I’ve been really into reading young adult fiction lately – less taxing on my brain after a long day of writing. I love recalling the mindset of my middle and early high school years when everything around me was either cool or completely embarrassing. It was a pretty narrow focus, one that cracked and splintered when anything more complex (like a family member’s cancer) arrived on the scene.
When tough times were going on around me, I saw straight though adults chumming up to me with pop-psychology, didactic books, and sentimental moments. All they elicited were eye rolls and a contemptuous desire to run out of the room screaming. I could handle “learning moments” in the form of an After School Special, but that was about it.
That’s why I adore and highly recommend a slender new book Brushing Mom’s Hair, by Andrea Cheng. A book of 52 short poem/vignettes about a 14-year-old whose mom has cancer, there’s no room for the sappy crap adults want kids to learn and feel. It reads like it was written by a 14-year-old. She makes computer graphs charting her mom’s fluid intake, is stubborn, bratty, and sweet, obsessed with ballet, first kisses, and her weight. Supposedly for teens, I think it’s a better match for middle school girls. (I wasn’t reading Sweet Valley High in high school; I cared most about the insights of teenagers when I was in middle school.)
Nieces, nephews, students you are teaching, your own children, younger siblings. Lots of young adult cancer patients talk to me about how kids in their lives respond to their cancer. How have kids in your life responded to your cancer? Eye rolling? Openness? Any tips for what works, what doesn’t when dealing with cancer and kids?
P.S. When I was a sophmore at Columbia University, I baby sat for Francine Pascal’s kids… Guess what - Fancine was actually a 30-something guy!
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
September 21st, 2009 at 12:04 PM
Kairol,
My children were 1, 3, and 5 yrs old when I was first diagnosed. I’ve been in and out of treatment ever since, “doing cancer” while rearing my kids to their current ages of 20, 22, and 24 yrs old.
Intuitively you might think the biggest challenge for me was when they were very young and needed help with everything. In contrast, teens are old enough to take care of their physical needs (bathe, pack a lunch for school) on their own. They are old enough to mow the yard and drive a car. So, surely they can understand what’s going on when a parent has cancer and can deal with it.
In many ways, helping teenaged children through a parent’s illness is more challenging:
1) Teens are supposed to be separating from parents and home; illness creates the conflicting message that they need to be home, helping with chores and younger siblings.
2) Teens may look and act more like adults than youngsters, but they are still children. They still have needs for guidance and comfort and “babying,” especially in the stressful setting of a parent’s serious illness.
3) While youngsters might respond to the stress by regressing to bedwetting or tantrums, teens can respond to the stress by experimenting with drugs, unsafe sex or other dangerous behaviors, such as driving too quickly.
My exceptionally long survivorship has given me the luxury of time to explore the twin challenges of “kids and cancer” and to learn what works and what doesn’t work.
I’ve shared all I’ve learned in: WHEN A PARENT HAS CANCER. A GUIDE TO CARING FOR YOUR CHILDREN (HarperCollins;http://tinyurl.com/WSH-WAPHC)
I also wrote two books for children:
BECKY AND THE WORRY CUP comes included with the book for parents
THE HOPE TREE was republished by Komen and is available at http://tinyurl.com/WSH-THT
I hope this helps. With hope, Wendy
September 21st, 2009 at 12:10 PM
Questions were my best friend when dealing with my own kids and my nieces. Afraid to rock the boat, middle schoolers and younger kids often keep things, even very scary thoughts, to themselves. A dialogue worked best to learn what they really wanted to know and were most frightened or angered by — especially easy if we were engaged in some activity such as playing a board game or cards, cooking dinner together, folding laundry or doing other quiet chores, walking, playing with pets, etc. Doing something together makes it a lot less awkward to talk about tough stuff.
September 21st, 2009 at 1:07 PM
Talking to children (especially young children!) about cancer can be tough. There is lots of room for confusion (“Can I catch it? Did I cause it?”) and it is an emotionally scary experience for a child to see an adult’s worry or fear.
And you are definitely right about older children’s ability to see through the “learning moments” from adults and be wary of them. Our non-profit actually has a program called FaCT (Facing Cancer Together) that tries to solve that problem by incorporating fun events like trips to the amusement park, summer camps, teen rock climbing adventures, etc. to engage kids first, before any deeper discussions happen. Laura’s right, “doing something together” makes it much easier.
Our education series attempts to solve the problem you originally posed - helping parents find supporting, constructive ways to talk about cancer with their children about cancer, and to understand its impact. Although our programs our free for families in the Twin Cities, but we also have a DVD available on our foundation’s website: http://www.mnangel.org/get-support/facing-cancer-together
@angelfoundation
September 21st, 2009 at 1:40 PM
Like Wendy my kids were young when I was diagnosed with breast cancer, 17 months and 5. They still needed help with everything and understanding what was going on was tenuous at best. I’m grateful that we never had to have the “Are you going to die Mom?” conversation and dread the day they come across someone who dies from breast cancer.
