Emotions of a Momcologist
When Gavin was born on New Year's Eve 2009 at 33 weeks, nearly two full months before his due date, he weighed just under 4 lbs. We thought surely as he spent the first two weeks of his life in the NICU that those would be the hardest days we would ever have to endure as parents. At the time, nothing could be harder than leaving your brand new, firstborn in the NICU and going home each night to an empty crib that's supposed to be occupied. We were so very wrong. When Gavin was diagnosed with Acute Lymphoblastic Leukemia on Labor Day of 2012, it's almost as if the world stopped for several days. The magnitude of what had just hit us (Dave and I, as parents) and what was going to be coming ahead of us was impossible to comprehend, even after spending the first 8 days after diagnosis as an inpatient, hoping to let it all sink in. In this day in age of Facebook, and all the other social media out there, it was a time when we were inundated with photos of end of summer celebrations and first day of school photos. I found myself being almost disgusted with each and every post and picture that came across my newsfeed. How could people be so insensitive? Don't they know I'm laying here in a hospital bed with my 2 year old, who is now a cancer patient, as they're splashing their seemingly perfect lives all over the internet? A good friend who came to visit us that week even went as far as to post "Hugging baby boy extra hard tonight, so thankful he's healthy." It was by no means intended to be insensitive, but I interpreted it as a HUGE slap in the face, because I no longer had a healthy little boy. I took it as she was pouring salt into my already excruciatingly painful wound. It's as if I wanted the entire world to have stopped with ours, and I was upset that it, in fact, did not. The goal of the first 30 days of treatment for ALL is to get the child into remission. I'd say, in the majority of cases, it's a success. It was in Gavin's case. And even now, nearly two years later, still in remission,but still very much in active treatment, when people ask how he's doing and I start to update them, I almost always get "But he's in remission, though, right?" As if it's no longer a big deal anymore because he is, in fact in remission. What people don't know, what I didn't know before I became a "Momcologist" is that remission does not mean the cancer is gone. Remission means, at least for my son, that the cancer is still there, and if chemo treatments stopped today, his cancer would return in full force. It's hiding out deep in the tissues. It's not as powerful as it once was, but it only needs a month or two without treatment before it would come back harder and meaner than the first time. Here's another thing that I have learned with a child who has cancer - your child will NEVER get sick again without you getting that feeling in the pit of your stomach. No longer is it simply and inconvenience when you get a call from daycare that your child isn't feeling well and you have to leave work early to pick him up. No longer do you just give your child Tylenol and lay back down with him until he falls asleep when he wakes up with a fever in the middle of the night. No longer to you brush off "just a runny nose." Now, and until the end of time, it will ALWAYS be that feeling of dread when he gets sick. Has it returned? I wonder what his counts are exactly? I should check him for bruises....Have his lips been looking pale lately and I just didn't notice? Has he complained about his bones aching? And this feeling does not only pertain to your cancer child. If you have other children, which we do, you will always wonder if he's got cancer as well. The first time Gavin's baby brother got a fever after Gavin's diagnosis, it took all I had in me to not rush him to the pediatrician and demand she draw labs, just to check his blood counts. Not as much lately, but I had a pretty dark couple of months last year after Gavin had spent a couple weeks in the PICU with some life threatening issues. I was certain that Gavin would relapse. I envisioned where we would be when we got the news, what provider it would be to have to break the news to us, how long it would be before he would lose his hair again. I would would think about Owen being diagnosed, how old he would be, if he would handle treatment better than Gavin did. Not because I WANTED to think about it, but because I couldn't escape it. It consumed me. There are numerous articles out there about parents of cancer children having Post Traumatic Stress Syndrome. It is very real and very true. The thing about being a cancer parent is that it is always, and forever will be, in the back of your mind. I have accepted it. I've surrendered a spot in my mind for it to take up residence. Gavin is almost two years into his three year treatment plan for ALL. Right now, he is doing well. He is in daycare and he plays outside and he rides his bike. He's got a full head of hair, and if you passed him in the race car cart in the grocery store, you'd never know that he's been through more in his short 4 years here than my husband and I combined. Donna, thank you for taking the time to read this, and thank you for doing what you do to bring awareness to the world of childhood cancer and giving all of the littlefaces out there fighting it hope that someday the world will turn GOLD the same way the world today turns PINK every fall. I don't know if this is what you had in mind for a guest blog, I'm guessing not so much, but it's important to me for people to know some of the deepest, darkest things that take over your mind and soul once you become a cancer parent.
- Dayle lives in Wisconsin with her husband Dave and two boys, ages 4 and 2. She works full time and is dedicated to raising awareness for childhood cancer.
