Meet the Kids

Bella

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When 5-year-old Bella complained of incredible pain in her tummy, her parents were worried right away – Bella’s not a complainer. Her dad, Travis, brought her to the emergency room where doctors assured them it was just constipation. Weeks later, Bella’s mom, Tabitha, noticed a hard lump in Bella’s abdomen, so at Bella’s next checkup, she brought it up to the doctor.

“I could tell by the look on the doctor’s face that something wasn’t right,” Tabitha said.

The next day, Bella had a surgery so doctors could get a piece of the mass and determine what it was. After the surgery, an oncologist sat down with Tabitha and Travis to give them the news that would change their lives. Bella had hepatoblastoma – liver cancer.

“My heart just dropped to my feet and I had tears streaming down my face and a lump in my throat – we just lost all sense of time in that moment,” Tabitha said.

What came next was a flurry of x-rays, blood tests and other procedures. Bella had a port placed in her chest, and began her first round of chemo just a few days after the diagnosis. Tabitha says that the hardest thing about Bella’s cancer journey so far is watching the multitude of tests and procedures become her daughter’s new normal.

“In the beginning, if Bella was going through a CT scan or x-ray or port access, she would give me this look of ‘Why are you doing this to me, Mom?’” Tabitha said. “She handles all of these things really well now, but that look still happens from time to time and it breaks my heart.”

Since being diagnosed, Bella has had procedure after procedure, including a liver transplant that took doctors 11 hours. One thing that makes everything little less scary is Bella’s doll, Jessie. Jessie has had every poke and procedure that Bella has had, and she goes with to every appointment. She even has a mini-ostomy bag to match Bella’s – but Jessie’s holds M&Ms, as Bella will tell you with a giggle. Tabitha says having Jessie helps Bella understand what’s going to happen and makes everything a little less scary.

Bella is a girl’s girl – she loves dressing up, the color pink and the TV show Peppa Pig. Her laugh is so infectious that she’s won the hearts of many doctors and nurses. But Tabitha’s favorite thing about her giggly, upbeat daughter is her compassion for others. No matter what she’s going through, Bella wants to check in with her family and friends to make sure they are all doing well.

“She thinks about everyone else before herself,” Tabitha said. “If her little brother Ian isn’t with her, she wants to know what he’s doing and if he’s ok. She’s always thinking of her friends and cousins, and she makes art for them to tell them she misses them. She’s an incredibly caring girl.”

This difficult journey has brought Tabitha’s attention to childhood cancer as a whole. She’s amazed and frustrated by what she’s found – that research into treatments for cancers like Bella’s doesn’t have enough support to move forward.

“Bella’s cancer is rare, but it’s on the rise in kids, and it’s not really being researched enough. When I found that out, all I could think was, ‘Why not?’” Tabitha said. “Why aren’t we there yet? And it’s because researchers don’t have the funding.”

The road in front of Bella and her family is still unclear, but their old “normal” is in the past. Bella will be on certain medicines for the rest of her life to make sure her body doesn’t reject her new liver, and she’ll have regular labs and appointments for the foreseeable future. Tabitha’s hope for Bella is that she can do the normal things kids her age should be doing –starting kindergarten and playing with her brother and friends, free of worry and pain.

“She’s a brilliant 5-year-old – she’s done a lot of learning through this whole process,” Tabitha said. “All I want now is for her to get to play like a 5-year-old should.”

Liam

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Plenty of 5-year-old boys get bumps and scrapes, but when Kristy started noticing more bruises than normal on her son Liam, she mentioned it to his doctor. After checking the levels in his blood, Liam’s doctor told Kristy that something was definitely off. Kristy’s heart sank.

Kristy and her husband Stan took Liam to the hospital that day. After more tests, their suspicions were confirmed – Liam had acute lymphoblastic leukemia, or ALL. Kristy and Stan never imagined they’d be hearing this news – the news that their child has cancer. Their prevailing thought: how did this happen?

“We kept thinking, ‘none of this makes any sense,’” Kristy said. “Organic foods, safe ingredient bath products, limited sugar, fragrance-free everything… we did everything we were supposed to do, and this evil disease still found us.”

Liam started chemotherapy just a few days later, which started the process of losing his full head of thick brown hair. He’s had to take oral medications, which look and taste disgusting. One of his medications, a steroid that helps him recover from harsh chemo treatments, makes him feel angry, frustrated or sad much more quickly than normal. He was on this steroid for nearly a month. These “silly meds” as Kristy calls them, posed a particular challenge for Liam.

