Childhood Cancer Survivors
Relationships With Parents
Childhood cancer affects the entire family. At diagnosis, the family system undergoes intense stress and reorganization. Roles and responsibilities are adjusted as parents try to balance taking care of their ill child with the needs of the rest of the family. Major financial decisions often need to be made; one parent sometimes must take leave from or quit a job to help the child through treatment. Parents strain to find ways to support one another emotionally and manage their own strong feelings of fear and uncertainty.
Shifting roles
Interactions between parents and a child with cancer also dramatically shift. Family rules may change to adapt to behaviors caused by disease, medication, or emotional reactions. Parents need to become the medical overseers for their child—monitoring temperatures, side effects, and reactions to medication. Children often shift to spending more time with family members than with peers. When treatment ends, interaction patterns and roles among family members may have permanently shifted. While survivors and parents often report increased closeness as a result of the survivor’s cancer and treatment, these changes may impact important developmental processes of the survivor.
We ended up being really permissive parents during treatment. That was hard to shift from afterwards. I feel we have a closer bond with our children than some parents because of our cancer journey, since our care and time together was so much more intimate in many ways. Watching our children being so brave during treatments and dealing with adult situations, like intense medical treatments and the death of some friends, gave them a maturity that a lot of kids don’t have. I respect them a lot as people and survivors, not just little kids.
It was a little difficult to return to normal, but my family made it much easier. They threw a surprise end-of-treatment celebration with all my friends and extended family, and it was a truly touching and special event. I really felt loved. Moving past it, there were times when my family was a little overbearing because they were nervous about me. For example, I was not allowed to play football until a year or two after treatment, despite there not being a real reason to keep me from playing. Over time we were able to find a happy medium. My grandmother, the constant worrier and whom, I’d like to mention, I love very much, would fuss over me whenever I saw her, always worrying that a speck of dust would bring the cancer back. It took a while for everyone to adjust, but after some time, things returned to “normal.”
My parents were an incredible support system throughout my time with cancer. They juggled job responsibilities and caring for my brother, yet still managed to always have one or both of them in the hospital with me at all times. After treatment, their parental roles stayed relatively the same.
Cancer in adolescents may disrupt their normal developmental process of emerging autonomy. At a time when they are gradually withdrawing from the family and beginning to function independently, they suddenly become dependent upon medical personnel to save their lives and on their parents to provide emotional and physical care. This can add considerable stress to the already turbulent teen years. After treatment ends, some parents continue to feel protective and have difficulty when their children begin or resume their journey toward independence. Conversely, some teens may have difficulty initiating this process towards independence and may feel more inclined to stay near family.
Parents and their survivor children often have different views about how prominent a role the cancer experience should play in life after cancer treatment ends. Some surviving teens and young adults want to leave the cancer behind and get on with their lives. If their parents share this view, a smooth transition to adulthood can occur. If the parent has established deep ties in the cancer community, he or she may have difficulty accepting the child’s decision to relegate the disease to the past. On the other hand, some parents want the child to pretend the cancer never happened or accept that it is over now and time to move on. Parents’ long-term responses to their children’s survival vary widely and can fluctuate over time.
In some cases, cancer results in disabilities that affect the survivor’s ability to live independently. Some survivors are never able to live on their own, while others return intermittently to live with their parents for financial or health reasons. These situations create a tremendous challenge for the family. Parents need to adapt to having an adult child as a temporary or permanent resident in their home, as well as make arrangements for care when they are no longer able to provide it.
I grew up feeling very close to my mom after spending countless hours with her in hospitals and cars going back and forth to appointments. My sister told me she grew up feeling a lot closer to our dad, since our mom was not at home as much.
My mom and I were always really close. The one it really affected the most was my dad. My relationship with him changed --my cancer brought us closer. He gave me so much empathy and support where previously we didn’t have that kind of relationship. I saw how hard it was for him to see me sick. It made me feel like “oh, maybe he does love me because this is making him sad.” My mom did everything in her power to make me comfortable. If I was able to eat that week, she was making whatever I wanted. She provided constant support and helped me through it all.
