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.
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.
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.
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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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.
A childhood cancer survivor and advocate
I couldn’t have said it better myself!
March 11, 1998.
We never forget the days that change our lives. We never forget the moments that change our lives, as a matter of fact. I had one of those on that day. I haven’t forgotten it. I never will.
I had been walking with a limp for about 3 weeks. I was a totally healthy, vivacious, excited little girl. Here’s a picture!
See? Right? Totally healthy. But that knee pain I had wouldn’t go away.
On March 11th, 7:35am, I was walking to the school bus. About halfway there, I fell down. There was a serious sharp pain in my left knee. I remember thinking I didn’t want to look dumb (classic 3rd grade thought process) and it hurt. A lot a lot a lot. The bus was waiting, and it was a shorter distance to get on the bus than to go home, so…
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Twelve years ago today, a gift was born into this world. Her name was Gabriella Victoria Miller, and she lived every single day to the fullest. Her vivaciousness didn’t come to an end when she was diagnosed with an inoperable brain stem tumor that was the size of a walnut; if anything, her light just got stronger and brighter. I remember coming across Gabriella’s Facebook page early on in her battle, though what day or even month it was I can’t say. I remember thinking she was adorable. It didn’t take long for me to fall in love with this child. She was diagnosed in mid-November 2012, and shortly after that, her family took to smashing walnuts with frying pans to symbolically smash out the tumor. She began treatment to try to shrink the tumor, to buy her a little time. But that isn’t all she did.
Every December, Macys department stores across the country host “Dear Santa” letter writing campaigns to raise money for Make-A-Wish, a foundation that grants wishes of sick children. Gabriella took this idea and ran with it, originally wanting to collect 10,000 letters. She ended up collecting 240,983 letters, raising $1 for every letter, funding Wishes for 36 more kids. But she didn’t stop there. With her parents firmly behind her, she started a non-profit called Smashing Walnuts Foundation, The mission statement is to increase awareness about childhood cancer (it is not as rare as everybody would like to think, and it is seriously underfunded despite being the number one cause of death by disease in children) and to raise funds for childhood brain cancer research.
Everything Gabriella did, she put her whole heart and soul into it. She co-authored a children’s book about childhood cancer, earned an honorary college degree and also received the President’s Medal for Outstanding Service in Cancer Awareness from Shenandoah University. She went with her family on her Make-A-Wish trip to Paris in May 2013. She was awarded “Outstanding Volunteer of the Year” and was a sought after motivational speaker. From time to time, I get on Youtube and find her clips for TheTruth365. Hearing her contagious giggling makes me smile and tear up at the same time. Eleven and a half months after her brain cancer diagnosis, Gabriella passed away surrounded by family and close friends, who promised her they will continue her work.
And they are. Gabriella’s family made the decision to donate her tumor-riddled brain to research in hopes of one day curing DIPG, which is what she had, Seven months later, her parents and little brother stood beside President Obama as he signed the Gabriella Miller Kids First Research Act. The funds from this Act go to the Common Fund at the National Institutes of Health. Gabriella’s parents and the Smashing Walnuts Foundation are now working to have the funds allocated. I have heard it said that fighting against the injustices of childhood cancer is a way for bereaved parents to continue taking care of their children after they are gone, and I understand this completely.
Thinking about Gabriella has long since soaked into who I am at my core. She was born on this day twelve years ago, and it’s also my mom’s birthday, and the 32nd anniversary of the day I was diagnosed with stage 4 neuroblastoma. One night, late last summer, I had a dream about Gabriella. She was happy, and what’s more, she was healthy and perfect. We both were untouched by cancer. In the dream, I took Gabriella to get pedicures, and then we went to a drive-in movie. We sat in the back of a truck in a lawn chair, her in my lap with my arms around her and so many blankets piled on top of us. She kept poking one of her bare feet out from under the blankets and giggling. How I reveled in the sound! I saw Gabriella’s mother, Ellyn, in the crowd a few yards away and tried desperately to get her attention, to let her know that Gabriella was with me and was okay. But then the dream changed, and I was suddenly chasing Gabriella through a tunnel of light. That is when the dream ended, and I woke up. I was frozen in bed for the longest time, thinking, “Wow.” I believe that Gabriella paid me a visit that night. She was reminding me that even though she’s gone, she is still here in every single way that matters. She was a shining star to everyone who knew her and of her, and she remains so to this day.