“His behavior was unpredictable,” Kristy said. “Nothing could have prepared us for watching our sweet 5-year-old have daily tantrums. We make sure to maintain our boundaries and expectations while also talking about how the ‘silly medicine’ is causing him to have really big feelings.”

For Liam, typical milestones are tainted by the difficulties of cancer – he was afraid of being laughed at during his preschool graduation because he had to wear a mask to keep germs away. Going to the zoo is fun, until he’s too exhausted to enjoy it anymore. Luckily, he’s found a few ways to be a kid through it all. Liam is a huge Star Wars fan, and he sometimes brings his lightsaber with him to fight off things like worry before appointments or before taking medicine. He even got a package of Star Wars gear when Lucasfilm heard he was a fan.

Although Liam’s treatment is working, his path to becoming cancer free will likely take around three and a half years. To Liam’s family, that’s three and a half years of worrying, hospital visits and procedures. When Liam’s immune system is weak, there’s a discouragingly long list of things they can’t do.

“When Liam’s counts are down, we cannot go grocery shopping. We cannot go to museums. We cannot go north to the cabin. We cannot go to restaurants. We cannot visit our California family. We cannot use a ‘typical’ babysitter to have date nights. We can’t do our typical holiday celebrations… for three and a half years,” Kristy said.

Through it all, Kristy has made it her mission to be an advocate for childhood cancer research. Liam’s cancer could not have been prevented, but researchers are working, even with limited funding, to find better treatments for him – treatments that don’t include intense physical and emotional side effects.

“One thing we have learned from the doctors is that there isn’t as much funding for pediatric cancers as there is for adult cancers,” Kristy said. “The ‘demand’ isn’t there for medications and treatments because pediatric cancer is so rare. If you are ever looking for a cause to donate to, find an organization that supports children’s cancer research.”

Liam’s road ahead is a long and uncertain one. His diagnosis hit his family hard, and his treatment has been even harder. Liam has had to grow up faster than any 5-year-old should have to in order to fight his cancer – and he’s not done fighting yet.

“We’re living day by day here,” Kristy said. “We’ve got our light sabers ready for any other disasters that come our way.”

Izzy

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In December 2016, Amanda and Jeremy celebrated the birth of their twins, Isabelle (Izzy) and Isaiah. Just over a year later, they were back at that same hospital, receiving heartbreaking news.

Izzy had what her parents thought was some kind of diaper rash. Several doctor visits and multiple tests later, Amanda and Jeremy still didn’t have answers. When Izzy’s rash turned to bleeding, her parents took her to the emergency room. It was that night that doctors told them what no parent ever thinks they’ll hear – Izzy had cancer. Her tumor was later diagnosed as a germ cell yolk sac tumor.

“It was very surreal – It was New Year’s Eve. One year before, on the very same day, we were being discharged from the hospital after nine days in the special care nursery after the birth of our twins,” Amanda said. “We were in shock. Nobody really prepares themselves for that moment.”

Things moved quickly after that hospital visit. Izzy’s diagnosis was confirmed and she started chemo that week. Her parents pulled her out of daycare, made arrangements for grandparents to stay with Isaiah while they were at the hospital and called their employers to take time off. Izzy’s parents said all the adjusting they did right away left little time for the news of Izzy’s cancer to really sink in. In fact, it took them a while to even say out loud that Izzy had cancer.

“It was hard to say. I think I just didn’t want to admit that my kid had cancer,” Amanda said. “The whole time they kept telling us how responsive this kind of tumor is to chemotherapy and that the prognosis was really good, but I still had a little bit of denial.”

Doctors have described Izzy’s diagnosis as one in a million, and that’s exactly how Amanda and Jeremy see Izzy. Her personality showed through chemo treatments – she would have ‘dance parties’ in her crib when her energy was up and tease doctors and nurses by pretending to give them a toy and then pulling it back from them with a giggle. She loved playing with the bubbles that child life specialists would bring in to distract her from needle pokes and scary procedures. Despite nausea caused by chemo, she would still eat a handful of random foods: three-bean hot dish and barbeque were among her favorites.

Amanda and Jeremy said their perspective as parents has changed significantly since Izzy’s diagnosis. They feel lucky that Izzy’s tumor was highly treatable and that she was able to stay healthy throughout all of her chemo treatments, especially since they’ve seen so many families with very different stories.

