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 Angela Cruikshank
My son, Oscar, is a two-time Wilm’s Tumour survivor. He was just three years old when he was first diagnosed in April 2011 after complaining of a tummy ache. He had asked his grandfather to rub his tummy and that’s when my Dad felt a lump on his right side.
An x-ray showed a mass in his abdomen and an ultrasound confirmed that he had a large tumour on his right kidney; further tests revealed that it was stage 4, the cancer had already spread to his lymph nodes and lungs. Not what any parent expects from a ‘tummy ache.’
Having a child diagnosed with cancer is not something I would wish on my worst enemy. It is torture to watch a child suffer and it is torture to feel intense fear on a daily basis. I had already had a bad year prior to my son’s diagnosis: my marriage had ended, I had lost my business and gone bankrupt, and one of my cats had died. It’s safe to say that I was already in a rough state of mind.
I think most parents in this situation suffer from depression, anxiety, insomnia, and/or post traumatic stress disorder (PTSD). We watch our kids fight for their lives every day for months, years in many cases. We have had to hold them down for needles and other unpleasant procedures, we have held puke buckets for them, we have woken them up every two hours at night to pee during certain types of chemo, we have snuggled up to them in hospital beds to help them sleep. Every day brings challenges, but every minute is precious because we don’t know if our children will survive.
My son’s first treatment involved surgery to remove the tumour and his kidney, fourteen sessions of radiation, and ten rounds of chemo which led him to remission. Great, right? Yes and no. Instead of feeling relief, joy, and happiness, from an emotional and mental standpoint, I felt worse than ever. I was anxious, nervous, scared and it took one intense 5-7 second nightmare to realize that I needed help.
The nightmare was very simple, I was standing at the back door of my house looking outside and suddenly an invisible arm grabbed me and pulled me outside…it still gives me chills when I think about it. That arm was cancer and I was terrified that it was going to pull us back into hell. I could not stop crying and called a counsellor to make an appointment – best decision ever! He helped me understand that what I was experiencing was normal under the circumstances, that it was a symptom of post-traumatic stress disorder and that most importantly, it did not have to last forever.
Sadly, my nightmare came true and Oscar’s cancer came back after only three months of remission. It was pretty devastating. Another eight months of more chemotherapy, surgery to remove the upper lobe of his right lung, and a stem-cell transplant. Another eight months of watching my child struggle to live.
Part of the challenge of dealing with the mental health issues was that I felt incapable of feeling hopeful. How could I trust that this ordeal would ever end? I felt stupid even entertaining the thought that things would ever return to normal. Hopelessness is a powerful state, it is an extension of fear and not very useful. It’s important to note that my son never doubted he would beat cancer again, his positive attitude inspired all of us every single day.
Thankfully, he was right!
He went into remission again and we got another chance at normal life. Yay us! The big “however” was that my mental health challenges continued…I started getting vertigo-like attacks that would hit me if I was faced with any highly stressful (usually money-related) situations. I’d get the head spins for hours, often crying and spinning until someone could come over to talk me through it, hug me lots and calm me down. I firmly believe that one should only experience head spins as a result of too much drinking – waking up sober to a spinning room is cruel and unusual punishment! All joking aside, I owe my friends and family for getting me through those difficult hours.
The person who comforts me the most, though, is Oscar. Since his remission, anytime Oscar has complained to me of discomfort in his abdomen, for a few horrifying moments I have gone to that really scary place: the place where my world falls apart, the place where my son has to fight cancer again. I know he feels my stress and anxiety when I start asking him too many questions, “Does it hurt when you press on it? How long have you felt this way? Do you think I should take you to the doctor?”
On those occasions, he always says, “Mom, don’t worry! It’s not cancer!” Out of the mouths of babes!
He has now been cancer-free for two and a half years and I am finally starting to feel hopeful again and beginning to believe that it is gone for good. I will always be concerned about Oscar’s health and grateful that he will be monitored for cancer and other long term side effects for the rest of his life, but I no longer feel debilitating fear every day. That is a beautiful thing.
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Mary Tyler Mom 