In the fall of 2015, Alexa’s pediatrician ordered several tests to determine the cause of the 3-year-old’s recurring fevers and stomachaches. Her parents were shocked when an ultrasound revealed a large mass on one of Alexa’s kidneys. Additional testing at CHKD revealed lesions in both of her lungs. Alexa had cancer.
She was diagnosed with Stage IV
Wilms’ tumor, a rare kidney cancer that primarily affects children. “When we first got the news, we were devastated. We couldn’t believe our little girl had cancer, but the entire team at CHKD was there to answer all our questions. They supported us from the very beginning,” says Alexa’s mom, Anne.
Alexa spent the following months traveling from her home in Williamsburg to CHKD for chemotherapy treatments to fight her disease.
CHKD child life specialists introduced Alexa to the Beads of Hope program, which helps patients understand and cope with the complexity of their care. First, Alexa received a “starter” necklace of beads that spelled out her name. After each chemotherapy treatment, blood test or other treatment milestone, she collected another meaningful bead to symbolize her completion of that step.
“The Beads of Hope program is a great way to help children and families celebrate every small victory during their battle with cancer and at the same time build a tangible, lasting record of their child’s journey,” says Stephanie Langevin, nurse manager of the
Children’s Cancer and Blood Disorders Center at CHKD. “The kids get excited about collecting their next bead, which sometimes helps distract them from the many procedures and tests they have to endure.”
For children like Alexa, a starter necklace can quickly turn into a long, colorful strand. “Alexa has collected 72 beads, and her favorite is a teddy bear that represents her nurse, Mr. Rob,” says Anne. “When she was in the hospital receiving treatment, getting a new bead was something she could look forward to, and she enjoyed carefully stringing each one on her necklace.”
Last summer, Alexa celebrated the end of her treatment, adding a very special bead to her necklace – a lion to signify her courage and strength. And a year after her diagnosis, she and her family received the news they were hoping for – Alexa was cancer-free. Today, Alexa’s string of beads isn’t getting any longer – and that’s a good thing. Still, it hangs prominently on the dresser in her bedroom and remains a colorful chronicle of hope for a happy and healthy future.
This story was featured in the summer 2017 edition of Kidstuff magazine, a quarterly publication from CHKD that features inspiring stories about patients, physicians and friends of CHKD.