Monday, August 21, 2017

Not Justifiable



I have been struggling with faith.

The first time Grace had cancer I didn't known I was a raging co-dependent. I thought God didn't want bad things to happen and when they did I assumed God made a mistake. I couldn't bear to see God making mistakes so I often tried to compensate for him. When Grace got cancer the first time I assumed if I could (insert good deed) then it would explain why God allowed it. It wouldn't be God's mistake if we saw something bigger and better come from it that outweighed the bad. Then it would seem like God had a plan all along and he just used cancer to prove how good things work out for those who love him.

And none of that is or was true.

God allows hard and bad things to happen. God is in control and he allows horrible things to happen and it's not because it was an accident, or an oversight, or because he's evil, or punishing people. We know this because he allowed Adam to sin. He allowed John the Baptist, Paul, and James to be beheaded and Peter to be crucified. He allowed Jesus to die on the cross. He allows many horrific things. But allowing is not the same as wanting or approving or causing it.*See explanation below

Life is hard. Horrifically hard on Earth. Because Earth was never meant to be heaven. When Adam and Eve brought sin into the world the physics of entropy began like a cataclysmic time bomb that worsens each day. Everything has been breaking, humans and the Earth itself, since sin entered. Our hope isn't that God will make this world perfect now, but that he's made a way for us to join him in heaven where everything is healed. I understand that now.

So that's why it's different this time.

On one hand, I don't know if anything, as good as it might have been, could justify the pain my daughter endured from cancer. (Still God brought many good things out of that time and out of our pain). This time I'm not trying to justify her cancer. I don't want to and I know I can't. To be honest, this time hurts my heart a lot more than last time. A lot more. We know what's to come and I'm terrified. I'm angrier at God than the first time. I'm more broken. And now that I have feelings I hurt. Some days I just want to go back into denial and pretend I can make things better by finding ways to outweigh the bad. But I can't. There is no justifying a child suffering cancer.

And I was struggling recently, because I thought that I didn't have faith in God because of how badly I have been hurting these last two weeks. I haven't felt his peace or his presence, and the first time Grace had cancer God's presence was palpable. Not this time. Only spiritual silence. My anger and fear and feelings of betrayal have been overwhelming.

But God has shown me two things. He reminded me that faith isn't always smiling and singing hallelujahs. It's not saying the "fix-it" Bible verses or pretending the fear and pain away. Faith is messy. Trusting in God can look a lot like grief and still be accepted by God as worship. I'm hurting so badly, but for once I'm being honest with God. I'm trusting that I can be broken and that he can bear me. That I can come with nothing and that he can accept me and carry the burden of our relationship. I have become the comatose child again, being spoon-fed by my father. I just wish I didn't have to come back to that so literally.

The other thing he's been showing me is the church. And I don't mean a church building, or even just the church we attend, but people who have loved us. A pastor friend of mine said that God gives us more than we can bear. And he does that because we were meant to live out faith in community, and when we're supporting each other, we can bear the unbearable together.

We are surviving Grace's cancer right now because of our friends and family and community- both people of faith and those outside our faith. I haven't felt God's presence in the way I long for, but again and again our people have made God's love for us real and tangible. And so I am grateful, not only for the gift cards, meals, emails, and etc, but mostly because people have become God's hands and feet and have shown me his love when I couldn't find him. In a large way, my faith in God is being supported by them.

I am broken. I am entirely grateful. And I am loved. Goodnight.


* Long explanation: God allowing evil and not causing/approving of evil is a hard concept. Here's an example that might help. We allow the "alt-right" to demonstrate and say horrible, evil things. We allow it because we understand that liberty and freedom are worth it. If we take away their freedom of speech than we begin to live in a dictatorship, even if it's a "good" dictatorship. As Americans we do not cause their hatefulness or approve of their evil, and even fight against it. Still we allow their horrific words and ideals for the sake of freedom.

God is love, and love can only exist in freedom. Real love can't be forced. We do and say horrible, evil things to each other. And God allows it because in order for any of us to love, we must have the ability to choose love and reject evil. Therefore our freedom allows the possibility of evil things to happen. 

