JoeyClick Here to Donate | Back to Meet the Kids
Two-year-old Joey arrived at the coffee shop, fast asleep and nestled against his mom, Ames, when we met with them. Tiny hearing aids poke through tufts of his blonde hair and orange and yellow plastic leg braces wrap around his legs under his Ninja Turtle sweatpants. His sister Nancy, who he calls “Joey’s baby,” sat contently in her stroller, wide-eyed and envious of her mom’s sweet looking coffee.
Between speech therapy, CT scans, clinic visits, physical therapy and chemotherapy that week, Joey was wiped out. Thankfully, the results from his recent scans to detect hepatoblastoma looked good, a relief for his family who’d been through over a year of treatment.
In June 2016, Joey was very tired and constipated. “He’d cry whenever he had a bowel movement,” said Ames. Eventually, he did not want to play, and Ames continued to become surer that something was off with her son. She consulted her mother-in-law, and they both decided to take him to the emergency room, thinking he had a blocked bowel.
An ultrasound and a few tests later, an ER technician told them that they detected an eleven-centimeter mass in 18-month-old Joey’s stomach, which doctors later confirmed was a type of liver cancer called hepatoblastoma.
When doctors first told Ames, she remembers throwing up in the bathroom and asking her husband what they would do next. They both had been in the Marine Corps, and Ames said, “Finding out your child has cancer is a similar feeling to when you’re on a deployment and in a combat zone.”
Initially, Children’s Minneapolis treated Joey with an aggressive chemotherapy regimen for five months to shrink the tumor before getting it removed. One of the treatments caused Joey to lose his hearing, making it hard to learn how to speak. Though he can hear when people speak to him, he hears it differently and therefore speaks differently
Unfortunately, doctors in Minneapolis couldn’t take out his tumor because it was too close to the main artery carrying blood to his heart. “It was beyond their capabilities and we needed a specialist,” said Ames. “Our team looked everywhere for a surgeon.” They finally found an expert in Chicago, packed up Joey, set up home at the Ronald McDonald House and prepared for the biggest surgery in Joey’s life.
As they prepared for surgery, Joey would not touch any of his bottles and had to have a feeding tube. He had oral aversion during his intense chemotherapy aimed at shrinking the tumor to make it operable. “I’d make him bottles every four hours for months, just hoping he would take it,” said Ames.
When surgery day finally arrived, Ames said, “I remember the surgery being very surreal…I almost don’t remember anything. I carried Joey back to surgery, but I didn’t take any pictures. When he came back out after surgery, it finally hit me, because I saw little droplets of my baby’s blood on the surgeon’s scrubs.”
The surgery was successful, and today, he’ll eat almost everything, including one of his medications that Ames said tastes like lighter fluid. Joey also takes medication for neuropathy, a condition caused by a chemotherapy that left his legs weak, numb and in pain.
He also shows incredible bravery when he has his port accessed in his chest. He calls it his “button,” and he gets two stickers every time it is accessed. “He even helps clean it with wipes…and he wipes down his car, too,” said Ames. Throughout treatment and everywhere in between, Joey tightly held onto his beloved toy red car, never leaving it behind.
Joey will finish up treatment in December, and in the meantime, Ames is determined to spread awareness about childhood cancer and hopes that Joey’s story will inspire others to support research so kids like him can thrive.
AricClick Here to Donate | Back to Meet the Kids
Two-year-old Aric is a happy, giggly toddler who loves watching the movies Minions and Max and Ruby on repeat when he’s in the hospital. On days when he’s feeling a bit better, he’ll run down the hospital halls while his parents chase him with the IV cart.
Within just a couple years of Aric’s young life, he was diagnosed with brain cancer and has already experienced three invasive surgeries (one which lasted more than 8 hours), chemotherapy, and he’s about to start the final phase of treatment if his brain tumor is gone. This involves an extremely high dose of chemotherapy followed up with a procedure which uses his own stem cells.
Then, hopefully, Aric and his family can enjoy their winter, albeit with regular MRIs. If the tumor still resides, he’ll have to endure more intensive chemotherapy, possibly another surgery and a procedure called a stem cell rescue, which will essentially strip his bone marrow clean.
