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Telling Kids About Cancer

By on October 17th, 2013 Categories: Day-to-Day Matters

Just a few months ago when I introduced myself to people, I usually started with either my name and job title or as mother of (fill in kid’s name). These days, I tend to lead with the diagnosis so we can start there. My name is Sara Masri and I was diagnosed with breast cancer in early June. I started my treatments in July — 4 cycles of AC and then 12 cycles of Taxol, to be followed by a bilateral mastectomy. My diagnosis was truly a fluke. I felt a lump in my right breast and went to my ob/gyn to ask about it in February. She assured me that it felt like dense tissue and we would monitor it. It was still nagging at me a couple of months later, and I went to see my general practitioner in May. She said it was probably nothing, but sent me for a mammogram/ultrasound as reassurance. The mammogram proved my doctors correct — there was nothing wrong on the right side. However, the mammogram picked up something on the left. This was on a Friday and the following week I had a needle biopsy on Tuesday and a cancer diagnosis on Thursday. I was 38 years old with limited family history and here I was with breast cancer. Since then, I have learned that the tumor is small (approx. 2 cm), that the cancer is triple-negative, and, most importantly, that I am BRCA1-positive (hence the mastectomy decision).

There have been many challenges since diagnosis, but the hardest one for me was talking with my children about cancer. I have an 8-year-old daughter and a 4-year-old son, and they both freak out when I have a cold, mostly because there will be no one to cook dinner for them. My daughter is the one I was most concerned about because she is old enough to understand the situation. My son is in blissful oblivion and frankly, I would like to join him there sometimes. All he knows is that I have an “owie” and that I have to take medicine for it. While I am far from an expert, here are some lessons I have learned from some challenging conversations and humorous situations.

Things can always be worse

After several conversations with the hospital social worker, we had a basic script for talking with our daughter. We told her we had something to talk about and her first statement was, “You’re not having another baby, are you?” While clearly cancer was not something better to be happening to our family, I realized that in her mind, things could always be worse.

To my daughter, cancer equaled a death sentence, and we had to assure her that it did not mean that for me. I told her about people she knew who had cancer and were fine now. These days, she rolls her eyes when I point out yet another person on TV who has beaten cancer, but she does appreciate that they seem to be fine. Therefore, while cancer stinks, there are ways it could be a lot worse.

Surround them with understanding people

One of my fears following the conversation with my daughter is that she would tell someone I had cancer and they would immediately tell her that they knew someone who died of cancer, thereby creating a major freakout. I decided to head this off at the pass by speaking with the head of her summer camp, as well as speaking with my son’s teachers and head of school. The camp director was terrific and did a sensitivity training for her staff about working with children going through difficult situations. The conversation at my son’s school was helpful as well, and his teachers have been able to respond to his questions in a more informed way. We also figured out some strategies as basic as bringing him out to the car on days when my immune system is compromised and I cannot go into his classroom. All of this help puts my mind at ease.

Miriam Hospital, where I receive my treatments, also has a great program for kids where they can meet the doctors, see where I get chemo, and ask lots of questions. Most importantly, they meet other kids in the same boat as them. My daughter appreciated knowing that she was not alone in this.

Enough about you; it’s all about me

I never thought I would say this, but seeing my kids be entirely self-centered makes me feel like they are ok. A few weeks ago, my daughter asked how long I would be getting my medicine and when I told her it would be until Thanksgiving, she responded by saying that I had better not forget to plan a birthday party for her in October. At 8 and 4, their world revolves around themselves and not cancer, and that is just fine.

Fixation to fascination

My daughter’s biggest concern was my hair loss. She did not want to know “what was going on under there,” and I did not really want to know either. For both of us, I think that losing the hair was a symbol that something was wrong — now I would look sick. There were SO many questions about it and finally the day came when I decided to get it buzzed. We talked about it at dinner the night before and I joked about how now daddy would have more hair than someone in the house (my apologies to my husband). Now, the kids are fascinated by it. They rub my head like I’m a Chia Pet and my son happily declares that even though I do not have a lot of hair, mine will grow back and daddy’s will not. I thought this would upset them the most, but finding the humor in it has helped.

In closing, one of the best moments of all of this was shortly after my daughter found out about my cancer. I asked her how she was doing and she said, “This sucks, but you’re going to be fine.” In one sentence, she summed up her feelings and gave me a mantra that has carried me through some challenging days. In the upcoming months I look forward to sharing how I am doing and I promise to assure you all that while cancer/chemo/feeling lousy do indeed suck, that my family and I will be fine. Until next time…

Sara Masri is a 39-year-old mother of two who lives with her husband and children, Things 1 and 2, in Providence, RI. She works in the Development Office of Meeting Street, an organization serving children with special needs. In her spare time, she has breast cancer.

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