Sarah DeBord was diagnosed with metastatic colon cancer at age 34. In the years since, she has turned her diagnosis into a calling, and become an advocate for other young adults diagnosed with colorectal cancer and parents with young families facing cancer. She works as a communications and program manager for the Minneapolis-based Colon Cancer Coalition , volunteers her time with the online patient-led support community COLONTOWN , and blogs about her often adventurous experiences of living with chronic cancer at ColonCancerChick.com.
To tell or not to tell? That is a question I ask myself at the start of every school year. Do I tell my children's teachers I have cancer?
Because I look healthy and normal when I show up to school, no one would guess that I had cancer. I'm able to avoid the stares, assumptions, and unsolicited comments of concern from anyone I pass in the halls. Because my treatments have been relatively routine and I've been at this for years, our lives lack the unpredictable disruptions many patients can expect after diagnosis. This lack of disruption has led me to want to keep my dirty little cancer secret from teachers and school staff, and it's taken some conversations with other parents and professionals to realize it's not only alright to let this (cancer) cat out of the bag, it's important.
There have been years I have been extremely reluctant to tell teachers I have cancer, and wondered if that was in the best interest of my children. Not only did I want to avoid the stares or pity, I wanted my kids to avoid it, too. They are already experiencing a childhood so different from their classmates, why draw any more attention to it? Does the teacher wonder why I continually turned down opportunities to volunteer or go on field trips? How do I tell them that any free afternoon is going to be devoted to a nap to combat the fatigue that follows me everywhere, not helping out in their classroom? And putting myself in the middle of hundreds of potentially sick kids and germ-covered school surfaces when I'm neutropenic? I think I'll pass.
School administrators and teachers need to know a family is facing cancer so they can recognize when our kids might be off, struggling with emotions they don't want us to see, or need help they don't want to ask us for. My kids aren't coming home to fresh baked cookies and a well planned out family meal most days, as I can barely make it through the door after work before collapsing on the couch to summon the energy to prepare dinner. They need to know that what our children are seeing and experiencing at home is not normal, and our children may be dealing with emotions, lashing out, or struggling socially because they know their family is different. They go to school every day with a much heavier load than other students, and oftentimes the teachers and support staff are the ones to notice it and can offer help. There may also be those times when emergencies arise, disruption occurs, and we will need the support and grace of the school to keep our children's lives as normal and routine as possible.
Knowing also gives our teachers the opportunity to do what they do best - support our kids. My college roommate messaged me one day to ask a favor. A little boy in her class was being raised by a single mom who had cancer. I immediately empathized with the additional challenge she had in caring for him on her own while going through treatment. The class was participating in the Flat Stanley Project, but the mom was too ill to help ship Stanley off on an adventure. She told the student about me, that I had two little boys just like him, and that I cancer like his mom. She asked if it would be OK to send his Flat Stanley to me, and let us take him on an adventure. He agreed. I know my college roommate has a heart of gold, so it doesn't surprise me she made the extra effort to help this student. But she took it one step further by connecting him with a mom just like his. A mom who would understand, a pair of boys who shared his experience, and a Flat Stanley that got extra special care from my family halfway across the country.
Most schools are equipped with professionals that have experience and training for a crisis like cancer, and can help our children navigate the war zone it creates. They can provide tools to families and teachers if needed, and keep tabs on our children, working closely with staff to make sure students can continue to thrive. I know I want to protect my children even more because I have cancer, but there are some things we can lean on our teachers and school staff for, and trust that they will try and do their best to help. This year I will send off the email well in advance of school starting, and trust that those who will watch over my boys this year will do so with the extra grace that we all may need.