Upon meeting Elliana Kirby, it would be hard to comprehend that this fashion-forward little ball of energy ever had to endure the battle she faced as a toddler.
Elliana, who goes by “Ellie”, is very girly; she loves her baby dolls, Barbies and is an avid fan of Disney princesses. She swirls and twirls in floral dresses, beaded jewelry and classy headbands, and loves running around with her four older siblings.
Underneath all that cuteness is a fighter that has faced more in her five years of life than most can say about themselves, all starting with a devastating cancer diagnosis she received in early 2022.
Fortunately for Ellie, she comes from a big family, all equipped with big hearts. They may have not asked for this nightmare, but Ellie had every ounce of love and support on her side as she battled a rarer form of leukemia.
September is Childhood Cancer Awareness Month. It also happens to be Blood Cancer Awareness Month. By sharing Ellie’s story, the Kirbys aim to promote the need for more pediatric cancer research.
More importantly, they want to emphasize a concept that can be hard to think about in dark times…hope.
If it’s not COVID…?
The Kirby family consists of Sarah, a part-time speech therapist at Vantage Speech & Language, and Richard, who works for Santee Cooper, and their five children: sixth-grader Harper, fifth-grader Olivia, third-grader Benjamin, second-grader Jace and kindergartner Ellie. Harper just started her first year at Berkeley Middle and everybody else is at Berkeley Elementary.
The family had a pretty rough start to the year 2022: the family woke up sick on New Year’s Day and learned they all had COVID. Everybody gradually recovered – except Ellie, then 19 months old, whose symptoms persisted.
Sarah said they were in and out of the doctor’s office for two weeks because Ellie was not getting any better. During that time, Sarah and Richard also noticed she was starting to sleep for longer periods of time, and she developed a rash, fevers and unexplained bruising. Her hands and feet eventually started swelling as well.
After a week or so of the peculiar symptoms, her doctor ordered some blood work and they learned her red blood cell counts were a little low, but the concerns were still being chalked up to the idea of it being COVID. The family was asked to report back to the doctor in another week or so assuming she would be feeling much better, but the sickness continued.
Ellie eventually underwent a CT scan followed by a different test, and on January 17 the family learned she had Acute Myeloid Leukemia – also called AML for short.
Needless to say, the family was floored. Sarah had thought her daughter was having a severe case of COVID – which would have been concerning enough as it was for a 19-month-old, but not this.
“Cancer was never even on my radar,” Sarah said.
AML is a cancer of the myeloid line of blood cells, characterized by the rapid growth of abnormal cells that build up in the bone marrow and blood and interfere with normal blood cell production.
Leukemia is the most common cancer found in children, but AML is a very serious form of it. The prognosis is more favorable in children than adults, but it does put them at a higher risk of needing a bone marrow transplant.
The form of AML Ellie was diagnosed was known as “low risk 2.” One’s risk category determines how many cycles of chemotherapy are needed – in Ellie’s case, she would end up needing five cycles of anti-cancer medication.
Ellie started chemotherapy immediately following her diagnosis at MUSC at the Shawn Jenkins Children’s Hospital in downtown Charleston. All of her treatment was inpatient, and would take anywhere between three to 10 days for it to be administered. Ellie received her chemotherapy through a Broviac, a surgically implanted central venous catheter, typically installed in the chest, that provides a way to administer medications and fluids, and to draw blood as well without frequent needle sticks.
Ellie experienced common but tough side effects from the chemo, particularly in the beginning: she got very sick, and her mom said she lost her hair probably within the first two weeks. She had food aversions and struggled to take oral medication.
On good days she was a totally different baby – videos of her in the hospital show a cute toddler, with the most adorable little bald noggin, stomping through the hallways at the hospital, tethered to an IV pole being pushed by one of her parents hustling to keep up with her.
The chemo would cause her blood cell counts to drop, making her super susceptible to infections her body could not fight off at home, which is why she (as well as other AML children) had to stay inpatient until her counts rose to an acceptable amount again.
