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.
Fighting cancer is hard, but fighting it when you have to bring your kids along for the ride makes it even harder.
"What are you doing here? What are they doing here? We can't have children running around! Children don't belong here!"
As the woman marched straight toward me on the attack, I looked down at the baby I had managed to keep happily strapped in his stroller for over an hour with snacks and a pacifier. I looked over at my preschooler who had barely moved from the spot in the corner where he watched a movie on an iPad. I had no idea why she was so angry with me, or why she was accusing my kids of causing chaos. Didn't she realize I was a patient?
After an emergency in the infusion room brought the clinic to a complete halt for over an hour, I found a corner and tucked my kids out of the way until it returned to business as usual and my lab results were ready. I had been bringing my kids with me to my weekly lab draw for over a year without issue. It was one way I was trying to incorporate parenting into my cancer diagnosis, and they had grown used to the routine.
The baby was always content in his stroller, and his older brother knew to sit quietly on the hallway bench within eyesight of my seat in the lab. I likened bringing my kids with me to bringing therapy dogs into that space. Nurses always appreciated the youthful break from sick patients, and those patients always enjoyed the youthful break in a place where sickness reigned supreme.
After an hour of keeping my kids content and quiet in a corner, I didn't have energy to give an equal response to this woman's hostile approach toward me. Though I was floored by what she said, the only response I could muster was, "I know my children don't belong in a cancer center, but I didn't have a choice!"
She had the nurse quickly sort my labs and prepare the shot I would need to boost my white blood cell count before treatment the next day. I sat back in the lab as she stood guard over my children — both sitting just as quietly as I had left them. When she escorted me out of the clinic, she couldn't help but acknowledge how well behaved they were, especially considering their age. But the damage was done, I was forbidden from bringing my children with me to even the simplest appointment, and I walked out with my tail between my legs. I fought back the tears until she had retreated into the clinic and out of sight. Parenting young children is exhausting, but throwing cancer and chemo into the mix left me without the emotional energy to make it through that confrontation without breaking down.
I had been treated in a way that no cancer patient should ever be treated in a place meant to care for them. I had been treated like I was doing something wrong, when all I was really doing was trying to survive so I could raise my two little kids. And therein lies the problem — oncology isn't set up to account for mommies and daddies getting cancer.
I left that cancer center when I moved to another state shortly after that experience, but even if I didn’t move away, I would have taken my business elsewhere. I never walked into that clinic again without feeling shame and scapegoated for all the other young parents with cancer who came before me. Having cancer with little children is already hard, and there was no need for them to make it even harder.
I'm now at a cancer center that not only allows my children to come to infusions with me if needed, the nurses are always happy to accommodate them with an extra chair or warm blankets. Volunteers come around to ask if they would like a coloring book and crayons they keep on hand for pint-sized visitors, and schedulers are always accommodating with appointments that fall within school hours. Having an oncology team that supports the unique position I'm in has made it that much easier to parent with cancer. I know that's not the case for most of my fellow parents facing this disease, but I can hope that we are headed in that direction. I'm living with a cancer that is drastically on the rise in young adults, and the oncology world needs to catch up to the growing number of young parents coming through their doors.