We have young kids – 6 and 9 (5 and 9 at the time of seizure, surgery, diagnosis, etc), so once we knew it was cancer and potentially bad, we debated long and hard about how much to tell the kids. There’s a fairly big gap in maturity between 5 and 9, so we had to think about what each child would be ready to hear and capable of understanding. Our kids are also very sensitive and worry – which seems a strange thing to say, but it’s true. Our son will leave the room if the music in a show (we’re talking PBS Kids or Disney here) changes and indicates suspense or emotion. He thinks Good Luck Charlie is scary. If you’ve never seen it, it’s not scary in the slightest. Our daughter has gotten less sensitive to peril in media as she’s gotten older, but she’s definitely a worrier. She’s a mini-me.
So, we were honest but limited on the details. They knew I had a tumor and was having brain surgery. They knew I was going to have to do treatment and we explained as best we could what chemo and radiation were. They witnessed my first seizure, so they received a brief lesson in seizures and what happens in the brain. Our neighbor found her children’s book on brains for them to look through. We explained as best as we could in terms they’d understand without over-sharing so that fear and worry prevent them being kids. We didn’t use the word ‘cancer’ outright because….well, what do YOU think of when you hear the word ‘cancer’? THAT’s why.
If you were in my situation, what would you tell your kids? I don’t know when the tumor will come back, maybe it won’t. If it comes back, maybe we can remove it or treat it. Maybe it won’t create new, worse symptoms or long term side effects, but maybe it will. Maybe I’ll be just another statistic in the world of a GBM4 patient, but maybe I’ll be legendary in my survival. But I’m not dying yet. So, what would you tell your 5 and 9 year old? Would you tell them that this cancer is aggressive and commonly terminal, but we just don’t know when? Would you give them information that makes them so anxious that they start doing poorly in school, act out in fear and confusion, or spend their nights waking up from terrible dreams?
But on the other hand, you want to be honest and open. You want them to be informed – to hear it from you rather than someone else. You want them to be prepared.
We bought books and read them. We made sure the kids knew they could ask any question they wanted and we would do our best to answer. We answer the questions asked and don’t add to it a bunch of additional information they may not be ready to hear. That said, we sometimes sense there’s more anxiety about something and have to dig a little to get the 9 year old to talk. We have to respond carefully when the 5 year old says, ‘Mommy, you’re not going to die for a long, long time.’ We have to watch how much we talk about things around them. We don’t want to keep things secret, but when your daughter says she’s worried because she forgot where she put something she’d had in her hands moments before, you realize you’ve probably been talking a little too much about your memory issues. We don’t want to overprotect, but we don’t want to cause unnecessary anxiety either. So, we haven’t talked about death with them. We hope we won’t have to, we hope every day for legendary.
For me, I want to prepare my kids for the day I do go. I want to know that they can cook, do some laundry, do some cleaning. I want to know that they’ll be open about how they feel – even if it’s hard to share the hurt – with their Dad and friends. I want to know that they’ll look after each other and their Dad. I want to know that they’ll ask neighbors and friends for help if they need it. I want to know that they’ll be loved, cared for, and nurtured; allowed to experience life and make mistakes knowing someone will be there to catch them as they grow into the amazing adults I know they’ll be.
I know that’s not so different from what any other parent wants for their children. But I have to think about that future today. I have to balance the realism with the optimism to make sure we’re ready, just in case.