Reflections From an Oncology Mom — What Not to Say

As I reflect on the end of Aven’s proton radiation therapy treatment my mind turns toward what awaits her in the following year. Next, she will undergo chemotherapy. Until now, thinking of home has brought bittersweet feelings and I have not had the luxury of crying to make myself feel better. I missed my babies! I wasn’t here to hug and cuddle on her twin, whose heart is so fully made of gold that she is a certifiable treasure. I haven’t been here for when the little boys have scraped their knees, or have had night terrors and looked for me in my room only to find my side of the bed empty. I have missed my first born’s concerts and milestones in school. I haven’t been here to listen to her fears or to help her solve problems.

For almost two months my heart has been split in two. It has ached for Aven as she worked so hard to get through the radiation positioning and side effects. At this center she was the youngest child to have done proton therapy in the face down position without the use of anesthesia. She maintained such a positive outlook and shone her light so bright. I also ached for the ones who stayed behind, for all that I missed and for the emotional price the entire family has paid.

My goal was to suppress my feelings of anger, or bitterness, or guilt so that when my Aven looked into my eyes, she could see the best part of me shining back at her. In those moments when she looks to me for comfort and security, it feels like a special angel is dispatched to assist me. Perhaps it is the supervisor of the angels that surround us, for we have been lifted by the divine intervention that daily we seek. So it feels like a particular, vetted, expert angel arrives and boosts my spirit, magnifies my ordinary effort and strengthens me so that I in turn may strengthen her. It has been my hope that she sees strength and faith when she looks at me. If she does, I win a small battle within myself.

Because I can’t be with her all the time now like when I was in Florida, I made a list of things I hope people will review/consider as they engage her and engage the family. Maybe we can have earthly angels around us in the form of friends, neighbors and faith community. Maybe we can all work together to build up, not burden her spirit.

Some of these things have been said to me in her presence and some I have been asked on my own.

1. Is it terminal?

Please be considerate of what we (or if reading this for someone else, other parents) may have shared with our (their) child. Don’t put us in a difficult position because of your insensitivity.

Instead say: I would like to know more. What is the correct term for her condition?

2. What are her chances?

I wonder if people think that parents of children with worse chances of survival are more deserving of sympathy, than those of children with better chances? Cancer sucks. It doesn’t matter what kind it is.

Instead say: I am here for you if you need to talk.

3. How is she doing (with a sad face)?

Please don’t think that putting a sad face when speaking to a child with cancer, or a family or caregiver of a child with cancer, is an acceptable expression of empathy. Be careful what perspective you share. Children are very aware of how others view them. In Aven’s case, the energy that surrounds her impacts her own outlook tremendously.

Instead say: How was your week? Regular face…the way you would speak to anyone else regardless of their circumstances.

4. You are so strong.

I know this is meant as a way of complimenting either the child who is undergoing treatment, or the caregiver. Consider that they may not feel strong and by saying that, you may be adding another “to be” to their already mountainous pile of what to be right now.

Instead say: Is there anything I can help you with at home? Our son’s playschool teacher dropped off food and treats for the family while I was away. What a way to brighten and cheer those that had to stay behind for so long. Our friends and neighbors have given the children rides, our church family has shared food and offered support and blessings. Our friends, The Morans, played an important role in supporting my mom and the family. One time they took the kids for dinner at McDonald’s for a fun treat which helped distract them from missing Aven and I. These, and many other kind acts and offers of help, have been touching examples of what to say and what to do.

5. I could never handle this.

Really, so you would let your child handle it on their own if it happened to them? We don’t have a choice. When a child is diagnosed with cancer, there is no other choice other than to fight with them and advocate for them.

Instead say: Have you been made aware of resources for your family, for this difficult time?

6. My nephew (substitute anyone you know) passed a few years ago of leukemia (substitute any life threatening illness).

Never say this to anyone going through the bitter pill that is cancer. (An Uber driver started to tell me about her departed nephew in front of Aven and I quickly re-directed the conversation. (I was shocked that anyone would think this was acceptable).

