High hopes for recovery
Seven-year-old's leukemia changes family dynamic
Leukemia hits a family in ways you might not expect.
Take, for instance, having time to play with your brother.
“He’s changed a lot,” says 9-year-old Brogan Ryan about his 7-year-old brother Seamus.
Seamus is nearing the one-year anniversary of his battle with leukemia.
“He’s been slower,” Brogan says. “He gets cold a lot, and he doesn’t really play or he’d get really hot. If we play on the trampoline, he’ll get tired a lot. I really want to play on the trampoline more.”
When Seamus is in the hospital – he’s been admitted to Children’s Mercy in Kansas City, Mo., about eight times in 10 months – Brogan and his brother and sister don’t even try to divide up and play board games like Life and Clue, the way they used to. It’s hard to divide up when there are just three playing, instead of four.
“If Seamus is gone,” Brogan says, “we usually can’t play any of those games.”
The Ryans have learned, since Sept. 23, 2005, it’s not just the patient who battles leukemia – it’s the entire family, including parents Kelly and Becky, Brogan, 11-year-old daughter Molly and 6-year-old son Teagan.
Sept. 23 was the date Seamus was diagnosed with cancer following several weeks of low-grade fevers and pale skin.
The family also has learned, even with health insurance, it’s an expensive disease to fight. Besides the thousands of dollars of medical care, there are the gasoline bills, fast-food bills and time spent away from work.
That’s why the Ryans applied for aid from the Erin Audra Wilson Foundation, a Kansas City, Mo.-based foundation that assists families battling cancer. On Saturday, Moms Offering Moms Supports (MOMS) club of Lawrence will have a third-annual benefit concert, featuring Jim Cosgrove, to support the foundation.
So far, the concerts have raised about $8,000 for Lawrence families whose children have cancer.
“You want to focus on your child getting better,” says Barbara Novorr, who is organizing the concert. “You don’t want to have to think about the money part. Hopefully, the money for the fundraiser will make it a little easier for a family going through this.”
Seamus Ryan, who just finished first grade at Quail Run School, looks like any other kid with a summer buzz-cut.
Truth is, his blond hair just started growing back from the chemotherapy.
He has grand ambitions when asked what he wants to do when he grows up.
“I want to be an archaeologist,” he says, punctuating each syllable of “archaeologist.” “I want to go to Egypt and places and discover new stuff.”
King Tut, he says, sparked his interest.
He’s less talkative when asked what he thinks about having cancer.
Attend the concert
What: Concert featuring children’s singer/songwriter Jim Cosgrove & The Hiccups, organized by Moms Offering Moms Support.
When: 10 a.m. Saturday
Where: Free State High School, 4700 Overland Drive
Tickets: $5 at Hy-Vee Food Stores, 3504 Clinton Parkway and 4000 W. Sixth St., and at the door. Proceeds from tickets and silent auction benefit the Erin Audra Wilson Foundation, which gives financial support to families with children who have cancer.
“It’s OK,” he says, in a matter-of-fact tone.
His parents, Kelly and Becky Ryan, say he’s been that way since being diagnosed. He’s been in the hospital for several different infections – rotavirus, pneumonia and chickenpox, among others – but has kept fairly upbeat.
“It comes and goes, but generally he’s been good,” Kelly Ryan says. “He’s had some rough days. Sitting in the hospital for two weeks and being confined to an 8-by-10 room, you can imagine that’s pretty danged hard on a guy.”
Seamus missed about 100 days of school last year, and he couldn’t perform gymnastics or play soccer. But he managed to get back to his coach-pitch baseball team, the Royals, this summer. He’s hoping to play his favorite sport, soccer, again this fall.
“You can notice differences in him compared to other people, just in the energy he has,” Becky Ryan says. “He runs slower than other kids and just doesn’t have the energy other kids do. But he wants to be out there and do what everybody else is doing. He’s more easily tired – he’s still not like other kids, to have the energy to go out and play a full game of baseball or go and swim.”
Seamus got through the first intensive six months of chemotherapy. Now he takes a daily pill and goes to Children’s Mercy once a month for chemo. It’ll be that way for another two years, as doctors wait to see whether the cancer reappears.
“In a maintenance phase, you kind of wait and see what the leukemia is going to do, whether it’s going to come back,” Becky Ryan says. “We say to people this is the hardest time.
“For me, this is when I’m the most stressed. Every time there’s blood work done, I as a parent wait to see if there’s any new (cancer). So as a parent, that’s what I’m always worried about hearing.”
Doctors say the survival rate for Seamus’ type of leukemia is around 80 percent.
“We’ve read stuff, and they pretty much say that before with leukemia, you’d think of it almost as a death sentence,” Becky says. “Now, you don’t think of it like that at all. You think of it as something you go through and you survive it.”
The Ryans say their neighbors and friends at Corpus Christi Catholic Church have provided support through the last year.
An unusual coincidence also brought them another form of support.
One of Seamus’ classmates at Quail Run, Emily Venters, was diagnosed with leukemia at age 3. Emily, who initially sparked the MOMS club to start the benefit concert, now is back to a regular lifestyle.
Emily’s mother, Tricia Venters, talks with the Ryans on a regular basis.
“It’s encouraging to see someone ahead of you who’s doing well and acting normal,” Kelly Ryan says. “That really gives you a lot of hope.”
Tricia Venters says she tries to tell the Ryans what to expect in the upcoming weeks and months. And she tries to fill them on details the doctors might forget, like that fact that the drugs keep children from sleeping well and mute their taste buds.
“It feels like forever in the beginning,” Venters says. “A new family coming in feels so hopeless. Now, looking back, I realize it’s just a little part of (Emily’s) life.”
At school, Emily talked with Seamus about her disease. Generally, Venters says, Emily avoids talking about cancer, explaining why she didn’t want to talk about Seamus’ illness.
“Emily doesn’t want to talk about it anymore,” Venters says. “She says she wants to be in the paper for happy stuff.”
After the first three years of chemotherapy are done, the Ryans say they have an additional two years before doctors declare Seamus cancer-free.
“You think the first three ought to be pretty easy – I mean, pretty confident, because he’s under constant care,” Kelly Ryan says. “And the last two, you don’t know. It is a little more reassuring when he’s being seen by the doctor. You know they’re watching him like a hawk.”
But they’re trying to move their family back to a normal lifestyle, with fewer visits to Children’s Mercy and having Seamus around the house more often.
Molly, 11, says she’s ready for things to be back to normal.
“I want to know what’s the matter with him,” she says. “I’m not scared anything bad’s going to happen.”
She liked to rub Seamus’ bald head, just to irritate him. Now that his hair is growing back, she still does it – and it irritates him just as much.
Brogan, the 9-year-old brother, says he’s looking forward to having Seamus around and willing to play more.
“I like spending time with him and stuff,” Brogan says.