Mount Vernon rallies around teen with rare cancer

MOUNT VERNON — The night of Mason Kumley's freshman homecoming this fall at Mount Vernon High School, his stomach began to hurt. It wasn’t bad enough to keep him from dressing up, heading out for Mexican food with friends and going to the dance.

But the pain remained the next morning.

“He came down after a shower saying, 'I was hoping the warm water would help my stomach pain like it did yesterday, but it didn't’,” Mason's dad, Dan Kumley, told The Gazette.

The family decided to take 14-year-old Mason to urgent care in Marion, where he was referred to the UnityPoint Health-St. Luke's Hospital emergency room. Providers there — after a wait — took images that found a mass in Mason’s pelvic area.

The discovery precipitated an ambulance ride to the University of Iowa Stead Family Children's Hospital — which was concerning enough.

“But we had no idea we were going to the 11th floor,” Mason’s mom, Danielle Kumley, said of the UI Dance Marathon Pediatric Cancer Center floor. “That isn't what you want to see.”

Because Mason had to wait several days for a biopsy, the family returned home and hoped for the best. “I wasn’t going to go there,” Danielle said.

A week later, on Oct. 9, Dan was at the bank where he works for a training event when his phone flashed a UI Health Care number.

“I left the group and went to my office, and the oncologist just said, ‘Is this a good time to talk? Do you want me to call you later when you're both together? Or do you want to know the results right now?’” Dan said. “I guess I just felt like I couldn't really wait to get home.”

On that call, Dan learned his only child had cancer — a rare form of soft-tissue sarcoma known as rhabdomyosarcoma — in his pelvis.

“It certainly was not what I was expecting or hoping to hear,” he said. “It was pretty shocking and overwhelming, actually.”

Dan asked the oncologist to call back in a half-hour so he could drive home to be with his wife. Then he called her, shared the news, and told her they would have the opportunity to ask questions and hear specifics from a medical professional.

“In the emergency room,” Danielle said of her experience days earlier, “we just kept thinking, ‘What if this is the day you find out your kid has cancer?’ You don’t ever want to think that. We were hoping for the best. I wasn’t going to go there. It’s devastating.”

Over a year of chemo

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Mason rarely was sick as a kid. He never needed antibiotics; had no family history.

“So this hit us all completely out of left field,” his mom said. “We were completely blindsided.”

Described by his parents as smart beyond his years, with a dry sense of humor, Mason was just starting to spread his teenage wings, gaining more independence, and looking forward to his first high school season of soccer — a sport he’s played since age 4.

“In that same dry way of looking at the things, he said, ‘You know, I'm not surprised’,” Dan said of his son’s reaction to the diagnosis. “‘I figured it would be, so that I couldn't be disappointed if it was, but I could be happy if they said it wasn’t.’”

The overall incidence rate of rhabdomyosarcoma is about 4.5 patients per million individuals under age 20 — or about 350 new cases a year in the United States, according to the National Institutes of Health.

More tests of Mason’s tumor revealed it has spread to a lymph node and his bone marrow.

“That makes it stage 4,” Danielle said, indicating Mason’s chemotherapy had to start right away.

Before the treatment began, though, Mason on Oct. 13 was back in the hospital for leg pain, followed by a procedure to prepare him for chemotherapy — drawing bone marrow from both hips and inputting a port.

Doctors also did surgery to address complications from the tumor’s location, although they weren’t able to remove it. “The fact that it's also in that bone marrow and in the lymph node, it's not just addressing the one mass,” Dan said.

Mason’s first course of chemotherapy — which started Oct. 17 — is scheduled over 13 weeks, or about four rounds of three weeks each.

“After the 13-week cycle, they’ll rescan, image everything again, and see how it's responding,” Dan said. “At that point, they’ll most likely add radiation treatment to the chemo.”

In total, Mason’s treatment is expected to run 60-some weeks — including maintenance chemotherapy.

“Over a year we’ll be doing chemo treatment,” Dan said, noting Mason so far has “handled it pretty well.”

He did start losing his hair the second week. And just a day after coming home from his first hospitalization Oct. 13-22, Mason was readmitted for a fever of over 101.

“At that point, his white blood cell counts were essentially zero,” Dan said. “He had no immunity to be able to fight any infection.”

Mason again was hospitalized from Oct. 24 to Nov. 5 — keeping him out of school and any other form of normalcy he was growing accustomed to as a new high schooler.

“His principal has been outstanding,” Dan said. “They reached out and said we'll do whatever. They do have him set up to do online classes at this point, from home, but we have not started those yet. It's just a matter of when Mason feels up to it.”

In the early days of his care, Mason didn’t feel like doing much, his dad said.

“I think it was a new enough situation, and he wasn't feeling great,” he said. “He really didn't feel like participating in the hospital activities.”

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Mason did get to watch from the Children’s Hospital 12th floor the Crossover at Kinnick game pitting the Hawkeye women’s basketball team in a record-setting outdoor game against DePaul University in the football stadium.

“And then we also went the following week for the football game — just for that first quarter,” his mom said, referencing the Hawkeye fan tradition of waving from inside Kinnick Stadium to kids in the neighboring Children’s Hospital during home games.

But the family also has had to navigate the conflicting need for extended hospitalization with a 14-year-old’s desire for independence.

“A hospital stay where you've got somebody in the room every 15 minutes — it feels like it's certainly a big change from going to hang out in your room by yourself and doing what you want,” Dan said.

Danielle said Mason has asked “if dad and I would maybe find something else to do and let him have a little time alone in his room.”

“We were happy to do that.”

Mason United

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The teen’s friends also have been great — along with the rest of the Mount Vernon community, which convened recently for a photo shoot to show support for Mason, according to one of his longtime soccer coaches, Richard Lewis.

With the sun setting on an unseasonably warm November day, dozens of friends, teammates and families convened on a local soccer field Mason knows well — all wearing “Mason United” gear designed to raise money, support, and Mason’s spirits. Teammates signed a soccer ball; community members signed a high school jersey.

Mount Vernon “is rallying around one of its own,” Lewis said, noting a turnout of 50 for the signing and photo would have been a good number.

“I would have considered that a great turnout,” he said. “And we got at least double that. Maybe even close to triple that number, which is simply amazing. It just shows you people in this community really do care about each other.”

Mason, feeling overwhelmed by his new reality and the swell of support for something so outside his control, stayed home during the event. His parents went, although Danielle empathized with her son’s emotions.

“I don't know how a 14-year-old would handle it,” she said. “It’s going to be emotional, and I'm going to be a hot mess. I'm just going to have to be fine with that. I’m going for the hugs and the support.”

After the evening, Danielle told The Gazette it was a beautiful snapshot of the support they have and continue to receive.

“Friends even dropped off the whole Thanksgiving meal for us, so all I’m doing today is heating things up,” she said Thursday, giving her the capacity for gratitude in the midst of pain.

“Mason has been dealing with neuropathy in his left foot, and we’ve been struggling to find the right combination of medicines and other devices to give him relief,” she said, noting — even for that — friends and neighbors have left outside their door essential oils, compression socks, and a nerve stimulation TENS machine.

“When people show up … when you literally have people showing up, that means a lot,” Lewis said. “It’s a physical manifestation of this is how we feel. This is how our community feels about you all, especially about your son.”

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How to help

For a way to support Mason and his family, visit causeteam.com/causepages/detail/mason-kumley#cause-info

Comments: (319) 339-3158; vanessa.miller@thegazette.com