Sunday, March 19, 2017

It's time to start again

I haven't blogged in a long time. I feel like maybe it's time to start again.



I feel like God has given me a job to do, to advocate for the children in my community with rare cancers. I feel that God has opened doors for me, like on Monday when I was able to join other SSFL advocates  to talk to Assemblymember Matt Dababneh's staff. And on Tuesday when I was able to speak at the Los Angeles Supervisors' Board meeting. These are amazing opportunities that I never wanted.

They deplete me emotionally, because when I go, I am admitting how deeply cancer hurt Grace. I have to try to convince people more powerful than myself to protect us. I have to look the problem in the eye and pretend to not be scared.

I am scared. 

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 5 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.

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 that day and I remember her face. 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- sassy, glam queens who both loved Elsa.

Ten months later I attended Bailey's funeral.



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," she said. I didn't like the sound of that, but I accepted it as chance.

"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 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. (Copy of the 2015 SSFL slide presentation can be viewed here). I attended along with five or six other cancer moms. They 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 they 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.


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. 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. It was 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.

Four weeks ago, 2017, 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. And even though it continues to be deeply painful to me as I advocate for the cleanup, at least it's pain that's going to bring healing to our environment and will protect other children.


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's 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%.



Rhabdomyoscaroma has 370 new cases each year. We had 5 children over a three year period- an absurdly high number for such a rare cancer. The Optic Pathway Hypothalamic Glioma (eye-brain) cancer has 25 cases in America. That's 25 out of 74 million kids. And we had 2 of them on the same street, the same year.

10% of America's children with this rare eye-brain cancer were living on my street. 

  • Then there's my daughter's PH+ Leukemia, 1 in 1,000,000 children get it every year.
  • A teen with APL Luekmia, 1 in 1,000,000 children get it every year.
  • A baby with LCH, 1 in 2,000,000 children get it every year.

How can we look at these numbers and keep assuming it's a coincidence? 

These are facts that I can now state with a controlled voice because they're numbers that I've been reciting a lot these last few weeks. But when I hold up the photos of these kids who belong to these number, I break. I know, or know the parents of, almost every single child on our map. I continue to find more cancer kids in our area daily, and it continues to break me.

I have also attended more meetings about the SSFL, hoping to educate myself, because there are days when denial is so tempting, I some days convince myself that the threat isn't real. When I learned plutonium is on site, that is one hard fact that brings me back to the reality that this isn't something I'm making up. This isn't scare tactics. They SSFL scientists use lots of words that often confuse me, but I'm not so naive to think that plutonium is safe no matter what they say. And that is only one of the many dangerous contaminants I've been learning about that will stay permanently in our hills unless we demand the full clean up.

I've also learned that there has been a lot of deception to the community. And I say this as a person who doesn't like drama and hates confrontation.  The Department of Energy, NASA and Boeing (who co-own the site) continue to claim that nothing has migrated offsite and that the site is safe.


This to me, this only proves more that the site really is toxic, that the companies responsible have been negligent, and that the dangers to our community are being downplayed.

Though the SSFL has been repeatedly reported on by the LA Times and other newspapers, no one has gone knocking door to door in the area to alert residents of the inherent dangers. No one told us we need to leave. At best, residents signed mortgage clauses like we did that made the risks seem minimal. Or if they were renters, they were told nothing at all, just like no one told us when we first rented in West Hills before purchasing our current home.

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.

If you haven't already please send a comment to the Department of Energy to ask for the full cleanup, and please sign our national petition.

Please share this post and help us inform the public that we need to stand up and demand a 100% clean up. We need fearless moms (and dads) who are willing to make their voices heard for the sake of the kids who can't speak for themselves.

Tuesday, February 28, 2017

Change.org Petition

Please be sure to sign and share our petition. Awareness is the best tool we have right now!
Click the link below"

"Parents want all the Santa Susana's Field Lab toxic and nuclear waste near Los Angles gone now!"


Tuesday, February 21, 2017


This is a map of all the kids in the area that we've tracked down so far. Every kid shown here lives within 20 miles of the Santa Susana Field Lab Meltdown. The kids in color are kids diagnosed between 2012-2017, the kids in grey were diagnosed 2010 and earlier.

There are many rare cancers on this map and you can see quickly there are distinct groupings in parts of Simi Valley and West Hills. Please know, our map is NOT definitive, and it can't give answers but it does raise LOTS of questions. Questions the Department Of Energy needs to answer before saying the site is safe.

We need as many parents as possible to come to the meeting in Van Nuys tonight to speak on behalf of all our kids. Tonight, February 21, 2017, 6:00 p.m. – 9:00 p.m., Airtel Plaza Hotel, 7277 Valjean Avenue, Van Nuys, CA (Open house from 6 – 6:30 p.m.)

