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Holding onto hope: A family’s story of pediatric cancer survival

Ewing sarcoma affects about 3 out of 1 million children in the United States

Abram Buter celebrates his last chemo treatment with a few of his nurses. (University of Michigan C.S. Mott Children's Hospital)

When 8-year-old Abram was diagnosed with Ewing sarcoma in his thigh, his family’s world shifted overnight. For his parents, Kellia and Karl, the news marked the start of a journey that would test their strength and endurance, while underscoring the invaluable role of compassionate care in pediatric oncology.

It was three days before Christmas 2024. Abram’s family had just finished up the seasonal Nutcracker dance performances with their daughter when he proudly flexed his left thigh to show his parents how much his muscle had grown. What they saw didn’t feel right.

Over the next two weeks, Abram underwent X-rays, scans and eventually met with a pediatric oncologist. A biopsy confirmed the family’s fears: Abram had Ewing sarcoma.

“Ewing sarcoma is the second most common type of pediatric bone cancer, but still relatively rare, with only about three cases per 1 million children in the United States,” said Dr. Jennifer Blase, a pediatric hematologist and oncologist at University of Michigan C.S. Mott Children’s Hospital. “It is unique in that it can affect the bones of the arms, legs, chest and pelvis, as well as soft tissues.”

Abram’s diagnosis was uncommon, given that incidence rates are highest among children ages 10 to 19. While young patients generally have a better prognosis, roughly a quarter of cases involve metastatic disease at diagnosis.

Expert care and multimodal treatment

The C.S. Mott Children’s Hospital oncology program maintains a pediatric tumor board, bringing together multidisciplinary specialists to manage osteosarcomas and related bone cancers. At the hospital’s newly opened clinic in Pontiac, through a collaboration with Trinity Health Oakland, the family met Dr. Blase.

“We agreed it was best to have Abram start chemo immediately -- that was the most important thing,” Kellia said.

Abram had his port installed on Jan. 10 and began chemotherapy the same day.

Dr. Blase explained the standard care for Ewing sarcoma involves a multimodal treatment regimen that consists of chemotherapy, surgery and sometimes radiation.

“Chemotherapy is typically administered both before and after surgical tumor resection,” Blase said. “Chemotherapy involves multiple agents, with cycles every two weeks (each lasting two to five days). Some of the chemotherapy is administered in the hospital, while the rest can be administered in an outpatient infusion center (such as the pediatric infusion center at Trinity Health Oakland),” Blase said.

Abram’s team included Dr. Blase, Dr. Goldman and Dr. Geoffrey Siegel, his pediatric orthopedic surgeon. Kellia described the meticulous planning involved in Abram’s care:

Abram’s treatment plan was divided into two phases. The first six treatments were an intensive introductory phase.

“They hit hard. He would go every other week for the VDC regimen at Trinity, and then every two weeks to University of Michigan for a five-day admission with two different chemotherapy agents,” Kellia explained.

In total, Abram received five different chemical agents during this phase. Even on the recovery weeks, the family would still meet with nurses to draw labs and receive transfusions if Abram needed red blood cells or platelets.

The arrangement at Trinity Health Oakland allowed Abram to receive some treatments as an outpatient, reducing the need for frequent trips to Ann Arbor.

“It allowed us to stay closer to home. We have two other girls, I work part-time, we homeschool, and there are extracurricular activities to maintain an assemblance of normalcy for them,” Kellia said. “This 15-minute door-to-door drive to Trinity in Pontiac was what we needed to keep some sort of familiarity and calm for my girls and their schedule.”

Abram experienced some bumps in the road during his first phase of chemo -- weeks where prolonged bone marrow recovery led to delays in treatment. Despite some difficult delays, his blood counts were sufficient on May 21, and he underwent the femur resection procedure.

“Dr. Siegal communicated with us to make clear his plan to remove all that was affected by the cancer and to leave irreplaceable components like Abram’s growth plates,” Kellia said. “He was well prepared. That’s what any parent would expect from an expert.”