My relationship with my parents was impacted for the better as a result of my battle with cancer. Spending that much time one-on-one with your parents or caregivers for such long stretches of time built a level of trust, love and honesty between us that I think few people are lucky enough to have. Making hard decisions together when I was young has allowed me to always be very honest with my parents, allowing us to maintain a strong and special relationship into adulthood.
We both had a lot of animosity about her experience, but were not good at expressing it. We would get in arguments, but eventually we realized that, yes, we were handed really crappy cards, but we still won the deck. It wasn’t until recently that we worked through a lot of our issues. I was projecting on her that we did not or could not have certain things because she was sick, but that is not her fault. She was mad at me for being sick in the first place, but that is not my fault. My relationship with my youngest daughter was easier because we have never had any animosity toward each other. Our relationship revolved around going places and having fun together, whereas my time with my oldest daughter centered around all her medical appointments. They would both get annoyed when I brought up issues with the other at their doctor appointments. But the doctors needed to know our family’s medical cancer history.
My relationship with my parents is very complex. Even though they are loving, we also fought a lot. Although I am now an adult, I feel like they are still very involved in my life. They say that they would like me to be more independent and live on my own, but they continue to try and have a say. I understand that it is because they feel protective and concerned, and a large part of me does not mind, but another part of me would like to be truly independent for the first time.
I was close to my parents before, but I was also only 11 at the time I was diagnosed. I think we are so close now because of my experience with cancer. I think they also became spiritual people because of it. I think they show emotions more than they did prior because they know how important this life that we’ve been given is. I truly don’t know what I’d do without them.
Both times that our oldest daughter was diagnosed with cancer, my husband and I were on the same page, always loving and understanding toward one another. The experience of our young daughter surviving two childhood cancers strengthened our marriage. My husband had to bear the financial burden, and I took on the emotional burden. We understood the challenges of each other’s responsibilities and were never angry with one another about it.
My mom took off work throughout my entire treatment. As we went through the treatment together, it gave me a deeper level of love and appreciation for her. There were good and bad days of treatment. One weekend when I stayed home, I felt really sick. My mom let me play FIFA with my brothers for hours upon hours. Usually, my mom would have wanted us to spend our time in more beneficial ways, but I know she adjusted the rules a bit depending on how treatment was going. If it was a good day, she would encourage me to do my homework while I felt good, which helped me stayed on top of everything. Without her guidance, I don’t know that I would be at UCLA. She was very good at understanding what I needed in the moment. I finished treatment at the end of my junior year.
Adult survivors sometimes revisit their cancer experience by asking their parents questions and soliciting their memories. This can be especially helpful if they experienced cancer at a very young age…some might have no memory at all. Such parent-survivor conversations may help survivors gain an understanding of the trauma from their parents’ perspective. One method is to sit down together and compare recollections. Individual views of the same experience can be incredibly different. Another method to explore one’s cancer memories and feelings about them is to join an online discussion group, chat room, or survivor support group.
Table of Contents
All Guides- Acknowledgements
- Contributors
- Foreword
- Preface
- 1. Survivorship
- 2. Emotions
- 3. Relationships
- 4. Navigating The System
- 5. Staying Healthy
- 6. Genetic Testing And Childhood Cancer
- 7. Diseases
- 8. Fatigue
- 9. Brain And Nerves
- 10. Hormone-Producing Glands
- 11. Eyes And Ears
- 12. Head And Neck
- 13. Heart And Blood Vessels
- 14. Lungs
- 15. Kidneys, Bladder, And Genitals
- 16. Liver, Stomach, And Intestines
- 17. Immune System
- 18. Muscles And Bones
- 19. Skin, Breasts, And Hair
- 20. Subsequent Malignancies
- About The Editors
