My Friendship with Delaney Clements

Nicole Ricken

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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17 things I learned in the 17 years since I was diagnosed with childhood cancer.

I couldn’t have said it better myself!

Because Love Wins

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!

Age 6. :) Age 6.🙂

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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Gabriella Miller: A Shining Star

Gabriella Miller

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.

Gabriella Miller umbrella

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.

we are gonna win this war

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.

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Something bad always leads to something good

why good things fall apart

Deep inside, I knew what it was going to take to get people talking about childhood cancer.  I didn’t like to say it out loud because I wouldn’t wish this on ANYONE, even a stranger.  But I knew.  The child of a celebrity, be it in the sports industry or the entertainment business, or what have you,  was going to get diagnosed, and that would jumpstart things.  Our voices, the voices of the survivors, parents, and other advocates, are not loud enough or important enough to get heard.  I mean, seriously, we have been screaming ourselves hoarse and still not being heard.

My heart broke yet again when I heard that the Cincinnati Bengals defensive tackle Devon Still’s 4 year old daughter Leah had been diagnosed with stage 4 neuroblastoma.  Another cute little munchkin thrown into this horrible world of childhood cancer.  Her daddy is her voice, just as countless of other parents have been and continue to be their children’s voices.  If parents don’t speak up, who will?  Who will fight for these kids?

As it is, childhood cancer awareness is on the rise.  A few weeks ago, Hoda Kotb released a music video with Sara Barielles and Cyndi Lauper, doing a mashup of Lauper’s True Colors and Barielles’ Brave called Truly Brave featuring young cancer patients from the Children’s Hospital of Philadelphia.

In March 2007, Hoda Kotb underwent a mastectomy and reconstructive surgery for breast cancer, and has since been a breast cancer advocate and activist.  This makes it even more amazing that she has taken an interest in kids with cancer and has since learned that pediatric cancer is grossly underfunded.  She isn’t the only breast cancer survivor speaking up, though.  Hoda was just using her position at the Today show to bring awareness and to raise funds for pediatric cancer research.  And she did!  This childhood cancer survivor and advocate is so very grateful for people like Hoda Kotb who bring awareness to childhood cancer because it’s the right thing to do and because she saw a need that wasn’t being fulfilled.  Words can’t express how my heart soared when I watched the video for the first time, or the second time, or the third.  Yes, I cried too, but my tears were happy ones.  Finally.  Finally we are getting somewhere.

This is my plea to people with power and position:  Please don’t drop the ball.  Childhood cancer is a problem that needs to be addressed daily.  It needs to be addressed until it is no longer a problem.  I do realize that this is asking a lot, but look at it this way.  If you have children, if you love any children at all, you would do this for them.  You would speak up for them, and help them get the awareness, the action, the funding, and the cures they need desperately.  There is one pediatric brain cancer that is terminal upon diagnosis, and researchers have said if they can find the cure for that, it could lead to other cancer cures, including for adult cancers!  It is simple.  Advocate.  Be a voice for the babies who need you.  Fight for them.  Don’t just be a childhood cancer advocate – be a childhood cancer activist.  

Devon Still has said there has to be a reason why he and Leah have been thrown into this fight.  He said he had a vision when he first decided to make Leah’s story public – he wanted to bring as much awareness as possible to pediatric cancer. When his team heard the news of his daughter’s diagnosis, despite having released Still during preseason, they signed him to the practice squad.  This let Still focus on Leah, and also let him keep access to the NFL health insurance plan to cover Leah’s treatments.  He has now returned to the regular roster, and the team has decided to donate all the profits from the sale of his #75 jersey to pediatric cancer research.  To date, sales have reached the $1 million mark and counting!

As for Leah herself, she has had surgery and they have removed all of the tumor.  While not quite cancer free yet, she is well on her way!

Devon Still and Leah Still

There is Beauty in Everything

it is up to you to find beauty

There is ugliness in the childhood cancer world.  Ain’t no doubt about that, right?  But there is beauty too – in the helping hands, in the triumph of making a sick child smile and/or laugh, in the voices joined as one lifted in prayer.  There is also beauty in the grieving family and friends of a deceased child doing everything they can to ensure that one day, no one else would have to suffer the way they did, in the way their child did.  The saying “beauty is in the eye of the beholder” only goes so far.  If you look closely enough, you can find beauty in most everything.

I recently read a book about a little girl who, in the face of her own battle with terminal brain cancer, asked “how can we help them?”  Meaning the kids she saw stuck in the hospital with only literal windows to the outside.  I had followed Jessica Joy Rees since 2011, shortly after she was diagnosed, and let me tell you, she was beautiful inside and out.  She started a nonprofit called Never Ever Give Up (which was later changed to Jessie Rees Foundation) and she distributed her trademark JoyJars to children who were stuck in the hospital.  Jessie was inspiring because she not only never ever gave up, but because she shared her light and love with others who needed it.  If you want to read her story, I encourage you to pick up a copy of her book.  Jessie found beauty in the ugliest of days and turned around and used her experience to help others, to bring sunshine and joy to the lives of others.

