Zoe, a 2010 St. Baldrick’s Ambassador, was diagnosed with Ph+ ALL when she was 4 years old. Now 9, Zoe is starting fourth grade, taking hip hop and ballet classes, and is starting treatment with a targeted chemotherapy pill. Zoe’s mom, Suzanne, gives us an update.
2010 St. Baldrick’s Ambassador Zoe with her mom, Suzanne. Zoe recently started treatment for a molecular relapse due to Ph+ ALL.
When I think of all the things Zoe has seen and done in her life, it is hard to believe she is only 9 years old.
When Zoe was 4, she was diagnosed with acute lymphoblastic leukemia. At first we were told it was the best-case scenario, that leukemia had great treatments and outcomes.
Eight days later, that all changed.
We were told she had a very aggressive form of leukemia and her odds of survival were not great. She began a rigorous treatment plan with high-dose chemotherapy and oral medications. We spent 40-plus days at a time in the hospital, sometimes only to be sent home for two days before returning for her next round of chemotherapy.
Zoe requested a special three-tiered cake with the words, “I Kicked Cancer’s Butt!” Unfortunately, our celebrations were short-lived.
This went on for three years. Then we started lower-dose chemo and outpatient visits. Finally, February of this year, Zoe was told she could stop all medications. She was truly finished treatment.
We celebrated! Zoe requested a special three-tiered cake with the words, “I Kicked Cancer’s Butt!” Unfortunately, our celebrations were short-lived. In April after specialized testing, we discovered Zoe was in what is called a molecular relapse.
The thing that makes Zoe’s cancer so aggressive is that she has a mutation in her chromosomes. Her numbers 9 and 22 chromosomes break apart and create a shortened 22 chromosome. What this all means is the 22 chromosome tags premature white blood cells as cancer, then tell it to rapidly reproduce. This mutation is putting Zoe at a high risk for the leukemic cells to return.
Zoe is now back on a targeted chemo pill. It has been a long three months of lab work and waiting and she is still not in remission. We live and breathe by her numbers.
I have learned that Zoe will be on this chemo for the rest of her life. It is unknown what the long-term effects will be, whether she will be able to have children when she grows up, or if her heart or kidneys will be damaged.
Will the leukemia return again? I don’t know…I pray that she can continue being a normal child for many years to come.
Will the leukemia return again? I don’t know. Very few children make it through without relapsing. I feel like it’s the elephant in the room all the time. We don’t talk about a full relapse but we all wait around wondering when it will happen.
Starting the new chemo was hard for Zoe. She cried and asked if she was going to die. She told me I lied to her when I said she was done. She said she was scared and didn’t understand.
I explained to her the best as anyone can what was going on. Unfortunately, more research is needed to find out how these chromosomes develop and how to cure these kids.
At the beginning, Zoe had leg pain, headaches, and stomach pain. Thankfully, those have all gone away. She is loving fourth grade and making friends. She takes hip hop and ballet classes. I pray that she can continue being a normal child for many years to come.
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