Max is a neuroblastoma warrior. The energetic and active three-year-old has been fighting high-risk Stage IV Neuroblastoma since August.
His diagnosis came as a complete surprise to his parents, Dianna and Roger, who say that Max was the healthiest and wildest kid you’d ever meet.
Max sometimes complained about knee pain and then his eye started getting puffy. Then one day, his eye looked black and blue and got worse. Then the other eye turned yellow and started to bruise. Knowing something was off, Max’s parents took him to the doctor for blood work.
The results showed cancer, so his pediatrician called Dr. Oesterheld at Levine Children’s Hospital, where Max was admitted immediately. It was there that Max and his parents became part of the LCH family under the great care of Dr. Oesterheld and an amazing team of nurses and other medical professionals to begin a long and rigorous treatment process.
The primary tumor is on Max’s liver, on two lymph nodes on his abdomen, and his eye. He recently had 30 percent of his liver removed, a resection surgery to remove his tumors, and received his sixth round of chemotherapy. He has also had 11-12 blood transfusions and four platelet transfusions since August.
Max still has bone cancer on the entire top of his skull, right upper arm, pelvis, spine, and legs. His treatment is being pushed back three to four months, because his cancer isn’t quite ready to move forward with the original treatment plan, which would include a high dose of chemotherapy and stem cells. He may end up needing MIBG Therapy.
“I would never want anyone else to have to go through this,” said Max’s mom, Dianna. “It’s very scary, but we are very grateful to the amazing team at Levine Children’s Hospital who are like a second family.”
Max is part of DFMO drug study at LCH to help prevent relapse of neuroblastoma. As part of the study, he takes a chemotherapy pill at home. Fortunately, it doesn’t add any additional side effects or toxicity.
Max bounces back between treatments and enjoys his time at home in Montgomery County where he and his family have a hobby farm. Max’s best friend is his chicken named Pumpkin who is like a dog in the way he plays with him and follows him around.
Pediatric Cancer Funding
It wasn’t until this summer’s shocking news that Dianna realized how much funding is needed in the pediatric cancer field. Since Max’s diagnosis, his parents have become passionate about raising awareness and funding for pediatric cancer and supporting local hospitals like Levine Children’s because they don’t turn people away.
Adds Dianna, “These hospitals are like angels doing everything they can do to give all these kids a fighting chance. My new mission is educating people about rare childhood cancer. No baby, three-year-old or teenager deserves to die because there is not enough money to save their lives. I will do whatever I can to make a difference.”
If you are interested in helping support Max during his treatment to assist with medical expenses and gas cards for their two-hour trip from Montgomery County to Levine Children’s Hospital, please email Dianna at email@example.com to her PayPal.
*UPDATE 2/25: After almost a year ago of being diagnosed with osteosarcoma, a rare pediatric cancer, Madison received the news she has been fighting so hard for at her 3 months scan. She beat cancer. She will continue to have maintenance scans and therapy on her leg, but was able to ‘Ring the Bell’ at Levine Children’s Hospital signifying the end of her treatment and beginning of living life cancer free!
Oh, and she got a puppy! Oakley, a black Goldendoodle!
Madison was diagnosed this past April with osteosarcoma at age five. After several rounds of chemotherapy to shrink the tumor on her femur, she had surgery to remove her right femur and replace it with one from a cadaver. Fortunately, the medical team was able to remove most of the tumor and save both of Madison’s growth plates. She continues to receive chemotherapy and recover from her surgery. Once Madison gets the green light from her doctors to be more mobile, she is determined to learn to walk again so she can earn a super cute bribe from her parents – a Golden Retriever puppy.
A Community of Support
Madison and her family live two hours from Charlotte in Scotland County. She and her mom make the drive each week to Atrium Health’s Levine Children’s Hospital where Madison receives in-patient treatment Thursday-Saturday. They then return home for four days to be with their family – Madison’s dad, Michael, and big sister, Riley – and where Laura teaches three days a week.
“Madison’s diagnosis has changed us all,” says Laura. “Michael and I have to raise each of our daughters as single parents during the days when we are in Charlotte for treatment. The hardest part is not being together under the same roof. We are very grateful for the great friends we have made through this journey. You realize you can’t do this alone so you learn to rely on support from others.”
