September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Vashni Nilon
Last summer, my 12-year-old daughter called me at work. I don’t even remember what we talked about, but I do remember that we were both saying, “I lurve you,” “No, I lurve you,” and so forth. Minutes later, she called screaming in pain. I remember yelling, “Get daddy!”
The next few hours are a terrible blur. Lucy lost the ability to speak. After 18 months of clean scans her aggressive brain cancer had returned. Not just in the original site, but in the opposite hemisphere, the brain stem, and in the fluid around her brain. Two days previously we had been shopping at the mall. Laughing, skipping down the halls and spending an inordinate amount of time deciding which large stuffed animal she would purchase with a gift card. We were told that she could no longer be cured. Lucy was dying.
When Lucy was first diagnosed, we had hope. But her Dad and I agreed – and we don’t agree on much – that if this day came, we would do what was best for Lucy. We would not spend the remainder of her days in the hospital, prolonging the inevitable, if it meant that she would have no quality of life. At this point, we were told that surgery was not possible and that there was no treatment that was known that would reverse the inevitable outcome. So we decided not to pursue treatment and were transferred to palliative and hospice care.
It should be noted that every day since then has contained some sort of guilt for not being able to cure my daughter’s incurable brain cancer. At first Lucy did not know of her prognosis, but she was an extremely intelligent, intuitive person. She knew something was dreadfully wrong.
A year ago, we had to tell our just-turned thirteen-year-old daughter that she was dying. It was, and remains, horrific. We tried to take our cues from Lucy and cram a lifetime into what turned out to be the ten weeks she was with us. If you knew Lucy, you know that she loved school. She was a very conscientious student, but also loved the social aspect. She loved getting her school supplies, her back to school outfit, and the anticipation of seeing her friends.
Last year, Lucy was to start eighth grade. She was really looking forward to finishing middle school without radiation, chemo, and endless doctor’s appointments. She was devastated that she would not have this opportunity. She decided, despite everything, that she wanted to go.
All of our energies were focused on getting my girl to school in whatever capacity she was able. Emails were sent, schedules were discussed and a huge meeting was held to discuss how on earth this was going to happen. Our palliative team was kind enough to send a physician and social worker to discuss Lucy’s care with the school. Lucy would need a wheel chair and would look different than she did last year due to the medications she was taking to keep her comfortable. Some members of the school board were uncomfortable with the signed Do Not Resuscitate orders we would have on file and I also carried on my person. The doctor kindly explained that these documents were protecting Lucy from a procedure that would cause her both physical pain and mental trauma only to have her die anyway in a potentially more painful way. I assured everyone that I would be with her every second. I carried rescue medications, a pillow and blanket and a lunchbox full of painkillers. Her comfort and dignity were my only priority. Even with the grief and uncertainty of life without her tearing at my throat.
As the first day approached, Lucy and I went school shopping and picked out some school clothes. She bought a new Jansport backpack. I wheeled her around Staples and we got all the school supplies on her list as well as her brother’s. I took her to get a haircut and a mani-pedi. She even had an eyebrow wax. Some days I didn’t think she would be able to do it.
The first day of school came. Lucy watched from the porch as her brother got on the bus. She was so sad but I said let’s go get you ready. She got dressed herself despite having to lift her legs with her hands to get her leggings on. She put on makeup – beautifully, I may add. She put a flower in her hair and her Lucy Belle Converse high tops on her feet. She walked carefully down the stairs and got in the car. Her self-ambulatory wheelchair was in the back. The day before we had put some owl stickers on it as Lucy wanted to “Jazz it up.”
I wheeled my daughter into the office. I can only imagine the look on my face. I had made up my mind that if anyone so much as looked at her sideways, they would be hanging from their underwear from the flagpole in 10 seconds. That included all of the administration.
Her friends were there to greet us. I will never forget how she insisted on propelling the wheelchair herself as they formed an armada around her. They were all in with the flagpole plan. Lucy went to health class that day. She kept up with the other kids despite the tumors in her brain. She held herself to the same standard. I stayed outside and fretted. When she came out I asked what the class was about. “Reproduction,” she said. “Not very relevant,” she added sardonically. One kid asked her if she had been in an accident. “No I have brain cancer,” she said.
Holy shit.
Lucy went to school almost every day for the next few weeks. Her wonderful art teacher, Beverly, hosted lunch in her classroom after art class every day. Her friends joined her. She always got out of her wheelchair and walked into the classroom. She carried her backpack. She decorated her locker. I watched in awe.
My daughter, thirty pounds overweight from steroids, was in middle school, where a bad hair day can cause clinical depression. Her mother, crying on a bench in the atrium. My daughter died twenty days after her first day of eighth grade.
About a week later, her chorus teacher wrote me a letter. She said that she was afraid to speak to Lucy. She didn’t know what to do with a terminally ill child. She told me that Lucy walked right up to her, smiled, and introduced herself. Even in all of her pain and confusion, my girl wanted her teacher to be comfortable. She was like that.
This year everything is different. There will be no ninth grade for Lucy. We have decided to host an exchange student from China, a girl who lost her mother. I know Lucy wants us to take care of people and we want her brother to see that although we grieve, we are still here and can open our hearts to life’s possibilities.
I miss her every second of every single day. She was an amazing person, my Lucy. I am a better person and mother for having known her. She is the bravest, strongest person I ever had the privilege to meet. Stay Gold, Lucy Belle. Stay Gold. We lurve you.
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Vashni Nilon is a cancer mom, bereaved mom, and mom of Tate. She is an acupuncturist and co-founder of Lucy Belle’s Rainbow, an organization that provides art supplies for children undergoing cancer treatment.
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