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Chronicles of Keira: Medina family grieves with hope

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Every day 2½-year-old Grady Kilbane kisses a photo of his sister, Keira, good morning.

The family photo, taken shortly before Keira’s third birthday in December 2013, shows Keira with long brown hair. She is smiling. Her cancer is in remission.

Now the picture is one of a handful of connections Grady still has with his older sister.

In July 2014, at age 3½, Keira died of leukemia. Her short life, and long struggle, inspired her parents to start a charity, the Keira Kilbane Foundation, which supports families and funds research for pediatric cancer.

Jenn and Brian Kilbane of Medina are basing their efforts on their own experience, providing the same type of assistance that helped them when Keira was in the hospital.

“We’d be in (the hospital) months on end. That gives you an appreciation for some little things that are done,” Brian said. “It’s little things like that that we’re trying to come up with to help take people’s minds off things for a little bit.”

The first year

Keira was born on Christmas Eve 2010 to first-time parents Jenn and Brian. Brian said she was a good baby who often slept. Later they realized this was an early sign something was wrong.

When she was 2 months old, she started eating less and Brian said her skin turned pale. Concerned, Jenn and Brian called their pediatrician.

“We would call our doctor, our pediatrician at the time, and they were like it’s probably just a cold, just a cold, thinking it’s first-time parents freaking out over everything,” Brian said.

Eventually, after Keira’s grandmother agreed she was unusually pale, Jenn took Keira to the doctor’s office.

“Jenn took her into the pediatrician and pretty much didn’t leave until they saw her,” Brian said.

After several preliminary tests, the pediatrician sent her as a direct admission to Akron Children’s Hospital. They used a heel stick to test her blood again, which was pink instead of red.

“When it came out, it looked like pink sherbet,” Brian said.

A child’s white blood cell count should be 5,000 to 10,000 cells, according to Children’s Oncology Group. Keira’s white blood cell count was more than 150,000.

At 3 months old, she was diagnosed with acute lymphoblastic leukemia.

“Your white blood cells, they replicate until they hit a certain number and then they stop,” Brian said. “What happens with leukemia is one of those cells doesn’t have that trigger to turn off so it just keeps going and going and going and going.”

The family moved Keira to Rainbow Babies and Children’s Hospital in Cleveland where she underwent chemotherapy. Jenn and Brian lived at the hospital throughout much of the first year of Keira’s life. They would spend six weeks at the hospital, return home for one week, and go back to the hospital for another six weeks.

“The (nurses and doctors) became our family and we saw them more than our own family,” Jenn said.

Though her treatment was not easy, Brian said he learned somebody always had it worse no matter how bad he thought his situation was.

“If you go in there with the mentality, ‘Why me? Why me? Why me?’ that’s going to be taken away real fast when you see some of the other kids in there,” Brian said. “You’re going to be thankful that you don’t have it as bad as this person or that person, and I’m sure people felt that way about us.”

The Kilbane family became close with several families on the floor, including Jessica Potter, the mother of another child in the ward, who now sits on the board of the Keira Kilbane Foundation.

“The thing that really helped me when we first went in is Jenny Potter’s daughter was riding her IV pole like a skateboard up and down the hall. Oh my God, she’s still a kid, she’s still playing,” Brian said.

Returning to normal, returning to Rainbow

Keira responded well to the treatment and, after her first round of chemotherapy, went into remission. Her visits to the hospital and the outpatient unit became less and less frequent.

“We had done well and switched to go to once a month, and we were about to go to once every other month or once every three months,” Brian said.

In March 2013, just a month before her chemotherapy ended, her brother Grady was born.

The Rev. Thom Kowatch, a priest at St. Francis Xavier Catholic Church in Medina, said the siblings were close.

“It was quite evident that Grady and Keira had a special bond,” Kowatch wrote in an email. “He cuddled with her and she didn’t mind him being close to her or being touched. Despite their young ages, they had a strong bond.”

A fan of Hello Kitty and Jake and the Never Land Pirates, Keira often watched Disney Jr., sometimes with her brother.

But in late December she started losing interest in the TV shows. In the days leading up to her third birthday, she would lay in her mother’s lap and, alarmingly, lost control over part of her face.

“She was trying to smile but her face was droopy on one side and it didn’t stay that way,” Jenn said.

Jenn and Brian thought her symptoms might be Bell’s palsy, a virus that causes a weakness in facial nerves, or a cold that was being passed around the family.

They took Keira to an outpatient clinic in Brunswick where her white blood cell levels tested somewhat high, but consistent with a cold.

After Christmas, when Keira wasn’t showing signs of improvement, she returned to Rainbow Babies for tests. There, they found leukemia had returned. This time it was in her bone marrow and central nervous system, including both her spine and her brain.

Finding motivation

While Keira responded well to treatment after her diagnosis at 3 months, her return to the hospital in January 2014 was challenging, Brian said.

“This one was much more difficult because she didn’t respond very well and she was older so she knew a little bit more. She was able to fight a little bit more what they were doing,” Brian said.

Doctors put an Ommaya reservoir, a port for chemotherapy, in her head, adding to the many other ports on her body.

“She was so small that they were running out of spots to do it,” he said.

