MJ girl and family holding their breath on lung transplant
Cassie Thornton admits she sings a little off key, but her little girl thinks she has the voice of an angel.
Her daughter Karsyn's favorite song is "Twinkle Twinkle Little Star," and she likes her mommy to sing it softly, over and over, while she holds her hand. So Cassie does, night and day, as she gazes at her daughter who has good days, but more bad ones lately.
While small and delicate for her 6 years, with huge blue eyes and impossibly long eyelashes, Karsyn has the fight of an aged warrior. In a perfect world, today she should be in her kindergarten class at W.A. Wright Elementary. Instead, she's far away from all she knows, snuggled in a bed at a hospital in Cincinnati.
What she does know is her parents are by her side on what might be the most important day in their little girl's life. Today they learn if Karsyn will be approved or denied for a lung transplant.
The surrealness of it all has turned into a punch-in-the-heart daily reality for this young couple. The past three years have led up to this.
For half her short life, Karsyn has battled massive ailments most people never have to face.
As if a malignant brain tumor was not enough, now Karsyn's lungs are so weak and vulnerable they need to be replaced in order for her to live a full and long life. At one point on this frightening journey, Karsyn had to learn to walk again and relearn the basics.
Karsyn's parents never let her see them melt down, they save that for in the shower or behind closed doors. And while they are hopeful doctors today will green light their little girl's chance to at least be on the donor recipient list, they know she's had so many of those bad days lately.
She's in "a very weak state now," so much more so than in August when she had the stamina to start kindergarten, and even go to the county fair with her best friend Riley.
Things started out perfectly
Six years ago last November, Karsyn was born seemingly healthy to Cassie, a pharmacy school student, and James, a Metro Nashville cop. Things were just as they should be in a young family.
It all dramatically changed just one month shy of Karsyn's third birthday. What James and Cassie thought was a possible flu turned into a trip to the emergency room and what Cassie said was a rapid-fire diagnosis of a brain tumor.
"It was hard to believe," Cassie said. "You go in thinking it's something routine and wrong with her stomach and it didn't take long at all for them to diagnose her with a rare and aggressive brain cancer."
The devastating news had the shocked couple on their knees. The official name of the cancer is Atypical Teratoid Rhabdoid Tumor (ATRT) and it "had been growing in Karsyn's head," Cassie quietly explained.
"But, we knew she could get through it," she said.
Cassie juggled her classes to be by Karsyn's side, and James took a six-week leave of absence. While Cassie can name and quickly spell each of her daughter's treatments, she said in layman's terms the little girl received chemotherapy, stem cell transplants and full head and spine radiation. At one point there was a three-week stay at Vanderbilt Children's Hospital.
And while it's rare to use the word "trooper" for one so young, Cassie said Karsyn was strong and handled things the best she could. She completed treatments June 2012 and was declared cancer free.
"We played a lot," Cassie recalled. "Even during treatments. On good days she loved to play in the hospital's laundry basket and watch television and be read to."
The relief and hopefulness was short lived. One short month after treatments' end, Karsyn began to have complications. Her young brain began to swell from all the medicines and she experienced neurological changes, including the inability to walk. However, with lots of therapy and steroids she began to walk again.
In October 2012 more complications arose, and she became very ill related to her inability to swallow correctly. She survived this setback and "came out very strong." This, too, didn't last long, and a feeding tube was installed so she could receive nutrition. She ended up with toxic levels in her blood and was rushed to the trauma unit.
"She survived yet another setback in her pathway to healing from cancer," her mother said.
Short-lived good times
Finally, there were 18 good months when Karsyn started kindergarten and lived a fairly normal life, at least normal for a little girl who battled brain cancer and subsequent complications. She was able to play, laugh, sing and dance.
However, her little lungs took a big hit from the radiation, aspiration, pneumonia and more. The entire time she was still on steroids and oxygen. Instead of a backpack like most kindergartners, Karsyn had "Tankie," a tank full of oxygen she brought to school.
She and "Tankie" were very popular, and there were lots of friends. But, her parents knew her lungs were deteriorating and there were whispers about a lung transplant.
During this time Karsyn went to the hospital for pulse steroids three days every four to six weeks. Up until last Thanksgiving, Karsyn went to school every day and experienced only the usual minor illnesses like her friends.
The first day of December she got a high fever and was diagnosed with a severe virus. Within days she was moved to ICU, intubated and life-saving measures were taken.
"She's making slow and steady progress," said her mother.
During this process, the Team Karsyn Facebook page was made that chronicles her journey.
And as part of Cassie's way to ease stress, she makes inspirational cards, with prints from her daughter's feet, hand and fingerprints. They are small legacies of Karsyn. A popular one is "Wish Flowers," Karsyn's favorite "flower" and commonly known as dandelions.
"She loves to blow the seeds and make wishes," Cassie said.
The cards will be featured and sold at the upcoming Farmazan's Market at Charlie Daniels Park April 18, with the proceeds going toward medical and travel expenses.
Today's the day
But, now they are at this point. A lung transplant is the only permanent fix to her lung condition. Karsyn's lung doctors contacted Cincinnati Children's Lung Transplant Center, and on March 3 she was LifeFlighted there and was evaluated for a lung transplant.
Today's the day the medical review board will give Cassie and James the news. This past weekend were really bad days for Karsyn, and her parents do what seems to comfort her the most.
"We crawl in bed with her and rub her head and belly," Cassie said. "She loves physical touch."
Her dad said he tries very hard to "be strong for her."
"If we break down and start crying in front of her she wonders and gets scared," he said in a low voice. "We want to have strong vibes for her."
His dream for her is like any other parent for their little girl, but more poignant because of the circumstances.
"I want her to get on the list today," he said. "To be able to get a new set of lungs and live a healthy, happy long life. That's all I want."
Cassie silently wishes the same as she softly sings the Twinkle song, holds a little hand and waits.
To send cards and letters, address them to Team Karsyn, P.O. Box 120404, Nashville, Tenn. 37212.
Laurie Everett can be reached at firstname.lastname@example.org