For all the advances that have been made against childhood cancer, it remains the leading cause of disease-related death among children younger than 15, with 1,500 fatalities a year. And while the five-year survival rate has improved in recent decades — to 80 percent, up from less than half 40 years ago — the number of cases is rising, too; it now stands at 10,000, up from 8,000 in 1975.
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Patient Voices: Childhood Cancer
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David Ahntholz for The New York Times
Max Mikulak
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Michael Stravato for The New York Times
Jaiden Ramirez
More than half of childhood cancers are caused by leukemia or tumors of the central nervous system. They are generally treated the same way as adult cancers, with chemotherapy, radiation and surgery. But other issues in childhood cancer are quite different from those faced by adults.
How do parents temper their emotions, remain clearheaded and determine the best course of treatment? Will the treatment have long-term side effects, and should that matter? How does a child maintain youth and enthusiasm in the face of terrifying and debilitating illness?
Beyond the consequences of the disease itself, cancer can leave deep emotional scars on its patients and their families. It is not easy to explain cancer to a young child, let alone begin a conversation about the possibility of death.
And if a child doesn’t survive, how does a family move on?
On nytimes.com, six people speak from a variety of perspectives about the impact of childhood cancer on their lives. Here are three.
John Carey, Colorado Springs
Now 16, he learned he had Hodgkin’s lymphoma at age 13, and has been in remission for a few months.
I’m glad I got cancer, because it completely changed my outlook on life. I think of things completely differently, and I value life so much more.
The worst part of cancer is probably not being a normal kid and just being in a hospital while all your friends are at school. People don’t really like going to school, but when you’re in the hospital getting chemotherapy or in the doctor’s office or just sitting at home being really, really sick, it’s just not fun.
My cancer is doing pretty well. I haven’t relapsed yet, and we’re so happy for that. I’ve been feeling pretty good and just working my way to a more normal life.
Max Mikulak, San Diego
Melissa Mikulak’s son died from a neuroblastoma on Aug. 31, 2008, at age 7.
Max was told he had “no evidence of disease” when he was 4. We went home and we were ready to plow ahead. We had a great year off. And then he relapsed.
The Monday before he passed away, he was looking great. We were making pancakes for dinner. We thought we had three months left. We thought, “O.K., we’re going to have a great time,” and two days later we learned the cancer had spread into his liver.
It’s been two and a half years since he died, and we’ll always be a family of five. He’ll always be with us.
Never lose hope. Something’s going to happen where someone finds a cure for cancer. Or maybe a cure is not going to be found, but the 18 months that you have with your child could be the best 18 months ever.
Jaiden Ramirez, Houston
Toshia Ramirez’s son Jaiden, 7, has diffuse pontine glioma, an inoperable cancer surrounding his brainstem.
We spend a lot of time on our knees, praying and asking God to let Jaiden be one of the miracles.
Jaiden knows that whatever is in his head is making him sick. He knows that it makes him dizzy, makes him sick to his stomach.
I told Jaiden that there was a possibility that God would take him home with him. So he cried. He said he didn’t want to go live with God; he wanted to stay here with Mommy and Daddy.
And I cried, and I told him, “You know, I want you to stay here too, but ultimately God has the say-so, so we have to abide with his wishes.” We haven’t talked about it again. If he brings it up we talk, and if he doesn’t then we don’t.
source: New york times
After reading this article do any of you who read this site, have a comment to tell the world how neuroblastoma of a child affected your life or if your a survivor, if it made your life better or worse afterwords
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