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Mother’s Day is a day to celebrate being a mom. But, for Lesley Abell Leachman, Mother’s Day 2012 was the start of a her worst nightmare.
During a routine trip to Target, her 8-year-old daughter, Avery, threw a typical tantrum when she didn’t get a toy she wanted. That’s when Lesley noticed a large lump on her daughter’s throat.
Lesley asked Avery, “Does your throat hurt?” “Did you get hit in your neck playing soccer?” When Avery said no, Lesley pulled out her phone and searched the Internet for what the lump might be. She had a gut feeling something wasn’t right.
Lesley and her husband, Del, immediately took Avery to a clinic inside the Kroger by their house. The nurse said it could be an infection, and they should call Avery’s pediatrician first thing on Monday.
“We wanted more answers,” Lesley said. “Actually, I wanted someone to tell me it was nothing.”
Later that night, Lesley took Avery to an Urgent Care center. That doctor suggested the lump was likely caused by a thyroid issue or it was a nodule that could be treated with medicine.
“I had a feeling it was more than just an infection or strep throat,” Lesley said, “but I tried to stay calm and stay positive … and to stay off of the Internet.”
Monday, Lesley took Avery to her pediatrician and an ultrasound tech. They met with an endocrinologist on Wednesday, and Avery’s blood was drawn three times in between. On Thursday, Lesley and Del met the surgical oncologist, Dr. Glenda Callender. She explained that after the tests, exams and results she believed there was a reasonable chance the lump was cancer.
“We were scared out of our minds,” Lesley said. “Just four days earlier Avery was a seemingly healthy, athletic, energetic 8-year-old. She was a normal kid, doing normal things. Even on that day she was at school with her friends enjoying field day on the last day of her third grade year. But we'd just heard the word that no family member, much less parent, wants to hear: ‘Cancer.’”
The plan was to remove Avery’s thyroid, and biopsy the swollen lymph nodes on the left side of her neck. If it was cancer, the surgeon would remove any infected lymph nodes.
The week leading up to surgery was extremely fast but excruciatingly slow all at the same time, Lesley said, which was a blessing and a curse.
“We didn't have time to stop and think or dwell on things in each stage,” she said. “We were able to avoid that awful waiting game, but we also had to take a lot in and learn a lot in a very short time.”
That week, Lesley couldn’t say “cancer” out loud.
“I had to whisper it,” she said. “Saying it out loud made it too real.”
Although Avery’s surgeon, Dr. Callender, wasn’t a pediatric surgeon, she agreed to take Avery’s case, and she went above and beyond to make sure Lesley and Del understood everything, Lesley said. She explained things in terms they could understand and spent an hour with them going through the details. She said if you had to pick a type of cancer, thyroid cancer would be the one you'd pick because it grows slowly, doesn't metastasize quickly and is treatable without chemotherapy.
“We walked out of her office stunned and horrified, but educated and armed with a plan and someone we trusted on our side,” Lesley said.
Dr. Callender even gave them her cell phone number in case they had more questions.
“She was perfect for us. A Godsend,” Lesley said. “I honestly felt like we were her only patient. I can't say enough about what she did to help make the whole experience manageable.”
To keep things as “normal” as possible for Avery, Lesley and Del waited to tell her about her scheduled surgery until the night before. It was the last week of school, and they wanted her to enjoy it, plus they were celebrating her brother’s 6th birthday the day before her surgery.
“She knew something was up but she was really brave,” Lesley said.
When they got to Kosair Children’s Hospital the morning of her surgery, Avery was as close to normal as any kid could be under those circumstances.
“I couldn't believe she got out of the car that morning,” Lesley said.
Avery brought her favorite stuffed animal (her horse Midnight), and the nurses gave Midnight a matching armband. While nurses prepped Avery for surgery, they gave her two “ridiculously strong” doses of sedatives to help her relax and be a little sleepy when she was taken to the operating room, Lesley said. But the sedatives didn’t take effect, and when Avery realized it was time to leave her parents to go to the operating room, she started to fight.
The nurses let Avery’s parents choose between giving her another shot or doing a “pry and run,” in which they would run with her kicking and screaming to the OR.
“We didn't want to have her poked any more than necessary, so we opted for the ‘pry and run,’” Lesley said. “It was miserable. She was crying for us to not let them take her. It was really a scene. She says to this day she remembers everything, including what it looked like inside the operating room, which is really amazing considering the medicine she'd been given. It was proof that the girl was a fighter.”
Avery’s surgery lasted six long hours. During that time, Lesley, her husband and their families prayed the Rosary.
“When the doctor called and confirmed that the biopsy showed the nodule on her neck was malignant, we were in the middle of the Rosary,” Lesley said. “I've never prayed so hard in my life.”
