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-leukemia 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, coping with hospitalizations, 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.

We’re a year off treatment, and I really don’t think about relapse very often. I do occasionally find myself studying her to see if she looks pale, or I worry when she seems tired or her behavior is bad. Usually, I’m feeling safer. But honestly, I don’t think any of us will ever go back to the days when we just assumed that our kids would grow up, that the parents would die first; that sense of security is probably gone forever.

• • • • •

Shawn is six months off treatment, and he’s just like a flower beginning to bloom. He’s so happy, and I try to be happy with him. I try very hard to put worries about the future out of my mind, because I feel that those thoughts will rob me of just being able to enjoy Shawn.

• • • • •

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 whatever keeps the family moving forward together to face their individual and collective futures.

When Abby was on treatment, I spent a lot of time reading and asking questions. Our treatment community was always positive about treatment and survivorship. I knew from the online support group I belonged to that the “big comfy couch” of survivorship might have some lumps. However, I expected somehow that they would be physical and wasn’t prepared for the aftermath of medical trauma exposure. Abby and our family struggled emotionally to move forward. I personally felt different; having entered “cancer land” in my early 30s, I then awoke at 38, shaking my head wondering, “Who the hell am I?” My husband and I entered marriage counseling—there was much forgiveness to be asked for and given on both sides. Seven years later I still contemplate cancer land and its lasting impact on all of us.

• • • • •

Well, we finally did it. We took a deep breath, a heavy sigh, and we packed up the medical supplies. While this step may seem insignificant for some, those who have dealt with a chronic/life-threatening illness in their family know that the disposal of your arsenal of medical supplies is a symbolic rite of passage. It can only mean two things: your loved one has passed on, or you simply don’t need the supplies anymore. We thank God every day that we ended up with the latter reason.

Katy’s medical “tower” was stored in our hallway and included various bins and drawers full of central line supplies, a mini IV pump, masks and gloves, hypodermics, and sharps containers. It was very conspicuous. You simply couldn’t miss it if you walked through the house. It was our constant reminder that we had a sick child, and was at times, for me, a crutch. I think I felt that as long as the tower was there and properly stocked and arranged, I was somehow in control of Katy’s illness. I feared disposing of or putting anything away, thinking that if I did, she would most assuredly relapse and I’d need it again. No, of course that’s not rational, but rationality has never been one of my strong points.

However, as the months passed, the tower gathered dust, and soon I couldn’t remember the last time we’d even used any of the supplies. A few more months passed, and I began to realize what an eyesore this bunch of junk was! So, after my husband, David, brought some big boxes home from work, it was time. We did it together. Into the boxes went the tubing and syringes, masks, and dressing change kits for the kids’ oncology camp. Into the garbage went everything else. It was so liberating! I can’t imagine why we kept that stuff around for so long. It felt like the end of an era. And in a way, it was.

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. Examples of ways people have given back 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.
• We held a bone marrow drive.
• I took all of our leftover catheter line supplies to camp and gave them to a family that 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 who 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.

• • • • •

My two daughters were both diagnosed with childhood cancer—Rayne died and Izzabella is alive. Our experiences have changed the direction of my life. Because I so understand and relate to families of ill children, I’ve returned to school to get trained to be an ultrasound technician and a radiation therapist. I know that fear of the unknown is the enemy of parents of sick children, and I can help dispel those fears. This is my way to give back and help other families.

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.