Being a cancer mom

I'm Grace Ellen's mom. I wrote this blog post when I had begun advocating for the SSFL cleanup and before my daughter's relapse in August 2017.

I first heard of the Santa Susana Field Lab when Grace was diagnosed in early 2014. A family member sent me paperwork on it. I didn't read past the headline before throwing the article in the trash. We live less than five miles from the site. To think I somehow contributed to Grace getting cancer by living near a toxic site was too painful, so painful that I was not able to deal with it at the time.

Grace needed 10x the regular amount of chemotherapy to treat her aggressive form of leukemia. She was addicted to morphine at four years old to manage the pain.

Six months after Grace was diagnosed, she and I were walking the halls at Children's Hospital during an inpatient stay. A mom opened her door and stuck her head out. "I know you two," she said. "You and your kids were at the park before my daughter was diagnosed. I recognize your daughter because she was bald. My daughter has neuroblastoma cancer now."

"I'm sorry, but that's impossible," I said. "Childhood cancer is really rare. I don't think it's possible that we could live so close to each other."

Later I went home and looked up pictures I had taken on that day at the park. Julia and her daughter Bailey were in the background of all of them. I figured it was unlikely, but possible, that they could live that close- after all, we're in a populated area. Julia and Bailey became very close friends of ours. Though two years apart in age, Grace and Bailey were kindred spirits- both sassy, bald, glam queens who loved Disney's Elsa. 

Bailey died in the arms of her daddy eleven months after being diagnosed with nueroblastoma cancer. She was two years old.

I met a different mom in the CHLA oncology clinic where both our girls were getting chemo that day. During our conversation I realized she lived over the hill in Simi Valley. "We're probably a few miles away, as the bird flies," Lauren said. I didn't like the sound of that, but I accepted it as chance.

Her daughter Hazel is currently fighting nueroblastoma for the third time.

"Yes, my son has an eye-brain cancer, we used to live right near you when he was diagnosed," another mom said when she was commenting on my "Childhood Cancer Awareness" decorations on our car. "Our neighbor's daughter was nineteen," she said, "and had the same cancer my son did, the same year too. She died from it." I asked where they had lived. They lived on my street.

That's when I decided to try to find out if there was something in our community causing pediatric cancers. I was part of a Facebook group for local cancer parents and we decided to start mapping ourselves to see where we all lived. We found lots of kids with cancers in West Hills and Simi Valley, but it still didn't seem absurdly high...but it was alarming.

That same month, September 2015, I heard that the Santa Susana Field Lab was hosting a community forum where they would tell us if the site was toxic. I attended along with five or six other cancer moms. The Department of Energy scientists told us that there was no elevated cancer risk to the community. They showed us charts and graphs of how much toxins were on site and the risks to our families. At the very end of the presentation they informed us that most of the charts shown had been hypothetical. If my memory is right, when I asked to see the real numbers (I wanted to see toxicity levels, and exposure risks, etc.) I was told the real statistics were very scientific and difficult for people "like me" to understand- even though it was meant to be a meeting for the community- for people like me.

It wasn't until months later that I discovered the scientists had lied to us. There were plenty of EPA Reports that proved elevated cancer risks in our community, and they knew it. 

I left that meeting feeling like the people who were meant to protect us were keeping secrets from us. I became even more afraid, I was consumed by anxiety and the feeling of powerlessness.

After that I climbed back into denial. We thought about moving but for a dozen reasons we were unable to. I stopped looking for kids to add to our map. I stopped thinking about the SSFL, except that I didn't let the kids eat oranges from our tree anymore. I focused on my family and getting Grace healthy again. I couldn't deal with the concept that danger was in our backyard.

I was in full denial.

I still panicked every time my kids got a bruise. PTSD would probably be the more appropriate term. Not only was I afraid that Grace would relapse, I was terrified my son would get cancer too. This fear only intensified with time. Whenever we went to the park, and there was a fair-head baby with little or no hair, I panicked. Heart racing, my feet were rubber, mouth dry, dizzy headed...a full panic. Like a stalker, I'd follow that kid around until I could determine that they didn't have cancer. I started to dread going to the park. Again, this wasn't something that was getting better with time...or therapy.

Every time I panicked it was because I was still afraid of the SSFL. I was afraid that another child had been diagnosed with cancer because I was too afraid to tell our community of the dangers. And I was too afraid because I wasn't even sure what those dangers were. I didn't want to cause a panic if the site was safe like the SSFL scientists claimed. And it hurt, it hurt me to the core of my mommy identity, every time I worried that I was keeping my children exposed. I felt so completely powerless. It was easier to stay in denial. So I stayed in denial.

A year later I was informed by a trusted SSFL advocate that the Department of Energy was trying to get out of their 2010 promise to clean the site and that we had only weeks to let the community know about the situation if there was any hope of a cleanup. Otherwise the toxic and nuclear contaminants would be left there permanently.

During that year in denial, I had been going to counseling more and I had started Celebrate Recovery at a local church. Step one: I had to admit that I am powerless... and somehow this gave me freedom to let God heal my hurts, knowing that He is in control and I am not. I started to learn to trust people again, and how to work through fear instead of run away. I learned that I can be used by God even when I am utterly broken, powerless, and small.

I decided denial was as painful as it would be to do something to help. 

I started reaching out to other cancer parents I knew. They helped me find more kids in our community with cancer. Every time I add a child to the cancer map, I have to take time out after to grieve. Every time. It was like Grace being diagnosed all over again. The emotional pain has not lessened, and I don't think it ever will. Still, I will continue to seek out the truth.

I reached out to a good friend who is a statistician and with her help we started to do the math with all the new kids we now had on our map. Using imputed data, we discovered it is very likely we are over the national averages for Rhabdomyoscaroma, Ewing Sarcoma, and Optic Pathway Hypothalamic Glioma (eye-brain) cancer. We think that if we find more children with cancer (as our map mostly shows a non-Hispanic demographic) we will quickly be over the national averages for neuroblastoma, and many types of brain cancers.

I found children with absurdly rare cancers, all within 20 miles of the SSFL, and I mean absurdly rare, even in the rare world of childhood cancer. Ewings Sarcoma has about 200 cases a year. 200 out of 73,941,848 children in America. We had two teens, from the same high school, the same year diagnosed with that disease last year. 2 out of 200. That's 1% of America's population at the same high school in West Hills. To be clear, the West Hills is not 1% of America's population. It's 0.01%.

We assumed if the area was dangerous no one would let us live here. 

We live here. It's dangerous. And we are given the unfair burden to fight for a full cleanup, instead of trusting the polluters to do the right thing without enforcement. This truth often makes me want to slip back into denial.

Then I think of my daughter Grace, that she was addicted to morphine at four years old to manage the pain from her chemo...and I can't. I can't be in denial anymore. No child should suffer cancer, and no parents should suffer the death of their child. Not when we can stop it-and we can by demanding a full clean up of the Santa Susana Field Lab.