“Make sure you put in some advice about how to tell the kids,” a colleague urged me.
My first response was: “I don’t know if I can. It’s such a difficult topic.”
“You have to,” she insisted. “You know how much our patients struggle with this. I know Karen does.”
I looked across at the row of chemotherapy chairs and realised to my dismay that nearly half of the patients receiving chemotherapy that day were parents of young children. A 40-year-old patient called Karen caught my eye and smiled. Karen was a lovely woman, an actor. She had played good roles in local productions but her work had come to a sudden halt when she was diagnosed with cancer. Things looked good for many months, but lately she had become unwell and started another round of chemo. I had always been open with her, so she knew that this time, my expectations of chemo were modest. She had decided she would give it a good try but if things were still not looking up after a few weeks, she would stop treatment and concentrate on being home with her three children, aged four, six and 10, and her husband, Jim.
I suspect there is no cancer patient and parent who doesn’t fret about what and how to tell the children but, surprisingly, this is another topic rarely brought up in the consultation. Many patients don’t feel it is a doctor’s role to advise them on such personal matters, or they imagine that they might be wasting their time discussing these issues when there are so many medical questions swirling in their mind.
I must also confess that most of my enquiries about the children of cancer patients go something like this:
“How are the kids doing?”
“OK. Thank you for asking.”
“That’s good to hear.”
As I write this I find myself reflecting that this desultory exchange is designed to protect both parent-patient and doctor from the awkwardness of discussing the single most difficult aspect of a serious illness: the dread of leaving young children behind.
Shortly after Karen sat down last week, I went through the checklist.
“And how are the children?”
“I’m really worried about them.”
“Tell me more,” I said, swallowing my apprehension.
“I will need your help in explaining things to them. I don’t know where to start.”
Fearing that I would mess up the task, I promptly suggested the help of a skilled psychologist but Karen wasn’t interested. “I’m too tired, doctor. Plus, you’re a mom, so you must have some idea about what to say to the kids. I just want you to guide me through it.” She looked at me with such hope that I promised to do my best.
Karen died two years after the date of her diagnosis. Her children were such an integral part of her life that we touched on them on nearly every occasion we met. Her devotion to her children’s welfare and, by extension, the welfare of other similarly placed children, was so profound that I know she would be proud to let me share how we navigated each downward step in her journey. I hope Karen’s story helps you navigate yours, if you are in this unenviable situation.
‘If I’m OK, they are OK’
Karen’s lung cancer was a bolt from the blue. She had never smoked, had no family history and was simply unlucky. When the diagnosis was confirmed, we also discussed that its spread meant that it was not curable. However, with several recent advances in treating her type of cancer, I was optimistic about keeping her well. Karen wanted to tell the children and overcame her husband Jim’s early ambivalence.
She sat them down one evening and told them that she had been diagnosed with an illness called lung cancer. She deliberately chose to use the correct terminology rather than Jim’s suggestion of calling it a lump. We had discussed the fact that children fell down in the playground and got lumps and bumps. She didn’t want the children to think that all lumps were sinister. Their eldest, Alyssa, had seen the ads depicting cancer on cigarette packets and her first question was if her mother had been smoking cigarettes. Karen and Jim had always pointed at the images as the consequences of smoking. Karen assured her daughter that she had never smoked and that sometimes people developed cancer for unknown reasons. Robbie, their middle son, wanted to know if she was going to die. He had a classmate who had just lost her grandfather to lung cancer. “I’m not dying right now, darling,” Karen told him. “I hope to get better with treatment.” The youngest child, Emily, at four years old, didn’t understand any of the conversation. She jumped on her mother’s back and chirped: “Can we play hide-and-seek now?”
As she began chemotherapy, Karen decided to hope for the best and plan for the worst. She set about consolidating a support system for the children. She did this by calling upon a small group of parents whose children were friendly with hers. She told them openly what she knew: that she had lung cancer that was not curable. Her oncologist felt there was good treatment available but she was likely to become sicker with time. Karen told them that she had stopped working as she wanted to maximise her time with the children, but on the occasions when she was too unwell, she would need the parents’ help. The parents, who were also Karen’s friends, were shocked, but felt proud to be asked to play a helping role.
Over the next few weeks, they worked out a system that meant each child had one or two additional adults to rely on if Jim and Karen were both busy. On chemotherapy days, Emily was dropped off and picked up from kindergarten by her friend’s mum. When Jim couldn’t make it to Robbie’s soccer practice, another father took him. Alyssa walked to her friend’s house after school and was later brought home by the friend’s mother after the girls had finished their homework. When Karen felt well, which was almost always in the initial months, the extra help was not needed, but having a roster in place meant that the other adults were not surprised at being rung at short notice.
Jim’s parents were frail and elderly and needed help themselves. But Karen’s parents were able to assist. While they weren’t able to drive the children back and forth from their activities, Karen’s mother cooked healthy dinners and her dad helped with garden maintenance. Both offers freed up Karen and Jim to take care of other things.
A practical thing Karen discussed early with her children was rearranging after-school activities that required prolonged parental involvement. She explained to the children that while she was keen to maintain their activities, her illness meant that they all had to make some adjustments. For Alyssa this meant finding a French class closer to home rather than the one she had become used to, which was a five-hour weekend commitment. For Emily it meant moving a gymnastics class. Robbie offered to reduce the frequency of his painting lessons. Karen was initially apprehensive that she was asking too much of her children, to give up what they liked, but she soon realised that they felt proud to be helping their mum and gladly adjusted to their changes. Karen spoke to her children’s school early in the piece, too, letting them know about her diagnosis and the changes in their lives. The counsellor agreed to keep a close eye on all three and periodically provide updates to Karen and Jim.
One day Robbie came home, upset that a boy in his class had said he would catch cancer from his mum. On hearing this, Alyssa complained that she was sick of being asked if she was all right. Little Emily, meanwhile, carried on, seemingly oblivious to anything being out of the ordinary. Karen instinctively felt angry on behalf of her children, but used the occasion to discuss her cancer with them further. She reassured Robbie that cancer was not contagious and explained to Alyssa how much her friends and their parents cared about her. Karen also told them that her being sick was not the children’s fault and that people sometimes said awkward things because they didn’t know how to express their true feelings. Karen felt that this gave the children permission to discuss any other concerns they might have about her and bring home any comments they had heard on the playground. Sure enough, one day Robbie said to Jim: “My friend said that cancer only happens to old people. Was he being mean to mum?” Jim was able to explain that cancer also happens to young people, but his friend was probably puzzled because he had not met anyone like that. Alyssa asked if her mum would lose all her hair like someone’s aunty did and Karen reassured her that her therapy was different so she would not.
Things went smoothly for nearly nine months and everyone fell into a comfortable pattern. One day, Karen came in for a quick visit with all three children, whom she left in the waiting room to watch TV when I called her in. I asked how the children were doing and she replied that they were surprisingly normal. “They watch my face and if I’m OK, they are OK.”
Sadly, I won’t forget that day because it was when I had to tell Karen that after more than a year of stability, the cancer had begun to spread to critical areas that concerned me. I also observed that she did not look as well as she had in the last few months. We talked about changing treatments and hoping for the best while expecting that treatments down the line would not work as well as the initial one. She listened worriedly and then burst into tears. “Oh, what a bad day to bring the kids,” she said in a woeful understatement. Then I watched in admiration as she rose and washed her face in the sink, reapplied her lipstick, and said: “We will handle it. I will talk to them.”