Childhood Cancer

Print

Childhood Brain and Spinal Cord Tumors

What is normal?

After years of treatment, families grapple with the idea of returning to normal. Unfortunately, most parents no longer really know what “normal” is. Parents realize that returning to the carefree pre-tumor days is unrealistic, that life has changed. The constant interaction with medical personnel is ending, and a new phase is beginning in which routines do not revolve around caring for a sick child, giving medicines, and keeping clinic appointments. Although it is true that the blissful ignorance of the days prior to cancer are gone forever, a different life—one often enriched by friends and experiences from the cancer years—begins.

You can’t tell from looking at James, who is 6 now, that he’s had brain surgery and chemo. There are no obvious scars or deficits. When he starts to talk or tries to run, then you notice it. He’s very friendly and verbal, but his speech is off for his age, his motor skills are slower, he tires easily, and he has partial seizures. He gets services at school, including speech and physical therapy, and we’re working on a plan for next year to accommodate schoolwork because of seizures. We’ve been doing fun things all along, like trips to zoos, walking in the park, and swimming to increase his overall strength. People see us using his wagon to give him a rest when he needs it. Usually someone will look at us strange when they see a big kid using a wagon, and if the moment is right, I’ve been known to offer some insight. But when you’re out having fun, you don’t always want to have to explain.

Chemo is such a horrible thing for your child to endure, but at least you are actively fighting the beast; so when it ends you feel a bit like you’re flying without a net. You get so used to this bizarre new “normal” of treatments and blood tests and doctor visits, and then suddenly you stop, but you don’t get the old normal back.

I think it’s probably best to approach the end of treatment as a chance to see your child get his healthy color and energy back, and an opportunity to create and explore a new “normal” for your family that is richer and more meaningful than the one you left behind. It’s also really nice to finally have the chance to reconnect with your spouse (and other children) and heal all the relationships that have taken a beating during the stressful treatment period.

As for me, for perhaps a year after Joseph’s treatment, I existed in a dazed mix of emotions and thoughts. I was fearful of relapse, thrilled that Joseph had survived the cancer and the treatment, concerned about what late effects lay around the corner, all tempered with a warm and thankful feeling that I knew I would never, EVER take my kids or my good life for granted anymore or sweat the small stuff the way I used to. There were days I felt like I didn’t want to crawl out from under the bed, and other days I couldn’t stop singing and being silly.

I think off treatment is a lot like on treatment—you just have to take it one day at a time.

“Normal” is a moving target—different for every person and family. No one can tell you what your normal will be. Normal is what keeps the family alive and planning and moving together to face their individual and collective futures.

For many people, helping others is a satisfying way to reach out or bring closure to the active phase of cancer treatment. Serving others can create something enormously meaningful out of personal challenges, which is why many parents and children like to give back to the cancer community in some way. Some examples of ways people have reached out include the following:

  • I requested that the clinic and local pediatricians refer newly diagnosed families to me if the parents wanted someone to talk with. I remembered how impossible it was to go to meetings in the first few months, and how desperately I needed to talk to someone who had already traveled the same road.
  • We started a Boy Scout project to keep the toy box full at the clinic.
  • My children are counselors at the camp for kids with cancer.
  • We organized a walk to raise funds for the Ronald McDonald House.
  • We (a group of parents of children with cancer) requested and were granted a conference with the oncology staff to share our thoughts about ways to improve pain management and communication between parents and staff. It was very well received.
  • We circulated a petition among parents to request increased hospital funding for psychosocial support staff. We presented it to the director of the hematology/oncology service.
  • I give platelets and blood regularly.
  • I took all of our leftover catheter line supplies to camp and gave them to a family who needed them.

The possibilities are endless. Parents and children can use whatever talents they have to help others—from designing head coverings to writing newsletters for families struggling with childhood cancer.

I have administered several online support groups for parents of children with cancer over the past decade. Many of these groups have over 500 participants who live all over the world. Some of the members’ children have been cancer free for years, some are newly diagnosed, and some are parents of children have died. These online communities are an important way to find comfort, support, and information. Parents who are far out from treatment remain involved in order to help those who are newly diagnosed. When my son was first diagnosed I was so reassured that people survive the ordeal. After treatment ended I wanted to be there to help others.

An equally healthy response to ending treatment is to put it behind you. Many families, after years of struggles, just want to move on. They don’t want constant reminders of cancer and feel it’s not good for children to be reminded of those hard times.

I realized that it was time to put it behind us when I watched my two children playing house one day. There was only one adult and one child in the family. I asked what happened to the rest of the family and they both said, “Cancer; they died.” I didn’t want them to have any more cancer in their lives. They had had enough. I know people who worry all the time about the cancer returning, and it is not healthy for them or their children. I decided to get out of the cancer mode and back to being my usual upbeat self. I feel that we are finally back to normal, and it’s a good place to be.

Parents and children need to talk with one another, examine their emotions, decide what course they want to chart, and work together toward creating a healthy life after cancer.

CeremoniesFollow-up care

Table of Contents

All Guides