Parent to Parent Blog Entries

  1. What I’d Tell A Parent Whose Child Has Been Diagnosed With Cancer.

    Your role is to be your child’s voice.

    by Les Friedman, Mikey’s Dad

    When your child is diagnosed with cancer, you have to be his/her advocate. As a parent, your insight and intimate knowledge of your child are what make you the best possible advocate for him/her. Your role is to be your child’s voice.

    There’s a certain number of children on the floor when your child’s in the hospital. Every child has needs and it’s not always easy to get what your child needs when your child needs it. I learned quickly that being a “squeaky wheel” is what got results. I asked, I nagged, I pushed –  I did whatever it took to get what Mikey needed when he needed it.

    Check medications, check the fluids in the IV bags when they are hung, check injections before they are given. Trust your own instincts. It’s not an insult to inquire, it’s watching out for your child. During Mikey’s treatment I checked every IV bag as it was hung.  Twice I caught them hanging the wrong fluids. I checked everything, every time, all the time.

    Ask questions. Don’t ever be afraid to ask questions. It’s ok to ask clinicians what they are doing and why. Don’t be afraid to inquire what can be expected from a particular procedure, what side effects there may be or what will happen after your child leaves the hospital. You know your child better than anyone – if something doesn’t seem right, say something, even it if frays some nerves temporarily. Sometimes I challenged doctors and nurses about decisions being made or medications being given. Sometimes that meant a feather or two was ruffled, and that was ok.

    Advocating for your child can often feel like a full-time job. You challenge, negotiate and petition on your child’s behalf – but you’re the parent/caregiver too.  I was Mikey’s advocate but I was also his Dad, and he needed my love and support and comfort just as much as he needed me to be his voice.

     

  2. What I Learned From My Child’s Battle With Cancer

    When your child’s life is on the line everything else pales in comparison.

    by Les Friedman, Mikey’s Dad

    When Mikey was diagnosed with cancer, our world as we knew it stopped. Life became doctor appointments, the side effects of chemo, and the ever-looming possibility of an unexpected hospital admission. Meanwhile, regular life also marched on and what we considered normal became something else entirely.

    I learned a lot of lessons from fathering through Mikey’s cancer. What’s important and what is not became crystal clear to me and most significantly I learned to live one day at a time.

    I can’t stress enough that when you’re in the middle of it all; the treatment, the doctors, the hospital visits, it’s hard not to think about next week, next month, next year. I remember sitting in the movie theatre watching the movie trailer. When it ended I thought to myself, “Will Mikey be alive to see this movie?” I was tomorrow focused which was allowing all the negative thoughts of what may or may not happen to cloud my thinking. So, I stopped thinking about the tomorrows. Instead, I focused on the day that we were in. Doing this made life better, I could think more clearly.  I could better deal with the day’s problems. I was able to direct my energy to something more productive. I lived the moment, every moment. This not only helped me to focus on getting through the day one moment at a time, but it also helped me to enjoy the good moments. If Mikey had a good day, I could appreciate it for what the day was.

    My advice?  Savor the good days, dream for better tomorrows, but always live the day you are in moment to moment.