When I See You Again

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This is Kylee. She fought the same monster I did – neuroblastoma – and she lost her life to it. Her mama Misty reached out to me on Facebook, and we’ve ended up with a deep friendship. I wrote a little bit of the following post last March, when Kylee should have been turning 7. This year, Kylee has been gone for the same amount of time as she was here, and Misty asked me to repost this story (again, I only had the first couple paragraphs) on March 23rd, Kylee’s 8th birthday. I asked her if she’d like me to write a little more to this story, and she said YES!

And so here goes… For my beautiful friend and soul sister Misty and and her amazing Kylee with BIG LOVE!

When I see you again, I imagine you’d look just like this. You’d look up. You’d smile. You’d stand up and run into my arms. I’d kiss your little face like there was no tomorrow and squeeze you until you squeaked in protest. And then, you’d insist on showing me around. It’s safe here, and you were waiting for me.

“I think I only left you yesterday,” you’d say, “but I know for you it was longer. Come on, you gotta meet my friends!”

And you’d take my hand and pull me along. And it’d be okay, because I had you in my arms again, and the memories and hurt of the times you weren’t were already fading.

“You okay, baby girl?” I’d ask, and I think I’d keep on asking it because I’d have trouble believing that this is real, that we were together again.

“Mommy, look at me,” you’d say, and I gaze upon your pixie face, the face that was healthy again, full of light and laughter, and all the things you were, once upon a time.

“Kylee,” I’d say. It’s strange that I don’t cry, but maybe here in this place, there would be no need for tears.

You’d smile then. “It’s all right,” you’d say. “What happened to me doesn’t matter anymore. I know you fought for me. And I know you always fought for me, even when I wasn’t there, even when you couldn’t feel me. I know it was hard without me. But you see, there’s no need to be sad anymore.”

I’d get down on my knees and look you in the eyes. “I’m not sad anymore, bug,” I’d say. “But our family…”

“They will join us when it’s their time,” you’d say, your tiny shoulders shrugging. “We can watch them in the pond. I have a garden here, Mommy. It’s a garden just for me. But if you want, I’d share it with you.”

You’d tug me to my feet, surprisingly strong for your small size.

“You have a garden?” I’d ask when we start walking again.

You’d smile, and do a little skip, your free arm flinging out, your right hand clinging tight to my left. “It’s a ladybug garden!”

“Oh, really?” I’d say.

“Yes, Mommy. You can have anything here. All you have to do is think of it first. You can’t wish for anything bad, though. That’s the only rule.”

“Is this… Heaven?”

“Part of it,” you’d answer. “It’s bigger than you think because everybody comes here. Bigger than earth.”

I’d want to keep you talking, could revel in the sound of your sweet little four year old voice for all of eternity. You’d not age, and maybe, a little voice inside me whispered, you were waiting for me to celebrate your fifth birthday. The thought breaks my heart. It’s been decades on earth since you left. I touch my face with my free hand – my other was holding on to you – and felt my smooth skin.

“Look over there!” You’d shout then, dropping my hand and waving both arms over your head. “There are my friends. HO HEY!” You’d shout the last part and when the children in the distance saw you, they’d start waving back.

“My mommy’s here! Come join us in my garden! We’re having a party!”

“Party?” I’d ask as we walk.

“It’s what we do here when somebody comes home,” you’d explain, and you lead me past perfectly manicured lawns, houses, and other buildings, as well as buildings that weren’t for living in. I wouldn’t look too closely at my surrounding because I’m too enamored with you.

“Look down,” you’d say. “Look down at what you are walking on.” And I do, and my breath catches. Should you even breathe here? I can’t speak so I don’t ask. Maybe later.

Gold. Golden, shimmery streets. My worn out shoes look pathetic standing on it, and the moment I’d think that, the shoes disappear and are replaced by the most comfortable purple slippers ever.

I’d look at you. “Did you do that?”

You’d shake your head. “You can make things happen here just by thinking it,” you’d explain. “But you have to be careful. The angels are very strict about not doing things for personal gain.”

