back to Meet the Kids

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

Click Here to Donate | Back to Meet the Kids

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

Click Here to Donate | Back to Meet the Kids

Putting one foot in front of the other hasn’t been easy for her 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

Click Here to Donate | Back to Meet the Kids

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

Click Here to Donate | Back to Meet the Kids

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!”

http://ks95.wpengine.com/wp-content/uploads/2013/09/1288734809-Ling.jpg

Ling

Click Here to Donate | Back to Meet the Kids

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!”

http://ks95.wpengine.com/wp-content/uploads/2013/09/1353348712-Zach.jpg

Zach, 18

Click Here to Donate | Back to Meet the Kids

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.

http://ks95.wpengine.com/wp-content/uploads/2013/09/1353348659-Zachary_B.jpg

Zac, 11

Click Here to Donate | Back to Meet the Kids

“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!”