Zoe is obsessed with stuffed animals, enjoys a good meal and has a mature palate! She would love to travel to many different places all over the world.
Zoe was diagnosed with Acute Lymphoblastic Leukemia (ALL) 3 weeks before her sixth birthday. After a her first trip to Disneyland, over Thanksgiving break in 2015 she started getting fevers. I initially took her in tho her pediatrician where they ran a number of tests with negative results, and I then asked for a blood test. I didn’t think much about it but received a phone call later that night. The phone call is a blur too me now, but whatever they told me I googled and it pointed to Leukemia.
After following up with our pediatrician he requested an appointment to the hematology oncology clinic at our local children’s hospital. I made an appointment first thing for the following week, but with fevers appearing I was told to go to the ED. We were sent home with a “viral suppression” diagnosis and I was told to cancel the appointment at the clinic. I couldn’t shake what I had already seen and wasn’t satisfied with the diagnosis. My Mom gut and my pediatrician’s persistence got me back in.
We soon had an appointment with the hematology clinic but things were looking better and told to come back. Another fever came on the appointment day, so we were rescheduled another week or two.
After 7 weeks from the first fever, a bone marrow biopsy was recommended. I got the call within 6 hours. We were told to pack for a week and come back to the hospital.
We were told this is the “best cancer” a child could get. I guess they meant treatable. In 1960 this disease was terminal. We had a chance 80% to be exact!
After all the genetic testing and other markers they put her in a standard/low risk category. Leukemia is not staged because it’s already throughout the body, but this category brought us into the 90% for a cure.
Treatment was hard for all of us. I cried for days while Zoe would sleep 23 hours a day. She was on steroids for 4 weeks straight and gained so much weight she was uncomfortable, like an overdue pregnant woman! Her hair shed, but she wouldn’t let me shave it. She went from the shower to a ponytail for months. We look back and tease her that she was the last samurai!
Zoe’s brother was only 4 at the time and didn’t quite understand what was going on. He was schlepped back and forth to his grandparents as we had a lot of hospital visits. He too missed out for the next two years. We couldn’t commit to anything for him. We didn’t know when another hospital stay would arise.
Zoe missed over one third of her kindergarten year. She tried to go back but after getting infection after infection she was told to stay home. We were isolated for what seemed like forever. Life as we know it was no more! Friends and family stayed away. Sometimes I think they just didn’t know what to say.
After a brutal summer, finishing the worst part of treatment, Zoe was able to start first grade. She started school 4 weeks late. She was bald, but she was beautiful. She got teased a lot. Kids associate cancer with death. You figure it’s usually their grandparents, not their friends. A boy in her class had just lost his dad to “C” which didn’t help.
The next year was uneventful, thankfully. A few stays because of fever or infection or an occasional blood transfusion. Treatment for ALL is over two years for girls (an additional year for boys). Finally after 27 months Zoe will ring the bell at her clinic visit May 9, 2018. She will continue seeing her oncologist for five years before she is considered cured. All we can do is hope for the best. We hope she had a full life. We hope she has minimal side effects from decade old medication. All of these kids fighting this battle truly are resilient.
