September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Ben Ulness
Friday the 13th of July 2012 was the worst day of my little family’s life. It was the day our youngest daughter, our baby Robin, just nine months old, was diagnosed with a rare, infant form of acute lymphoblastic leukemia (ALL). It wasn’t supposed to happen to us. Cancer in children was just something that happened in those letters you get from St. Jude’s.
But it did happen. For the next two years we watched and supported Robin in the fight for her life.
Infant ALL is monster of a disease. Unlike the famous 80% survival rate for “pediatric cancer” that is bandied about, infant leukemias have a much less favorable prognosis — somewhere in the neighborhood of 40% overall survival. Because of this disheartening statistic, and the generally aggressive nature of the disease, all of the treatment protocols are also quite aggressive.
The practical side effect of this being that Robin spent almost four of her first nine months of treatment in the hospital, with roughly half of those in isolation. Isolation was also the theme outside the hospital, for all of us. When your kid has no immune system for months at a time, it’s nearly impossible to have any form of social life. Someone is always sick. Someone’s kid always has a runny nose. Much of the time we just didn’t have it in us.
To top it off, my wife Gayle and I kind of flipped the script when it came to caregiving. When our first daughter, Daphne, was born, we made the decision, based on practical, and personality reasons, that I would become a stay at home dad. Even though our situation was somewhat rare and led to a certain amount of social isolation, it worked out well for all involved.
When Robin was born, we didn’t think twice about the arrangement. It was simply the way we chose to live our life. What we failed to realize (because why in the hell would anyone think that way?) is just how isolating our lifestyle choice would be when coupled with a pediatric cancer diagnosis.
The pediatric cancer caregiver world, for all practical purposes, is a mom’s club. It’s not a club anyone willingly joins. It’s just a result of how society, at this point in time, seems to operate. It’s almost assumed we’ll all just fall into Ward and June Cleaver roles, with mom staying at home being the primary caregiver, and dad going to work to keep the house afloat. When you reverse those preconceived roles, many of the support structures that have been constructed to help people get through their kid’s treatment vanish.
Gayle faced the same struggles that working dads face — the pressure of supporting the family, the guilt of not being there. Along with that, she had to deal with the added stress of being a breastfeeding mom, heading to the hospital for the overnight shifts, or taking leave when Robin went on hunger strikes and would only nurse. She also found that she often didn’t fit in with the other mom groups (both in the hospital and online,) simply because their experiences were so divergent.
She didn’t know the minutiae of Robin’s treatment, wasn’t there for all the usual mom social times during the many inpatient days, and given that Robin, being a baby, went to bed early, and was often in isolation, she just plain didn’t get around enough to make too many friends. Couple that with the almost universal drifting away of pre-cancer friends, and it all added up to a very lonely time for her.
My experience was simultaneously very different and quite similar. Stay at home dads are a rare breed to begin with, and pediatric cancer stay at home dads are even more rare. So, like Gayle, I found the existing support structures didn’t really work for me. It’s not easy for dads to join in to mom’s clubs, whether inside or outside the hospital world.
I tried joining a few online support groups for primary caregivers,but between the numerous “Things only a cancer mom can know” posts and the “Men!” posts I never really felt like I belonged. In the hospital, I was asked time and again if I was giving my wife the day off. “Nope, I’ve been to all but two of her appointments.” Scheduling took months to figure out that they should call me not Gayle, even though I was listed as the primary contact person. I would chat with people in the halls or waiting rooms, but rarely get beyond the simple pleasantries.
We were coming at the childhood cancer world from a different place. So, I put my head down and went about the job of being the best caregiver my kid could ever have. No one, I’m quite certain, sets out to exclude anyone. It’s just people come from a certain place and when your world has come crashing down around you, you feel the need to connect with people with the most similar experiences. That usually wasn’t the random stay at home dad.
We stuck it out. What else were we gonna do? Lonely or marginalized, it didn’t matter, this wasn’t about us. It was about Robin. It was about doing everything in our power to not let cancer take another baby. On July 15, 2014, Robin finished treatment. She had her trials and tribulations, but never let cancer get the best of her. She’s our tough little bird. There’s a long road ahead of her before we can finally use that most wonderful of words…cured, but for now we move forward with hope, and cautious optimism.
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Filed under: Childhood Cancer Stories 2015