‘Super Sam,’ mother travel to Florida for specialized cancer therapy

Santhuff family shares experience with ‘kicking cancer’s butt’

Kelly Nickelson, physical therapist with Atlas Physical Therapy in Fulton, stretches five-year-old Sam Santhuff's legs at the end of a session on Thursday. Santhuff was diagnosed with cancer which has caused neuropathy in his hands and feet. Nickelson works with Santhuff to strengthen those areas. She met and befriended Santhuff's mother, Cassie Santhuff, through a young parents group at First Christian Church in Fulton, and now volunteers her time to give Sam Santhuff physical therapy.

Kelly Nickelson, physical therapist with Atlas Physical Therapy in Fulton, stretches five-year-old Sam Santhuff's legs at the end of a session on Thursday. Santhuff was diagnosed with cancer which has caused neuropathy in his hands and feet. Nickelson works with Santhuff to strengthen those areas. She met and befriended Santhuff's mother, Cassie Santhuff, through a young parents group at First Christian Church in Fulton, and now volunteers her time to give Sam Santhuff physical therapy. Photo by Brittany Ruess.

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Sam Santhuff, 5 of Fulton, wraps silly putty around the hands of physical therapist Kelly Nickelson at Atlas Physical Therapy in Fulton on Thursday. The exercise helps strengthen Santhuff's hands where neuropathy has developed as a result of chemotherapy.

Matt and Cassie Santhuff thank God for seed ticks.

The tiny bugs helped lead them to their son’s cancer.

Matt Santhuff took his 5-year-old twins, Sam and Ava, to pick blackberries on Aug. 1 at the Reform Conservation Area near the Callaway Nuclear Energy Center. But what the family left with more of that day was seed ticks, especially Sam.

On their way back to their Fulton home, Sam pointed all of his new “freckles.”

“Ava said something like, ‘Sam, your freckles are moving,’” Cassie Santhuff said.

When they returned, some seed ticks latched onto Matt and Ava, but Sam was covered with more than 100 bites. All three wore the proper clothing — long sleeves, long pants and boots. But somehow the ticks hooked to Sam, mostly on his legs, arms and back.

Learn more about Sam's journey here.

Cassie said there were only five or six that covered Sam’s face, neck and head.

Fearing the possibility of lime disease or other conditions from the tick bites, Matt took Sam to the doctor who instructed them to apply lotions and creams to calm the bite marks.

While Cassie was applying lotion, she and her son shared a laugh. Sam’s head went back as he chuckled and Cassie noticed a bump in his nose. The size of the bump, she said, was smaller than a pea.

The family assumed a tick, embedded into Sam’s skin, caused a bump and swelling. A doctor prescribed antibiotics to help the swelling go down, but it grew bigger. And bigger.

“That made the only logical sense,” Cassie said. “It had to be a tick.”

Sam went to an ear, nose and throat (ENT) doctor who decided to surgically drain the bump in order to terminate it. The procedure was supposed to be only 15 minutes long. After an hour wait, the ENT doctor approached Matt and Cassie.

“(The doctor) looked like he had been through the ringer,” Cassie said. “He was flushed and kind of a little sweaty. And, you could see the concern. You could really see it.”

The doctor said the bump was not what he originally anticipated, saying a tissue developed in Sam’s nostril that he didn’t recognize, but looked similar to lymph node tissue. The tissue was sent to Jefferson City Medical Group (JCMG) for a biopsy.

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Sam Santhuff, 5 of Fulton, walks on treadmill while looking at the different buttons available for him to touch. Kelly Nickelson, a physical therapist with Atlas Physical Therapy in Fulton, stands behind him. She instructed Sam to walk forward, backward and side to side.

After the biopsy, JCMG classified the tissue as “unusual,” Cassie said, and didn’t want to commit to its diagnosis. So, the tissue was sent to the University of Missouri Hospital. The hospital had results, but didn’t want to commit either, Cassie said. The results of both, the doctor told the Santhuffs, was rhabdomyosarcoma — a rare form of pediatric cancer.

“He never used the ‘C’ word. He never said ‘cancer.’ And I’m thinking, ‘sarcoma, sarcoma, sarcoma.’ That’s a tumor. OK, that doesn’t mean it’s cancer. That’s all that was going through my mind,” Cassie said. “(I’m thinking), ‘He hasn’t said benign or malignant yet.’ And then he said it’s been sent to the Mayo Clinic. I just froze. I dropped pen and froze.”

Because the words “Mayo Clinic” meant this is serious.

On Aug. 26, Sam was diagnosed with rhabdomyosarcoma, which has affected his nose and cheek. There is no cure and patients with the cancer deal with it their entire lives. According to the U.S. National Library of Medicine, rhabdomyosarcoma affects only 300 children in the United States every year. One out of three children are diagnosed with leukemia — the most common form of cancer in children and teens — according to the American Cancer Society.

“You have to understand that everything with Sam is rare,” Cassie Santhuff said. “Everybody (at Children’s Hospital) wants in on his case because there aren’t that many documented.”

“Rhabdomyosarcoma” breaks down like this:

•Rhabdo — skeletal

•Myo — muscle

•Sarcoma — cancerous tumor

After receiving Sam’s diagnosis, Cassie called her boss first. She told her boss shouldn’t wasn’t working anymore and took a leave of absence to care for Sam.

Cassie said the cancer was caught very early and now, four months later, Sam’s prognosis is good.

“I really think that blackberry trip saved Sam’s life,” Cassie Santhuff said.