The leukemia was in her nervous system, which made physical activities more difficult for Keira. After her first diagnosis, she learned to walk and would run and play in the hospital halls. But, because of the location of the cancer, after her second diagnosis, she was shaky and she couldn’t stand or walk.

Later in the spring, she started having seizures, possibly due to prolonged exposure to chemotherapy, according to doctors.

Jenn said Keira rebounded after a few months but still spent a lot of time in bed. However, Keira wasn’t alone. Another boy in the ward often sat by her window and waved.

“The (kids) motivate each other to keep fighting,” Brian said.

The hospital restricted visitor access during cold and flu season, so her brother Grady rarely could visit. Instead, her parents showed her videos of Grady laughing.

“He helped motivate her when she wasn’t feeling well,” Jenn said. “They’d play around the halls. It was good because he made her kind of move around.”

By April, her cancer was in remission, but Keira needed a bone marrow transplant.

Help came from a stranger — a 33-year-old man named Benjamin Schulz, from Dusseldorf, Germany.

The transplant was successful and, by early July, she was almost 100 percent Schulz’s blood.

My Beaded Rainbow

On July 6, a little over a month after her transplant, Keira was flown to Rainbow Babies.

Doctors found the leukemia had returned to her nervous system again, but this time the family was out of options.

Since Keira was a recent transplant recipient, she was still on medications, which barred her from a new transplant. Her months of chemotherapy also had taken its toll on her body, possibly causing Keira’s seizures.

“They said we could have treated it but she wouldn’t have been herself,” Brian said. “They just put so many drugs in a poor little girl at such a quick time.”

Rainbow Babies has a program called My Beaded Rainbow where patients or their parents add one bead to a string for every procedure. Each procedure is documented by the patient in a booklet.

“With Keira, honestly, we didn’t do (the beads) for everything you could because it is supposed to be for every blood transfusion (and more),” Jenn said. “She had so many in and of the larger things — CT scans, lumbar punctures, radiation.”

From Jan. 2 to July 22, Keira collected about 150 beads.

“When I looked at all these beads and I looked at the book — that’s why she’s done. She’s just done so much and going through that exercise made me realize you can only handle so much,” Jenn said.

Keira died at Rainbow Babies hospital on July 22 at 6:12 p.m., the same time she was born.

The Rev. Kowatch officiated at her funeral at St. Ignatius of Antioch where he featured the lyrics to Steven Curtis Chapman’s song “With Hope,” a song about Chapman’s own daughter’s death:

“This is not at all how

We thought it was supposed to be

We had so many plans for you,” the song begins.

Grieving with hope

In November, Brian and Jenn started the Keira Kilbane Foundation.

“You make a decision at an eventual point where it’s too much and it’s not fair to them after all that. And really we were at a point where there wasn’t much of choice,” Jenn said. “That’s why we decided to start the foundation so other kids didn’t have to go through this.”

Both continue to work at day jobs from home — Brian at the Federal Reserve Bank and Jenn at Centene Corp. — and are on the foundation’s board. The four other board members also have been affected by childhood cancer. Brian Tompkin’s wife is a survivor of childhood cancer, Potter’s daughter was in the same ward as Keira, Holly Podbesek’s husband is a three-time survivor of leukemia and Dr. Alex Huang is the director of research at Rainbow Babies.

“It was important to us to make sure everybody knows why they’re there,” Brian said.

The foundation has raised about $50,000 through auctions and fundraisers since its creation. Jenn estimates the foundation has impacted 20 to 30 families through financial assistance and hospital functions such as a Thanksgiving party and New Year’s Eve party last year. Recently, the foundation donated $5,000 to a doctor working on leukemia research at Rainbow Babies and Children’s Hospital.

The foundation gives $500 to $1,000 to families with a child who has pediatric cancer. Jenn said most of the foundation’s work is local, based out of Rainbow Babies, but recently it assisted a single mother in Florida who also had a child diagnosed with acute lymphoblastic leukemia.

Brian and Jenn want to expand the foundation, so they can help more families before, hopefully, one day it becomes obsolete.

“The goal is to not give anything to anybody because a cure would be found,” Brian said. “That’s our ultimate goal, to not exist.”

Jenn said the foundation is interested in promoting research on immunotherapy, or using the patient’s own immune system instead of chemotherapy to control cancer. While 90 percent of children diagnosed with acute lymphoblastic leukemia survive five years after diagnosis, the survival rates for babies and older teens are about 20 percent lower, according to American Society of Clinical Oncology.

“You want to hear the good story but you also want to hear the bad to know we need to do something better,” Jenn said.

In the future, the board hopes to fund more research, families and maybe even part of Rainbow Babies’ new in-patient cancer floor.

“Brian and Jenn Kilbane grieve with hope and believe in hope,” Kowatch wrote in an email to The Gazette. “The foundation they have established expresses their faith and deep hope that all children may come to good health and smile as Keira does.”

Brian and Jenn said Keira is not forgotten and other patients often tell them how Keira helped them make peace with their own illnesses.

Grady hasn’t forgotten Keira either. Recently, he moved into Keira’s old bedroom in the Medina family’s house. He calls the room Kiki’s room.

TO DONATE

The Keira Kilbane Foundation accepts donations online at www.keirakilbanefoundation.org.

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