Diagnosed with embryonal tumor with multilayered rosettes, C19MC altered, Aric’s brain tumor is very rare, and scientists have just now created the technology to detect this particular cancer type. It’s so uncommon, pieces of his tumor had to be sent to different brain tumor institutions across the country and Canada to confirm his diagnosis.
For Tom, watching Aric go through the effects of chemotherapy is especially hard. The treatment wipes him out, so much so that his usually lively toddler struggles to walk and play.
“Going through this is incredibly hard on the child’s body, and it has a whole host of side effects and even secondary cancer risks. We all want the cure, but the cure itself is not as cut and dry as some would want,” said Tom. “We need to keep finding better treatments with better success rates that are less damaging to the body… The more funding that goes into research and developing cures for these cancers the better.”
Of Aric’s qualities, he admires his son’s resilience the most. “The minute he feels even the slightest bit better, he will try his hardest to smile, or play, even if it’s only for a couple minutes,” he said. “He wants to enjoy his life and use up every moment of feeling good–even if it is at 2:30 a.m… It’s really the little things that you maybe once took for granted where you can really find incredible joy.”
Tom recalls a moment after Aric’s fourth round of chemotherapy—Aric didn’t seem to recognize his dad, wanted his mom all the time, and even when Tom would look at him, he would duck his head. “It killed me inside,” said Tom. “But…I started to get little smiles, then quickly started to get him to call “Da!” and he wanted to be with me again. It was probably the happiest moment.”
He also holds onto Aric’s little smiles, when he buzzes the halls on his Thomas the Tank Engine push car, the little “bye” he says when the nurses leave.
“When we went into this and got the diagnosis everything changed,” said Tom, Aric’s dad. “But honestly, aside from having Aric’s health back, I don’t really wish I had anything back. We have gained so much more from this experience than we have lost. We gained perspective… this really brought us together even more as a family that we can rally around Aric.”
Ruth “RE” EvelynClick Here to Donate | Back to Meet the Kids
Ruth Evelyn (you can call her “RE” for short) is 5 years old and a ball of energy. She loves roller coasters, dancing, gymnastics, Disney princesses and coloring. On a sunny August afternoon, RE shrieks with delight as she flies, fearless, down the slides at her neighborhood park.
You might have noticed something else about RE, too. RE was born missing her arms. Meet her, and you’ll see that she’s adapted remarkably. She makes iPad videos, eats her meals, gives high-fives and creates artwork—all using her feet.
But there’s one thing RE hadn’t done yet. She dreamed of riding a two-wheel bike.
RE’s mom, Karlyn, is a firm believer that anything’s possible for her daughter. She says that RE’s been defying the odds since her birth on April 19, 2012, a full nine weeks ahead of her due date. “There’s no ‘can’t’ in her vocabulary,” says Karlyn. “She wants to ride a bike, so we’ll figure out a way that she can.”
So, RE’s family turned to Gillette Children’s Specialty Healthcare, where RE’s received care since age 1. Her prosthetist got right to work.
The result? A first-of-its-kind device that rests against RE’s shoulders and connects to her bicycle’s handlebars, helping her steer safely and confidently. It’s purple and features images of a ballerina and a dolphin—all per RE’s request.
RE’s concentrating hard during her first ride, but her exclamation to her mom says it all: “I’m getting the hang of it!”
JacksonClick Here to Donate | Back to Meet the Kids
“I realized, you know, I have my brain, I have my smile, I have my body. It’s just that I have to move around life differently, but I’m still me. I’m just sitting in a chair. That’s the only difference.” – Jackson
Jackson sustained a spinal cord injury when he was 16 years old, the result of a car accident. The injury thrust Jackson, who stands a tall 6’2’’, into a new reality of life in a wheelchair.
Instead of giving up, Jackson made the decision to embrace his new reality.
As an inpatient at Gillette Children’s Specialty Healthcare, Jackson learned how to adapt to his different abilities. He built strength. He continued to think positive—an attitude reaffirmed by his Gillette therapists.