Instead say: I will pray for you and your family. Family and friends from diverse faiths have been praying for Aven. Her ward (church group) here at home had a fast for her one Sunday. We have heard of little children who don’t even know her personally, praying for her. Family and friends traveling have put her name on temple prayer rolls and church prayer lists. Those things lift and sustain Aven and our family.

7. What happened to her hair?

I will answer with — Why is your foot in your mouth? Please don’t call attention to something my child may already be feeling self-conscious about.

Instead say: You have a beautiful smile…or, I love your brown eyes. There were some kind ladies at the Ronald McDonald House in Jacksonville that always complimented Aven on her smile or on her lovely eyes. She always walked away feeling happy and bright after she spoke with them.

8. You need to make sure she eats only healthy food so she can beat it.

First, don’t raise the notion that there is a chance she won’t beat it. Sometimes people have also said, “she looks great, she will be fine.” Don’t minimize or be dismissive of her struggle. But regarding food —obviously I am going to feed her with the best food I can afford. I am also going to let her be a kid and sometimes eat things that are just for fun or comfort.

Instead say: What does she like to eat or drink? My friend Dena, who is a leader of the girls’ group at our church, had the little girls (it’s kind of like girl guides but with church stuff in it too) make different smoothie recipes for Aven when she had just had surgery and was struggling to eat. That was first class and another loving example of what to say (and do).

9. Going to Florida for treatment is like a mini-vacation.

For some families this may be true. Especially if they can all travel and be there together in their own separate rental, have enough funds that they can do cool stuff with the entire family and do not have stressors at home waiting for them. Indeed some of the adult patients at the UF Health Proton Radiation Therapy Institute, who were empty nesters there with their spouses to undergo some type of treatment, did really enjoy other aspects of being in Florida. We heard that on Wednesdays at the patients and their families luncheons.

For us, it wasn’t so easy. Everyday was hard. Everyday she wished her siblings were there with her. Everyday she asked for her dad. Everyday I tried my best to cheer her up and introduce her to little friends that kept her mind occupied and her heart lifted. Although it was hard, we did have some happy moments and made some lovely memories. She made friends from different states, countries and from different stages in life. It was heart warming to see the hand of God in our lives, and to see the wonderful people placed in our path through Him.

We were blessed to have had some neat experiences and visit some interesting places thanks to the generosity of strangers and donors to both the Ronald McDonald House (RMH) and the UF Health Proton Therapy Institute. I tried my best to coordinate fun things for Aven to look forward to after her treatments. She loved the Kids Zone at the RMH and the healing garden on the 4th floor. But being so far away from family took its toll. We count it as one of our biggest blessings to have had the opportunity to reunite the family when Aven needed their love the most.

So before telling us that what we experienced was like a mini-vacation, instead acknowledge:

If speaking to Aven: That must have been hard to be away from your family, school and friends. When she responds, follow with something like — “I am glad you are back!”

If speaking to me: That must have been hard to leave your 2-year-old, the rest of your children and Aaron behind. When I respond, give me space to confide in you or not.

All of us at one point or another have said things without thinking. It is not the end of the world and is not worth losing friends over. Most people are genuinely trying to be helpful. I have this need to protect Aven, and writing these things down and sharing them in the hope that it may help her in her interactions with others, is a way for me to feel some comfort. I have been managing every aspect of her life seven days a week, 24 hours a day for almost two months…a large part of it on my own. I have kept her near me wherever we have been, so that I can hear what people are saying or asking her. That way I ensure to cut off any less effective or insensitive comments. But she is ready for back to school, she is ready to reintegrate into her life. We went for a bike ride yesterday and we stopped five times because we met people who care for her, or who have grown close to the family during this challenging time. This post is meant to be helpful to those around us, and to anyone who is faced with this situation in their lives.