After 10 days knowing Sam has cancer, Matt and Cassie had questions they needed answered. They kept searching for the reason why, looking for where to place the blame, when they met Dr. David Leonard at Children’s Hospital in St. Louis.

Cassie said her twins have eaten organic, hormone and BPA free foods since birth. Sam and Ava were born through in vitro fertilization after Matt and Cassie had difficulty becoming pregnant.

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Dr. David Leonard, Sam Santhuff's doctor at Children's Hospital in St. Louis, wears a "Super Sam" T-shirt.

“My first question to Dr. Leonard was — Did we cause this somehow? Was it our selfishness? We had to have kids. Did we do this and then we sentenced our son to this evil?” Cassie said.

Leonard calmed the parents, Cassie said, when he explained that rhabdomyosarcoma develops in the embryonic stage when a germ cell, in simplest terms, goes bad. He continued to say that the cancer affects people of all ages, races and genders.

“We needed that,” Cassie said.

Then, Leonard tackled what the Santhuff family calls the “nightmare surgery” — a 12-and-a-half hour procedure to remove Sam’s tumor. The tumor was removed, but after time and time again of shaving parts of Sam’s face to remove the cancer cells, physically removing the cancer was no longer possible.

“(Dr. Leonard) had been crying. His eyes were swollen. He had to have had to compose himself before he came and talked to us,” Cassie Santhuff said.

In total, Sam has undergone six surgeries within five weeks to remove the tumor, reconstruct his face and develop Sam’s nostril, using a tube to replace his nostril at times.

Becoming “Super Sam”

Cassie said she was in a Dick’s Sporting Goods store when she noticed the Superman symbol that sparked an idea. It was the start of Sam’s popular nickname, “Super Sam” and Cassie has sold “Super Sam” T-shirts to raise awareness about childhood cancer and Sam’s condition. Being “Super Sam” gives Sam a reminder to be like the superheros he looks up to. Images of Batman and Spider-Man are on the walls of his room. He carries around a stuffed Teenage Mutant Ninja Turtle with him. Sam’s favorite Ninja Turtle is Raphael.

“Why is he your favorite?” Cassie asked Sam during an interview with the Fulton Sun on Friday.

“He’s the leader and he likes to fight a lot,” Sam said.

“And what do you fight?” Cassie said.

“Cancer.”

Sam’s grandmother embroidered the Superman symbol with the words “Super Sam” on a red cape for Sam to wear on his first day of chemotherapy on Oct. 1.

After the many rounds of chemo, Sam’s personality changed. Cassie said she doesn’t mind Sam losing hair, but it makes her angry when he loses his personality.

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Sam Santhuff and his twin sister Ava pose during a photo shoot. Soon after Sam Santhuff was diagnosed with cancer, a friend of his parents, Cassidy Barton, volunteered to take family portraits before Sam's appearance changed.

“He’s fun and sharp, witty and energetic. He has a real kindness,” Cassie said. “It took that away … I believe Sam’s still in there … We’ll get him back.”

Ava, Sam’s twin sister, is healing for Sam, their mother said. On the phone, Ava asks Sam about his surgeries and treatments — not something regular 5-year-olds chat about, she added. After reconstruction surgery on his face, Ava visited Sam at the hospital and played together in the hospital’s play area.

“It puts their normal back when they’re together,” Cassie said.

Only option, best option

Sam and Cassie flew to Florida on Saturday in the hopes continuing to “kick cancer’s butt.”

For one month, the mother-son duo will live in Jacksonville as Sam undergoes proton therapy at the University of Florida Proton Therapy Institute. The proton therapy will target the remaining cancer cells in Sam’s head and be able to attack it without having an exit point. Although there is a possibility of side effects, because proton therapy does not have an exit point, it highly lessens the chance of dangerous side effects.

The radiation will enter through Sam’s front teeth. It’s likely, Cassie said, Sam won’t develop adult teeth there. The therapy could also give him cataracts, but won’t affect his vision. With the therapy being near his brain, Sam may not be able to learn as quickly as before.

“That’s one of our biggest fears,” Cassie said.

Proton therapy, Matt and Cassie agree, is the best option for their son, and therefore, the only option.

Throughout the whole process, Cassie said she and Matt are proud of how Sam has fought. The Santhuffs attend church at First Christian Church in Fulton and the twins go to school at St. Peter Catholic Church.The two churches teamed up on Saturday to hold a chili and hot dog supper fundraiser to help pay Sam’s medical bills and traveling expenses.

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Five-year-old Sam Santhuff, who was diagnosed with cancer in August, looks at a flyer for a chili and hot dog supper fundraiser in his benefit. St. Peter Catholic Church and First Christian Church, both in Fulton, teamed up to sponsor the event.

Having faith in their lives has proven to be effective for Sam, whom Cassie said talks about God and how He is going to take care of him.

“Sam said that God said, ‘Everything is going to be OK,’” Cassie said.

On the back of “Super Sam” T-shirts is Sam’s favorite Bible verse, Philippians 4:13:

“I can do all things through Christ who strengthens me.”

Matt and Cassie call themselves advocates for childhood cancer research — which, according to the St. Baldrick’s Foundation, only receives four percent of government’s funding toward research. Adult cancers receive the other 96 percent.

After Matt and Cassie use monetary donations for their expenses, they plan to start a foundation in Sam’s name toward childhood cancer research.

Those wanting to donate to “Super Sam” can send check to First Christian Church located at 6 East Fifth St. in Fulton. People can also donate online.

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