“Just being in a wheelchair was difficult. Pushing—the strength was just incredibly challenging. But then, after time, with the therapies and the determination by both me and my therapists, it helped strengthen me day by day,” Jackson says.
Last year, Jackson discovered the ReWalk robotic exoskeleton—advanced technology that allows individuals who have paraplegia to walk upright. With the ability to balance and strong upper body strength, he made an ideal candidate. For months Jackson worked with Gillette physical therapists Amy Schulz and Janna Neher to learn how to operate the high-tech device.
“As soon as I got into it for the first time I was like wow this is amazing because I was just able to be myself. My legs were so loose afterwards and I just felt great,” Jackson shares.
After a joint effort with his Gillette therapists, Jackson became the first person in Minnesota to be approved for a ReWalk for use at home and in his community. This summer, his journey culminated in a special moment: walking the bases at Target Field and meeting Minnesota Twins first baseman Joe Mauer.
HopeClick Here to Donate | Back to Meet the Kids
“Hope has always been a woman unto herself,” says her dad, Kevin. “She’s not one to back down from a challenge or a task when she can very well do it on her own.”
That mentality began even before her birth. Scheduled to be born on her dad’s birthday, January 18, Hope had other plans. She entered the world one week prior on January 10—her mom’s birthday. “That was the start of a fiery girl called Hope,” says Kevin.
Hope, who loves animals and wants to someday become a vet, is her own person for another reason too. She has a rare genetic condition called multiple pterygium syndrome—a condition she shares with her dad and her 8-month-old baby sister. She has three additional siblings, an older sister and two younger brothers, who don’t have the condition.
At the time of Kevin’s birth, there wasn’t much known about multiple pterygium syndromes, the symptoms of which include scoliosis, short stature, joint contractures and webbing of the skin around the joints. Kevin, who received care at Gillette Children’s Specialty Healthcare until his teenage years, remarks on the advancements that have taken place at Gillette—he says because of them, Hope handles her frequent surgeries with ease.
“Hope goes into her growth rod adjustments knowing she’s going to be met by nurses who are excited to see her and that she’ll understand exactly what’s going on,” explains Kevin. “She knows that when she wakes up she’s going to get juice, watch movies and do activities. The emotional support is there, to the point that Hope has no problem.”
Kevin and MariAnne teach Hope that she faces no limitations, only limitless possibilities, in her life. “I look at my daughter Hope and I see everything she is capable of,” says Kevin. “She does great things right now and even more is to come if we work together and buy into that real vision of ‘I can do whatever I set my mind to,’” says Kevin.
ElijahClick Here to Donate | Back to Meet the Kids
An active kid, Elijah has tried everything from soccer and basketball to snowboarding and wake surfing. He also loves playing tag with friends in his neighborhood and racing with his favorite neighbor friend, Jeffrey. There’s one thing, though, that makes Elijah’s active life especially remarkable: He does all these activities using a prosthetic leg.
Elijah has a condition called fibular hemimelia, which means his left leg was missing its fibula bone at birth. His parents decided to have doctors at Gillette Children’s Specialty Healthcare amputate Elijah’s affected limb and replace it with a prosthetic, giving him lifelong independence and mobility. He received his first prosthetic at age 1, just in time for his dad to see his first steps before deployment to Iraq.
“He gets a lot of questions,” says his mom, Corinne. “But he’s comfortable explaining it himself.”
Elijah wears a traditional prosthetic leg for everyday use. But lately, he began noticing something: When he would run and play with kids his age, he had a slight disadvantage. “It’s not an ability issue, it’s an equipment issue,” Corinne explains.
Elijah’s family consulted with experts at Gillette about a special running prosthesis that would mean Elijah’s athletic abilities—not his equipment—controlled his speed. “Michelle felt he was a good age and a good weight, really the perfect timing,” Corinne says.
The first time Elijah tried on a demo running prosthesis, he had this to say: “Mom! I’m FAST!”
From there, Gillette collaborated with Wiggle Your Toes, a local nonprofit dedicated to helping individuals with limb loss, to create a customized running prosthesis for Elijah free-of-charge. Gillette donors funded the “socket” portion of the device. The leg is bright blue and, fittingly, features bolts of lightning.
