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“We’ve seen her improve, and we know that’s important, and she’s tougher than nails. She’s tougher than cancer, and she’s going to beat it. She’s got to beat it.”
— Wes Blair on his daughter’s fight against cancer
Kelly and Wes Blair knew there was something wrong with their daughter when she showed no interest in any of her presents on Christmas morning.
Addison Jo Blair, who will turn 3 on March 25, also wouldn’t eat and she loves macaroni and cheese, her father said.
“Nothing excited her,” he said. “That’s when we knew she was really sick.”
The bubbly child with a bright smile was lethargic, cried a lot and complained of pain throughout her legs. She walked gingerly and often asked to be picked up because of the pain.
Wes said the change in his daughter’s demeanor was, “Like flipping a light switch.”
Two days later, the Glendale residents were off to see a pediatrician. Addison had seen a doctor only a month earlier because she had suffered from three ear infections; not unusual for her, her parents said.
Then came devastating news: Blood work on Addison had come back with signs indicative of cancer.
The family was told to pack some belongings and prepare for a stay at Kosair Children’s Hospital in Louisville.
Addison was sedated for about two days as she went through tests at Kosair, including a bone marrow biopsy on both sides of her lower back, and an X-ray that showed a large and extensive tumor mass in her chest, Wes said.
Addison’s parents were shocked, never having considered cancer as a cause of their daughter’s ailments.
Then, things got worse.
The pressure of the tumor had halfway collapsed Addison’s left lung, and the tumor was secreting fluid. When doctors cut out a piece of the tumor for a biopsy, they put in a chest tube to drain the fluid.
The tube stayed in for three weeks. If the 2-year-old moved even a little, she got sore.
Doctors gave her morphine to help with the pain, but it gave her nightmares and made her itch. After three weeks, Addison had bed sores on her back mingled with sores from where she had scratched herself while itching.
The girl’s father could not stand to see his daughter so miserable and looking so sick.
“I didn’t know if we’d ever leave the hospital that first week,” he said.
Then more tests led to more bad news, he said.
“They all thought it was leukemia at first, which we didn’t want, but it had a high success rate,” he said. “They were confident that’s what it was, but then it came back some cancer I’d never heard of.”
Tests revealed that Addison had Stage IV neuroblastoma, which presents only about 650 new cases in the U.S. each year. It is the most common tumorous cancer among children, especially infants.
The cancer causes tumorous masses and usually originates in the spinal column. Addison’s begins at her neck and goes down her spinal column. Her advanced state meant her bone marrow was rapidly producing cancerous cells along with blood cells. The number of cancer cells being produced has decreased.
The cancer often is masked for a while by flu-like symptoms. Doctors said Addison’s tumor could have been growing between two and six months before she started showing symptoms.
Wes said medical professionals call the cancer a silent killer because it grows so fast.
“They say they hardly ever see a kid that’s not Stage IV,” he said.
Addison had to be put on chemotherapy sooner than expected to deal with the extent and danger of her condition.
The family spent a month in the hospital, during which Wes didn’t get to see his son, and his wife didn’t see him for much of that time. Wes said Addison never was left alone for one day during her illness, which he thinks has helped her a lot.
A history teacher at Central Hardin High School, Wes said he had plenty of sick days stored up and co-workers of his wife, a third-grade teacher at Lakewood Elementary School, have donated sick days to her. Wes understands that some parents of sick children can’t take off work for long periods. He also knows one of them will have to go back to work eventually, but they want to stay with Addison as much as they can.
Finally, Addison was allowed to go home and things began to improve.She runs around, plays with her 5-month-old brother, Brandt, and rides her tricycle in the basement. The music lover also beats on drums as she roams the house and dances to some of her favorite songs – “I Gotta Feeling” by the Black Eyed Peas, “I Need You Now” by Lady Antebellum and the Sunday Night Football theme sung by Faith Hill.
The University of Kentucky Wildcats, Central Hardin Bruins and Green Bay Packers fan also watches football, “Seinfeld,” “The Wonder Years,” “The Office” and “The Wizard of Oz” with her brother and parents. She watched a recording of the Super Bowl over and over after meeting Green Bay punter Tim Masthay a few weeks ago, her father said.
“The good news is that Addison is enjoying herself and that has really helped Mom and Dad,” he said. “We’re positive around her. We are not doom and gloom. We were there at one point, but we’re not there anymore.”
The Blairs always have encouraged the family to spend time together. They are grateful for every moment they spend together now, he said.
“We spend all of our time together,” he said. “We don’t miss a minute of it.”