We also need you to contact the DOE before March 14th to let them know you want a full clean up. Right now we're the minority, many of the people in our community are in such deep denial that they've accepted the compromised plan to leave as much as 93% of the contaminants on site. http://www.ssflareaiveis.com/

And please continue to share these posts. I'm shocked how many families in Thousand Oaks, Simi Valley, Oak Park, Agoura, West Hills, Chatsworth and the surrounding areas don't realize that they live miles from a nuclear meltdown.

You can also learn all the nitty-gritty details here: http://www.ssflworkgroup.org/, also please contact me if your child should be on our map.

Learn more about the SSFL toxic/nuclear waste site

Over 30 kids in our community have rare types of cancer. We need your help to find out if your child is also at risk. If you live in Thousand Oaks, Simi Valley, West Hills, Calabasas, Chatsworth, or the surrounding areas, you live within 20 miles from the Santa Susana Field Lab's nuclear meltdown that is still reactive and toxic. The Department of Energy says their research shows there's no risk to our community and therefore can do a less extensive cleanup of the site. No child cancer studies have been done, but we know of 30 kids with absurdly rare cancers who live in our community. The DOE says the area is safe. The cancers prove otherwise. We need you to contact DOE and let them know you want more research done (an assessment of pediatric cancers with a 20 mile radius) and/or a full clean up of the site. You must contact DOE before March 14th. If not, they will move forward with a limited cleanup and we will be left always worrying about our kids. To read more (and a link to contact the DOE at the end of the article): http://www.dailynews.com/environment-and-nature/20170113/department-of-energy-wants-to-alter-clean-up-plans-for-toxic-santa-susana-site

You can also learn the nitty-gritty here: http://www.ssflworkgroup.org/ Please share!


!

Monday, February 20, 2017

Pray for Bailey, SSFL cleanup


This is Bailey (Prayforbailey) and she is one of the 30 kids with rare cancers who live within 20 miles of the Santa Susana Field Lab meltdown, in the hills of Simi Valley. My daughter Grace and Bailey became friends at Children's Hospital Los Angeles. Bailey was diagnosed in 2014 with stage 4 high risk Neuroblastoma. She passed away in the arms of her daddy eleven months later, at two years old.

Neuroblastoma is so rare that there are only 700 cases of it nationally every year. We have five kids in the area who were diagnosed with it within a three-year span. We have lost two local girls to this terrible disease.

in 2010 the Department of Energy promised a full, complete cleanup of the site. Recently they've retracted that promise and have "alternative plans" that could leave as much as 93% of the contamination on site.

The DOE is trying to convince the community that  there is little/no risk to our kids from the radioactive and chemical toxins that remain on the site. They hint that if they were to move the toxins, it would be more dangerous than leaving it. No childhood cancer studies in the area have been done, and we're all aware that kids are more sensitive than adults. I personally know of 30 kids like Bailey from our area, so clearly leaving it is not without risks.

We need to tell the DOE by MARCH 14th that we want a full clean up so that our kids do not grow up with toxins, because the risk is real, even if they deny it. Please comment and share.  http://www.ssflareaiveis.com/

Please also consider coming to the Community Meeting tomorrow night in Van Nuys, this is probably the most effective way to influence the situation. Fill out a comment card when you arrive, so you can testify that you want the site fully cleaned up as DOE once promised to do. The hearing is at 6 pm at Airtel Plaza Hotel, 7277 Valjean Avenue, Van Nuys, CA. The open house is 6 - 6:30, then short DOE presentation, then comments.

You can also read more about it here: http://www.dailynews.com/environment-and-nature/20170113/department-of-energy-wants-to-alter-clean-up-plans-for-toxic-santa-susana-site

Ask the DOE for a full SSFL cleanup


This is my daughter Grace (Team Grace Ellen), she was diagnosed with a Leukemia so rare that only 1 out of 1 million kids will ever get it, we had lived in West Hills for nearly four years before diagnosis. We did not know that we were living only miles from a toxic nuclear meltdown in the hills of Simi Valley, the Santa Susana Field Lab. I want you to see what childhood cancer looks like. I want you to see the risk to your family, because the Department Of Energy wants you to think that leaving the waste on site will not cause any harm. "Leaving it be" means more of the contamination will migrate when it is windy or when it rains and people will continue to be exposed. And it's not just a little contamination, it's a lot and even Boeing's risk assessment reports show just how high the risk is today - in some areas, 3 in 10 exposed would get cancer, in other areas of the site, as high as 9 in 10 would. We've found 30 other children with rare cancers who live within 20 miles of the site. I'll be introducing you to them over the next few days. No study has been done on childhood cancers related to the site. We want answers, and we want a full cleanup. I'm asking that everyone lets the DOE know that leaving contaminants on site is not acceptable. Using scare tactics to make us think the site migration is more dangerous is not acceptable. Refusing to use less populated roads for the migration, not acceptable. Not having a full survey done of the risk to children in our communities, is completely not acceptable. You MUST contact the DOE by March 14th in order to have a say. Please contact and share this post. http://www.ssflareaiveis.com/