“Angels?”

“They will be at the party,” you’d say happily, and then you’d pull me into your garden. And I’d be surprised, but not, at the same time.

It was a ladybug garden, just as you’d said. Ladybugs scurry visibly on leaves, on the picnic tables, even on the fence.

You allow me two heaven seconds to take it all in, and then you lead me over to a pond in the middle of the garden.

“Show me my family on earth,” you’d demand, and the water would begin rippling even though nothing was happening to it. And then… and then… I’d see my three other children, and my husband, sitting in my backyard – well, it’s not mine anymore, I guess – talking, laughing through their tears. They miss you. They miss me. And yet, I’d feel peace because I am with you again and everything’s all right.

🐞🐞🐞🐞🐞🐞🐞🐞

A Case For Childhood Cancer

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We used to live on a cul-de-sac when I was younger, and every night in bed, I used to pretend it was a train taking me far away. And every morning, I’d be in the exact same place with the exact same problems.

I’ve never shared this before. It was mine. It was how I coped with being stuck in a body that I viewed as broken. How I coped with being a survivor of something I could not remember. Every day, a new place. Every day, another chance to be whole. Except it never happened. It was all in my imagination.

Imagine the thing that tried to kill you when you were a child being allowed to run rampant. Think of it as a serial killer, because that’s what cancer is. And nothing is really being done about it! It’s killing babies, toddlers, young children. It’s killing kids before they have a chance to be teenagers. It’s killing teenagers before they really experience life.

And it’s not okay! It could be your child. My story could be your child’s. Stage 4 neuroblastoma. Chemo. Radiation. Viral encephalitis. Damaged brain stem. Permanent disabilities. Hearing loss. Speech impairment. Scoliosis. Surgeries. All before I turned three. And then when I was 9 or 10, my back was bad enough to warrant a brace, which I had to wear 23 hours a day for about 5 years. It wasn’t fair.

I cried nearly every single day because I didn’t understand. I didn’t understand why I was like this. I didn’t understand why I couldn’t make myself be better. I looked at my siblings and my peers and it all looked so easy… and yet, I couldn’t do any of the things they were doing. So I escaped. I loved reading so much I started writing my own stories, creating my own worlds.

And I’m still doing that today. But I also live in the real world too, where kids are being diagnosed every day and dying too. I see this and it breaks my heart. I don’t think it was ever supposed to be this way, but it is. Back when I was diagnosed with cancer, my parents accepted what the doctors told them – that childhood cancer was rare. Today, we have the internet though. And social media. And I know better than to believe what the doctors say. My eyes and ears and heart are telling me different. My head is telling me different. My friends are either grieving for their children or fighting for their children’s lives. And you know what else? They are also the ones fighting to get more money for research AT THE SAME TIME they are fighting for their children and/or grieving. It’s a way they can continue taking care of their children after their babies are gone. But the truth is, they shouldn’t have to. Their children should still be here.

The National Cancer Institute only reserves 4% of federal funding for childhood cancer, with adult cancers getting the rest. There are 16 different types of childhood cancer, with 100 subtypes. How in the world is 4% enough to cover that? Brain cancer in children is often terminal. They are treated with made-for-adults drugs because there is not enough money for targeted treatment. And sometimes these drugs kill them. Sometimes they leave the children with long term side effects. Cancer does not discriminate. Any child can be diagnosed. Approximately 43 children are diagnosed every day. 7 more children die every day. Tomorrow, it could be your child, or a child you know. And that’s just here in USA. Worldwide, the number grows. Please stand up as fight for the children.

You can help be their voice! I realize there are a ton of worthy causes out there. But please, if you care about the future, if you care about children, please go like TheTruth365 page on Facebook and read some of the stories there. If you are on the east coast, there’s an annual Curefest Weekend September 16th and 17th in DC at the National Mall. I went last year for the first time despite living on the west coast. It was amazing. There’s a march. There’s a candlelight vigil at the White House. There’s a walk around the Mall. And there’s speeches, booths, etc. I’m planning on going back this year, and we are hoping it won’t be just us advocates there. We need the public involved to make our voices louder. We need a worldwide movement like the Women’s March that took place in January.