“As a parent you want your child to excel and succeed. More than the tangible gift of a leg, this is an intangible gift of excitement and confidence,” Corinne says.
AveryClick Here to Donate | Back to Meet the Kids
Tall, athletic and tenacious, Avery was headed into seventh grade with the wind at her back and the world at her feet. One routine appointment changed all that.
Her pediatrician noticed an abnormal curvature in her spine. One specialist and an X-ray later, it was confirmed. Avery had adolescent idiopathic scoliosis (AIS).
“It was definitely a shock,” Avery says. “I’m a competitive swimmer and athlete; I’d never really been hurt or sick in my entire life. I didn’t even know what scoliosis was.”
Avery’s family discovered Gillette Children’s Specialty Healthcare, and spine surgeon Tenner Guillaume, MD, during their search for a second opinion about Avery’s scoliosis. Due to the degree of her spinal curvature, corrective surgery was a likely possibility.
“Dr. Guillaume made it clear that this didn’t need to be such an urgent thing. I felt like he was genuinely interested in what I thought, and in what mattered most to me. When we left after that first appointment, my mom and I just looked at each other like, ‘Yup, this is where we need to be,’” Avery says.
Avery’s family and Dr. Guillaume agreed to wait until the end of her swimming season for the procedure. “During this time we had a lot of discussions about what the spinal fusion would mean for me physically,” Avery recalls. “Being active is extremely important to me. Dr. Guillaume took that into account.”
Dr. Guillaume recommended a less aggressive procedure that would correct Avery’s scoliosis, yet allow her to be more mobile and keep doing the things, like swimming, that she loves.
Two years later, now 15, Avery’s swimming, smiling and thriving. Scoliosis is old news.
NathaliaClick Here to Donate | Back to Meet the Kids
Nathalia is resilient, spirited and humorous, but it’s her heart that her mom, Katy, loves most. Full of gratitude, Nathalia never misses a chance to thank the nurses, doctors and other caregivers who’ve helped her through her treatment for osteosarcoma, a devastating bone cancer.
Before she was diagnosed, she had been limping and complaining of leg pain for about six months. During that time, Katy brought her to the doctor, but they were told she most likely had a torn ligament or simply growing pains.
Later that summer, Katy noticed Nathalia was still limping, and when they returned home from a trip to Canada, her right leg was swollen. With summer camp just around the corner, Katy made the decision to take her to urgent care, and that’s when they learned Nathalia had cancer. Starting in her leg, the disease had already spread to her lungs.
A whirlwind of scans later, Nathalia had a treatment plan: 5 cycles of intense chemotherapy and a surgery on her leg, which thankfully, would not have to be amputated. After chemotherapy, doctors would then do surgery on both her lungs to remove smaller tumors.
In the middle of treatment, Nathalia’s body stopped responding to the original plan, so her care team had to pivot and try an entirely new chemotherapy cocktail. Unfortunately, this meant Nathalia would have to be in the hospital for five days of chemotherapy, instead of two or three days, meaning she’d miss out on playing with friends, school and all the other activities a 12-year-old loves. At first, the new treatment option was very effective, and surgeons were able to move forward with surgery as planned with good results. But, again, her body stopped responding to the chemo.
At this point, her family had to weigh Nathalia’s options: She could either go on an oral chemotherapy, or she could sign up for a clinical trial which involved a shot once a month. They decided to try the clinical trial.
For Katy, the hardest part of watching her daughter go through cancer was seeing the emotional toll treatment took on her.
“I think the biggest thing that has changed since all this has happened is to take each day as it comes, to be more present in the moment with my kids, but in life in general,” said Katy. “I want to live life purposefully and to not plan the life for what you think it should be. There is this motto I live by, ‘When it rains, look for the rainbow; when it’s dark, look for the stars.’”
For Katy and her family, research is important because it creates more options for kids. “Without research, many patients would be stuck with antiquated treatments or treatments, which make them sicker than they already are,” she said. “Without [research] many kids will either end up dying or have prolonged issues caused by the treatment… in Nathalia’s words ‘It’s the only way to give effective treatments and/or better treatments for kids.’”