She said up until the surgery, Abram didn’t really understand what everything meant.

“We had said the word cancer, we had said that our body should not be making lumps and bumps, that it needed to come out, but a lot of it was a child doing what his parents and doctors were telling him he needed to do… It was the post-surgical pain that caused him to understand the gravity of the situation. He said to me, ‘I just thought this was going to be fun -- I’d just get the tumor taken out and it’s done.’”

Abram’s femur resection total measured 8 inches of his femur -- nearly the entire central section of his thigh bone. To reconstruct the bone, surgeons implanted a titanium plate, custom-contoured to his anatomy, along with an allograft -- a treated cadaver bone that replaces the removed section.

After his surgery, Abram was immobilized, instructed to be non-weight bearing for six weeks -- restricted to a wheelchair and a walker.

“There is no life to the allograft anymore. It will never grow. But praise the Lord, his growth plates were not impacted,” Kellia said.

Thanks to this careful preservation, Abram has continued to grow normally, even gaining an inch and a half in height during chemotherapy.

The plan continued after surgery: Abram would complete eight more chemotherapy treatments to finish the regimen.

Hospital life: Finding comfort in routine

For Abram, the hospital became a second home during his treatment cycles. He sometimes spent four-day stretches at C.S. Mott Children’s, receiving chemotherapy under the careful watch of nurses and physicians.

Kellia described the rhythm of those days:

“He did best when the treatments were overnight. Midnight would come around, they’d administer his chemo, and he’d just sleep. He wouldn’t feel any nausea then, and he could sleep until he was ready to get up. This strategy allowed him the daytime hours to feel good, eat, move his body and be a part of hospital activities,” she said.

Abram also had his favorites among the staff.

“He loved Emily, who always wore compression socks with a cool design. Karl nicknamed her ‘Cool Socks Emily.’ She was in tune with Abram -- noticing when he didn’t feel right. And NP Max -- he’s a dad and loves dad jokes. We’d always come prepared with jokes for him. Those relationships brought joy during some really long days,” Kellia said.

The Buters also found ways to bring light to the clinical environment. Kellia created bingo boards, “Would You Rather?” games and other activities to engage nurses, visitors and even Abram himself.

“We tried to be joy bringers -- even if it was just a game or a poster, anything that got him to smile during chemo,” Kellia said. “We wanted to bring smiles to nurses’ faces, too -- they often don’t see the patient outside of treatment.”

Managing symptoms: Nutrition and comfort

Chemotherapy brought its share of challenges, including nausea and appetite loss. Kellia became somewhat of a nutrition strategist, making sure Abram received the calories he needed to keep up his strength.

“A breakthrough nausea medication called Atarax worked really well. He could eat, and when you’re going through chemo, you need calories. I’d put coconut oil in his smoothies, honey on top of yogurt, fruit, veggies, bananas and plant protein. Or bacon fat, or an extra tablespoon of butter on his noodles. Those little things helped him stay nourished,” she explained. “I’m grateful to the social worker at Trinity -- Jessica -- for all of her helpful information and the nutritionists at Mott for their support.”

Emotional support and family life

Beyond medical expertise, Kellia emphasized the emotional weight of pediatric oncology care. Nurses, doctors and nurse practitioners became constants in Abram’s life, providing not only treatment but also comfort.

“Those people at Mott -- it was my privilege to bring them extra donuts, or a goody basket. What they do is hard,” Kellia said.

Dr. Blase said the collaborative support system around each patient takes a village, including the patient’s family and friends, as well as medical staff:

“At C.S. Mott Children’s Hospital’s Pediatric Hematology Oncology clinic at Trinity Health Oakland, we have a wonderful staff of nurses, physicians, medical assistants, dieticians, social workers and child life specialists,” she said. “Our staff becomes very close with the patients they treat, as these children sometimes spend two to three days per week, for multiple hours per day, in our clinic and/or infusion center, with treatment typically lasting many months to years.”

