Being a parent is hard enough, never mind having to juggle parenting with breast cancer. Our chat on 4/13/15 will cover some of the challenges. Lori Marx-Rubiner and Heidi Floyd share their thoughts here. Please add to the conversation, here and during the chat!

T1: How did you explain your cancer diagnosis to you kid(s)? How did you explain your therapy?
T2: What were your children’s fears? Did they vocalize those fears to you or others?
T3: What does looking toward the future mean? How does that work for you?
T4: What is your most memorable event regarding your cancer and your children
T5: What’s the single most important piece of advice you would offer a mother diagnosed today?

Parenting in the Face of Death
Lori Marx-Rubiner

I am the proud and blessed mother of a teenage boy. Despite his a hormone-enriched, rule-bending, self-emancipating teenager-ness, I treasure every moment, because I never thought I’d get here….

This whole cancer thing started when he was three, and moments of his childhood are etched in my head in the most difficult of ways.

    –  At 3: We were on the playground at school. I was picking him up from preschool when one of the other moms came up to talk. She asked how I was feeling, where I was being treated, who my doctor was. Distractedly, I answered her questions. “Oh, my mom saw Dr. R. She died three years ago.” Seriously?? Yes, my son was within earshot.
    –  At 5: Bedtime was sacred. Books, songs, snuggles, and whispers in the darkness. “You should have a baby,” he says. We’ve been here before, again and again and again. He wants a sibling as deeply as I am terrified to give him one. “I can’t, Sweetheart,” I whisper, already half asleep. “The doctors worry my cancer might come back.” The silence descended for a moment, and was broken with, “I caused your cancer!”
    –  At 11: John’s client gifted us an incredible three-night stay at an uber-luxurious resort and we booked it for Thanksgiving Day weekend. Tensions were running high, but we had agreed not to tell Zach that my tumor marker had risen unexpectedly. We didn’t actually know Until Thursday morning when John & I had to move our argument to the balcony, where we thought Zach couldn’t hear. We were wrong – he heard everything, and grilled me about what was going on. “I don’t know” is never really a helpful answer….
    –  At 13: The whole week tensions were running high. I was quiet – remarkably unusual for me, but I was afraid to open my mouth for fear the truth would spill out. Friday afternoon rolled around and Zach’s sprits were weekend high. By the time John came home, I felt like a pressure cooker on the verge of explosion. We all crossed paths in the living room, and I dropped to the floor. “Zach, we have to talk…we just found out my cancer spread.”

Parenting my way through cancer has been equal parts blessing and challenge, as it is for all parents. But raising a child under the shadow of an unpredictable and fatal disease isn’t what any mother dreams us during the halcyon days of pregnancy and sleep-deprived nights of infancy, yet stepping up to challenges is what every mother does.

So the question becomes, for me, how do I help him look ahead with optimism and prepare him for possible loss, ground him equally in reality and possibility?

We confront the issue of how to share and guide our children through life again and again. Explaining cancer, balding, fatigue, crankiness, and neutropenia to a three-year-old is not simple; finding words that describe what cancer is, what will happen, and how it impacts a young child is very difficult. But at three there was a lot he didn’t even know to ask since he didn’t see cancer as a fatal disease. At 16 he does. And now that I have mets, he is growing up in a world where the base assumption is that I will die too soon. That’s a LOT of weight for a child. What do I do?

–  I answer what is asked. I do so clearly, openly, fully – but I only answer what is asked.
–  I watch his Internet use. Kids will find answers to their questions however they can, and can’t necessarily distinguish between good and bad info.
–  I provide basic updates after each appointment, and invite questions, especially when treatments change.
–  I remind him (constantly) that I love him and he can talk to me about anything.

Ultimately it is this: I acknowledge that I’m dying – and that we ALL are. I help him see my illness in the broad and beautiful context of None of us knows that tomorrow will bring, but living in a space that reminds us of our mortality can, if we choose, make life richer. I help my son, and my family, live in the glow of precious moments.

“Mommy Has Cancer (and other tough things I’ve had to say to my children)”
Heidi Floyd

My sweet Alex was in 6th grade when I picked her up from school that day.  I’d just learned, on a phone call in my office downtown Chicago, that I had breast cancer.  Now I had to look into her beautiful face and tell her, somehow.  Explain cancer to a child.

All she knew of cancer was what I’d inadvertently taught her:  Cancer took away many of the people we loved and that loved us. We did the Walk & Roll event downtown since she was born (before, actually). We used to pin the ‘walking in memory of Grandma Roberta’ tag on her stroller when she was too small to actively participate. Licked yogurt lids, bought endless amounts of pink ribbon merchandise, joined in where/whenever possible just to help ‘the cause’…without knowing exactly where all those dollars were going.  We didn’t care, we just wanted to do something.

And now here we were.  She was 9 years old and terrified.  “Your mama died, and so did everyone else. I don’t want you to die yet! Not until I’m really really old…like at least 30!” At the time of my first diagnosis, it was as if I were on a planet alone; there were scant few resources to help young women going through breast cancer.  A young mom?  Even fewer resources – we were on our own.

I found gentle ways to explain that chemotherapy, while hard to take and yes toxic, is also hard for the cancer to take.  I talked her through what the surgery might be like (in round, simple terms – nothing graphic).  That the recovery would be tricky, but yes, she could hop in bed with me.  Hug me. Snuggle with me. The research we did was an amazing education for both her and myself, and to this day has provided a good foundation for understanding what it means to be proactive with health care.

Her little sisters were another story entirely.  Catie was 3, Bella was 2.  Bella laughed when she saw my bald head, and that was the end of her curiosity.  Catie, always the fashionista even as a toddler, requested that I always wear a scarf or ‘fake hair’.  There was a great debate about why on EARTH I would opt for a wig that looked so much like my other hair.  Couldn’t you just try the purple and silver wig, mommy?  Just for a little while?

And then there was Noah. Pregnant with him for my first diagnosis, he went through all the chemotherapy with me.  The surgeries and radiation that followed his birth became just as much his story as it was my own.  5 years later, with a new tumor, I had to explain the situation to a little man who assumed (like the rest of us) that cancer was something in our past.

Through it all, I relied on my faith, my family and a growing network of breast cancer sisters.  I now know where to direct newly diagnosed mommies and daddies when they need a book to help explain what chemotherapy is (NoWhere Hair), when they need to find an app explaining how to do self exams (Get In Touch), when new scarves are needed for bald heads (HopeScarves), when they need someone to help watch the kiddos (My Little Waiting Room and Nanny Angel Network), when bills need to be paid (Pink Fund) and vacations seem impossible (Little Pink and Camp Kesem). And of course, an amazing online resource of strength and compassion (#BCSM)

There is help – you don’t have to walk this journey alone.  Reach out to us. Allow us to help lift you and your kiddos.

4/13/15 Tweet Chat Transcript

Lori Marx-Rubiner is a breast cancer advocate and metastatic breast cancer patient. She is currently serving as president of METAvivor, is an avid blogger, live-tweets many breast cancer conferences, serves on scientific peer review and is working on a memoir. She lives in Los Angeles with her husband John and son Zachary.

Heidi Floyd is an author, cancer patient, speaker,blogger, advocate, wife and mom – not always in that order. Her work and passion is to provide assistance and compassion to families on a cancer journey, until the disease is eradicated. Find her on twitter @FollowHeidi.