The Herald-Palladium, 8/16/2009

Hannah’s story

Father pens memoir about family’s journey through childhood cancer

By JEREMY D. BONFIGLIO
H-P Features Writer

ST. JOSEPH – The money helped a little.

One dollar for each shot. The deal Hannah Kelly made with her grandfather, Ken Kelly, seemed pretty good to a 10-year-old with cancer.

“I’m not sure how much I ended up with,” Hannah says, smiling, “but I know I made over $100.”

It’s been two years since Hannah made that deal. Her right forearm, which once housed a golf ball-sized tumor, is now cradled in a brace. She gently places it on the dining room table next to a book, her book, in the Kellys’ St. Joseph home. Hannah’s father, David Kelly, wrote the memoir, “Time Out: A Family’s Journey of Hope and Faith through Childhood Cancer,” to chronicle the struggle through surgeries, radiation treatments and the loss of Hannah’s now long blonde hair.

“Cancer takes over everything,” David Kelly says. “You have to take a timeout from your life just to be able to fight it. That’s how we came up with the title for the book.”

The last thing I remember from that day is the doctor telling us, “You have this room as long as you need it.” I didn’t want the room … I wanted this to be something simple, something fixable and something that wouldn’t have the word cancer in it. – From “Time Out: A Family’s Journey of Hope and Faith through Childhood Cancer” by David Kelly.

Before Hannah’s cancer, David Kelly’s blog was a simple tool the elementary school teacher used to post lists of spelling words or questions he heard at parent-teacher conferences. That changed when his daughter became sick.

“I was suddenly writing every day,” David Kelly says. “At first it was to let people know what was going on with Hannah and about the treatment that day. Then the more I wrote, the more it became this narrative story.”

He began jotting down each painstaking detail: How people only referred to the hospital’s pediatric oncology department as “16” because it was on the 16th floor; how Hannah and her mom, Kim, would lock hands and count to 20 each time a shot was involved; and how a simple phrase such as “see you in three months” can be the best thing you’ll ever hear.

“All along people would post comments saying, ‘Well, this needs to be a book,’” Kim Kelly says. “We started talking about it, and we figured if we could get this story in someone’s hands, we would be doing a good thing.”

“Have you noticed this?” My wife Kim pointed out Hannah’s then strange lump. We took a closer look and discovered a redness sitting on a small bump just below the wrist.

Hannah Kelly was born with a tumor near her right wrist. Believing it was a grouping of blood vessels, their local pediatrician referred them to a specialist at the University of Chicago. Doctors monitored the mass for nearly two years. Then, when Hannah was old enough, they took a biopsy. After weeks of uncertainty and a trip to the Mayo Clinic in Rochester, Minn., the Kellys had their answer. It was a tumor, but it wasn’t cancer. The fibrous mass might wrap itself around muscle and tendons, but it was more likely that it would shrink on its own, dissolving into the body.

Every other year, the Kellys made the trip to Mayo to monitor the mass. Each time for the next seven years, they left the clinic knowing that the mass had either shrunk or stayed the same.

Four months before their next scheduled scan, in April 2007, Hannah noticed the lump in her right forearm.
“I couldn’t sleep because it hurt,” she says. “It was big.”

The Kellys went to the emergency room, and 10 hours later they were headed back to the Mayo Clinic. A few days earlier Hannah was celebrating the final game of an 18-6 season with the other 10-year-old girls on her junior travel basketball team. Now she was in a hospital bed. Now it was cancer.

“I always thought cancer would kill you,” Hannah says. “I thought I was going to die.”

You don’t want to give away the fact that you’re scared, anxious and on the brink of losing it all together. After all, I’m the dad. I’m supposed to be strong for the rest of us.

Hannah’s tumor was something even the doctors at the Mayo Clinic had rarely seen. Not only was it an unlikely find in the arm of a 10-year-old girl, it was also unusual among adult cancer patients as well. Rare meant tests. Lots of tests. Tests that were being closely studied not only by Hannah’s doctors but by the National Group of Oncology.

“At the beginning, when you find out your child has cancer, you can’t breathe,” Kim Kelly says. “You can’t eat. You feel like you’ve been hit by a truck. Then you’re watching your child become sick and weak, and you just never know what will happen next.”

