Novel approach ahead for cancer patient
VILLA GROVE — It was Tom Ryan's smile and kid-at-heart personality that first drew his wife, Staci, when they met at a New Year's Eve party 12 years ago.
Through four struggles with cancer, Tom has remained the same fun-loving guy she loves, Staci says, and even the fifth cancer diagnosis he got recently hasn't dimmed his positive attitude.
"He's been through so much in his 46 years, but he does it with a smile," she says.
Tom Ryan has what doctors call an unusual medical condition, and they've suggested a novel approach to treat a disease that has left them without other options.
Ryan is one of six members of his family to have inherited WHIM syndrome, a rare immunodeficiency disorder that leaves people more susceptible to life-threatening infections and HPV (human papillomavirus), which can cause warts and lead to cancer.
WHIM syndrome has been found in only about eight families worldwide, says University of Chicago Medicine head and neck surgeon Dr. Elizabeth Blair.
Ryan has been going through various treatments and surgeries for cancers, mostly in the mouth and throat area, since 1999, and has reached his limit for chemotherapy and radiation treatment. So his doctors are looking to treat his fifth case of cancer, discovered this time in his left lower cheek and jaw area, with a stem cell transplant.
"At this point, there is no good option to get rid of this cancer," says Dr. Tanguy Seiwert, a University of Chicago Medicine head and neck cancer specialist.
A stem cell transplant to replace Ryan's immune system is a "bit of a bold idea," Seiwert says.
Doctors link Ryan's cancer to HPV infection. For most people, the body is able to clear HPV on its own without health problems, but Ryan's genetic condition has left his body unable to mount a defense, Seiwert says.
Stem cell transplants are typically used to treat leukemia and lymphoma, he says, and the hope for Ryan is that a transplant would clear his immune system of HPV and possibly take care of the cancer.
"If you give him normal bone marrow, he might be able to tolerate normal dugs, have his immune system working better," Blair says. "Nobody has a lot of experience with this."
It's a procedure only for a high-risk situation, Seiwert says. Ryan's chances of surviving it are 70 percent, he says, "but we believe there is a strong chance it will work."
Three of Ryan's siblings also were born with WHIM syndrome, along with a niece and nephew, but three of his other siblings are free of WHIM and two of them are potential stem cell donors, he and his wife say.
A 'love match'
A self-employed tax accountant who originally hails from Downers Grove, Tom Ryan and his wife, an office manager at the University of Illinois Department of Chemistry, moved to Villa Grove a year ago and now make their home there. Staci Ryan, 37, grew up in Villa Grove, and the couple wanted to be closer to family, she said.
Tom Ryan's first run-in with cancer was in 1999. It returned in 2005, 2008 and 2011, with the last case being a small tumor being removed from his lower chin.
His past cancers were all treated, but the radiation and surgeries took their toll on him, he and his wife say. His gums deteriorated and his teeth had to be removed. He suffered from skin necrosis, or tissue death, which left facial gaps that had to be covered by flaps. His mouth has been left permanently open, and his nourishment now comes from a feeding tube.
Ryan was due to undergo facial reconstruction surgery this past June, but a month beforehand, doctors found his latest cancer.
Blair, a doctor the Ryans say has long treated Tom and already saved his life three times, has gotten to know Tom and Staci Ryan and the family over the years.
"He's such a nice and gracious and wonderful person," she says. "It's one of these cases where he always has a phenomenal attitude."
And even when he's sick, Blair says, Ryan has always worked as long as she's known him, to the extent of having family members bring tax files to him in the hospital.
He and his wife, "they're clearly a long-standing love match," Blair adds. "They're very dedicated to each other."
Doctors are pushing the limits for Ryan, Blair says, "but if you can't push the limits for somebody like this, who can you push it for?"
'Let's just do it'
Staci Ryan says she and her husband have been married for nine years and were both business majors at Eastern Illinois University, though they didn't know each other during their college years.
The two of them are avid White Sox fans, have six cats, love to dress up in costumes at Halloween to pass out candy and describe themselves as "Disney addicts."
Their goal is to get back to Walt Disney World, where they spent their honeymoon, hopefully by 2016, for a 10th anniversary trip to renew their wedding vows — wearing prince and princess costumes.
Tom Ryan says he's learned to live with the effects of his disease and treatments and he's all for the transplant procedure, high-risk and all.
"Let's just do it," he says.
"We would rather try something that would cure him than a complete death sentence," his wife adds.
Seiwert said this transplant stands to be done soon, and the Ryans will face months in the Chicago area during and after the surgery.
"These are really heart-wrenching situations," he says. "He'll have to be in the hospital a long time."
The Ryans have health insurance, but don't know what their out-of-pocket expenses will be for medical costs, lodging, transportation and meals through the transplant and after. They're fund-raising with the help of some Villa Grove businesses.
They've set a $100,000 goal — one they don't expect to quite meet, Staci Ryan says — and have raised more than $9,500 to date. (To follow their progress or make a donation, visit gofundme.com/TomRyan).
Meanwhile, they're looking forward to a White Sox game Aug. 30.
Staci says she arranged it with the White Sox marketing office, which got them tickets, parking and into batting practice for the day.
"I just want to set up something fun before all the grueling medical stuff happens," she says.