Battling from birth: Hastings baby diagnosed with rare cancerIt’s always a shock for parents to learn their child has cancer, especially when the child is still young. For the Stapleton family, the shock came when their son, Marek, was only seven weeks old.
By: Katrina Styx, The Hastings Star-Gazette
It’s always a shock for parents to learn their child has cancer, especially when the child is still young. For the Stapleton family, the shock came when their son, Marek, was only seven weeks old.
Marek is the third and youngest child of Hastings residents Jason and Krissy Stapleton. The Stapletons’ older daughters are Hailee, 6, and Piper, 1.
Krissy only stayed in the hospital 24 hours after Marek was born. It was a whirlwind of tests and paperwork, Krissy said, and although she never got much time to thoroughly look him over herself, baby Marek passed all his screenings.
It was when the Stapletons got home that they noticed that Marek’s left foot was just a tiny bit bigger than his right. Two days later, they had the doctor and head nurse look at it. They thought it was simply a sprain.
“It didn’t go away,” Krissy said. “In fact, it had gotten larger.”
After another two weeks, the doctors had another theory: it was a vascular malformation. Marek was sent the following week to have an ultrasound done at Children’s Hospital. The ultrasound seemed to confirm the diagnosis, and the Stapletons were sent to an oncologist, who would be better able to treat the tumor. There was no concern over the swollen foot being cancerous, however, so Jason and Krissy were still calm, Krissy said.
At five weeks, the foot was still growing, and the skin had become taut and shiny, Krissy said, so they scheduled a follow-up visit.
“At that point it was growing so quickly,” she said, she was afraid Marek’s skin was going to break.
The doctor didn’t think it was an emergency though, and sent the family home. About a week and a half past that, Marek’s foot started to look especially big, and it changed color and developed stress lines. That same night, a Friday, Krissy and Jason took Marek into Children’s emergency room to make sure the foot hadn’t gotten infected. They expected to be seen and sent home, Krissy said. Instead, “more doctors than we can count” came to see Marek’s foot. All of them said it was something they had never seen before, and the behavior was uncharacteristic of a vascular malformation, even though it still looked like one.
They stayed in the hospital over the weekend for more scans and tests. That Tuesday, the doctor said it was a venal lymphatic malformation. While going over the MRI, he pointed to a dark spot and said that was “probably” the malformation and a surgeon confirmed it. He suggested a couple medications they could give Marek, but the Stapletons weren’t comfortable with the medication. The condition wasn’t life threatening, and the medicine came with a list of severe side effects. The only option, then, was to wait.
A second opinion
The drive home left Krissy and Jason feeling uncomfortable. Their parents encouraged them to get a second opinion, so the next day Krissy called the Mayo Clinic and scheduled an appointment for Oct. 1 – four weeks out. Concern from their parents led Krissy to call again the next day to check if there had been any cancellations. There had been, and the appointment got moved up to the middle of September.
Once at Mayo, Krissy relayed the whole story to Marek’s new doctor. He called in an orthopedic surgeon and two radiologists to see what they could make of Marek’s foot.
“None of them could for sure say it’s a vascular malformation,” Krissy said.
The next day, Marek went back to Mayo for a biopsy and an ultrasound. When the biopsy results came back, they showed abnormal cells. It still could have been non-cancerous, but an hour later the doctor came in with a preliminary diagnosis of soft tissue sarcoma of some type. The next day, Thursday, he had narrowed it down to infantile fibrosarcoma. Of the three soft tissue sarcomas, it’s the best one to treat, he said. Still, it’s rare. Only about seven in one million infants are affected by it.
“It was a big shock,” Jason said. “…It’s scary too, because he’s only three months old, and how does this happen to a 3-month-old?”
“When they told us that he had cancer, I didn’t know what to expect at all,” Krissy said.
The day after Marek’s diagnosis, he started his chemotherapy. Now, he goes to Mayo every Friday. The morning is spent in labs having blood drawn and visiting with the doctor. The afternoons are given over to infusion therapy with one chemo medication. Every three weeks, they stay overnight for three types of chemo medications.
Marek was scheduled for six three-week cycles of chemotherapy. Already, Marek has had one blood transfusion because his hemoglobin dipped dangerously low. For now, the Stapletons are in a pattern of chemotherapy and monitoring. So far, it looks like Marek’s foot is improving.
“His foot is getting softer,” Krissy said.
Doctors are hoping to see the tumor shrink below his ankle so they can amputate his foot. Removing the tumor surgically on its own would be impossible because of how many tendons and ligaments run right through the middle of it.
Ultimately, both Jason and Krissy are hoping that chemotherapy and surgery will be enough to get rid of the cancer, and that Marek will grow up healthy.
They’re also thankful that Marek is facing his cancer at such a young age.
“He’s not going to remember any of this. We’re so thankful for that,” Krissy said.
He’s also young enough that he can sleep between his appointments and sometimes even during his doctor visits, and he’s not old enough to associate the hospital with the pains of his treatment.
Frustrations still remain, though. For Krissy, the lack of answers has been difficult to deal with. Marek’s cancer is rare enough that doctors don’t know much about it. The Stapletons have been told that the success rate is about 97 percent, but that’s based on sarcoma of the kidneys, since there isn’t much data on infantile fibrosarcoma.
And then there’s the frustrations of knowing how long the diagnosis was delayed. Krissy is confident that, had their first doctors run all the tests right away, the cancer would have been identified much sooner.
“They would’ve been able to just take it out and be done,” she said.
To help out with the costs of Marek’s care and travel to the Mayo Clinic, Jason’s parents are hosting a benefit event April 7 at the Hastings Knights of Columbus Hall. Money from the event will be used to help the Stapletons with medical bills, fuel to make the trips and food and housing for Jason and Krissy while Marek stays overnight in the hospital. They’re hoping to also raise enough money to help the Stapletons purchase a more reliable vehicle to make their trips to Mayo safer.
Two savings accounts have already been set up. Anyone who would like to help can donate to the “Miracles for Marek Benefit” fund at Vermillion Bank and Affinity Plus.
To read more about Marek’s story and to follow along as he progresses through his treatment, go to www.caringbridge.org/visit/marekstapleton.