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.