Cancer treatments take up a lot of time. The years of my daughter Lauren’s treatments included CAT scans, MRIs, and radiation treatments along with chemotherapy.
My husband Dan and I wanted to ensure that our other kids were spending time with Lauren at the clinic and hospital. It was important to us that they get to know our care team, the doctors, nurses, and therapists treating Lauren. Not just get to know the people, but get to know the environment, the sights, the sounds, the smells. I wanted them to be immersed in Lauren’s world. I wanted them to know where we parked, what time the cafeteria opened, the day each month they brought in pillowcase kits for patients to sew and take home, where to find the stash of free hospital snacks, the craft cabinet, and the blanket warmer. Lauren’s diagnosis impacted all of us, and in order to support Lauren, we needed to know what her days were like.
When Lauren was inpatient at the hospital, my husband Dan would bring the kids after school. Her hospital room was crowded with the six of us, the TV on, crafts galore, homework scattered around, and lots of trips to the cafeteria. There was always a kid laying in the hospital bed, and the kid was not always Lauren.
Treatment took up so much time, spending time as a family was a challenge. Most days I took Lauren and Dan took care of everyone and everything else at home. If Lauren was in the hospital for more than a few days, we would trade off so we could each spend time with all the kids.
As twins, Emma and Lauren were used to doing everything together. They were used to being a team, doing everything in synchrony. Swimming lessons, school bus rides, playdates, soccer, and birthday parties. They were a package deal.
Lauren needing to be away for treatments was really hard on Emma. Dan and I decided that being with her twin was more important than second, third, or fourth grades. Emma could make the academic stuff up, but when your twin is growing up in a hospital, you need to be there with her. So she came more frequently and always made the days better. Emma is fun, cheery, and outgoing. She’s equally comfortable talking to toddlers as she is to adults. The girl can talk to anyone. She became a big fan of art therapy and the other child life programs.
Many mornings, I would hear the girls talking as they got ready for the day. Lauren would be getting dressed for a day in the clinic and Emma for a day at school. Emma would find me and tell me, “Mom, Lauren really needs me today. I just know she needs me today.” Other days she would say, “Mom, I really need Lauren today. I can’t be away from her. I’ll miss her too much.”
Whenever Emma asked to come with us, I always said yes. Being there was something she needed or Lauren needed, or they both needed. Homework and good grades could be fixed in the future, but childhood is fleeting, and cancer was already stealing time from them.
I remember one CAT scan in particular. Usually Dan and I both brought Lauren for those big tests, but he had a work commitment that couldn’t be rescheduled. Emma had told me early that morning that Lauren was really scared about the scan and asked if she could come to help. We got the older kids off to school, he headed downtown, and I got the twins ready to go.
Prior to the scan, Lauren needed her port accessed. Getting the needle put in her chest always caused a high amount of stress and anxiety. We had all kinds of methods to help, and it got better, but never easier. Once her port was accessed, we headed across the hospital campus to the radiation department. The three of us waited for our turn and were soon ushered back to the scan room. Lauren needed to change into a hospital gown and get ready for the scan. Because of her age, and I think her anxiety, I was allowed to be in the scan room with her. As we were changing, it dawned on me that Emma would be alone in the changing room during the scan.
The changing room was only feet from the scan room, but she’d still be alone. I was so used to Dan being with us that it hadn’t occurred to me to find someone to be with Emma. I wanted to split myself in two. I felt guilty for choosing Lauren’s needs over Emma’s. Lately, I was always prioritizing Lauren’s needs. I knew Emma noticed. Even as I continued to put her needs second, I worried and wondered – was this permanent marker kind of parenting or would it be erased, forgiven, and replaced by something else.
I explained to Emma that I needed to be with Lauren. She asked if I could ask the doctor if she could come just this once. I told her that sadly, no, it wasn’t possible.I assured her it wouldn’t be long and I was so proud of her and how much of a help she was to me. I know she was scared. Scared for Lauren, scared of the machinery, scared to be alone while her mom and twin sister left for the test. I felt sick.
While the test ran, Lauren lay on the table, there were multiple times she needed to hold her breath. The test has a computer voice that says, “Hold your breath” then after a long pause, “Now breathe.” I still hear that voice in my head. As the exam table moved Lauren in and out of the tube, my head was spinning. What was the technician seeing? Was there progress from the last scan? Was chemo working? Was Emma okay? I hoped she had stayed in the room. I hoped today wasn’t too traumatizing for her.
The test finished. I helped Lauren down off the table. We went back to the changing room. Emma was waiting for us and gave Lauren a big hug. “You did great,” Emma told Lauren. “I peeked out of this room and I saw you getting ready. I saw you on that table. It looked scary. Were you scared? And, I heard that voice. That breathing voice. Have you heard that voice before? Know what Lauren? I did it with you. When the voice said ‘Hold your breath’ I did. And when it said ‘Now breathe’, I did. I did it every time I heard the voice. I did it so I could feel what you feel. So we could breathe together.”
I was so proud of Emma’s love and support for her twin, but my pride fused with guilt. They still leave notes out for the Tooth Fairy. They believe in unicorns. Their core memories are still forming. And here they are, already versed in cancer, chemo, and scans. What a devastating childhood life had thrown them. Besides the physical stuff, what kind of long term impact would cancer have on them? What other roads would this disease take us down and could we handle it?
They chatted on about the test. Lauren told her sometimes that voice worries her because she thinks she is going to breath when she is supposed to be holding her breath. They practiced holding their breath for each other. I helped Lauren get dressed and gathered our things. They barely noticed me. The technician stopped by. He said because they were both so brave they could pick a toy. They beamed.
They held their toys and each other’s hands. We did it, I thought. We got through today. We got through another scan. I would hold my breath until we got the results. But for now, at this moment, I heard the voice, now breathe.
Amy Graver currently works in the corporate world, and is a writer, a wife, and mom of four. Her daughter Lauren was diagnosed with rhabdomyosarcoma at age 7. Amy’s writing chronicles the journey on which cancer has taken her family. Lauren’s cancer diagnosis imposed a new reality and a new perspective on life. She is dedicated to making the cancer experience better for future families. Amy is an enthusiast of US presidential history, she aspires to be a professional seashell collector, and is absurdly competitive about things that don’t matter.
Amy is a 2022-23 CPN Blogger in Residence, an opportunity available through support from Sanofi.