Hi all – Today Sally turned 2 1/2, a major milestone in her battle against MLL ALL Leukemia. It’s also my 36th birthday and I’d like to think that gives me the carte blanche to write a post about something that has been irking me for some time now.
Yesterday on Facebook I saw several posts referencing actor Ashton Kutcher’s request for changing tables to be added to men’s restrooms. While watching the Super Bowl this year, I viewed commercials urging dads to be better fathers. I think these are both signs of a strong movement to encourage dads to be better parents and teammates with their spouses in raising their children. I couldn’t be more on board with these messages, and have seen an increase in dads playing a more active role in their children’s upbringing. That includes me, who took a couple years to really grasp the importance of my role as a father and become an active parent in my kids’ lives. That especially become true when my 10 month old daughter was diagnosed with cancer.
As a childhood cancer parent vet (we’ve been at this for 19 months, so I guess that makes us veterans) I have seen countless fathers rise to the challenge of being Cancer Dads. Whether that’s cleaning up vomit or stools, holding a vomit bucket while your child endlessly empties their insides, squeezing into a tiny bed with your child overnight in the hospital, or delivering countless meds through syringes and shots. I have been witness to ordinary dads becoming extraordinary, just as I have seen ordinary moms do the same.
However, judging by the articles and comments I see out there, you’d never know that many dads play an active role in their child’s cancer fight. From the numerous “Things Only Cancer Moms Know” articles (that have nothing mom specific listed) to the term “Momcologist”, the overwhelming majority of articles on cancer parents only focus on the mothers. Every time I see one, I always type a frustrated “…and dads…” or “…cancer parents…” in the comment section. We even see it on Sally’s and other childhood cancer patient Facebook pages, many comments are specifically directed at the mothers, not both parents. I can’t tell you how many private messages we receive directed only to Nicole, when I’m the one who reads most of them and handles the replies.
Mind you, in no way am I diminishing Cancer Moms, quite the contrary. The majority of the responsibility often falls to mothers. One of these past Cancer Mom articles actually brought up a valid point, moms create and carry our children for 10 months, so feel a sense of (unwarranted) responsibility for their children’s cancer that fathers cannot. Dads can’t breastfeed. Dads don’t give the same reassuring motherly snuggles. Moms have a special nurturing skill that has survived thousands of years of evolution. Frankly, most moms do it better.
However that does not, and should not, discount the roles that many Cancer Dads play. Every time I visit the hospital I see plenty of fathers and grandfathers, many of whom are my friends. Through social media I have become friendly with Cancer Dads all over the country, the only other guys who can relate to how I feel and vice versa. We are often relegated to supporting roles not by choice, but by need. Half the families who battle childhood cancer end up filing for bankruptcy. In most cases its the father who has no choice but to keep his full-time job to maintain the funds needed for living expenses and hospital bills, as well as the guerrilla in the room – healthcare insurance. I’ll tell you firsthand (and from the knowledge of speaking with other Cancer Dads) that coming to the office every day and not being there for your your child who is fighting a life-threatening disease is incredibly frustrating and leaves us feeling useless.
First off, none of us is at our best through this journey. Even at work, there is no magical ‘off switch’ to shut off the immense stress and worry that we feel about our family. It’s hard to focus, anybody that has worked through an 8-hour workday with a hangover can somewhat relate. Imagine working with a hangover every day (unless you’re a bartender where its expected of course) for months or years. Or try showing up at work for a busy day of meetings after a night where you rushed your child to the hospital with a seizure lasting 45 minutes that landed her in the PICU. You come to work with the added stress knowing that you’re unintentionally not performing to your potential, which comes with a lot of guilt. I know parents who have not been able to maintain their jobs as a result of the stress and exhaustion.
Secondly, we’re dads. We’re supposed to be the tough ones that rush to the rescue of our kids. Especially those of us with little girls, we idolize ourselves as their protectors. Instead, while mom is at the hospital working with the doctors and nurses on saving our child’s life, we’re often restricted to our desks, doing our best to keep our jobs, feeling helpless and listening to meaningless office gossip. I hear all updates second-hand from Nicole, and rarely get to ask questions directly to the doctors. I keep a log of all of Sally’s treatment and blood counts so I feel involved. Nicole grows frustrated when I don’t recall something she’s relayed to me, but it’s harder to grasp everything when you’re hearing it all in one conversation instead of living it day in and day out. Or understanding how a certain medicine works in the grand scheme of things and remembering specific doses. It creates a tension that likely wouldn’t be as strong if we were both at the hospital daily.
Finally, with Mom focusing more on our child in need, Dads often shoulder more of the responsibility at home, especially with siblings. While Nicole would rush off to the hospital with Sally in the middle of the night (which was often in our first year), the duty of informing our sons fell to me. There’s nothing quite like breaking the news to your 7 and 4 year olds that their little sister had to be rushed into the hospital again and somebody not named Mom or Dad would be picking them up from school the rest of the week. Or answering all of the questions they have, like is their sister going to die? Or explaining what a seizure is. There’s also the added day-to-day roles that dad often picks up so Mom can get some much needed sleep or is stuck at the hospital.
Childhood Cancer leads to an increased divorce rate among parents. Due to the incredible stress, mood swings and increased responsibilities, it’s vital that parents work together as a team both to save their child’s life and maintain their relationship. We know parents who have split up during and after treatment, and know moms who are going this alone. Our hearts go out to them, we admire their strength and can’t fathom the challenges they must overcome. I’ll never forget when our first PICU nurse told us in the early days, “We’ve seen marriages fail, and often the kids that don’t make it are from families who stopped living life and parents who didn’t remain strong.”
I echo fellow Cancer Dad Jeff Hendrix of ‘Praying for Carolyn‘ in calling on dads and men to play a more active role both in their families and in the Childhood Cancer community. It shouldn’t take cancer to inspire dads to become more active parents, anyone can and should do it. I also want to call attention to the incredible Cancer Dads I’ve met through our journey, some of whom I have sadly witnessed eulogize their children in recent weeks. If there’s any validity to the term “Act like a man”, it’s these dads who have risen to the ultimate challenge and worked as a team with their spouses to fight this evil monster. If you know one, or are married to one, be sure to tell them they’re doing a good job, even if what they’re doing isn’t always seen.
Not Cancer Moms. Not Cancer Dads.
Proud Cancer Dad to a beautiful 2 1/2 year old girl battling Infant Leukemia