Come join our movement. Come listen. Come learn. I always say I would not wish my childhood on anyone, and I will keep on saying it. Forever, if necessary. I’m a childhood cancer survivor, yes, but I never should have had to fight that way. I shouldn’t have to live this way. Childhood cancer is a reality for many. Please don’t wait until it is yours too.

Dear Gabriella

Dear Gabriella, 

I am sure you already know a huge part of the reason why I was looking forward to CureFest last month was because I would finally meet your parents. Your mom and I talk on Facebook a lot, and sometimes I just send hearts. I love how they float on the screen, and I’m sure she does too. 

You’ve been showing up in my life in a big way, and maybe that’s why I feel so connected to you. Thank you for the hearts you send, and for making me smile. You inspire me so much, sweet girl, and you know I’m doing everything I can to help win this war. I’m listening. Thank you for pushing me to reach out to your mom, and thank you for our friendship. 

I will never forget that moment at CureFest when she saw me. It’s true what they say, how some souls just recognize each other upon meeting, and meeting your mom just felt right to me. I wasn’t scared at all. Later, she told me that it felt like we’ve been friends forever and we just hadn’t seen each other for a while. I agree! And when she hugged me and kissed my cheek, my mind was quiet and my heart happy. 

We took a picture with you the only way we could. 

We were able to talk for a few moments too, and I gave her some more hugs (not enough, never enough – but at least I got a chance to tell her that I love her), and she talked about your brother for a bit. I can imagine that things like CureFest are hard on him – he was 6 when he lost you, but I know you are working to make things better for him, for your mom, and for your dad. No one can take away their hurt, but at least I was able to sit with your mom and feel it with her for a bit. We held each other’s hands so tightly, and I absolutely hated to leave her. 

But I know it’s only the first time I see her. 

She told me to come back to the Smashing Walnuts booth before I left Curefest, and I did. That’s when I met your dad. Your mom introduced us, and I shook his hand. Your mom told him who I was, a neuroblastoma survivor. He asked me how old I was when I was diagnosed, and I held up one finger. I was one year old – 15 months old to be exact. 

What does it say about the world we live in when babies get stage 4 cancer and nothing is done about it? What does it say about the world we live in when 9 year olds get brain cancer and her doctors have to tell her parents there is no cure, that their precious little girl is going to die? 

All of this makes me so angry, Gabriella. I wish so much that I met your parents under different circumstances, that you were still here, and I could talk to you and you could talk back. I would even sacrifice knowing your family if it meant they could have you back, whole and healthy, as if the last 4 years never happened. As it is, I can’t do anything for your family but love them, and they already have that in spades. The love I feel for you, though, is so much stronger than anything anger can produce. Love wins the war – that is what you always knew and tried to teach us. We hear you. We will always hear you. 

Please keep on showing us the way. You lead, we follow. 

You are so loved, always. 

XOXO, 

D

Listen 

Every single person you ever meet has the ability to change your life – you just have to let them. The same is true through the gift of social media… I’ve done so much growing in the past 6 years of being a childhood cancer advocate that I hardly recognize my own reflection in the mirror. Often I search my own eyes for the answers to questions to which there are none. And I have to turn away, because I can’t stand it. 

How can the world keep on minding its own business when there are children, babies, really, suffering and dying horrible deaths? They deserve so much better. 

My sister moved to Washington DC in July, and last month, I was able to attend Curefest for the first time. Curefest is where childhood cancer foundations and advocates come together as one voice against, you’ve guessed it, childhood cancer. 

I don’t understand how people can walk on by other people screaming about childhood cancer. 

We marched and chanted: Kids with cancer are worth more than 4%. Seven children die each day, please don’t look the other way!