“I can still remember riding the elevator with a family who said they were going to be in the hospital anywhere from 40 to 60 days,” Jeremy said. “I can’t imagine how hard that would be.”

Amanda and Jeremy hope Izzy can stay healthy and grow up to have a normal life, but they know the signs and consequences of cancer and its treatment will always be there. Although her tumor has shrunk significantly, she’s off most of her medications and her feeding tube is gone, some signs still linger.

Because of the location of her tumor and the chemotherapy used to treat it, her parents are unsure if she’ll be able to have children someday. They say they don’t yet know how or when to explain to Izzy all the difficulties she went through in the first years of her life. These are things no parent thinks they’ll have to consider when their daughter is just a toddler. However, Amanda and Jeremy say they are thankful when they look back and hopeful when they look forward.

“God has a plan for everyone, so I don’t think we’d go back and change things if we could,” Amanda said. “Overall we feel pretty fortunate. We’re thankful for everything we’ve had so far – for our parents for helping us through it and the amazing people at the hospital who we trusted to take us down the right path. It really was a team effort, and we’re thankful for where we are.”

Nolan

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Nolan, then just 16 months old, had labored breathing in the few weeks before Labor Day 2015. Originally thinking it was asthma, his parents, Peter and Lydia, took him to the local emergency room where doctors ordered an x-ray. The news they received was terrifying in its uncertainty.

“They told us Nolan had a significant mass in his chest,” Peter said. “They didn’t say ‘cancer’ at that point, but we knew something was really wrong. You never want to hear the word ‘mass’ when talking about your kid.”

The night then became a whirlwind. Nolan and his parents and doctors quickly scheduled an emergency surgery early the next morning to remove fluid from Nolan’s lung and retrieve samples of the tumor.

Peter and Lydia remember sitting in the waiting room and looking at the clock, waiting until the time the doctors had said they’d likely be done with surgery. Prayer is what got them through those agonizing minutes. The image of Nolan right after he came out of surgery is one Peter says he’ll never forget.

“Seeing him hooked up to everything, with tubes coming out of him, it was frightening,” Peter said.

When they finally received the diagnosis that Nolan had an extremely rare tumor in his chest, his family felt relief to finally know what it was, but fearful of the road ahead. Fortunately, the Children’s Hospital of Philadelphia had recently wrapped up a multi-year study on the impact of a chemotherapy drug for cancers similar to Nolan’s. Peter and Lydia were relieved to hear that this chemo wouldn’t destroy Nolan’s immune system, but it had to be administered orally, which was a challenge.

Any parent knows how difficult it is to feed an uncooperative toddler – now imagine trying to feed him a large amount of medicine that tastes terrible. That’s what Peter and Lydia had to do with Nolan, twice a day, every day for eleven months.

“The first few times we tried giving it to him, he threw it right back up,” Peter said. “We tried every trick in the book to get him to take it – we tried to disguise the taste with maple syrup or chocolate flavorings but nothing worked. That was scary in and of itself because we kept thinking, if he can’t keep this stuff down, how is he going to get any better?”

Peter and Lydia finally found a flavored mouth spray that seemed to mask the taste a bit, and Nolan became more accustom to taking his meds, which shrunk the tumor to a point where it could be surgically removed. When doctors took the tumor out in August 2016, Peter and Lydia thought they were putting the cancer world behind them. Until four months later – scans found there was more cancer growing in Nolan’s chest.

Nolan had surgery again in January 2017 and went back on his foul-tasting chemo for another six months. Since then, every scan he’s had has been clear. Since his last surgery, the longer Nolan goes with clear scans, the better his chances are that his cancer may be gone for good.

Peter and Lydia are most excited that Nolan is back to his energetic, loving self. He’s a lover of all Disney movies, especially the ones that involve fighting bad guys. He’s a great role model to his little sister Ellie, who follows him around and loves to copy whatever he does. Peter and Lydia say that they just love watching the kids play together like any other siblings. It’s a reminder to them of how quickly things can change and how important it is to savor every moment.

Peter and Lydia also think it’s important to give back, since their son benefitted from a treatment that wasn’t around just five years ago.

“If this happened in 2010 rather than 2015, who knows what the outcome would have been,” Peter said. “It just goes to show how important research is. There are so many great people working for cures, and we’ve been a beneficiary of that. We feel very fortunate to have had access to the incredible treatment and exceptional care that Nolan received and we’re thankful for all the advances in this field. Hopefully what we’re sharing is a success story.”

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!”