After two cycles of chemotherapy, tests show that Addison’s tumor has shrunk and the level of cancer cells has been significantly reduced, Wes said.
“Her bone marrow is not clean by any stretch of the imagination, but it is improving,” he said.
The community has embraced Addison and the Blair family in a way none of the family members ever anticipated.
Addison’s parents didn’t even want to start listing individuals, schools and businesses that have organized countless fundraising activities, such as golf scrambles and fishing tournaments. There are too many to name, Wes said.
“It’s really indescribable to try to conceive and understand the amount of support,” he said. “All I can say is that God is working miracles. There are a lot of people who don’t know us who are sacrificing a lot, and the people who do know us are doing the same.”
They don’t know how word has gotten around in Hardin County and Meade County, where Kelly’s mother and brother live. They don’t know why people have taken the little girl into their hearts, viewing a CaringBridge website devoted to her more than 50,000 times.
They didn’t ask for the money, toys, gift cards, gift baskets and Wizard of Oz collectibles that Addison opened herself. They did not anticipate the boxes of cards that have been spread throughout hospital rooms and will no longer fit on a basement wall dedicated to their display.
But they are thankful.
Wes said the outpouring of support might be coming because no one wants to think of a child suffering like Addison has.
“I just think it’s one of God’s purposes,” he said. “I don’t know how it’s spreading around, but it is. I think it’s God. I think Addison has a special purpose.”
Addison’s great aunt, Bethany Brawner, said she and several others related to the girl are connected to the community, and they have spread the word about the Blair family in the hope of gaining community support.
“When I found out about Addison, I just sat and worried and stewed and thought about how on earth we could help,” she said. “It’s really been a collaborative effort.”
One such effort is a catered dinner and auction at Central Hardin this Saturday. The theme of the event is “The Wizard of Oz,” Addison’s favorite movie.
Monday is the last day tickets are available for purchase at First Federal Saving Bank at 325 W. Dixie Ave. in Elizabethtown and at 416 W. Broadway in Brandenburg.
Brawner, an arts and humanities teacher at Creekside Elementary School, said that even though she and others have reached out for support, she is surprised by how much the community has responded. People she doesn’t know often ask her how they can help.
The situation also helps area schools demonstrate to students what a big impact cancer can have on a family and how important it is for them to help, Brawner said.\She hopes community members learn from pitching in to help the Blair family that there is good in the world.
“I really hope that everyone can learn a lesson about how precious life is and how you need to live life to the fullest,” she said.
Most of all, Brawner hopes that the efforts help Addison.
“She is such a bubbly spirit,” she said. “She is one of the toughest, strongest 2-year-olds that I have ever known. Her smile is one that would absolutely melt you.”
Brawner said Addison has continued to smile throughout the whole ordeal.
Addison’s parents hope and pray their daughter will beat cancer and become a testimony. They also hope after their daughter is well to find some way to help fight childhood cancer and begin giving back to the community that has given them so much support.
Wes said his daughter’s purpose might be to impact the community because she clearly is doing so, even though she isn’t the only child fighting cancer.
He and his wife tell Addison on hard days and at times that she is about to go in for tests that there are a lot of people in her corner, and they read her cards from supporters.
“It’s a win for Addison,” he said. “We hate that Addison is going through this, but we know that people are rooting for her and praying for her. It helps on the days when the doctors don’t say what we want to hear.”
The prayers are the most important part of the community’s generosity right now, he said.
The little girl who used to wriggle away from booster shots now stays stoically still as she gets blood drawn sometimes and through a catheter in her chest gets shots that stimulate bone marrow cell production.
She cries after the shots because it feels like a bee sting under her skin.
The social butterfly also misses the kids at her daycare that she can’t visit because of her compromised immune system. She chats up doctors and nurses as she skips along the hospital halls holding her IV pole or stands on it to roll away with a push from her parents.
Addison has completed three rounds of chemotherapy and will start another Tuesday.
Then she’ll have another round, a surgery to remove as much of the tumor as possible, a final round of chemo and one or two stem cell transplants using good cells drawn from her already to replenish her bone marrow. After that, she’ll likely be in isolation for at least a month.
After all that, she’ll still be on cancer-fighting drugs and have to have scans every few months for the next three to five years to make sure the cancer hasn’t come back. There is a good chance that it could, Wes said.
“While she is improving, this is a tough opponent, but we believe in God and we believe in the power of prayer,” he said. “We’ve seen her improve, and we know that’s important, and she’s tougher than nails. She’s tougher than cancer, and she’s going to beat it. She’s got to beat it.”
Amber Coulter can be reached at (270) 505-1746.