This September, Nathalia had scans to see if the shots had been working. They came back clear, meaning she showed no evidence of osteosarcoma.
“My hope for her is that she’s healthy and that she will continue to inspire others around her,” said Katy. “[I want her] to be happy and with a new appreciation of life, to live it to the fullest, to find a new confidence and to know that she can overcome any obstacles that come her way.”
OliviaClick Here to Donate | Back to Meet the Kids
Spunky, funny and loving, 6-year-old Olivia loves visitors at the hospital where she has spent a considerable amount of time as she battles high-risk neuroblastoma
In December 2016, Olivia had a small tummy ache, hip pain and a high temperature which eventually skyrocketed to 106 degrees. She was initially diagnosed as having a pulled muscle, viral infection and constipation. But when her dangerously high temperature persisted, her primary doctor recommended that she go to the emergency room to be evaluated.
A number of tests and unanswered questions later, the oncologists found a cancerous mass in Olivia’s abdomen and in a couple lymph nodes in her left hip and pubic bone.
After her diagnosis, a hospital staff-person came to talk to Olivia to explain everything. Olivia started to tear up, but as Kari, her mom said, “Without missing a beat, she said, ‘I am going to kick this cancer’s butt! Mommy and Daddy, I know you are sad, but you need to know that everything will be okay, and I am going to beat this cancer!’”
Olivia began chemotherapy treatment, spending five days in the hospital each cycle and twelve days at home. During her time at home, she received medication through a Hickman line (a kind of port) via her tube. Because Olivia didn’t like the nurses and doctors calling them tubes and IVs, she named them after her dogs. Her Hickman line was called “Bumbles” and the red cap on her line was named “Pank.”
In April 2017, Olivia needed surgery to remove the tumors. Removing neuroblastoma was no easy task, as it had to be removed layer by layer rather than being removed in one piece. Throughout treatment, Olivia needed a feeding bag with protein and nutrition as she was losing weight fast.
In June, Olivia continued with high dose chemotherapy, and she had her first stem cell transplant. At the University of Minnesota Masonic Children’s Hospital, these transplants are called “second birthdays.” Though the procedure went well, a few days later, Olivia had level 10 pain, ran 104-degree fever and broke out in hives. Though recovery proved to be very difficult, Olivia had no evidence of disease in July 2017.
She is currently recovering from her second stem cell transplant.
EllorieClick Here to Donate | Back to Meet the Kids
Baby Ellorie hadn’t even hit one year old when she was diagnosed with neuroblastoma, a kind of cancer that forms in the nerve cells.
A tumor the size of a sweet potato was embedded in her tiny body, and it wasn’t until her parents Kari and Jake, brought her to the pediatrician that they discovered cancer had invaded their daughter.
Before they could catch their breath, they were sent off to Children’s Hospital of Minnesota. Milestones like first words and first steps were intermingled with procedures and surgeries no baby should ever have to endure.
Her parents hoped the tumor could simply be cut out through surgery, but the surgeons opted to shrink the tumor first with chemotherapy. Ellorie was scheduled for 8 rounds of chemotherapy, each round lasting 21-28 days depending on how well her body responded to the chemotherapy.
Her parents quickly learned how to administer medications at home. Ellorie was given a “Hickman” catheter in her chest, which they were responsible for cleaning, maintaining and administering drugs into on a daily basis.
In November 2014, after a few round of chemotherapy, Ellorie went in for her first scan to see if the treatment was working. Though the original tumor had shrunk considerably, the oncologist discovered a small spot on Ellorie’s spine, indicating that the cancer may have spread. They decided to monitor the spot and move forward as planned.
Between chemotherapy rounds, Ellorie celebrated her first birthday while wearing a fluffy pink tutu and smashing her first birthday cake.
“In the end, Kari and I have come to realize that we cannot do this alone. The generosity and love of our friends and family are overwhelming. We are moved to tears as you all have asked how you can help,” said Jake, in a post on Facebook.
