Many children with cancer require frequent surgical interventions – to diagnose, stage, or treat their disease. Other common surgeries for children with cancer include collecting a biopsy, placing a central line, or removing all or some of a tumour. This, combined with the move to day surgery to minimize the time a child spends in the hospital, means that parents are often responsible for managing pain and administering pain medications at home, and advocating for and learning about optimal pain management for their child while in the hospital.
This can be a very daunting task as even the most routine surgical procedures can become painful and cause feelings of anxiety for children. For many parents, it can be difficult to accept that your child needs pain medication. Adding to this, the media’s portrayal of abuse of opiate pain medications can make it feel overwhelming or even impossible to consent to give these to your child. Parents often worry that their child may develop an addiction, or have uncomfortable side effects from these medications. These thoughts can lead to parents choosing to withhold medications for pain, or not giving these medications consistently and as prescribed.
However, poorly managed post-operative pain can delay healing, cause chronic pain, and lead to distress and anxiety with subsequent procedures.
by Jenny Doull, mother of Phoebe
Hearing that your child has cancer turns your world upside down. Our daughter Phoebe’s diagnosis of leukemia was our first experience in the medical world and we found ourselves suddenly and frantically trying to learn all that we could about this new place, so that we could adequately care for her. We learned that caring for a child with cancer is complex and often requires around the clock monitoring and creative solutions to manage pain. It’s an ongoing learning process and managing post-operative pain is one of the many aspects that parents and caregivers must become familiar with.
Phoebe was diagnosed with cancer when she was just 9 weeks old. At the time of her diagnosis, due to her age, it was incredibly difficult to determine if she was in pain. She couldn’t speak and we were just getting to know her. She was also very small and the thought of giving her pain medications in addition to chemotherapy was very difficult for us as parents.
Phoebe was just 9 months when she went through a bone marrow transplant, a procedure which included multiple surgeries. By this time, we began to recognize behaviors that Phoebe would exhibit when she was in pain, but we were reluctant to give pain medication stronger than Tylenol because we were unfamiliar with and fearful of possible side effects of other pain medications. I remember nights when her pain was so severe, she would hold her breath, grunt and cry out. Her heart rate soared and we realized that if we couldn’t get ahead of the pain, she would experience even more complications. Her doctor at the time was very firm with us, explaining that she should not be in this much pain, that we have the tools to control it and doing so will help her heal. We agreed to a constant infusion of morphine – and as a mom, I remember not wanting to talk about this to anyone. Seeing my daughter in so much pain caused me to feel ashamed and scared.
But I quickly realized, when I saw Phoebe’s breathing relax, her heart rate come down, and as I watched her sleep peacefully and without pain, that we did the right thing.
As she grew older, we worked with Phoebe to come up with pain management techniques that she could do herself; simple things like deep breathing, distraction, and talking when she felt scared before a surgical procedure, helped immensely. When we expected pain to be severe as a result of a more extensive surgery, we relied on stronger medications used in combination with psychological approaches to pain management. Our past experiences taught us the importance of remaining ahead of Phoebe’s pain.
To properly heal and to have optimal quality of life, pain needs to be managed and controlled.
Some of our hardest memories of Phoebe’s cancer treatment are pain related. However, looking back, we realize that the most important thing we did for Phoebe, other than love her and care for her with everything we had, was help her to be comfortable. Cancer treatment is hard enough for a child, it shouldn’t be painful.
Fortier, M. A., Wahi, A., Maurer, E. L., Tan, E. T., Sender, L. S., & Kain, Z. N. (2012). Attitudes regarding analgesic use and pain expression in parents of children with cancer.Journal of Pediatric Hematology/Oncology, 34(4), 257–262. https://doi.org/10.1097/MPH.0b013e318241fd07
Jenny is a parent and passionate childhood cancer advocate, the latter role beginning in 2010 when her 9 week old daughter, Phoebe, was diagnosed with infant leukemia. Since this diagnosis, Jenny has worked to raise awareness of childhood cancers and advocate for change. She has co-organized national childhood cancer awareness events on Parliament Hill which have included lighting the Peace Tower gold to highlight the needs of children with cancer. She is co-founder of the Phoebe Rose Rocks Foundation – an organization founded in memory of her daughter Phoebe to raise funds for childhood cancer research, a founding member of Ac2orn (Advocacy for Canadian Childhood Oncology Research Network), and a parent representative for C17’s Research Network. Jenny enjoys writing and shares her family’s experience with childhood cancer and grief in a blog titled, Phoebe Rose Rocks.