Pediatric Oncologist Offers Advice, Encouragement to Parents
For all of its advances in treatment, the science of pediatric oncology still has very few answers as to why cancer happens in children. Many parents wrack their brains trying to think of what they did wrong to cause cancer to happen or what they didn’t do to prevent it.
The fact is cancer is a mistake of nature.
To date, we have no way to control who will get cancer and who won’t. Whether a child was breast-fed or bottlefed, got immunizations or didn’t, spent all their free time in front of the computer or on the soccer field, none of those things have been shown to cause a difference in determining who will develop cancer. For the pre-teens and teenagers, it’s important they understand that cancer is not a punishment for misbehaving or defying their parents or wishing bad things on a person.
Here's some other things to keep in mind:
Children are very smart. Even small children pick up on the mood of the room and of their parents. It is important to be honest with children, in an age appropriate way, about what is going on. Being afraid of the word “cancer” is not a childhood thing--it comes from adults. If children know there is something wrong, but there is a plan to help them get better, then they can talk about it and, even better, help be part of the fight. If the children sense their parents are uncomfortable talking about their cancer, they may hold things inside and not ask important questions like, “Am I going to be okay?” or, “Am I going to die like grandma did?” And so in their minds, they may decide they are going to die, because no one will tell them otherwise.
Be careful where you get your information. There are many personal web pages and blogs out there with people telling their stories. Often times, the loudest voices are from people who are upset about how things are going with their child. While there is truth in everyone’s stories, remember that your child is unique, and someone else’s experience may not be at all relatable to yours, even if the diagnosis is the same. When you read about scary or unusual things, please speak to your physician about it. We would rather know what you are worried about and help to allay your fears than have you stay quiet but silently panicking over potential problems.
On that note, remember that all cancer is not alike. As you may have already found out, people come out of the woodwork with cancer stories, trying to be helpful. But those “friend-of-a-friend” stories can be confusing and sometimes very disturbing. It’s okay to cut people off and tell them you don’t want to hear their stories. If you are too polite for that, remember that adult cancer is remarkably different from pediatric cancer. Even if someone’s grandpa had “liver cancer” and your 2-year-old child has “liver cancer,” they are almost certainly two different diagnoses, and have very different treatments and cure rates. The same is true for most leukemia – children with leukemia and lymphoma do much better in general than adults. Again, if anything you hear raises doubts in your head, ask someone on your medical team to help you sort things out.
Cancer is going to change your lives – scheduling trips to the office, admissions to the hospital (both planned and unplanned), taking medicine. Sometimes it will be terribly inconvenient. But our goal as medical caregivers is to help make cancer a part of your lives--not take over your lives. While you will never get back to the normal you knew, you will reach a new normal. As part of that, it is important for parents and siblings to take care of themselves as well. Sometimes this means getting a babysitter to go on a parents’ night out or to go see Sissy’s performance in the school play. Many of the plans for chemotherapy treatments are made in advance and based on set schedules, but changes here and there can sometimes be negotiated for important family events.
For many pediatric cancers (for instance, pre-B lymphoblastic leukemia), a cure has become available for most patients. For others, we are still working to find the right combinations of medicines and other therapies. Many of these advances occurred because of clinical research trials. This means that the parents of children diagnosed in the past agreed to be a part research. These trials may have included new medicines, changes in how old medicines were given, or changes in when surgery or radiation occurred. The children may or may not have been helped by the trial, but the next generation of children is often treated differently based on the results of the previous clinical research. Those children who participated were trailblazers, and their parents were very brave to try new things. Pediatric oncologists continue to offer clinical trials for many pediatric cancers in order to continue to improve chances for finding a cure, to decrease toxicities, and/or to decrease the long term effects of our treatments.
I would encourage every family to strongly consider participating in research if it is offered to you. The children who will be cured this year stand on the shoulders of the children that came before them. They can return the favor by being part of the next discovery.
Dr. Rachel Egler is an assistant professor of pediatrics at Case Western Reserve University and a pediatric oncologist at University Hospitals Rainbow Babies and Children's Hospital.
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