Following chemotherapy, Ellorie underwent surgeries to remove the tumor. Afterward, scans showed some glowing spots, but doctors opted to remove her central line and enter a monitoring phase.
“So…..What does that mean?” wrote her parents. “We had the same question. Her cancer doesn’t receive a “cured” diagnosis. So we are not “healed.” Nor do we receive a remission certification. We do not receive a diagnosis of “No evidence of disease” either. So, what is it? We have graduated from “treatment” to end of therapy. No more chemo is planned. No radiation. No more drugs. No nothing.”
For now, 3-year-old Ellorie enjoys wearing princess dresses, biking, playing with Barbies, and, of course, watching the movie “Frozen.”
Her cancer could return at any time, but it can also wither away—only time will tell. For the next 5 years, she’ll go in for scans to monitor her condition.
Her parents said, “She has no idea she ever had cancer…Three surgeries, multiple scans, 4 rounds of chemo, ridiculous amounts of clinic visits, 27 days in the hospital, and weekly home care visits. While we are thrilled with the outcome, we are exhausted from the run.”
ClementineClick Here to Donate | Back to Meet the Kids
Flipping up her sandy-blond ponytail, 8-year-old Clementine showed us the scar across her skull from brain surgery. “See, I bet you didn’t even notice it!” Just a few months after the surgery, this energetic girl hopped on her bike and rode around the block – with just a little wobble.
Today, brain cancer kills more children than any other childhood cancer, recently surpassing leukemia. Research for better, safer treatments is critical to keep kids alive and well. Thanks to supporters like you, we’re funding innovative research that could prevent brain cancer from returning.
Before cancer, Clementine (“Emmy” for short) loved running around in pink tutus.
But surgery, radiation, clinical trials and traveling between Pennsylvania and Minnesota left the usual sprite girl feeling nauseated, battling high fevers and extremely exhausted. “Before, she was a fearless cannonball of sunshine, style and attitude,” said Rebecca, Clementine’s mom. “After, she is at times a reluctant ray of sunshine who loves hanging out at home.”
It all started in late fall 2016 when Clementine had a splitting headache at school. Her grandpa brought her home, and by the time they reached the house, she had passed out and was unable to walk. Her family took her first to the pediatrician, then to the emergency room.
Throughout the week, the crisis unfolded. An initial CT scan revealed bleeding in Clementine’s brain, and doctors would have to perform a difficult surgery to remove what they presumed was a tumor that was located in a part of the brain where spinal fluid is made and circulated and where motor functions are controlled.
After surgery, Clementine was given an official diagnosis of glioblastoma multiforme. She’d begin her treatment plan with radiation and enroll in a phase II clinical trial in Pittsburgh to prevent more brain tumors from growing. The trial treatment, a vaccine, works like an immunization and is tailor-made for each patient. The lab uses Clementine’s blood to create a customized antigen vaccine that has to be administered within 45 minutes after being created. She then receives an immune booster in a separate injection.
Though a promising trial, the drug leaves Clementine with some detrimental side effects such as swollen welts on her legs, soreness and fevers.
Clementine has months of treatment ahead of her, but she’s still doing her favorite things. Singing puts Clementine in her happy spot, and she loves drawing on scraps of paper and leaving them around the house. “If she’s mad at you, she’ll draw a picture of a broken heart and give it to you,” said Rebecca. “She is so creative.”
During Clementine’s treatment this spring, Rebecca found herself tearing up — not out of frustration or sadness from all that they’d been through but because she saw that Clementine had hopped on her bike and rode around the block—just three months after surgery.
“[Clementine] is starting to show more spark and energy each day,” said Rebecca. “We’ve been given so many gifts, and we don’t know how long we get to keep them, but man — we’re going to enjoy the hell out them while we have them.”
CCRF-funded scientists have already discovered how to make a vaccine more effective in dogs with a certain type of brain cancer, and they’re hoping to bring the treatment to human clinical trial next year. Researchers are also investigating the genes behind medulloblastoma, a deadly brain cancer. Your support is changing the childhood cancer landscape for kids like Clementine.
Steven, 14Click 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!”
LingClick 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!”
Zach, 18Click 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.
Zac, 11Click 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!”