As a survivor, I tried staring down passerbys, but it didn’t work. I’m sure they heard us. And if I am being really honest, if the story of my life was different, I would probably walk right on by too. I would like to think I wouldn’t, though. Maybe if I carried a sign that said, “This is what a childhood cancer survivor looks like”? 

There’s always next year. 

Before we went to the White House for our candlelight vigil (Seriously, why do they refuse to light it gold for the kids?), there was one speech that truly tore me me apart… A grieving mom spoke about her beautiful little girl Kate, about how she had the “good” kind of cancer (there is no such thing) – acute lymphoblastic leukemia -90% cure rate, mind you – and how she finished her treatment in September of last year. Lindsay spoke about how beautiful those next 4 months were, and then the other shoe dropped like an avalanche – in January 2016, Kate suddenly relapsed, and then she was just… gone. 

This is childhood cancer, and this is NOT okay. 

If you really listen to us childhood cancer advocates, you should have no trouble coming to the same conclusion we have: something has got to change! 

Childhood cancer research only gets less than 4% of funding from the National Cancer Institute. Adult cancers get the remaining 96%. Children are treated with made-for-adult drugs that are harsh on their little bodies, often wreaking havoc on their organs, hearing, and bodies. Protocol has the people administering the toxic drugs (or even changing diapers) wearing gloves before they even touch the medicine. And it’s not medicine. It’s poison. I’m done sugarcoating. Chemotherapy is a poison that kills good cells along with the bad. It leaves patients sicker than the cancer inside them, and that’s saying something. 

This is me at the candlight vigil in front of the White House: 

The next day, the second and last day of Curefest, I was able to meet a lot of people whom I was friends with on social media because of childhood cancer. A lot of them have children who have passed away because of childhood cancer. I met other survivors too, which meant a whole lot to me. Growing up the way I did, I always felt so alone because all I heard was “childhood cancer is so rare.” 

That is complete and utter bullshit – #TalkIsBullshit, in the words of sweet Gabriella Miller. She spoke this truth two weeks before she passed away on October 26, 2013 from DIPG – brain cancer that has almost no viable treatment options and is a child’s death sentence. She was just ten years old. 

What crime did these children commit to deserve such a fate? Their names are carved so deeply on my heart: Elena, Jessica, Dominic, Gabriella, Erin, Natasha, Michael, Avery, Lauren, Grace, Madeline, Lily, Kyler, Ryan, Alexis, I can keep going… but I hope you get the picture. 

To the broken families, this is my promise to you – I will fight with you and for you. There is a cure. We will find it. We will make people listen and things will get done. We will be heard. We will not give up, and if you get tired and/or too sad, don’t be afraid to pass the torch for a while. We have you covered. There are more people fighting this war with you than you will ever know in this life. 

XOXO 

My Friendship with Delaney Clements

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This blog post is probably one of the most difficult I will ever write. The pain is fresh, my heart is supple, and there are never the right words for something so incomprehensibly large. A love that runs this deep cannot be articulated. It is big and important, and I feel it with every fiber of my being… So, I’m just going to do my best to tell the story from start to finish and let it speak for itself. And hopefully it makes you feel something. This one’s for you Delaney.

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My first weekend with Delaney was in April of 2015. She was fighting a ruthless battle with Stage IV Neuroblastoma, when the Truth 365 (a Washington, D.C.-based childhood cancer organization) brought us together, along with four other girls, for a special social media campaign. We all became instant best friends, and in a matter of moments these girls…

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A #MoreThan4 Letter to the National Cancer Institute Regarding Childhood Cancer

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The childhood cancer community on social media started a #MoreThan4 campaign 5 days ago.  As things stand, the National Cancer Institute only gives less than 4% to research and try to cure all 12 types and all 200 subtypes of childhood cancer.  It’s not enough.  There is no way it could possibly be enough.  We have to try to change things.  We want better for our kids.