Lesley and Del were terrified after receiving the cancer diagnosis, and they worried about the risks of her surgery. The nerves around the lymph nodes that were removed could be damaged and cause Avery to have problems raising her left shoulder or to have chronic issues with her diaphragm and breathing. And her voice might change forever.
“Honestly, those risks seemed minor at the time,” Lesley said. “We just wanted the next few hours to be over.”
If things weren’t scary enough, approximately four hours into the surgery, the hospital’s fire alarm went off.
“I don't think I've ever come so close to fainting,” Lesley said.
Fortunately, the fire alarm was triggered by something minor, and there was never any real danger. It was just another scary moment of an exhausting day, Lesley said.
Surgery is complete, treatment begins…
During Avery’s surgery, Dr. Callender removed her thyroid and 32 lymph nodes up the side of her neck (16 were cancerous). Her official diagnosis was Papillary Thyroid Cancer, which makes up about 80 percent of all thyroid cancer diagnoses, according to the U.S. National Library of Medicine. It's not clear what causes thyroid cancer, but it occurs when cells in the thyroid undergo genetic changes (mutations). The mutations allow the cells to grow and multiply rapidly. The cells also lose the ability to die, as normal cells would. The accumulating abnormal thyroid cells form a tumor. The abnormal cells can invade nearby tissue and can spread throughout the body.
When the surgery was complete, Lesley and Del were anxious to see Avery. They weren’t sure if she would be covered in tubes and bandages, if she would look the same, or how long she would be asleep. They also worried about how much pain she might be in.
When they wheeled her into the room, which was dark except for one overhead light, Lesley and Del were relieved to see their daughter, asleep and very peaceful.
“They put her right under the light and at that moment I remember thinking she was the most gorgeous angel I'd ever seen,” Lesley said.
While she slept, their parish priest came to visit and they all joined hands, including the night nurse, and prayed over her.
“It was so special,” Lesley said. “I don't think we've ever truly loved her more than we did right then.”
When Avery finally woke up the first thing she said was, “I want to go home.”
After three nights of recuperating in the hospital, they did.
Before going home, they broke the news to Avery that she had cancer.
“We were terrified and had no idea how she would react,” Lesley said. “She knew that she had something growing inside of her that wasn't supposed to be there and the surgery was going to remove it but as far as we knew she didn't know what it was. We were just honest with her, but we didn't want to overcomplicate things.”
Lesley and Del explained that the doctors found out that she had cancer but it was the "easy" kind of cancer. They helped her understand that she wasn't going to die, and she wasn't going to lose her hair because she wasn’t going to have to undergo chemotherapy. They explained that she was “special and very lucky,” Lesley said.
When they left the hospital, they threw a party in the car on the ride home.
“We turned up the radio on the way home and really made a big deal out of it,” Lesley said.
Some of their best friends decorated their yard with a big sign that said "Welcome Home Avery. We love you!" And there were bright flower decorations scattered all over their front yard. Avery also had lots of cards and balloons awaiting her.
“She was so glad to be home,” Lesley said.
While the surgery behind them, Avery’s doctor visits and treatments weren’t over. In June, Avery had radioactive iodine therapy. This treatment is used to destroy any thyroid tissue not removed by surgery or to treat some types of thyroid cancer that have spread to lymph nodes and other parts of the body.
Ten days prior to her treatment, Avery had to go on an iodine-free diet. She couldn’t eat anything from a box or a bag. No dairy, no bread and nothing processed. She ate a lot of grilled chicken, fruits and vegetables. And, one of Lesley’s friends made her two loaves of iodine-free bread from scratch, which she loved. While Avery wasn’t a fan of the iodine-free diet, the purpose of it was to starve the body of iodine so that any thyroid cells left after surgery or any residual cells that may be traveling around in her body would come out of hiding and look for sources of iodine, Lesley said.
Avery also had to be confined to her room for three days after taking the radioactive iodine pill because her body would give off radiation. Her parents had to stay at least six feet away to avoid radiation exposure. Her brother, Max, went to stay with his grandparents, Bob and Kathy Abell, in Lebanon to avoid exposure.
A few hours after Avery and her parents got home from the hospital after she'd taken the pill, she vomited twice, and her parents weren’t able to help her.
“The worst part was not being able to help her clean up or hold her and make her feel better,” Lesley said. “She had to do it on her own. It was pretty tough on us … being so helpless, and knowing that she was scared. But she did it.”
Lesley and Del got Avery some medicine for the nausea, and she slept for several hours. Once she woke up, she watched movies in her room. Lots and lots of movies, 30 to be exact. And, 24 hours after her treatment, she was able to go off the iodine-free diet.
“We had a ‘countdown to bacon’, her favorite food,” Lesley said. “And we made three trips to Subway that weekend for three foot-long subs. Getting to eat what she wanted kind of kept her spirits up.”
