5 Lessons We Learned After We Told Our Kids About My Cancer Diagnosis
Two years ago, my husband and three kids dropped me off at the emergency room with an eye infection — and I didn’t come back for two weeks. During that time, a lot happened to me, not the least of which was getting a diagnosis of multiple myeloma, a cancer of the blood.
For kids who were 7, 6 and 4, it’s hard to understand when Mommy disappears without warning. When something like this happens, you have to provide an explanation to your children.
I was still very weak and the kids had to be patient with me as I recovered. My husband and I had many discussions — between the two of us, with the school counselor and friends who had been in similar situations — about how to handle what would be happening to me and to all of us. While I respect the decision of all families to handle their situation as they choose (there is no wrong way to do this), for us honesty was, in fact, the best policy.
My husband and I sat them down, knowing we were going to change their lives forever. We explained to them that when I went into the hospital, the doctors discovered I had pneumonia but also something called cancer. Our son — 7 years old at the time — gasped, having first heard the word “cancer” after we had lost a dear family friend to pancreatic cancer just weeks earlier. We explained that many people get cancer and have very different outcomes. We proceeded to list the (too many) friends and family members who had successfully kicked cancer’s *ss: my father-in-law, the grandparents of many friends, several neighbors and the list goes on and on.
I’m an adult and am old enough to process my diagnosis, even if I’ll never, ever actually understand why cancer even exists. But they are children — how can they possibly be expected to comprehend what this all meant, for me, for them and for our family? Before our friend died, their limited knowledge of cancer had been my son “braving the shave” every year for St. Baldrick’s.
We were involved but had kept cancer at an arm’s length.
Cancer may just be a six-letter word, but it’s scary as hell to grown-ups, let alone to children. And as a parent, your job is to protect your children from things that are frightening — not to bring those big scary monsters into your home and lives. I realize that, with those words, I changed my children forever. I had always felt an enormous amount of “mom guilt” before, but this takes it to a whole new level of guilt. I did this to them. Before I had been “just” a wife, mom, daughter/daughter-in-law, sister, friend — and suddenly I had to add cancer patient to the list. And now, because of me, they too had a new label: “the kids whose mom has cancer.” While me having cancer isn’t my fault, it was still because of me that all of this was happening.
They knew something was going on, and, in absence of some information, children can assume the worst. So, as much as I resented that this was news that we had to share, telling our kids was the right decision — the only decision — for us.
Here are five lessons we learned along the way:
1. Know what your children are capable of understanding.
Every child is different — not just their ages, but what they can handle, so let that be your guide. Our children were 7, 6 and 4 at the time, so we limited ourselves to bite-sized chunks of information that wouldn’t overwhelm them. We kept it very high-level — Mommy is sick and the doctors will be giving me medicine to make me better. We chose to use the word “cancer,” as scary as it is, because we didn’t want to hear it from someone else. Again, this is a personal choice.
2. Realize that it’s really, really hard to keep this kind of secret.
Aside from being really weak when I came home, I also began treatment immediately. I left work and was home for six months, as I underwent chemotherapy and eventually a stem cell transplant. My treatment also left me fatigued and ultimately with no hair. That certainly would have been pretty hard to explain away!
Additionally, a big concern for those with my particular type of cancer (multiple myeloma) is our sucky immune systems. It’s important that our entire family understand how critical it is that we be hyper-vigilant about washing our hands and watching out for germs. When I get sick, it can escalate to full-blown pneumonia pretty
quickly, and our kids needed to understand that, too. Not only because of that obsessive need to wash our hands, but also because it means I may have to miss out on some things because I am sick — or because I am trying to prevent getting sick.
3. Make sure your kids understand this isn’t their fault.
I never really thought much about this when I first got sick. But in talking to counselors, they emphasized how important this was. You don’t want children to think that your
illness has anything to do with them. Perhaps they were misbehaving in the days leading up to your diagnosis and think that maybe, just maybe, they were being punished for that by your illness. We emphasized to our children there was no way to explain why I got sick, but that it was absolutely, 100 percent not because of anything they did or didn’t do.
4. Don’t underestimate how much time it will take for your children to process the news.
When we first told our kids, they didn’t really have many questions. It might have been that they were just happy to have me home. More than likely, it was a lot for them to handle and they needed time to process. As the days and weeks passed, questions and concerns came to the surface in different ways from each child.
My son, our oldest, has always had the toughest questions for me, usually ones that make me feel like I’ve been sucker-punched. This is the kid who asked me, “Mommy, will you have cancer for the rest of your life?” Considering my cancer is currently considered incurable, I had to explain to him that the medicine will keep it away for as long as possible. He also asked me a question that still brings tears to my eyes: “Do more people live with the cancer you have, Mommy, or die?” I explained that usually people who get my type of cancer are much older than me and aren’t as healthy, which means I should be different than most of them.
We always choose to answer their questions directly and with as much honesty as we can (and is appropriate). We tell them that I have really great doctors who are giving me really great medicine, and I have every reason to believe I’ll be around for a long time.
Now that my hair has (mostly) grown back, I look like Mommy again to my kids. I can conceal from them the other side effects that my treatment has on me — constant fatigue, low platelet counts, stomach issues — which makes them think that I am 100 percent better. If or when something changes, we will decide at that point how to address with them.
5. Celebrate the victories — together.
Each time I get positive test results, I share that news with the kids. They need to hear good news, not just bad news. That first Thanksgiving, when my numbers were back in
normal range, we all cheered (and there were some tears, too). My first negative bone marrow biopsy? Bring on the dance party! We celebrate each day we have together as we now realize what a gift each day is.
Our new normal now includes me living with cancer. And when someone in a family has cancer, the harsh reality is that the entire family is changed. There is no way to escape the effects it has on everyone; there is no hiding. And in so many ways, this new normal really stinks.
However, some things have risen from the ashes that I never would have expected.
In this post-cancer world, I would like to think that my kids are more empathetic and understanding. But there are also days it’s not all sunshine and roses when the kids
bemoan a canceled vacation, cry because I can’t go to a soccer game or were devastated that Thanksgiving got canceled last year because I had pneumonia — again. My son has nights he can’t sleep, and I wonder how much of this weighs on him that we don’t even know.
Sometimes, seemingly out of nowhere, a question or concern will rise to the surface. In those moments, I realize they need reassurance, a hug and maybe some extra snuggles to feel safe from this intruder.
Even though cancer invaded our lives, uninvited, it shouldn’t – won’t – completely define us. This will not be their story. Our children may have a familiarity with cancer now that I would never have imagined, but they are still just kids. Kids who need their mom around for a long, long time.
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