I spent the weekend at a big leadership conference for the Leukemia & Lymphoma Society down in Orlando. Apart from the obvious highlights (two nights in a hotel room by myself—heaven), the meeting was fantastic. I learned a ton, met great people and got totally inspired to continue working my butt off for this incredible cause.
Then yesterday I spent the day with Survivor winners Ethan Zohn and Jenna Morasca doing a kids’ soccer clinic to benefit the Leukemia & Lymphoma Society (read more about Ethan and Jenna here—and donate if you can!). It was awesome (that's Alex, focusing on every word the coaches say, above) and yet another reminder of how lucky I am. A. to be a survivor and B. to be involved with events like these that are helping other patients and their families not just survive but thrive (if you don’t work with a charity, you should!).
Needless to say, I’ve had cancer on the brain lately. Then I heard about Jen Singer, a lymphoma survivor and mother of two who just launched a website called Parenting with Cancer. As you know, I’ve written about this topic before as both my sister and I are parenting with/post cancer. I wanted to learn more about the site and get some tips that could help anyone facing a devastating illness or other life crisis with kids. Here’s my chat with Jen:
Jen and her boys.
Q: Tell me about your diagnosis. How old were your kids?
A: I was diagnosed with stage 3 non-Hodgkin’s lymphoma on June 6, 2007. Nicholas was 10 and Chris was 8. I was 40. The tumor was the size of a softball lodged in my left lung. My oncologist later told me that I probably had about two months to live, and would have likely had my lung collapse and/or a heart attack because of the location of the tumor. I underwent six rounds of chemo, then five weeks of radiation. On my way to treatment, I’d pass a field of teeny baby Christmas trees, and ask God to let me be around long enough to see them grow and cut one down with my kids during their college Christmas breaks.
Q: How did you tell you tell your kids you had cancer and how did they take it?
A: I wanted my kids to hear it from me and not at the school bus stop. So the night after I was diagnosed, my husband, Pete, and my mother-in-law brought the kids to the local hospital where I’d wound up after a pulmonologist sent me there in a hurry. When they saw me in the hospital bed, I could see how scared they looked. So I sat up in bed and hugged them. Then I told them the truth. I showed them my chest x-ray, and said, “See this blob? The doctors need to give me medicine to make it go away. The medicine will make my hair go away. Isn’t that funny? Mom with no hair? But it will grow back. It will take a few months, and I will be in the hospital for part of the time, but our family and neighbors and friends will make sure that you get to Cub Scouts and baseball practice and playdates in the meantime.” I didn’t use the word cancer, because I knew I would burst into tears. Instead, I called Pete later and asked him to repeat what I said and say ‘cancer.” Later, I’d explain two important things to kids that age: 1. They didn’t cause my cancer by how they acted or thought and 2. They couldn’t catch it like a cold or flu.
Q: If you had to do it all over again, anything you would change?
A: I wish I could have been home when I told them so I could manage the fallout, but I wouldn’t be home until the next night, which I didn’t know at the time. I knew that word was spreading fast around town, and I didn’t want them to hear from someone else, so I felt I had no choice but to break it to them while I was in the hospital.
Q: Were there any tools or particular phrases that were particularly helpful for you?
A: As I mentioned above, it’s important for kids to know that it’s not their fault and that they can’t catch it. I never told them I could have died, and I never told them the possible side effects of chemo except that I would be tired and bald and in the hospital for some time. I asked Nick, an artist, to draw me a picture of a soccer goalie diving to keep the ball from going into the goal, and explained that that’s what the doctors were doing for me. I kept it at my bedside throughout treatments.
Q: How honest were you/are you with them about your treatment and your prognosis?
A: I made sure we concentrated on what was next, rather than the big picture of what might happen if the treatments didn’t work. I share good news, such as my tumor shrinking to one-third its size after just one round of chemo. I never shared my odds of survival, because, though they were good—my oncologist said my age and otherwise good health put me at over 90% survival rate—I feared they’d concentrate on the 10%. We took the side effects as they came. The sores in my throat from chemo and later, radiation damage to my throat, made it difficult for me to swallow, and they could see that. So I made sure I cut my food up really small, and I asked them to get me an ice cream so it would make my throat feel better. That made them feel like they could help me, which was important at a time during which we all felt so helpless.
Q: What are some of the best ways to keep your kids from getting too worried about you?
A: Speak the truth. Edited truth, of course, but know that when you’re sick, your kids sense something is wrong. And if you hide it from them, they will fill it in with something worse than the truth and they will feel lied to if and when they find out later. I tried to validate their feelings and address them when they seemed scared, following it up with concrete things we were doing to treat and beat my cancer. I never wanted them to think they had to “be strong for Mom,” even though I’m certain someone, somewhere told them that. That wasn’t their role. They were to be kids, as much as you can be kids when you’re terrified your mother might die. Plus, I kept them busy. My neighbor, Kim, organized carpools and playdates for them all summer long. Later, Chris told me “We were too entertained to worry about you too much.” Distraction plus letting them be kids was important to their emotional survivability. Finally, I set up a support system, including school counselors, psychologists, neighbors, friends, family and teachers who kept an eye on them when I couldn’t, especially in the fall when radiation treatments started and the months started to feel longer and longer.
Q: What surprised you most about the way they handed it all?
A: How much grace that two kids in elementary school can muster in the face of death.
Q: Do you worry that your kids are scarred in any way from the experience?
A: For a while, I was certain that I had ruined their childhood by having cancer. Now I know that by guiding them emotionally through the entire ordeal, they are stronger young men for it.
Q: What are some things other moms said that were particularly helpful?
A: I would get reports from other moms on how my kids seemed content while they played at their houses. I had a network of moms looking out for my kids when I couldn’t do it. One even came to my house to get my kids when swim practice was canceled due to thunder and someone else had driven them to my house. She knew that I would have a rough time taking care of them for three hours until my husband got home. All you really need to say is, “I’m here if you need me.” For carpools or emotional support, cooking or driving to treatments. Don’t try to fix it. Don’t tell the mom with cancer how to feel. Listen. Send love and support. And if you find her kid’s swim goggles on the dock, put them in her mailbox like my neighbors did.
Q: Biggest or most surprising challenges of parenting with cancer?
A: Some people just don’t want to be reminded of their mortality, especially when they’re young and have kids at home, just like you do. Those people will disappear, either until you’re better or forever. Don’t take on their fears. You have enough to battle. The hardest part for me was finding the line between sharing the truth with the kids and scaring the heck out of them and not crossing it. There were nights were I wandered the house crying while the kids slept. Some things are too much for kids so young to handle. I was constantly aware of that line and tried to stay on the right side of it. But I found that a good sense of humor will help the entire family get through the darkest of days. I ran a Wacky Wig Contest, where my friends and family submitted crazy wigs to put on my bald head, and then I put them on MommaSaid.net for voting.
Q: In what ways did having cancer make you a better mom?
A: Too many mothers these days spend their kids’ childhoods longing to keep them little. I have a different perspective, having faced the very real chance that I wouldn’t see my boys grown up. I am teaching my children independence, persistence, creativity and emotional self-awareness to get them ready for a life without me outside my home. I hope to teach it to my grandchildren someday too.