My son would tell his friends that “Mom takes medicine to make her cancer go away it makes her hair fall out. Wanna See?”
I think it may have been harder on my daughter and I as I was not allowed to pick her up for a while after surgery and there’s just no explaining to a child under two why Mommy used to be able to pick her up and can’t now. It’s her puberty that I dread the most and not just because she’s going to be a teenage girl!
I think young (er) survivors are charting a course together and just have to wing it. Honesty seems to work the best, nothing like a group of kindergarten kids rubbing your bald head to put things into perspective.
September 21st, 2009 at 2:01 PM
My boys were 8 and 10 when I was diagnosed, and we’re just about at the two-years-in-remission mark; I just had a clean scan.
I felt that my attitude during treatments was very important for them. I tried to stay upbeat: We had a wacky wig contest. It was fun for the kids to run around in Marge Simpson and Heatmiser wigs.
But I also thought it was important to be honest within reason. At that age, they needed to know they didn’t cause my cancer and that they couldn’t catch it either. We shared all good news and explained everything not-so-good (like when I dropped to my knees in front of them with excruciating bone pain) when they needed to know.
As they get older, they’ve understood more, including that I could have died. So we still talk it through, especially around scan time. But now it’s best for them to see me as normal as possible, coaching soccer, being mom, and so on.
September 21st, 2009 at 2:19 PM
My sons were 10, 12 and 15 when I was diagnosed with AML and in elementary school, junior high and high school. I didn’t really get to see them because I was immediately hospitalized and gone to another city for treatment. I really wish they had been brought to see me more, it was good for them and me. When they did come my youngest would curl up in my hospital bed beside me no matter how gross I looked. My first instinct was to not let them see me in such rough shape but it actually helped them to see me and what I was going through.
The 12 turning 13 year old wasn’t bothered about my situation after a bit and found solace in his new teenage social scene, he was happy just knowing I was being taken care of. My oldest met his first love and went through all his new experiences without me there to talk to him about it. His girlfriend and their family really helped him stay grounded.
When I was able to come back a few times, they were quite proud of me and happy to have me around, bald and all. I would walk to my two youngest sons schools to pick them up and asked them before hand if they were embarrassed about my bald head, would they prefer I didn’t come or wear a wig etc. They were not bothered or embarrassed one bit about it. I was quite surprised about that.
My oldest, very mild mannered son almost beat some kid who decided to say nasty things about me, like I deserved my cancer. I had never even met him. Kids can be so cruel.
Settling back into life again was tough when I came back from the hospital because I had rules expectations and serious health needs. My mother had been taking care of them and she was too distraught to do anything but keep them fed while I was gone. Me being back and having rules was a shock to the system for them but we all adjusted. Despite them being at the age where everything is embarrassing, they were always there to hold my arm and help me walk or literally catch me if I fell.
I kept them in the loop throughout the entire process because I could see they needed to be informed. Their imaginations were left to run wild without the truth. I have always been very open with them but the hardest conversation I ever had to have with them was explaining that I might die because the chance of that was very high. I had to give them the brutal truth because if I had suddenly died during treatment it would have been a devastating shock that they weren’t ready for. They needed to know. I also had to make a will, a living will and talk to them about who they would want to go live with if I was gone. Their lives were at stake as much as mine.
All in all we made it through, are still a solid family and despite some hard times we are all doing well. Make that, really well.
September 21st, 2009 at 2:36 PM
I have said it before, but after reading all of your comments, I will say it again: There should be a different staging system for cancer patients who have kids: Stage I-IV NK (no kids) Stage I-IV P (parents). It just seems like an entirely different ball of wax when you have kids - little or big ones, to consider. As someone who does not have kids, you guys teach me a lot. Thanks for your insights. xo Kairol
September 24th, 2009 at 5:33 PM
I’m struggling with this now, and wasn’t sure how or whether to respond. My daughter was 6 and my son was almost-2 when I was diagnosed, and I thought we had this handled pretty well - Julia understood the fact that Mommy was sick, had to have surgery to take the sick out of her, then had to have chemo to make sure the sick didn’t come back. Easy enough, right?
Until I had a friend that Julia knew die a few weeks ago from the same cancer. Julia is NOT dealing well with this at all - she’s 7 1/2 and struggling with so many questions. The hard part is that she isn’t necessarily coming to ME with them - I’m not sure why, but I’m trying to be patient and undertanding. It’s so hard, because I thought the most difficult part of this would be *telling* her that I had cancer. I had no idea this part of it would be that hard.