From the beginning of the journey to the end, everything is done with thought and care. Dr. Blase said the importance of child life specialists in helping children and families understand diagnoses in developmentally appropriate ways is paramount to every provider.

“Sometimes it involves medical play and preparation before big scans and surgeries. And always, the most effective communication involves active listening and being available for additional questions and concerns as they arise,” she said.

Supporting siblings and extended family

The Buters’ experience extended beyond Abram. His sisters, Jenna, 13, and Aislynn, 11, adapted to new routines at home during that time. They learned some separation and how to be by themselves, as Abram was gone for days at a time sometimes.

“They came to visit, which engaged Abram. It was the best for him,” Kellia said. “They could just come and be with him and play Minecraft or Mario Kart and just be there. It was the best light, and it would enliven him. He didn’t feel so separated from them then.”

But at home, keeping the girls’ routine was a significant piece of the picture for everyone.

“Maintaining their normal -- dance, piano, reading -- was so important,” Kellia said.

Grandparents played a key role, as well. Abram’s Nanna, for example, would drop everything to drive four hours to support the family during emergency trips to the hospital.

Gratitude for dedicated care team

Kellia reflected on the extraordinary dedication of the staff:

“They see the infants who haven’t gone home yet, and kids born with conditions like Ewing sarcoma. You meet these babies who were in the hospital for months. The staff is full of attentive nurses, skilled professionals, and I hope they receive the recognition they deserve,” she said.

Dr. Blase said the Pediatric Hematology Oncology clinic in Pontiac allows pediatric patients in Oakland County and the surrounding areas to receive the excellent care they have come to expect from C.S. Mott Children’s Hospital, but at a location much closer to home.

“This maximizes time that children can be at home and minimizes caregiver strain,” she said.

Ringing of the bell: The last treatment

On Sept. 3030, 2025, office staff at the Pediatric Hematology and Oncology clinic at Trinity Health Oakland gathered together to celebrate Abram as he rang the bell to mark his last treatment for Ewing sarcoma. (University of Michigan C.S. Mott Children's Hospital)

On Sept. 30, 2025, the Buter family experienced their biggest milestone yet. Abram had his ringing of the bell ceremony with his family and nurses beside him, celebrating his final treatment.

Kellia said in the beginning they were warned that the treatment could take at least a year, so the term grateful was an understatement when Abram’s treatment culminated on the ninth month.

“His birthday is Oct. 2, so that was our most ambitious prayer: to just let him be done for his birthday,” she said. “For us, that was evidence of God’s hand on him -- so many prayers answered.”

Abram went back to school the same month and continues to do physical therapy three days a week. He’s also been cleared by his surgeon to participate in normal child activities again.

“He’s doing archery, he loves to run and ride his bike, and he can even do things like jump on a trampoline and play tag at recess with friends,” Kellia said. “He gets to be a kid again.”

“I feel very fortunate to be a small part of such an emotional journey for patients and their families,” Dr. Blase said. “Pediatric hematology and oncology is constantly evolving, and we’ve seen so much progress over the past couple of decades. I am hopeful for continued advancements through pediatric cancer research.”

Expert care close to home

Trinity Health Oakland offers families like the Buters a vital resource: excellent care without long drives.

“The joint venture between C.S. Mott Children’s Hospital and Trinity Health Oakland allows patients to receive world-class care close to home. Long drives can be exhausting, especially for children experiencing fatigue and nausea from treatments. This model maximizes time at home and minimizes caregiver strain,” Dr. Blase said.

For Kellia, the combination of expert medical care, personal attention from staff and the ability to maintain family life made all the difference:

“The Lord doesn’t forget these little innocent children. To see His hand in all the tiniest details -- appetite, strength, recovery -- and in the medical details -- the care, the compassion, the way people show up for our family -- has been inspirational and affirming for my faith,” she said.

In addition to pediatric hematology oncology, C.S. Mott Children’s Hospital offers several other pediatric services at Trinity Health Oakland, including pediatric cardiology, orthopaedic surgery, ophthalmology, surgery and gastroenterology. Click or tap here to learn more about these services.