God does not agree with all our choices and that's why he put such severe penalties (hell) in place to try to deter us from harming each other. But we still do. We manage to hurt even the ones we love. God  saw us through the lens of a Father, instead of the lens of a judge, and loved us as his broken children instead of evil people. He had compassion on us and sent Jesus to rescue us from the punishment we deserve. We can say with confidence then, that God allows evil but he does not cause it or accept it and he carries out justice against it. And rather than destroy us, he has rescued us.

Still not satisfied with that answer? Good. That's probably why we're friends. Try reading C.S. Lewis' "Problem of Pain," for a better and more thorough answer. 

Monday, August 14, 2017

Relapse

(one week before relapse)

We didn't see it coming.

I had trained myself so well not to panic that I didn't flinch when I saw a few light bruises on her last week. After all, she had massive bruises before and her counts had been fine. Most kids relapse the first year off treatment and Grace was well past that. We thought we had dodged the bullet, even though her aggressive form of  PH+ leukemia has a 25% relapse rate (which sounds great on paper but it also means one in four kids relapse, which suddenly sounds not-so-great).

I was so encouraged by her oncology visit two weeks ago. Her blood work was perfect and when her oncologist told us, "It's time to move forward with your lives," I was entirely ready to leave the cancer world behind us. And that was a big step for me, to let go of my fears of relapse and to move forward with "normal" lives. I wanted that so desperately for our family.

Sunday night she woke up crying that her arm hurt. I gave her some Tylenol and took her to the ER. By then the pain had lessened and she told me she wanted to go home to sleep. So we did, but Chad and I were both deeply unsettled by it. Bone pain is one of the major symptoms of leukemia. In the morning she woke us up crying that her arm hurt, her stomach hurt, her foot hurt. We called the oncologist at Children's Hospital and they got us in that same morning. I packed an overnight bag, just in case.


"You know already, don't you?" the doctor said to me when they had the blood work results. Her platelets were at 33k and they found 11% "blasted cells," or leukemia cells. The doctor held me while I sobbed and brought me tissues. The nurses watched the kids while I called Chad and the family. These were some of the same nurses who sang to Grace when she rang the "finished treatment" bell and they had hugs for me as well. When Chad arrived we told the kids. Grace first wanted to know if she would die, and then if her hair would fall out, and then if she could play with the new Legos her daddy brought. And in less than a minute she was settled with the news. Luke was similarly receptive.

It's been eerie how quickly we all fell back into the cancer lifestyle. At the hospital, surrounded by nurses and doctors and other families we know and love, it almost felt normal. Like an extension of her last cancer. It didn't really hit me until I went home Sunday night to spend time with Luke and sleep in my own bed...and Grace and Chad's weren't there. That's when I knew it was real.

Even still, it's a fleeting knowledge because "cancer" is a term, not a tangible thing, and refuses to be understood as such. It's almost always like that. Talking to her oncologist about her chance of survival seemed subdued. Buying new headbands for her soon to be bald head felt like a funeral. It's in the details that cancer becomes an understandable reality.

When I do grasp some little corner of understanding, it comes hard and fast in the most unexpected places and times. In Target today, buying decorations for Grace's hospital room, I was nearly knocked breathless. But before the emotions reached my face I had it back under control. Which is good, it's a coping mechanism necessary for cancer parents. Also it's bad because late at night when I try to unravel the knowledge of it, I can't. The emotions don't obey my will, they come when they want and it's almost always at a time when I can't let them.

In Celebrate Recovery and through therapy I had to learn how to cry again. I had become too good at controlling my emotions, the first time Grace had cancer, until I had deadened them completely. I've since learned that having emotions is an important part of being human. I am trying to balance that knowledge with the reality that I don't have time to feel every feeling because my life isn't just about me, it's also caring for my two highly stressed-out and suffering kids. So I know that there's time to feel sad but there's also a time to put on big-girl-undies and laugh in the face of fear. Which is also a critically important part of being a cancer parent.

Grace needs me to model both for her, so sometimes I let her see me cry and sometimes I make silly faces instead. And who's to say what is too much and what is too little? The CHLA therapist tells me I need to worry +less if I'm doing it all right, because there is no "right" in this situation.

