What We Told Our Four Year Old

Today was another smooth day.  I got a new IV line easily in my left arm that should last through tomorrow at least.  Some of the unexplained but familiar minor symptoms have reappeared but I'm sure they'll disappear as before.

My daughter asked some interesting questions this morning.

When I was first diagnosed, there was much debate as to what we should tell her (she's four years old.  Our two year old is at an age where he is very much in his own world, so we were less concerned about him.)

We consulted with a number of experts, friends and parents.  We also looked for books on the subject.

Here are a few things we heard and learned that made sense to us:

• Avoid telling her that I was "sick".  The thinking is that if we used that term, then the next time she got a cold, flu or otherwise sick herself, she might be confused into thinking that she might have some of the same symptoms or treatments.
• Not to be afraid to call in cancer.  Although in adults cancer has a very negative connotation, in children no such preconceptions exist.
• In my case, since the most likely outcome is a full recovery, lots and lots of encouragement that everything will be OK, even though it might take a long time.  We just make sure we repeatedly remind her that soon life will be back to normal.
• Allow her lots of processing time, and to be ready for questions and seemingly odd times.
• Let the people she spends time with know that these changes are occurring (babysitters, teachers, relatives, etc.) so they can be ready to answer questions in a manner consistent with our parental decisions, and/or to report changes in behavior so they can be addressed.
• Finally, cancer is not contagious and will not spread.

We ultimately decided to avoid the term cancer.  We felt that she might hear about or otherwise encounter someone else with cancer, and as we've learned no cancer case is like another, we wanted to differentiate my situation.

Instead, wanting to avoid the generic 'sick' as mentioned, we decided to talk about the tumor.  So right after my biopsy, I showed her the tiny scab from it, and discussed with her the existence of the tumor, telling her that some of my cells had gotten confused and had started to grow into a lump that, if untreated, could start to cause problems.

We told her that I would need medicine that would make me tired, and loose my hair, but that they would also break apart the tumor and that would make me better in the long run.

On the issue of my hair, at the time we didn't know that it would take a while for this to happen.  In retrospect it would have better to tell her only about the immediate changes, because her sense of time passing is still immature.  When it finally happened she wasn't totally surprised, but I feel it would have been better if we waited to discuss that side effect until it started.

The last thing we told her was that I wouldn't be going to the office for a while, and this actually left her excited about that prospect.

Within a few days of that discussion we identified some books.  Unfortunately for my particular case but understandably based on the numbers, we found many more books addressing cancer in the mother.  I believe that this is because there are many more cases of breast cancer in mothers of child raising age, so there is a greater need and demand for these books.

We finally did find one book regarding cancer for dads, and another 'old but good' resource from the 70s!

They are:

• How We are Born, How We Grow, How Our Bodies Work, and How We Learn. This is a book from my childhood that I remembered immediately once I was discussing my white and red blood counts with my doctor. I distinctly remembered some of the illustrations from this book from over 20 years ago. Fortunately my mother kept her copy and I found it immediately at her house.  Since that initial discussion our daughter has starting asking a lot of questions about the body, so I knew it would be a useful resource.  Although it was written for older children, some key illustrations helped us answer her questions.
• The first book we found about dad having cancer was given to us by the social worker who visits the oncology office on Mondays.  I can't find it anywhere in the house to give you the title, but I guess the point is that these dad books exist, and it worth seeking them out if your situation is similar.  Per our earlier decision we just substitute 'tumor' for 'cancer' when we read it to our daughter.