For the remainder of the year, Madison will be homebound where she loves to cook, bake, do crafts and make “how-to” videos on her mom’s phone. When she finishes chemo in December, she’ll resume her favorite activities including: dance classes, swimming and learning how to ride her bike.
In January, she will start kindergarten at the school where Laura teaches and where they already have a tremendous community of support. Faculty and students have created “Team Madison” in honor of Madison for the American Cancer Society’s Relay For Life of Scotland County. Laura and Madison stay busy supporting the team. It all started with their Levine Children’s Hospital life coach bringing them some beads to make necklaces and bracelets. From there, Laura and Madison started making “Madison’s Hope Rope” key chains that they give to patients at Levine Children’s Hospital and sell to raise funds for their Relay For Life team and other cancer organizations.
“Madison is our hero and is such an inspiration,” says Laura. “She’s such a good kid and is all about wanting to help other people. Even though she’s five, she’s changing people’s lives.”
Contributed by Wheela Sunstrom
If a two-year-old were capable of writing his story, what would he say? Would he tell you his favorite colors? Would he reveal his favorite food? Would he describe his favorite outfit, his favorite toy, his favorite hobbies, his favorite book? Would he tell you he loves his brother and sister, and also his mommy and daddy? The answer is a resounding YES. He’d tell you all of those things, and probably much more. But a diagnosis of Stage 4 neuroblastoma at only 18 months old changes all of that. If Ethen could put tiny pen to paper, his version would answer things like: Who is your favorite doctor? Do you have a favorite nurse? What does it feel like to have cancer? Does chemo hurt? What about radiation What about the tests, the tumor surgery, the catheter, the stem cell and bone marrow transplants, the antibody treatments, the intubation and the ventilators? Are you afraid? Do you love your brother and sister, and also your mommy and daddy?
Eighteen months. Less time on Earth than a mobile phone contract. Far too young to have to answer some of those questions. Too young to be burdened with these weighty concepts, to need the strength and knowledge of a superhero battling one of the cruelest villains in life. And yet, a small superhero body does what it knows to do: Fight. His mom finds the silver lining: It’s all he knows. It’s unfortunate, but it’s easier in a way. For Ethen’s family, this became all they knew too, the “new norm.” Conversations and celebrations alike revolve around cancer. His parents fall just as easily into discussions about his diagnosis, his treatments, and his prognosis as they do the weather. “Did you see that new show on tv?” seamlessly transitions to, “What are your worst fears?”
And those big, gigantic fears frequently have to take a backseat, sandwiched between milestones like birthday parties and learning new words. Because a diagnosis stalls you at first, then launches you onto an unfamiliar freeway, dumping you into a chaotic traffic jam of Wait-and-See with sporadic moments of Move, Now! There’s often no time to consider anything else but what’s right in front of and around you. You begrudgingly tighten your seatbelt, then sit.
Most people see their lives in increments of extended time: 3 months. 6 months. A year. Families with a neuroblastoma diagnosis tend to have a very different range: 3 weeks. 6 days. An hour. Forget about family vacations and playdates. You’ll find those in the trunk, buried under the What Ifs.
There are also happy moments he would sprinkle throughout this tale. An attention-loving, silly two-year-old would definitely say something about the fun things, the brighter things. Giggle fits, kissing attacks, successful steps, relieved anxieties. The new extended family made up by doctors and nurses and staff and supporters and other patients who provide a familiar comfort. These once-strangers who make the good days wonderful and the bad days less bad. After all, Ethen has become their child too. They are all on the same ride, all wanting the same thing.
The ultimate goal? Kids like Ethen get to write their stories, their way. Without intubation and ventilators and antibody treatments and transplants and surgeries and tests and chemo. They get to spend more than half of the year somewhere besides a hospital, celebrating milestones. Independent, affectionate Ethen would tell about his favorite cereal, his favorite toy, his favorite Mickey socks, his favorite bear, and his favorite book. The story wouldn’t revolve around cancer. Down the road, he’d share the experience of losing his first tooth: Did it hurt? Was he afraid? He’d definitely talk about the fun things, the brighter things. And he’d certainly say he loves his brother and sister, and also his mommy and daddy.
This is why we do what we do. Because these are the stories children should be telling – the stories they want to tell – not the ones they have been forced to tell. Our mission to help shape these narratives is clear, and we won’t stop until they are all happily-ever-afters.
His favorite colors are blue and yellow, by the way.