Parenting after a ROS1+ Cancer Diagnosis
Updated: Feb 15, 2022
My children were 7 and 10 when I was diagnosed. I used to think being a parent of young children was, emotionally, the hardest part of dealing with this disease. Since I’ve been lucky enough to survive six years, I’ve come to appreciate how much my children have grounded me, kept me in the present and motivated me to stay as healthy as possible.
I am now grateful to be a parent while traveling this path, but it isn’t easy. Every family is different. And within a family, different children will have different responses and needs when faced with their parent’s diagnosis. I would never presume to advise others. That said, I will share some of the things our family did to cope.
Teachers: Very soon after diagnosis, we spoke with the children’s teachers to let them know what was going on. We wanted help keeping an eye out for atypical behavior, and perhaps extra support. Some teachers have proven more empathetic and skilled at this than others.
Individual Therapy: The kids went to their own individual therapists. Initially, we used a service offered through the school, and got really lucky the first few years. Our children were assigned to kind, competent therapists who were free and conveniently located at the school. Palliative care providers helped us find free therapy support through local hospitals. For young kids, therapists use alternative methods to foster connection and expression (e.g. art 4 Renee Parker is an OB/GYN physician who now uses her expertise to help others and herself with ROS1+ and other lung cancers. She was diagnosed in April, 2017. projects, games). So our kids enjoyed the therapy time. Eventually, we shifted from free services to private therapists, whom the kids continue to visit fairly regularly.
Family Therapy: In the early days, we saw a family therapist to give the kids an opportunity to approach us with questions. The therapist helped us find a balance b e t w e e n b e i n g h o n e s t a n d n o t overwhelming our children with details. We found it was imperative to be open and honest about my diagnosis, but also not bring them along on the rollercoaster that is every scan cycle. We still check in once in a while - sometimes with a therapist, sometimes without - to make sure the kids have a chance to ask about anything percolating under the surface One of our children is more interested in discussing cancer than the other, and that is fine.
Maintain normalcy: It has been very reassuring to the children to maintain normal activities and schedules. Lots of people volunteered to babysit or take them to activities, but our children are somewhat shy and uncomfortable with strangers. So unfortunately, we couldn’t take advantage of generous offers.
Re-jiggering parental duties: Pre-diagnosis, I was the primary parent responsible for most child-centered tasks (carpooling, homework…). After, we reallocated tasks. My husband cut back hours at the office, and the kids took on more responsibility for cooking, cleaning, and laundry.
Here are a few things our family did not end up doing: -Books: We were gifted books specifically written for kids with a parent with cancer. I confess, I didn’t find any as useful as working with experienced therapists, so I don’t have any to recommend.
Letter writing: Some parents have written letters or birthday cards for children to open in the future, or recorded video messages. I think that can be beautiful, but I haven’t been able to do it.
Camp Kesem: Camp Kesem is a a free one-week camp for children of cancer patients. It is a fantastic resource, and many children adore it. My kids tried it, but ended up switching to other camps they preferred. Still, I highly encourage other parents to check it out.
Parenting with cancer can be tricky, but I think there are hidden rewards buried in the wreckage. I don’t mean to polish a turd. I don’t wish this on any parent or child. But I do believe my children will grow up to be more kind and empathetic than they might have been otherwise, and more kindness and empathy in the world is not a bad thing. Good luck.