Talking to our kids about cancer

In my last blog, I wrote about the amazing experience I had recently speaking at my local Leukemia & Lymphoma Society’s (LLS) Light the Night walk, as an Honored Hero. We had never attended this event in the past so we didn’t know what to expect. Based on what I had read and heard, I imagined it would be emotional – and it was. As much as I would like to think that my speech was the highlight of the event, the reality is the true heroes are the survivors, those who are currently in remission from or living with blood cancers. The walk is truly about honoring  ALL those affected – survivors and their families, as well as those who sadly have lost their battle. During the walk, participants carry lanterns – a white lantern if you are a survivor, a red lantern if you are a loved one of a survivor and a gold lantern if you are walking in remembrance of someone we have lost.

Being part of the survivor ceremony was quite moving. To be part of a community of people who have been living with – or have beaten – cancer for anywhere from one year to 71 years (amazing, right??) was incredible.  To witness the In Remembrance ceremony was difficult – there were far, far too many names called and gold lanterns held up high. After the ceremonies were completed, our family started to walk.  As the three colors of lanterns sparkled in the dark of the night, our 6-year-old daughter held my hand and looked up at me.  She said “Mommy, do you know what my news will be on Monday at school?  I am going to say how happy I am that I didn’t have to carry a gold lantern”.

Um, WOW.  Tears immediately began to stream down my face. She is SIX. She was only four when this all started. I have always believed that she was the most unaffected by my diagnosis.  She was so young at the time and has always lived in her own little, tutu-loving world.

When I first got sick, I went to the Emergency Room and didn’t come back for two weeks. As such, we HAD to explain something to our children when I returned home.  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, 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.  I was released from the hospital on Halloween – much to my children’s delight – and we decided to let them enjoy that one last night before we told them.

The next day, my husband and I sat them down at our kitchen table, knowing we were going to change their lives forever.  We explained to them that, when I went into the hospital, the doctors discovered that I had pneumonia, but also something called cancer. Our son – seven years old at the time – gasped.  “Mommy”, he said “that’s what Aunt Jayne had!” (Aunt Jayne was our dear, dear friend who, just weeks earlier, had lost her 9-month battle to pancreatic cancer).  We explained to them 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 ass (my father-in-law, the grandparents of many friends, several neighbors, and the list goes on and on…).

I often think about my husband coming to my hospital room and having the unthinkable job of telling me that I had cancer.  I’ll never forget that moment, because it changed everything for me. But I’m an adult and I am old enough to process the information, 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, 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.

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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 now 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 some lessons we learned along the way…

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.

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 is 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.

Make sure your kids understand this is NOT 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% NOT because of anything they did or didn’t do.

Don’t underestimate how much time it will take 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.  Or perhaps they were distracted by the huge bowl of Halloween candy they had amassed the night before.  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, different 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 – fatigue, low platelet counts, stomach issues – which makes them think that I am 100% better.  If or when something changes, we will decide at that point how to address with them.

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 “zero” (aka negative M-spike)?  Bring on the dance party!  And now my Stringent Complete Response (essentially meaning cancer can NOT be found in my body) is something we celebrated through our participation in the Light the Night Walk, with nearly 100 friends and family by our side.

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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, from the ashes have risen some things I never would have expected.

In this post-cancer world, I would like to think that my kids are more empathetic and understanding.  Days when I’ve been stuck in bed sick, our kids argue about who is going to be “my legs” when I can’t go downstairs myself.  As we prepared for the Light the Night Walk, my children ran a lemonade stand to raise money for LLS and helped build the lanterns for the walk.  They offered allowance money, originally earmarked for things like Nerf guns and Pokemon cards, to help our team reach its fundraising goal.  There are also days it’s not all sunshine and roses. When the kids bemoaned a canceled vacation, cried because I couldn’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 that they need reassurance, a hug and maybe some extra snuggles to feel safe from this intruder.

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This is why I fight EVERY. SINGLE. DAY. For my family.  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.

Until next time…#gameon

I am obviously not an expert or psychologist – this is all based on my own personal experiences.  For more great information about how to help children deal when a family member has cancer, visit this website or talk to a professional. 

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