Christine Brouwer founded Mira’s Movement in 2008 after her daughter, Mira, died at the age of 4 from complications of treatment for brain cancer. The organization supports families whose children have been diagnosed with cancer and advocates on behalf of children with cancer and their families.
My daughter Mira, a beautiful, funny, and smart little girl, was diagnosed with a brain tumor, one week before her second birthday. From the moment my husband and I heard this awful news, we have wanted to know “Why did this happen? What caused her cancer?” Today, five years since that initial diagnosis, these questions still haunt us, especially because Mira is no longer with us. Sadly, there are thousands of parents around the country who are struggling with the same uncertainty.
Although there are few definitive answers to the question of why children get cancer, I know that many of us have a strong intuitive feeling that something in our environment is causing our kids to get sick. I will most likely never know what caused my daughter’s cancer, but researchers are finding more and more links between the hazardous substances in our homes and workplaces and cancer and other diseases.
Mira was 23 months old when she began to complain of headaches. A week later, she began to throw up once or twice a day. A week later she began to sit on the couch for longer periods of time. Yet another week later, she was refusing to walk. After 4 weeks of symptoms and tests with no clear answers, her doctor sent her for a CT scan. Moments later, we were looking at an image on a monitor that the radiologist was explaining showed hydrocephalus (a build up of fluid and pressure on the brain). He said Mira would need surgery immediately to relieve the pressure in her head. She had a brain tumor.
We were about to embark on a journey that I had never imagined. A parents’ worst nightmare is for their child to be diagnosed with a life threatening illness. I was about to watch my 1 year old, and my family, go through hell.
Mira had 10 hours of surgery the next day during which the surgeon removed only 65% of her tumor. She was on a ventilator in the pediatric ICU for a week when it was determined that she needed a tracheotomy. On January 27, her second birthday, she had two surgeries to insert a trach and a feeding tube. You’re now only beginning to get the picture.
Mira’s treatment included ten more surgeries, five cycles of chemotherapy, a stem cell transplant and two radiation treatments. After 15 months of treatment and side effects, Mira had finally beaten her cancer. We celebrated every step toward recovery and normalcy. She began pre-K the following Fall and loved school and her friends. On her 4th birthday, January 27, 2008, she woke up complaining of dizziness. An MRI the next day confirmed our worst fears—her tumor had returned. She had another successful surgery at NYU Medical Center, and in March began another treatment regimen. A few weeks later, while on vacation in Florida, the treatment made her unexpectedly ill. Mira became very sick, very quickly. We took her to the hospital in Tampa, where she was admitted. She was moved to the pediatric ICU two days later, where her body was unable to fight any longer. She died 4 days later.
To properly understand why each of us needs to care so much about eradicating the causes of this disease, I believe that you have to envision a child that you love going through this hell. Our children are not statistics.
In my personal quest for an answer to what caused her cancer, I have run through many possibilities: Was it the new bed we bought at the start of my pregnancy? Was it the wooden frame treated with polybrominated diphenyl ether (PBDE) to make it fire resistant? Did that PBDE make its way into my bloodstream and to my developing baby? Was it dioxins from cleaning chemicals used in our household? Was my minimal use of bleach for laundry and cleaning enough to expose myself and my baby to harmful levels of dioxins? Was it from the fumes of the volatile organic compounds (VOCs) released when we painted in our house? Clearly, part of my dismay is that there are so many possible carcinogens that we are exposed to. And then we hear that several children’s bath products have ingredients that can combine to create formaldehyde. Could exposures from multiple sources add up to cancer?
In the summer of 2010, President Obama’s Cancer Panel Report was released, stating that our environment is probably much more to blame for the incidence of cancer than we had previously acknowledged. Interestingly, the American Cancer Society made a statement in response in which they said that Americans needed to worry less about the environment and make better lifestyle choices for themselves. Clearly, they don’t speak for children with cancer.
Our government can be slow to make changes in policy, not wanting to dampen business freedoms and profits without “proof.” I’ve heard researchers say that they remember the same being said about cigarette production and sales. And now, tobacco awareness and attempts to prevent lung cancer are a given. But most would admit, it was about 30 years too late.
What has become clear to me over these years is that many parents believe that our government regulates harmful chemicals and protects our children and families from known hazards. When they discover that this isn’t the case, they’re shocked. We need to update the Toxic Chemicals Control Act immediately, for the sake of our children, and all who love them.