What I think many people and providers forget is the impact that the diagnosis, treatment and procedures have on my little people. Em is 6 and D is 3. We do our best to prepare them ahead of time but ultimately any visual changes (my hair, the picc line, me being home instead of at work, surgery…) result in significant questions, thoughts and worries we are constantly fielding at home.
Often these questions come up before bedtime – one of the times of day that all parents I’m sure can attest is the lowest stress times of the day (…cue sarcasm).
We have been answering many questions during this time like:
*if the medicine is helping why are you sick
*when will your hair grow back? (Will it be blue?!)
*are you sick like Gus?
*does that take up all your blood? (PICC)
*I’ve got a good question – when can you go swimming with us again?
*I don’t want the vet to come, I don’t want you to die (D said this at bedtime in January)
*Why did you have to have surgery if you had medicine for the cancer?
D and Em both knew that the I was getting a PICC line and that meant that we would have to be careful not to touch it. We talked about chemo and how it was going to make me tired and feel a little yucky. They both know I needed to have surgery to “chop my boobs off” (thanks D LOL). Without trying to complicate things we are trying to keep the same words for the different procedures. There are so many other countless little and big situations that come up. Many questions the same over and over. Rob and I are doing our very best in this ‘new normal’ in trying to navigate being parents while struggling with how to explain complex medical treatments and procedures to the kids and their very different levels of comprehension in a way that makes sense. This is why any visible changes are really hard for me, not always for *me*, but to explain for the kids. Having some books to read has been really helpful, since if it is in a book then it can’t be that weird right? A couple of our favorites have been Cancer Party, No Where Hair, and Cancer Hates Kisses.
What have we done to include the kids to date?
For us it was important from the beginning, once we knew what we were dealing with, that the kids feel as confident and in control as they possibly could. This was challenging on many levels. First, D was still nursing at the time of my diagnosis, and since he wouldn’t be able to nurse during chemo we discontinued with the biopsies. We threw him a party with a cake “Bye Bye Boobies” because I thought it was funny and who doesn’t like cake? I’ll write about that whole experience another time.
When I knew that my plan included chemo I knew that I would be losing my hair (too bad the under arm and leg hair wouldn’t stay gone!), so we as a family chopped it all off into a cute short cut with the help of a good friend. This way it wasn’t a surprise to the kids that it was gone – they got to be there and help!
When my hair started coming out in chunks we decided it was time to shave it. The kids helped with this part too and they had an absolute blast. Seeing as we had talked a lot throughout the whole process that I would be losing my hair the kids weren’t surprised at all.
We’ve encouraged questions and answer their questions honestly. We find them playing games involving doctors, and even one they call “the PICC line game” where they use a leg warmer and pretend to have a PICC line. It is super cute.
Doing some henna on my head and one their hands was really wonderful – we did it ourselves (thanks COVID) for my last day of chemo and it was really wonderful for us to all “be the same” for a while.
For surgery I prepared Em and D that I would have scars that we would need to be careful with. When I felt ready to show them the incision scars (after the scabs had all fallen off) we “decorated” them so they wouldn’t seem so scary.
I would love to hear what ways others have taken control with their families! We are all doing our best to get through this with as few bumps and bruises as possible. Decrease the impact on the little people in our lives as best as we can!
Check out some of the pictures we’ve taken while taking control!