During those three days, Avery’s parents could go to her door and check on her but they couldn't touch her or help her do anything. Her grandparents, Del's mom and dad, came over, sat at her door and watched a movie with her.
“I remember Del's dad kissed her on the top of her head and she was so worried that she would get him sick,” Lesley said. “She really surprised us at how well she handled it all.”
In fact, Avery showed a sense of bravery that isn’t normally associated with an 8-year-old little girl.
“She'd never had a reason to be truly brave before. This kind of brave anyway,” Lesley said. “But she proved that she had it in her.”
A week after her iodine therapy, Avery went back to the hospital for a full body scan, which would show if the cancer had advanced into other parts of her body. Within hours, Dr. Aaron Spalding at Norton Cancer Center called. He said the cancer hadn't metastasized anywhere else. Basically, the cancer was gone, and no additional therapy or surgery was necessary.
“We were beyond relieved,” Lesley said. “We called our parents, who'd been on this rollercoaster with us, and we all praised God. That was the first reaction I had. It was the first glimpse of an end.”
For the first time in weeks, Lesley and Del were able to breathe.
“I don't think we'd ever hugged each other - all four of us - so tightly,” Lesley said.
St. Baldrick’s Ambassador…
Avery is cancer free, but she must take medicine daily to replace hormones and keep them balanced because she doesn't have a thyroid now. She must have regular ultrasounds and blood work. Doctors are monitoring a lymph node in her neck, Lesley said, but things are looking good. As long as they continue to follow up regularly with ultrasounds (every three months for the next two years) Avery has an excellent prognosis and the chances of reoccurrence are low, Lesley said.
“We choose to have faith in God and believe that she will live on to do great things, and this is just part of her life's story,” she said.
Because of her bravery and courage, Avery was asked to be this year’s St. Baldrick’s Day ambassador, which she’s very excited about. She hopes to bring some of her friends with her from Louisville to the event on Saturday at St. Augustine Grade School.
Lesley said their experience has made them want to help other families touched by cancer. Last year, shortly after her diagnosis and surgery, Avery celebrated her 9th birthday. Instead of gifts, she wanted to raise money for Jarrett’s Joy Cart, which serves children from across the state and provides new toys and other gifts for children being treated for cancer. Avery raised $6,000, and so far, she’s raised $1,500 for “Team Bobarazzi.” Her grandfather, Bob Abell, is shaving his head at Saturday’s St. Baldrick’s event.
Lesley said their experience has opened their eyes to the suffering and sheer terror that families go through during a diagnosis of cancer.
“We got minutes of that feeling … just a glimpse really,” she said. “And it was almost unbearable. Avery's story didn't compare to some of the others I read about or saw on the oncology floor at Kosair for just one night. We constantly remind ourselves how truly blessed we are.”
As they approach the year anniversary of Avery’s cancer diagnosis, Lesley describers their experience as very humbling.
“We went about daily life like most busy parents do … work, school, sports, homework … But we were stopped in our tracks and forced to face the fact that life is out of our control,” she said. “One day you can have it all and in a matter of hours you can be brought to your knees. I remember both of us looking at Avery in the hospital and saying to each other, ‘I can't believe she has cancer.’ To this day, it stops my heart.”
Nevertheless, the family a renewed purpose to join the fight against cancer. It’s also strengthened their faith and brought them closer together as a family.
“The four of us make a real effort to stop and spend more quality time together, just the four of us,” Lesley said.
Advice for parents…
Finding out your child has cancer is truly a parent’s worst nightmare, and Lesley has some advice.
“I hate it and I'm almost embarrassed to admit it, but I skipped Avery's last two ‘well’ checkups at her pediatrician's office.”
They took Avery for her annual sports physicals and she hadn't been sick in nearly two years. She was current on her immunizations, and she looked healthy and was very active, Lesley said.
“Looking back, I can't help but think that had her pediatrician examined her sooner, maybe we could have caught it earlier and the cancer wouldn't have spread so far or been so advanced,” she said. “I would definitely not treat that so lightly if I had it to do over again.”
For parents who might face the nightmare of their child being diagnosed with cancer in the future, Lesley has some helpful advice.
“Ask questions, get as much information as you can,” she said. “Educate yourself so you can feel confident that your child is getting the best care possible. But don't spend too much time on the Internet trying to self-diagnose. It's a scary, scary place for unsuspecting new patients or parents who just want answers. Pick up the phone and find a doctor you trust.”
In all honesty, nothing that can prepare you for something like this, Lesley said.
“Lean on your family, friends and faith and trust God will get you through it,” she said. “One day at a time.”
One thing is for certain, however. Mother’s Day will never be quite the same for Lesley and her family.
“It's a day we'll celebrate for different reasons every year from now on,” Lesley said. “The day a fit at Target maybe saved Avery’s life.”