What Cancer Looks Like: Talking to Our Kids About Their Aunt’s Cancer
We were on a Mother’s Day road trip with our three sons when we got the call. It was my husband’s sister Laura. Todd tried to calm her down, tried to reassure her, tried to convince her that everything was okay. Everything was not okay.
That day four years ago, Laura was diagnosed with Acute Lymphoblastic Leukemia. She was only 32 years old. During her four-year battle, she has been in an induced coma from sepsis; suffered retinal damage; received hundreds of chemo treatments; lost her hair; received retinal injections; suffered bone damage from steroid treatments; lost 50 pounds; and undergone a double knee replacement. She beat cancer.
But that was just the first time.
The cancer came back last November. Since then, she’s received radiation treatments and intensified chemo treatments. She lost her hair again (shaving it this time in anticipation). She lost even more weight. She lost fingernails and toenails. She shed tissue from her esophagus and received a bone marrow transplant. She’s spent months in the hospital, and even more months isolated from the world because her immune system was so weak. Ten months later, she has beaten cancer once again. We’re praying it stays away this time.
That’s the short version of a long story, at least medically speaking. It doesn’t even begin to cover the heartbreaking weight of the suffering Laura has endured, or the anxiety her family has felt watching her struggle for her life. It’s especially complicated to explain to my three little boys. Those kids adore their aunt and know her as a vivacious, energetic sort of Pied Piper.
Navigating the subject of cancer with kids is a delicate thing, and I’m not claiming to be an expert. My oldest was 6 years old when his aunt was diagnosed, and he was already dealing with anxiety about death. His great-grandparents had recently both passed away within months of each other, and every night, he’d been crying about the inevitability of his own death, as well as ours. With that in mind, my husband and I at first gently tiptoed around his aunt’s illness.
Laura lives in Vermont, and we live in Virginia, so through the very worst of it, Sam didn’t have to see her suffering. During her 4 months of hospitalization, we told all of our sons (including 3-year-old twins Zach and Drew) that Aunt Laura was sick and that she had to stay in the hospital for a while. The doctors were working very hard to get her better. To help, we could all pray for her every night before bed, and we could draw her pictures to decorate her hospital room. We could email her pictures, call her and tell her how much we love her. Even though we couldn’t be with her, we could wear the rubber bracelets my husband ordered to show our support. They were stamped with the words “Team Laura” on one side, “Don’t Stop Believing” on the other.
After months and months of sending our love from a distance, we drove as a family to Vermont to visit Laura for the first time, on the very day she was released. We had already prepared the kids by telling them that the strong medicine she was taking to get better had the side effect of making her lose her hair and a lot of weight. We told them she wouldn’t look at all the same, that maybe they wouldn’t even recognize her, but that as much as she seemed different on the outside, she was the same awesome aunt on the inside.
That was their first time seeing what cancer looks like. Though they were timid at first and apprehensive about getting close to her (almost like they would “break” her), it wasn’t long before they were treating her as lovingly and jokingly as they always had. For Laura’s part, it was like a salve to her bruised, but not broken, spirit to be surrounded by her boisterous nephews.
Through Laura’s subsequent two years of outpatient care and many medical ups and downs, we told the kids more and more about the details we thought appropriate for their age. We introduced them to words like “chemotherapy,” the strong medicine that kills the cancer cells. As a family, we joined Laura for a fundraiser walk benefiting the Leukemia & Lymphoma Society, the Light the Night Walk, and we explained that Aunt Laura was limping and hobbling around because medicines called “steroids” had caused her bones to break down. The kids learned that joints could actually be replaced, reinforced and made stronger, but that the process was a painful one.
Though some of these ideas and images were scary, we encouraged the kids to ask questions and talk to us about their feelings. They never expressed fear for Aunt Laura’s life. If they weren’t afraid, that was okay with us. The adults were scared enough for all of us.
After Laura had one year of being cancer-free, we celebrated her remission with a family reunion and beach trip. Vivacious and energetic once more, Laura played board games with the kids, threw the Frisbee to them out on the beach and helped them build intricate Lego sculptures. At night, the boys (at this point 8 and 5) watched as we went around the room, toasting Laura’s courage and health, crying, and verbalizing our admiration and love.
Last November, just before she was scheduled to get a shoulder replacement, Laura got the news: the cancer was back. This was much different than the leukemia’s first occurrence; a recurrence can be dire. My husband broke down crying in our home office that day, saying something that had been unspeakable.
“My sister is dying.”
He shuddered as he said it, and we both broke down. The kids tapped away on their iPads in the next room, oblivious to the pieces of the sky crumbling down around us.
We took one day to let the torrents of fear, grief and even anger wash over us, and the next day, my husband and I put on our game faces. As terrifying as this situation was for us, we knew that it was one hundred times more frightening and overwhelming for Laura.
This second cancer fight was more complicated to explain to our sons, now ages 9 and 6. They were old enough to see the wariness in our eyes when we told them the cancer was back. They asked questions like: Is she going to lose her hair again? Is she going to get really thin and weak again? Will we get to see her when she’s in the hospital? Why did the cancer come back?
We answered as best we could. Yes, she would lose her hair. No, we won’t be allowed in her hospital room, because the doctors need to keep it safe from germs, but we’re going to send her a picture of you guys so she can keep you close. Yes, she is going to get very thin and weak again. The last question was more difficult, since there really is no good answer for why cancer comes back. “Cancer is a tenacious, bleeping jerk-face,” seemed inappropriate, though accurate. But in the end we told them we didn’t know why it came back, but Aunt Laura was going to fight every bit as hard as she did last time to make it go away.
This time, our kids learned terms like “bone marrow,” “stem cells,” “transplant,” “donor” and “radiation.” They learned that the doctors were searching for someone to donate their “healthy cells” to Aunt Laura, once the chemotherapy got rid of all the cancer cells. The kids curiously watched as we swabbed the insides of our cheeks, carefully putting them back into sterile, sealed bags to mail back to the Be The Match foundation. We assured them that we wouldn’t get sick if we needed to donate, and our donation would be painless. We would be helping someone (even if not Aunt Laura) get better if our cells matched theirs.
After a match was found for Laura (in Germany), and the chemo and radiation rounds were over, Laura received her stem cell transplant. She’s been dealing with trials and medical aftermaths, but she’s once again won the battle with cancer.
We remind the kids that even though this battle is over, the war may not be. We still pray every night for Aunt Laura, and we celebrate each time a weekly blood test comes back with no red flags. We spend as much time as we can with her – calling her, FaceTiming her, exchanging visits, vacationing, spending holidays and birthdays together.
We emphasize that oftentimes cancer looks like survival, because that’s Laura’s reality. She is surviving. She is living. She is beating cancer. The process has been scary for the adults and the kids. My kids have seen that cancer does change and hurt a person, but it doesn’t always win.