Sarah said the longest she probably spent in the hospital was about 40 nights straight.
“We would get maybe two days at home and then have to go back to the hospital,” Sarah said.
Life at home
Any family who has ever endured cancer – especially pediatric cancer – knows it takes an emotional and mental toll on everybody involved.
Sarah was not working at the time when her daughter got sick, allowing her to be front and center in the hospital as Ellie completed her treatments. Richard was able to take off work every Wednesday to be at the hospital with them as well.
However, they still had four young children back at home, and the struggle was felt by the whole household. As Sarah mentioned, she and Ellie only got to be home for a couple of days at a time between treatments – the longest stretch was about five days.
“Since I was a stay-at-home mom with all of them, I was so used to being in every aspect of each child’s life,” Sarah said. “It was really, really hard because it was like we would get a taste of what it’s like to be home, and then dread going back.”
The hospital had ongoing COVID restrictions in place at the time, so Ellie’s siblings could not immediately see her when she started her treatment. Her two older sisters Harper and Olivia remember a good bit of what it was like when they had their first hospital visit with her on Valentine’s Day – roughly a month into chemo.
“It was sad to see her there,” Harper said. “She didn’t have a lot of energy and she was just kind of laying around.”
The two older sisters also remember how abnormal everything felt at home.
“When a family member has cancer, it affects the whole family,” Harper said.
Olivia added she would get sad sometimes because she would miss Ellie.
“The first time she came home I was so excited…I just loved it whenever she was able to come home,” she said.
Sarah’s mom lives nearby and was able to help with the children. The Kirbys also had a lot of support from their church, Santee Circle Community Church.
Family members also spoke volumes of the support they received from Berkeley Elementary.
“I can’t say enough how supportive they were of her,” Sarah said, adding the school provided a safe space for all of her children. “I knew my kids were being well taken care of – I knew they were being looked after.”
A little bit of hope
After going through the experience, Sarah said she was shocked to learn how grossly underfunded childhood cancer is, and that most advocacy and research tends to relate more to adults affected by cancer.
The family’s story not only taught them the importance for advocating for pediatric cancer research, but reinforced their belief in treating everyone with kindness.
“Wherever you are, just remember that you don’t know what someone else is going through,” Sarah said. “Remember to be kind to whoever you encounter. That was a big life lesson for me, too.”
Ellie was considered done with treatment around August of 2022, when one final biopsy revealed the good news the family had all been waiting for: no more cancer.
Every four months Ellie goes back to the hospital for lab work, and gets an echocardiogram as well as an electrocardiogram test. She has otherwise been off treatment for three years and is totally thriving.
“She’s doing really, really well,” she said. “Aside from scars from all of that, you would never know that she had cancer.”
Ellie is very much enjoying kindergarten at Berkeley Elementary. Her teachers are Kaley Vinson and her assistant Debra Blackmon.
“I like when they let me use their toys and play with playdough,” Ellie said. “I like dramatic play – there’s three baby (dolls) and a (toy) kitchen.”
Ellie is also very ambitious. She's considering several career aspirations including, but not limited to: a teacher, a doctor and a mom.
As a family, the Kirbys enjoy going out on Lake Moultrie. They all have their various activities – karate, soccer, guitar lessons, etc. Harper and Olivia are both pretty artsy; last year, Harper was among a batch of BCSD students whose artwork was featured in the annual Clerk Art Show. Olivia scored the regional title in the 2025 Governor’s Art Contest on Litter Prevention and was recognized at the South Carolina State House.
While childhood cancer is an experience she would ever wish on anybody, Sarah knows her family came out stronger because of it.
“It was an opportunity for us to see how loved we are as a family, and also grew our faith in God and each other,” she said.
Her message to anyone still facing childhood cancer: do not lose hope.
“Ellie’s doing incredibly, and there were times that we couldn’t see that – we couldn’t see past the next hour sometimes,” she said. “It’s a blessing, and there really is hope because of how well she is doing now.”