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Nonprofits are faced with the question of “to care” or “to cure,” and Jessie, without hesitation, chose “to care.” Because she cared.  She cared about the children she saw stuck in the hospital.  She cared that they weren’t smiling.  She wanted to bring them joy, to give them a reason to smile.  And, yes, there is ugliness in childhood cancer.  Much more than any St. Jude commercial is willing to show.  There is grief.  There are tears.  There is screaming.  There are pokes, throwing up, being too weak to get up and play, being connected to so many wires and tubes that it is hard to tell where one begins and and another one starts.  There are children learning about death and loss the hardest way imaginable.  There are children losing pieces of their childhood slowly.

But there is also hope, hope that people will start listening to our cries.  We continue to talk about it.  We continue to write about it.  We have hope that one day, the right ears will listen, and the right eyes will see.  Until then, we will take the beauty in whatever way we get it.

Common sense is advocacy to me

if you don't like something

There is this quote by Gertrude Stein that goes:  “Everybody gets so much information all day long that they lose their common sense.”  At first, I did not understand what that meant.  I asked around.  Friends told me what they thought it meant.  The common answer was “don’t believe everything you hear.”  It’s the age of the internet, and information is out there, free for the taking – or in some cases, not free for the taking (meaning you have to pay for it, for instance, online college classes). I decided to put a childhood cancer awareness spin on it, seeing how it is still September and Childhood Cancer Awareness Month.

Childhood Cancer is not rare.  It can strike any time, any place.  It does not care if someone is not aware that kids get cancer.  It is common in the childhood cancer social media community to think that all the cancer kids are at St. Judes Research Hospital, and that they will be fine, just fine before that someone’s child is diagnosed.  It is common to think childhood cancer is very rare, and it is equally as common to think that the only cancer kids get is leukemia.  If only…

And doctors themselves call it rare…  “I’m very sorry to say that your child has a rare form of childhood cancer and we need to start treatment immediately.”  Um…  if it was rare, why is pediatric oncology a viable career choice, and why are pediatric oncology wards always full?

Don’t believe me?  Go visit one and see for yourself.  Trust me when I say it would be the best day ever when every bed in every pediatric oncology floor in the world is empty.  It would be the best day ever when pediatric oncologists are out of a job, and can be regular pediatricians, and cure a cancer on the spot, or within a few days or weeks.  Maybe I’m just dreaming.  Maybe I am just telling fairy tales, but I know this for certain:  heaven is full of children who should not be there.  They should be here, healthy and whole, living their lives.  But where these children once were, there is only silence now.  And tears.  Lots and lots of tears.

Think of it this way .  If, every single day, 43 families are told, “your child has cancer,” that adds up to 1,290 children this month alone, in USA.  If you stretch it worldwide, the number is unbelievably large.  Bear in mind that math is not my strong subject…  in USA that means 15,695 kids are diagnosed annually, and even a larger amount of children are still in treatment.  Numbers can fluctuate year to year,and even day to day, so sometimes it is more children diagnosed every single day, and sometimes less.  But the fact remains that even one child is too many.  Children should not have to fight diseases with names they cannot pronounce.  Older children should not be spending their time in a hospital bed, or a couch at home, too week to get up.  They should not have cancer, period.

It is mind boggling to me how many people look the other way when confronted with the truth about childhood cancer.  I have written so many letters and emails to politicians and always get the typical form letter back.  Thanks, but our children deserve more than that.  I know my niece and nephew do.  My niece, who is 5 and a half, believes that when you are sick, there is medicine to make you better.  She knows that when I was little I had cancer, and she knows I got even sicker even though I was taking medicine (chemotherapy) for the cancer and that it damaged my brain stem.  My nephew is almost 5 months old, and his face brightens into a smile when I talk to him.  That is innocence.  There is nothing I wouldn’t do for them, and so I fight…  I fight because I know the truth.  I know childhood cancer is not rare, and that tomorrow or somewhere down the line one or both of them could be diagnosed with cancer.  I pray that they won’t…  I pray for every child I know because I know it can happen.  It is like a constant fear that I have…. everything is cancer until it is not.  Everything.

Common sense is advocacy to me because I can’t let it go.  I have to do something, be a part of the solution.  Do you know there are 12 different types of childhood cancer and about 200 subtypes?  Did you know that the USA government only gives the National Institute of Health only 4% of the federal budget for childhood cancer research?  Adult cancers get 96% of it!  And researchers have said over and over that a cure for childhood brain cancer could lead to other cures, including for adult cancers.  Right now, grieving parents are donating their children’s tumors after death. Cancer is the number one cause of death by disease in children.  The number one cause of death!

In what universe is this okay?  You are now aware.  Please do something.  Please pass this on.  Share it.  Scream it.  Don’t look the other way.  Tomorrow, your child may be thrown into the fight of his or her life.  How are you going live with yourself if you are silent today?