Wednesday, January 18, 2017

January 18th



In January 2014 I had taken Gracie to her pediatrician because of her bruises. They were small spots on her forehead. She had just turned four. A few weeks later I noticed larger bruises on her legs and arms. It didn't feel right but the doctor said she was fine, that she was really active. 


Finally she got a gigantic bruise across her side that looked like I had thrown a brick at her. The doctor did some blood work and sent us home. I wish I had listened to friend who told me to take her to the ER but I was too afraid. I didn't listen to my mother's instincts. To this day I am deeply wounded by this memory and angry at that doctor.

I remember lying on the couch with her while Luke napped. She never cuddled before, she was too active. We played the "what if" game. What if cats could swim? What if broccoli was made out of ice cream? What if we could fly? I remember knowing then something was wrong. Even still I waited for the doctor to call.

It was three years ago today that they called. It was a Saturday. I had just put both kids down for a nap, Grace had only started napping again the week before. She was tired all the time.

"I'm sorry to tell you this on the phone, but Grace has every sign of Leukemia. You need to take her to the ER immediately."

I thought I was being prepared to pack a suitcase, thinking we might be there for a day or two. I called my parents Deva and Steve who came to babysit Luke. It was the first time, but not the last time, he would wake up with his mom and sister gone for weeks. To this day he panics if he wakes up and I'm not home for any reason.


We went to ER and Grace was poked again for blood work. My mother-in-law Judi met us there. We were there until 1am when we were transferred by ambulance to Children's Hospital Los Angeles. Grace chatted with the EMTs, telling them she was a ninja and that she practiced every day. That's why we called her the Ninja Princess, because of that first night.


Grace was so tired. She had been awake the entire time. At the end of the ambulance ride she fell asleep. They admitted us immediately the CHLA's 4th floor. The oncology floor. I remember seeing the playground toys in the hospital hallways. That's when I started to realize what was happening.

They woke her up again. More blood work. That was traumatic for her, though the nurses were so caring and even had a new toy, an Ella Barbie, for her. Chad slept on the parent bed (mat) and I slept in bed with Grace. We would be there for over a week that first stay.



On January 21, 2014, her doctor confirmed Leukemia. A few days later she had a raging infection and fever. Had she not been diagnosed in time, we would have been at home and I would have given her a Tylenol and sent her to bed. Who knows if she would have woken up. Her cancer made infections deadly. I thank God for getting us there in time to have immediate access to antibiotics.

We soon found out Grace had a very rare sub-type of ALL, the +PH chromosome mutation, that gave her a 20% chance of survival. That same day her doctors helped us get her on a clinical trial that saved her life.


Cancer life started quickly. Grace was four. We had to teach her that wearing masks everywhere was fun (it's not). We got her used to her PICC line they soon gave her, and taught her not to pull the line out of her arm. She learned to swallow pills that first week. We taught her that even though Daddy and Luke couldn't stay with her every night at the hospital, that they still loved her, and that eventually she could sleep in her own bed again. She had to start wearing diapers again at night. She had to get used to anesthesia and to always pulling her "tower" with her medicines and blood transfusions with her. We learned hospital protocol and got used to being woken up all night and napping through the day. We prepped her that her hair was about to all fall out and that the kids on the floor without hair were nice and not scary. We had to teach her words to express her emotions and pain scale.

All of this at four years old.


January 18th is hard to remember, literally. Everything happened so quickly. All our fears were kept hidden, because we didn't want to scare Gracie. We wanted her to be brave.


I remember feeling God's peace, although there was no peace from the situation. I felt his peace so strongly that I was able to survive. Chad and I both recall that feeling, very strongly, that God was with us those terrifying first days.

It's hard to think back to the beginning. Now that her cancer is gone, it's hard to want to remember. I am still healing. Our family is still healing. But we have so much to be thankful for, especially for all the CHLA doctors and nurses and child life and everyone else at CHLA, for all the strangers who donated blood, for our family who helped us, for our many friends who supported us financially and with meals, for our new cancer-tribe that understand us and love us so well.

We have been so blessed, though God used a tragedy to bring us this blessing. Most of all we are thankful for Grace, that she is still cancer free and that the 18th is nothing more than a hard memory, and not a tragic one.