5-year-old has acute lymphoblastic leukemia

 Charlee Sue Everett is mild and calm and known for her tender personality. Charlee Sue Everett loves music and riding horses. Charlee Sue Everett is loved by her kindergarten teacher and all of her classmates. Charlee Sue Everett loves Jesus and her four big brothers. Charlee Sue Everett has a best friend who is also her cousin. Charlee Sue Everett has acute lymphoblastic leukemia.

For 5-year-old, Charlee Sue Everett and her parents, Jeremiah and Autumn Everett, the words that changed their lives came on Oct. 20 and sent the family of seven into a whirlwind of diagnoses and emotions, of procedures and medications, of smiles and tears, of hopes and fears and more hopes.

The little blonde girl with a great big smile hadn’t been feeling well for a few months, but the opinion of her pediatrician was that she was fighting an allergy infection. However, those thoughts began to become doubts after her mother noticed lumps near the base of Charlee’s head on Oct. 14, and she made another appointment with the pediatrician for the following week.

“Charlee went on a planned vacation that weekend, and, while at the beach, her mom remembers thinking that Charlee was more than just her normal calm self,” Heather Scott, Charlee Sue’s aunt, said.

Scott said that while Charlee’s cousin would keep playing, Charlee Sue would take frequent breaks and sit down to rest.

“She seemed easily tired from playing on the beach, which wasn’t completely abnormal since she had been fighting this ‘allergy infection’ for a couple of months,” Scott said.

A trip to the pediatrician the Monday they returned from the beach resulted in blood work being sent to an off-site laboratory with Charlee Sue and her parents being sent home to wait for the results, but those results wouldn’t come soon enough.

While at school the next day, Charlee’s teacher noticed that she wasn’t feeling well. With her mother being a teacher at the same school, Spencer Elementary, Charlee was sent to her mother’s classroom to get some rest.

“Autumn noticed Charlee beginning to have knots appearing around the anterior part of her neck. They were literally appearing before her eyes. Speckled bruising also appeared,” Scott said.

Scott said the Charlee was immediately rushed to the emergency room where another series of tests were conducted.

“The results came back that Charlee’s platelets were severely low,” Scott said. “Really, all of her lab work was off.”

Vanderbilt Children’s Hospital was notified, and the decision was made to transport Charlee Sue to the Nashville hospital to take advantage of the pediatric specialty units they house.

“On the morning of Oct. 20, 2021, the doctor confirmed our biggest fears. Charlee was diagnosed with acute lymphoblastic leukemia,” Scott said, explaining that childhood acute lymphoblastic leukemia (also called ALL) is a cancer of the blood and bone marrow in which the bone marrow makes too many immature lymphocytes, a type of white blood cells. “The entire process went pretty quickly. She was immediately started on an array of medications and had her first platelet transfusion. Surgical procedures were scheduled for the next day.”

The next nine days were full of procedures to treat Charlee Sue. Doctors wanted to keep her fever under control, allow her to get her some rest, and be sure she had the right combination of medications to both help her fight the disease that was trying to steal her smile, and keep her comfortable enough to want to smile.

“Despite all she had been through, she tried to keep her smile intact,” Charlee’s aunt reported, saying that some days were hard, and others were filled with rest.

A day of great relief came for Charlee Sue’s parents and extended family when, on Oct. 23, the results of a spinal tap came back, and it was determined that no leukemia was found in her spinal fluid.

The good news was quickly subdued as two more rounds of chemotherapy the next day caused the discomfort level to increase for the little 5-year-old who was supposed to be at school learning to read and getting excited about Halloween parties.

“We still have had some smiles and laughs. She is fighting hard,” Scott said. “The doctors say she is still doing better than expected, and the side effects she is experiencing are to be expected.”

But the side effects were causing Charlee Sue to throw up not just any food she tried to eat but also the medications that she needed to help treat her symptoms as well as some of the chemotherapy and steroid medications. The difficult decision was made to have a feeding tube put in place so that Charlee would get all of the medications she needed.

“She handled the procedure better than we anticipated as she had to be awake for it,” Scott said. “She is still trying to adjust to it but is happy she doesn’t have to take all these meds by mouth. She has finally eaten and drank a little today and was able to keep it down.”

A couple of fever-free days and another round of chemotherapy later, and Charlee Sue was able to go home to sleep in her own bed and be loved on by her big brothers, Nikolas, Levi, Dallas, and Jackson, who were all missing her. While coming home was what everyone was working so hard for, it hasn’t been all happy smiles, big laughs, and silly games.

“Her side effects are more apparent, and it’s hard to get many smiles. She is so tired. She has kept a good appetite and craves spaghetti constantly,” her aunt said several days after she had arrived home.

Charlee’s brothers are trying to adjust to this version of Charlee.

“She is physically exhausted,” Scott said.

A trip back to Vanderbilt for another round of chemo and lab work showed that Charlee’s platelet levels were low, but it was determined she doesn’t require another transfusion yet.

“Charlee’s fight is far from over,” Scott said.

She also said the little girl’s parents have taken time off work to stay by her side as well as making sure that her four older brothers are able to feel their support and not be left without a parent’s attention despite the needs that Charlee will have. 

“With two and a half years of anticipated chemotherapy treatment, Charlee will have to go to Vanderbilt weekly – sometimes biweekly,” Scott said.

According to Charlee’s aunt, the community has stepped up to support the Everett family and has set up several ways for people to donate to the expenses that the Everett’s are quickly amassing.

“The community has pulled together and have a benefit dinner and auction scheduled for them on Nov. 20th, at 3 p.m.., at the Spencer Elementary School,” Scott said “A Venmo and a GoFundMe have also been created for her, and there is a Facebook page called Team Charlee Sue, which has updates posted as well as photos.”

Anyone who would like to donate to the Everetts can do so by making a deposit at the Citizens Tri-County Bank, in Spencer, Tennessee or by sending donations through Venmo to @jeverett43