Leukemia Doesn't Stop Áine Randle from Rocking Out
Sep 13, 2017 Cedars-Sinai Staff
Music is one of Áine Randle's most powerful tools in coping with a childhood cancer diagnosis.
She might be strumming an old Irish song on a ukulele, slapping her tiny palm on her dad's guitar to the Ramones, dancing around in circles, or banging out a solo on her drum kit—she's going to totally rock out.
Watching Áine rock out, you might forget that she has leukemia, that she's halfway through her chemotherapy treatments, that she endures a lumbar puncture every 12 weeks, and that she is facing it all at only 3 years of age.
Áine lost her hair by the time she was 21 months old. It has since grown back and for the first time, a couple weeks ago, she got her bangs cut. That was awesome.
"She loves music," says Áine's mother, Alexandria. "When she was in the hospital, we would sing to her every night. Music has always been a great way for her to express herself and to calm down."
"We come from a musically inclined family, so for us turning to music comes naturally," Alexandria adds.
Over the course of a few months, Áine lost her appetite. She wasn't sleeping well. She was pale and having fevers as high as 103. Her parents and doctor were able to control the discomfort, but the symptoms persisted.
One day, Áine's pediatrician noticed her hemoglobin count was abnormally low and recommended she go to Cedars-Sinai immediately for a blood transfusion. Hemoglobin delivers oxygen to the blood, and in Áine's case, she was losing red blood cells.
Watching Áine rock out, you might forget that she has leukemia.
Áine could've had a virus, but her pediatrician wasn't sure. This much was clear: Something was very wrong.
On March 8, 2016, Áine was admitted to Cedars-Sinai under the care of the pediatric hematology oncology team for the transfusion. Two days later, she had a bone marrow biopsy taken from her hip. After the biopsy, Alexandria and Will, Áine's dad, were told their 1-year-old daughter had leukemia.
"For so long, Áine had been agitated and wanted to be held all the time," says Alexandria. "She wanted to be comforted. I kept thinking, 'She's not right, she's not right,' but I certainly didn't think it could be cancer."'
Home away from home
For the next 35 days, Cedars-Sinai became the Randles' home while Áine began chemotherapy. Áine also has Down syndrome, which makes her much more sensitive to the treatment drugs, says Dr. Shivani Upadhyay, one of Áine's pediatric hematology oncologists. Children with Down syndrome are up to 20 times more likely to develop leukemia than the general population, according to the Children's Cancer Research Fund.
"Chemotherapy has awful side effects, and while it is making her better, it is a rough road, and it is putting her body through the wringer," says Alexandria. "It's sometimes hard to believe that a neon red liquid going into your infant's body is going to make her feel better. It's scary."
Áine was discharged in April 2016 but returned in July for another round of treatment that lasted until the end of September.
"It's sometimes hard to believe that a neon red liquid going into your infant's body is going to make her feel better. It's scary."
During this time, Áine's dad made sure his daughter never forgot she was still a little girl. His little girl. He made certain to create daily rituals and turn Cedars-Sinai into their neighborhood.
"I know how easy it is to lose life's magic in situations like this," says Will, who is a trauma therapist. "It can easily grind away at you, and I didn't want that for Áine."
He would take Áine down to the Plaza Level of the North Tower and give her an empty Starbucks cup to hold while they read magazines with visitors, or pull her in a red wagon down the halls while she waved to the artwork on the wall. They would stop and chat with friendly strangers. They even filled the wagon with socks to hand out to patients in the Geriatrics Unit.
And, of course, the two could be found singing and playing the guitar or drums in Áine's room in the evenings.
"Áine never felt scared, lonely, or abandoned," says Will. "Feeling helpless and alone is what's traumatic, and we really tried to make sure she didn't experience those things."
Knowing Áine had to be in the hospital during her second birthday, night shift nurses decorated her door with handmade decorations and the pediatric hematology oncology team threw her a surprise party with an Elmo theme—her favorite.
Alexandria remembers opening the door that day and being so moved that she started crying.
Hug and love your children because cancer is a beast.
The Randles say that everyone provided support, comfort, and understanding—from the pediatric oncologists and social workers to the child life specialists and pediatric oncology nurses.
"We were really spoiled at Cedars-Sinai," says Will. "Áine received a lot of personal attention, and everyone was wonderful. We couldn't be more grateful."
Hope for the future
Dr. Upadhyay believes the way Will and Alexandria have rallied around Áine during her cancer treatment has been one of the key components to Áine's overall wellbeing and mental health through the difficult times.
"They've normalized things as best as they could for her and chose to make the best of an awful situation," she says.
Áine is now in the maintenance phase of her treatment, which will last through May 2018. Despite all of Áine's medical needs, Alexandria and Will vow to make sure Áine continues to be a kid, play her drums, dance, give elbow and fist bumps, rock out, have friends, read, go to preschool, and above all, be resilient.
They want to be kids and this disease shouldn't stop them.
Even before Áine was born, Alexandria says, people kept telling her what her daughter could and couldn't accomplish because she had Down syndrome.
"It was always my goal to make sure Áine felt that she could grow up to be whatever she wanted," says Alexandra. "If she wants to be the first Down syndrome woman doctor, then she can. If she wants to be a zookeeper, she can. And if she wants to live with me for the rest of her life, that's OK too," says Alexandria. "And it's the cancer that has strengthened that in me, for her."
The Randles' tips for parents of kids with leukemia
- Take care of yourself, because it is going to be a long and hard road. We took advantage of the chaplin and the reiki calming sessions that are offered through Cedars-Sinai and that was very helpful.
- Eat and sleep when you can.
- Let your kid play. At the end of the day they're children. They want to be kids and this disease shouldn't stop them.
- Surround yourself with people who can support you.
- Be patient. Cancer and chemotherapy is not forgiving and it doesn't discriminate. It's going be tough and you'll have ups and downs and that's why you have to be as patient as you can.
- Never let your kid feel alone. That's what can make the cancer and chemotherapy more traumatic.
- Hug and love your children because cancer is a beast. Cancer is abnormal cells doing abnormal things but the treatment is mentally, physically, and emotionally exhausting. What treatment demands of the patient and the family is difficult and taxing.
- Celebrate the little things. Áine lost her hair by the time she was 21 months old. It has since grown back and for the first time, a couple weeks ago, she got her bangs cut. That was awesome.
- Support your partner, cherish each other's strengths and weaknesses.
- Laugh. Laugh at yourself and laugh with your child. We know the circumstance can be tough but sometimes laugher is the best medicine.