Dear Santa, take cancer, leave cures

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I know it’s a joke, but those shirts that say “Dear Santa, leave presents, take sister” or “Dear Santa, leave presents, take brother” are highly insensitive.

Childhood cancer is a reality for many of my friends. Most have lost children to it. It’s not a joke to them. I can try, but I cannot imagine how much it hurts them to see these type of things when they are out and about.

I am so sorry that the world continues to look the other way while you’re here screaming yourself hoarse about something that would be so easy to fix if more people cared and helped…

Are you saddened over a celebrity who died? I’m more upset over a 3 year old whose life was stolen by cancer. His name is Ronan. I am more upset over the 10 year old who didn’t want to die, but her cancer was terminal. Her name is Gabriella. I’m more upset about the 7 year old who beat her cancer, only to succumb to heart failure because one of the drugs she got destroyed her heart. Her name is Macie. I could go on and on… all those children who have died because of childhood cancer are many. What about the three year old boy who just passed away because no doctor could offer his mother hope? They actually refused to help her help him because they thought it was fruitless. And maybe it is. Maybe it was. But his name is Ayden. He was here, and now he’s not. All these children were.

Those shirts I see in the stores? Ask any sibling who has lost a brother or a sister to childhood cancer or something else if they’d rather have presents or their brother or sister back.

The latter would be the BEST present ever, I am telling you, if only it were possible.

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The Word “Survivor”

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I have decided that I do not like the word survivor.

I understand, of course, that there are childhood cancer survivors who wholeheartedly embrace that term and everything it entails. I don’t wish to detract from that.

However…

I do not remember a single second of battling neuroblastoma. It’s hard to feel empowered by something that you don’t remember.

The term “survivor” implies, to me, that I did something to earn the right to be here today. And I didn’t. I was two! I was one year old when I was diagnosed. I was two when my treatment was finished with me (I wasn’t done with my protocol yet when the viral encephalitis damaged my brain stem). I didn’t know what I was doing. Does anyone know what they’re doing at age two?

I may have a bad case of survivor’s guilt. Right here. Smack dab in the middle of my chest. Sometimes it leans a little too heavy to the left, splintering my heart. Why? Why am I still here when so many others aren’t? Surely someone else would be doing a better job at this than me.

I probably will never understand what I want to so desperately – what it means to be a survivor. I ofter my heartbeat as hope to others but I truly do not understand why people see hope in me. Me, in this broken body. I try. I try so hard. But it’s all so exhausting and I can only do so much.

I’m stuck. Why are things not different? Why do the people who could bring about real change ignore our pleas for help? Why do we have to beg for children’s lives to be saved? I will never understand. The doors slammed shut in our faces. Hope receding, and then growing, and then receding again.

I am so tired. I’m so tired of repeating myself ad nauseum. Look! Look, people! Here’s a dying child! He doesn’t have to die. Here’s another. She doesn’t either. But reality is reality, and they die. They’re dead. Because of you. Because you didn’t listen. Because you thought, oh it doesn’t affect me (YET!) so it doesn’t matter.

But what happens if it does affect you? You will wish you have started today. No, yesterday. Maybe even years ago. If you had, maybe there would be a cure by the time you need it.

See. See! That is the point. That was always the point.

We are not just fighting for the children who are sick now, but for the children of tomorrow who will be sick. And you were silent. You say you did not know, but oh, you did! You just chose to look away. Too sad. Too hard.

What if it was you who was too sad for people to deal with? What if you were too hard?

Think about it.

285 children are diagnosed with cancer every single day.

Every single day, there is a lottery no one wants to play but are forced to. If your name is not drawn, you get to breathe again. If it is, your world, and your child’s world, will turn upside down and inside out.

Is that what you want? You want it to be too late?

Call your senators and ask them to support the #STARAct.

That’s a start. That would be fighting for the kids, getting them what they need. And maybe one day, the word “survivor” won’t feel wrong to me.

STAR Act

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The #STARAct needs more Senate cosponsors. It’s the most detailed childhood cancer bill we have ever seen, and we need to get it passed. It was up for a vote last year, but didn’t go through. This meant we had to start all over again getting support for this bill. Please give your senators a call and ask them to cosponsor the bill.

“The STAR Act would expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, enhance the quality of life for childhood cancer survivors, and ensure publicly accessible expanded access policies that provide hope for patients who have run out of options.” ~ Four Square Clobbers Cancer

I am a childhood cancer survivor. I fought neuroblastoma as a toddler, and it changed everything for me. I always say that I wouldn’t wish my childhood on anyone, and this is why, at age 36, I am still fighting.

It’s the same battle, but different too. Instead of fighting for myself, I now fight for others. Why, you ask? Because nothing has changed since the early 1980s when I was sick. Childhood cancer research only gets 4% of the National Cancer Institute’s annual bugdet, which means that children with cancer are treated with made-for-adult drugs that wreak havoc on their still growing bodies. Childhood brain cancer has become the #1 disease killer of children. There aren’t any pediatric brain cancer drugs. There are just 4 childhood cancer drugs that have been developed since the 1980s. Compare that to the 190 adult cancer drugs, and you can see the problem.

Every single day, more than 40 kids are diagnosed with cancer. And every single day, 7 more children die. That’s just here, in the United States of America.

If all you know about childhood cancer is what you see on the St. Jude Children’s Hospital commercials – the happy, smiley bald kids – I implore you to look deeper. Do your research. Not everything is what it seems to be. Childhood cancer is kids screaming and thrashing about while doctors and nurses physically restrain them so they can access their ports – to give chemo or draw blood. It’s nights spent vomiting and crying. It’s little bodies bloated because of steroids given to counteract the effects of radiation to the brain. It’s questions from little mouths that strike terror in parents’ hearts because they don’t know how to answer. It’s a child who survives her cancer but succumbs because one of the drugs she was given damaged her heart in irreparable ways. There is more horror.

There is so much injustice here. And you… you can help. All you have to do is stand up and say, “This is wrong. How can I help?” And I’d tell you. You help by listening. You help by speaking out against this, speaking up for the children. This is happening because children don’t have a voice – they don’t vote – but with your help, we can change that. Let your voice be theirs. Let your vote be theirs.

They just want to live. They just want to be children. We can help them live. We can help them be children.

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