There's nothing right about kids having cancer...but still goodness is here if we look for it, which is also a critically important coping mechanism necessary for cancer parents. I find it in the love of our friends and family, in the care of her medical team, in the love Chad and I have for our kids and they for us, and in the love of God. It's those moments of goodness we will hold onto when things get hard.

Anyhow...I have to get to bed. I rarely have alone time and at night when I stay up this late (10pm) we inevitably have a thousand wake ups. Goodnight friends.

Friday, July 7, 2017

Comatose

I graduated from Celebrate Recovery yesterday. I wanted to share a letter I wrote to a friend that explains the freedom I've found in Jesus during my recovery. Dear friend, I got the impression that you consider your addiction as a time of failure. Maybe I was reading into it, but just in case, I want you to know I don’t think of it that way. I want to share with you why I have “great is thy faithfulness” tattooed on my arm. Towards the end of that first year when Grace had cancer I lost all faith in God. I had reached a point when I literally had nothing left-- nothing left to believe with, nothing left to trust with. I was not at zero. I was in the negative and by a very dangerous amount. It was a time of total silence when I did nothing. Weeks passed. He provided everything during that time…and I didn’t care. He was like a Father tending to his comatose child. I was the child who repaid the kindness by peeing on him. I had nothing to reciprocate but brokenness. At the time it didn’t seem like an intimate moment because when you’re the one peeing on God, it’s not very nice to know you’re doing that. It was a time of shame for me because I had always imagined myself to be a potty trained Christian. I thought I had an immovable faith, and I think others might have thought that of me too. For a long time I saw that break of faith as a time of failure. But watching a Father who has his invalid child draped across his lap as he tries to spoon enough oatmeal into her mouth to keep her alive, it’s an intimate, tender moment. Our God is the Father who needs nothing from his comatose child. He doesn’t need the child to recover and repay him. He doesn’t need to have everything work out so he can look back and say it was worth it. Even as the child drools oatmeal out the side of her mouth, and even when she hasn’t language or even the recognition to thank him, that Father is complete in the moment because his love was never dependent on her. He was always completely sufficient in his love and the opportunity to lavish that love on one not capable of reciprocating…that is the love of our Father. And because of his abundance of love I became the beloved even as I remained the invalid. Before Grace’s diagnosis I really did see myself as self sufficient in my faith. I built my identity around that. I thought myself to be unshaken, impenetrable, and unfailing. I imagined myself as being so self sufficient that I could save others without being broken myself. And pretending to be that when Grace was sick was the thing that broke me. Because of therapy and Celebrate Recovery God has been able to destroy the identity I had built for myself. God showed me that I have always been the invalid. I have always been the prostitute in the gospels. And when I was able to accept this truth I loved him as only a forgiven prostitute can. I imagined that having been healed and redeemed I could now move forward in faith. Again and again God has been preventing me from that. He knows I am so inclined to return to my old identity of being “the faithful.” It may not be true for others, but for me, I am to remain the invalid. Permanently. I am to remain wholly indebted to his love. The breaking process has been painful because I valued my identity. It was safe. It was admired. It gave me power. It was painful and humbling to crawl back to being broken and destitute. But that’s where God meets me every time. And like the one who has been forgiven much, I love him much. Very much. It’s been interesting because lately my brokenness has become a dear friend. I value my weaknesses. I love that I have such fragile faith. I love it because every time I acknowledge that it’s all I’ve ever been, that’s when I’m the child being spoon fed on my Father’s lap. And the beauty of that situation thrills my heart. I love to see God act in such humility and sacrifice for one so unworthy. And I am so blessed to be an unworthy one. That is why I got the tattoo. I am so prone to wondering from God, so prone to return to my false identity. I figured if I inked it on my arm I would never be able to run from the truth that he will be faithful even when I have no faith at all. My faith is now about his great faithfulness, not mine. So that’s why I don’t see your addiction as a failure. I see it as brokenness and the time when you found who you were all along. Who we all are. All the time. We are all so broken. So human. So deeply loved. I hope my sharing that is somewhat helpful in some way, Melissa x

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!


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