 We are posting pictures (yes, most of them are selfies) with a sign saying 4% is not enough for childhood cancer.  Last week, we got wonderful news from St. Baldrick’s when a drug that will be used to treat high risk neuroblastoma has been approved by the FDA, the first drug of its kind, one of the very few drugs that have been approved by the FDA for pediatric cancer in the last two decades.  We’ve had to push so hard for this.  

As TheTruth365 instructed, I took my selfie, posted it on Facebook, Twitter, and Instagram with the hashtag #MoreThan4.   On my Pediatric Cancer Awareness page on Facebook, I invited people to message their pictures and I posted them as I received them, again using the hashtag.  I loved seeing all of them, and loved even more that my newsfeed was full of them.  By the end of Monday, we had it trending!  

I was a little discouraged and a lot angry yesterday when I read on TheTruth365 page yesterday that the people who work at the National Cancer Institute were annoyed by our campaign, and that they were steadfast in their belief that they were right and we were wrong.  The last straw, for me, was getting a form letter via email from them.  It was a “nice” letter – they said they realize that far too many children suffer from cancer and that they are fighting this alongside with us.  The letter also said they realize that children are not just small adults, and needed new approaches and tailored treatment plans that would allow them to lead long and healthy lives.  But most discouragingly of all, the letter did not mention whether or not they were willing to look at funding, let alone raising it.  So this is my response to the director of Advocacy Relations, Kelley Landy:

Dear Ms. Landy,

Childhood cancer is the number one cause of death by disease in kids. It isn’t going to get better unless you raise the amount that is allocated to pediatric cancer research. 4% barely makes a dent! There are 12 different types with 200 subtypes! The citizens of the United States of America are taxpayers – we DO have a right in voicing our opinion in how the money we give you is spent.

Did you know that 2 out of every 3 children who survive their cancer suffer from long term side effects? You say you know kids are not just small adults. Well, then, why are they being treated with made-for-adult drugs? Why were there only 3 pediatric cancer drugs approved by the FDA in 20 years? TWENTY YEARS! Do you know how many children we’ve lost to cancer in those 20 years? 51,100! That’s right – fifty one thousand, one hundred kids gone. There goes the hope for the future. If that doesn’t break open your heart to cancer kids, I don’t know what will. When kids die from cancer, they are losing approximately 71 years of life. They will never graduate high school, never get married, never have kids, never hold their grand babies who would have been if they had survived their childhood.

You might ask why I am so passionate about this. I am a childhood cancer survivor (diagnosed with stage 4 neuroblastoma at age 15 and a half months) with long term side effects from treatment. I came down with viral encephalitis before my treatment protocol was even over and couldn’t fight it because my immune system was wiped out. The infection damaged my brain stem. I am physically disabled, with hearing loss and a speech impairment, and with scoliosis from the radiation I received. When I was 14 I had surgery to try to correct a 69 degree curve to my spine. I’ve had 4 more surgeries on my back as well.

I survived my childhood. Barely. But the children I speak for on a daily basis as an advocate? A lot of them won’t. Why? Because the NCI thinks 4% is enough to save them. But it’s not. I wish it was. But it’s not. Parents have to worry about fundraising on top of their child’s health, or rather the lack of their health. That isn’t right. It isn’t fair to put this on them when you have everything at your disposal to give more. You continue to research prostate cancer when it has a 98% survival rate. And maybe it’s true that more men get prostate cancer than kids get childhood cancer (12 separate diseases! With 200 subtypes!), but what about the little boys who never get to grow up? What about the little girls who never get to grow breasts because cancer took their lives before they grew old enough to have them?

We advocates are survivors, parents, siblings, extended family, friends, and mostly we are strangers. We have foundations aplenty, but what we don’t have is your support and your resources and your minds. How would you feel if we lumped adult cancers into one category and gave them less than 4%? We are educating the country, the world even, and mark my words, we will be heard. It might not be until the next generation grows up and takes over the NCI, but we will be heard. Our grieving will not stop – nothing will ever replace the children we have lost – but our voices will be heard. Someday. I hope for our sake that it is sooner rather than later.

 Sincerely,

A childhood cancer survivor and advocate

More Than 4

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