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.

Monday, September 19, 2016

A Golden Lining

I used to think I could be separate from others and still be connected to God. I now reject completely the idea that Christians can be separate and please God. And standing next to each other in church does not mean I am connected. It is entirely possible to be surrounded by people and still be alone. I have lived much of my life that way. I reject the philosophy that asserts that God cares about our goodness, our strength, our faithfulness and that it's enough for us to be "good" for him.

This is an excerpt from the novel I'm trying to write:

I think Christians act according how they imagine heaven to be. I think many Christians have come to believe that heaven will be a blend of country club and orchestra concert. They’re highest goal is to have clean hands, properly clasped, and small appetites for adventure. That is not what I imagine heaven to be. I believe heaven will be like a playground. There will be order, as the playground has rules for sharing and no shoving or hitting. But the playground is also full of loudness and laughter and messes. One child might skin their knee but kisses from our father will set us running again. With encouragement from our Father we will find new courage to conquer the big slide . Two children might fight over a toy but with the guidance of our Father we will learn to be like him, full of goodness and grace. That is why I don’t bother with my buttons or my tie being straight. My heaven has no dinner jackets to practice for.

Yesterday in Church I struggled to worship because many songs we sing are about us feeling happy in God's presence. I continue to hurt in his presence and I no longer see my identity as "strong" or "good." But during worship I heard God tell me that he had allowed me to be broken because that was the only way to break off my false self. The real me was so hidden that even I didn't know it existed, but God did. And he wouldn't settle to love my false self. He wanted the real me- the broken, hurting, bleeding real me. And he allowed me to break so the real me could be found, for my sake, and for his sake of being able to love me fully.  

My identity was built on the foundation that God is good (my definition of good) and that I am strong (my definition of strong). As many of you know from my last post, those two foundations were shaken to the core. So shaken that I thought there was nothing left but empty hopelessness. Because my identity was "strong,"I never allowed myself to acknowledge  emotional pain. I was in denial. I hid my pain so deeply that I often didn't know it existed. And the little I did know of, I never let it out. I kept up appearances and kept people at an arm's length, even Chad. I even kept myself at arm's length. The pain was an area no one, not God, not even myself was allowed into.

I recently heard a sermon from Freedom church, and the pastor said that God does give us more than we can handle. He does that because it forces us to be a community, to rely on each other, and in that community we experience a unique aspect of God. I can say that this is true. It is very hard for me as friendships and openness are difficult for me, but I have felt God's love through others. I have experienced his acceptance because of others. I don't feel alone when surrounded by people...I feel known.

I have since talked with several close friends and with Chad and explained an even deeper version of my pain. All of it. All the pain, the hurt, the fears. I like to have answers and I like to be in control of myself. Being that open took away all my answers and control and left me vulnerable and I was not rejected. In fact, the acceptance and patience and love I received was so overwhelming that my hopelessness is melting. I am still in a lot of pain but I am no longer afraid of facing it alone.

The acceptance of others has allowed me to attribute it towards God. I now know he accepts me as broken. This is how community is meant to work. This is why we were called to be the body of Christ, hopelessly intertwined and dependent on each other.

I continue to struggle daily, but I am no longer afraid. I am no longer alone.

Saturday, September 10, 2016

Personal Pain

Hurting hurts worse than I had imagined.

It's made me into a not very nice person. I'm mad at everyone who can't understand my pain. I am selfish and don't really listen when others tell me their stories. I snap at Chad for any mistake. I judge those on the "outside" for the judging I imagine they're doing of me. I doubt myself. I doubt God.

It's not attractive being broken.

I've judged so many broken people in my life. Until now, I've only experienced pain that could be denied or covered up or heals with time. Then Grace got cancer and those methods no longer work. I've never had to live without a safety net before. God had always been that for me, but now I realize that it was an illusion. In my belief, that net was always going to catch me the way I wanted to be caught. It would never allow me to get hurt. God is my hope, but his safety net looks a lot less safe because I now know it obeys his directions and not mine. The potential for death is real. Pain is real. And that frightens me. God is good, but he is not tame.

I realize now I treated the emotional pain of the last two years like a lazy gardener. I would snap off the blossoms and tear out the leaves and imagine I had solved the problem. But pain is like a weed. You can kill everything that's seen on the surface, but unless you dig down into the soil and tear out all the roots, the weed will return again and again. But digging hurts and is messy. But the pain keeps returning and so I am ready to learn how to dig.

I'm starting a new step study at CR which is supposed to go more deeply into recovery. That's a good thing because I've since realized that my coping mechanisms were not healthy, and now I'm not in denial, I feel EVERYTHING and have no skills to cope with it. Every minute that isn't filled with activities is a minute that hurts me.

I'm also going back to therapy and will consider going onto antidepressants if she recommends them. I figure it's that or alcoholism*. Something has to change. A heart can only hurt this intensely for so long.

I wish I could say God was my relief. I want him to be. The problem is that I'm currently avoiding him whenever possible. He is the thing I am most afraid of and angry at. Also I'm a people pleaser (aka co-dependent) and so confrontation is hard for me. Confronting God sounds like the worst thing in the universe right now. So I return to denial like a dog returns to its vomit, though it hasn't reduced my heart ache.

Until now I always assumed, with self-will and determination, anyone was capable of pulling themselves up by their bootstraps...in the name and power of Jesus, amen. Now I see that there are some forms of broken that we can not come through unscathed no matter how much we want to. It's not always a matter of will or strength.

The comfort is that I do know God is faithful. That's why I'm not afraid to be this way. I know his faithfulness will come through and save me. God is faithful and I am not required to carry the burden of being "faithful" or "victorious". He can handle my anger and fears and doubts. Though I am afraid of him, I am unafraid of him turning away from me. I know he will not desert me in my pain. I know he is not put off by my ugliness.

I am praying that through this journey I will find God for who he really is, and not as I've wanted him to be. That I will come through this a whole woman, full of compassion and hope. I know God will lead me there. I am hurting, but I am not afraid.

"Morning by morning new mercies I see.
All I have needed, thy hand has provided.
Great is thy faithfulness, Lord unto me."

*disclaimer: the alcoholism reference is me being sarcastic. I would never choose  a horrific disease like alcoholism that would destroy myself and my marriage and my kids.