Ally Smith was just 10 years old when she stood at the altar of the First Baptist Church of Tallapoosa, her high-pitched voice crumbling into soft momentary cries, as she bravely shared her cancer journey with nearly 500 people. The video of her testimony has been viewed more than 3,000 times.
It was a memorable way to mark Aug. 20, 2023, the five-year anniversary of the day she completed treatment. Ally has continued to speak publicly about her cancer experience, hoping to spread awareness about childhood cancer and explaining the paramount role research has had in her family’s life.
Justin and Amber Smith made big plans for their life before they got married 16 years ago, a year after they started dating. Their greatest dream was to raise a family in the west Georgia town of Tallapoosa, where Justin had lived since birth. They wanted to start a family and hoped they’d have a son, then a daughter.
Though it took longer than they expected, they welcomed a baby boy, Jay, 4 1/2 years after they got married, and another baby followed just 19 months later. Allison Leah Smith, the daughter Justin and Amber dreamed of, was born on May 20, 2013.
When Ally was 2, her parents noticed she had bruises popping up frequently. They assumed it was from roughhousing with her big brother, but that changed on May 18, 2016.
“Ally fell off a stool in the playroom and developed a bruise on her abdomen, the worst bruise ever,” said Amber.
The following day, Amber took her bruised but happy little girl to the pediatrician who, concerned by Ally’s elevated hemoglobin levels, sent them to their local hospital. Their arrival at the emergency room was met with an unexpected reaction.
“They accused me of child abuse,” said Amber. “There were bruises all over her and that was their first assumption. My mother-in-law was with me, and they asked her if Ally was abused. My mother-in-law went on and on about how well our children are loved and cared for, never even spanked. I called Justin, so shocked and terrified, I couldn’t believe it.”
When the hospital’s suspicions were extinguished, they ran blood work and Amber was met with another shock.
“All signs point to leukemia, that’s what the doctor said,” said Amber. “Her white blood cell count was 147,000 and should have been between 5,000 and 10,000. Her platelets were so low. They told us we needed to get to Children’s Healthcare of Atlanta immediately.”
At 6:17 that evening, which was also Amber and Justin’s eighth wedding anniversary, a pathologist confirmed that Ally had B-cell acute lymphoblastic leukemia, a blood and bone marrow cancer.
“‘Dear Lord, save my baby’ was all I remember saying,” said Amber.
Within 16 hours of her diagnosis, Ally had a port surgically placed and received her first chemotherapy treatment. She also received a surprise cake from the hospital, because it was May 20, her third birthday.
Two years of treatment followed, and Ally struggled with an array of side effects — some the doctors couldn’t have prepared the family for, because Ally’s situation was so unique.
“She was allergic to so many medications and even allergic to platelets, so she required Benadryl before transfusions,” said Amber.
Ally had life-threatening infections three times, lost the ability to walk for 47 days, and struggled to rebuild her immune system after every round of chemo. When her treatment ended in August 2018, she still had an uphill battle with her immune system.
“We went for follow-ups every six months and the doctors said her immune system was not working,” said Amber. “After hearing that for years, the immunologist suggested precision medicine sequencing on Ally, as well as Justin and me, to see if a disorder was causing her immune system deficiency.”
CURE Childhood Cancer, a nonprofit dedicated to conquering childhood cancer through funding targeted research while supporting patients and their families, partnered with the Aflac Cancer Center of Children’s Healthcare of Atlanta in 2017 to create the precision medicine program. CURE provided the initial funding, $4.5 million, to build the infrastructure and launch the program. Since then, CURE has invested $14 million in precision medicine. Eighty-five percent of children who have access to genetic sequencing receive information that affects their treatment, from confirming or changing the diagnosis, changing the therapy, and even leading to treatment. This was the hope for Ally.
“The doctor said the results showed Ally doesn’t have an immune disorder, so that means her immune system is what it is, and she’ll always be immunocompromised,” said Amber. “Then he said they found that Justin and Ally share a genetic condition called Lynch syndrome.”
The condition increases the risk of many kinds of cancer, from what Ally had, to colon cancer, endometrial cancer and more. Knowing this information will allow Justin and Ally to be monitored annually for early signs of cancer, giving treatment a greater chance of success.
Ally, 11, and now six years cancer free, just started sixth grade at Harrelson County Middle School. After breaking six bones in four years (brittle bones are a side effect from chemo), she traded softball for pageants and recently made the school cheerleading squad.
“We didn’t want her to do any sports, but she’s headstrong and would come all to pieces if we told her she couldn’t do anything,” said Amber.
During the speech she gave last year at her church, Ally shared that she strung a bead onto a string to mark every step of her treatment: 23 blood transfusions, 36 bags of platelets, two bone marrow aspirations, 28 lumbar punctures, and more. She calls them her beads of courage, and they now stretch more than 53 feet long. She continues to add beads to mark each milestone.
“My beads will always remind me that God knew it wasn’t my time to go,” said Ally. “My cancer is my testimony, and I want to raise money and awareness for other kids with cancer.”
September is Childhood Cancer Awareness Month. If you would like to learn more about CURE Childhood Cancer or the precision medicine program, visit curechildhoodcancer.org
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