Before doctors could attempt to remove the tumor they needed to shrink it. That meant six months of chemotherapy and 20 days of radiation. It also meant Hannah would lose her hair.

The first thing (the hairdresser) asks is “Would you like to wash your hair?” I didn’t want to but I had to … I ended up with a chunk coming out … I could feel the bald spot. When I got into the car I started to cry and so did my mom.

Months of chemotherapy and radiation was supposed to stop the cancer and shrink the tumor. Doctors had told the Kellys that if those treatments could kill all the cancer cells, removing the tumor would be all that was left. A pre-surgery MRI showed that the mass hadn’t gotten smaller, and after all the radiation pellets, the shots, the chemo, the cancer was only 15 percent destroyed.

“Hannah put her hand on my leg and said ‘Mom, it’s going to be OK,’” Kim Kelly says. “She was comforting me. That’s how this whole journey has been.”

A debate had been going on behind closed doors. There were consultations and phone calls to other hospitals. The subject? Would Hannah would come out of surgery with one hand or two.

“The doctors were kind of at an impasse,” Kim Kelly says. “They were going back and forth on whether they would have to amputate the arm. I asked, ‘What’s the right thing to do?’ Then they told us, ‘If this is our child we would keep the arm.’”

The first surgery was complicated but short as doctors cut muscle, freed tendons and removed the tumor. Hannah’s arm hadn’t been amputated, but it was hardly intact. Reconstruction included a tendon transfer, removing nerves from the bottom of both legs to put into Hannah’s arm, and the general tying up of loose ends, but the tumor was gone.

There would be rehabilitation and more treatments. Casts and tubes. There also would be a few scares – fevers and risks of infection. It was the new normal: school, shuffling between sporting events for sons Sam and Max, yard work and the usual barrage of household chores. There was also the constant thought: What if the cancer comes back?

It surrounds you when you least suspect it and engulfs you in one gulp … My normal is no longer. I build a fence and think about cancer. I go to grocery shopping and think about cancer. … It’s a pass-fail that you don’t want to face, and it’s a pass-fail that you can’t prepare for mentally.

David Kelly began looking through the passages on his blog. They were words that filled the moments when all he could do was sit in a waiting room. They had touched not only his friends and family but strangers who had somehow found their way to his little corner of the Internet.

After multiple suggestions and the prodding of his wife, it was time to see if there was in fact a book to be written. He sent out some passages to a few Christian publishing houses to gage their interest. Tate Publishing called him to discuss the idea, but after David Kelly discovered they only publish 4 percent of the manuscripts they receive, he didn’t think he had much of a chance.

“Then, one day there was a contract in the mail,” David Kelly says. “That’s when I panicked.”

He started writing in November 2008, using those passages as a guide. By June, he was proofing the final copy with friends, family – anyone who would look at it. The book will be released on Oct. 20, but Tate Publishing was going to send him some advance copies to sell at area book signings. Two weeks ago there was a knock on the door.

“The UPS guy was standing there and he said, ‘Yeah, I’ve got 19 boxes for you,’” David Kelly says, “that’s when it really hit home.”

“We have clear scans.” Those are the words of celebration, the words of another three months of life, the words that make you want to go eat some wings!

Hannah’s latest surgery was this summer. In order to straighten her wrist doctors had to release muscle and tendons from the bone, making her hand almost useless.

“I can turn out the light, but that’s about it,” she says.

The next step in the ongoing reconstruction is to remove muscle from her left thigh to place in her arm. In the meantime, she’s been speaking for the United Way, raising awareness about cancer in children and now, with the book, is scheduled to stand by her dad for several book signings.

“The hope for the book, even for people who might not have traveled the same journey, is to know that (getting through it) is doable even through the ups and downs,” David Kelly says.

“If we can give anybody hope,” Kim Kelly adds, “then that’s a good thing.”

If there’s a fear that the cancer will return, you can’t see it on Hannah Kelly’s face. Her smile, which now includes braces, is infectious as she gushes about how she can’t wait to turn 13 in November. November is also when she will travel back to the Mayo Clinic for what only a doctor would describe as a “routine” scan. If it’s clear, she won’t have another for six months.

“There’s always going to be a monster in the closet,” Kim Kelly says. “You can’t stop the door from opening, but you also can’t live in fear that it will.”

jbonfiglio@TheH-P.com