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.

Sweet G 2

shining star quote

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.

NEGU book cover

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?

Ask and You Shall Receive

image

“Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you,” ~ Matthew 7:7, New Living Translation

Last night in Times Square was glorious. I wasn’t there myself, because I don’t live anywhere near New York City, but I imagine it was. When I saw the above pictures for the first time on my Facebook newsfeed, I was moved to tears. Why? Because finally, finally, FINALLY, someone heard us childhood cancer advocates asking. Someone heard us knocking, and we weren’t even knocking on their door.

The Empire State Building said no to us. They slammed the door repeatedly in our faces. They didn’t do it once, or twice, or even three times. They have refused us for at least two years, bereaved parents, survivors who lost part of their childhood fighting cancer, parents of current warriors scrambling to get the same amount of recognition for their babies as women with breast cancer get in September/October. Yes, stores are already filled up with pink everything. But September is for the babies, the kids who are too small to have a voice themselves. It is Childhood Cancer Awareness Month.

What happened when the Empire State Building said no? There was bad publicity on both sides. Our side, the side for the kids, was painted as vicious. Really? Anyone who has ever loved a child can tell you that there is absolutely nothing he or she wouldn’t do for said child. Their side was painted as cold and uncaring. What happened? News stations picked up the story. Times Square got wind of it. They stepped up for the kids.

Can you imagine being a parent of a dying child and he says to you, “I am never going to grow up to be anything”?

Tony Stoddard can, because that child was his son Cole. He’s gone now, but Tony can now look up at the sky and say, “You are something, Cole.” Cole and every single child who lost their life to cancer meant something to this world, to their families, to their friends, and even to the strangers who loved them and watched their journey and prayed for them.

This is why we fight. This is why we are getting somewhere. A love like this… it can move mountains! It was love that lit Times Square gold last night. We always say the color of the childhood cancer ribbon is gold because children are more precious than gold.

When I saw those pictures at the top of this post for the first time, I ws moved to tears because all I could think about were the children’s whose faces I see on my newsfeed every single day and all the sweet little ones who are no longer here. This is a victory. There are still miles to go before we rest, but it is something. We are finally getting somewhere. It is the beginning of hope.

Thank you, Times Square, for restoring my faith, OUR faith, in humanity.

Let’s make some gold noise!

gold ribbon for childhood cancer awareness

Tomorrow is the first day of September, and it is also the first day of childhood cancer awareness month.  As most of you know, it is a cause near and dear to my heart because I am not only a neuroblastoma survivor, but I am also physically different for having gone through my fight.  My immune system was wiped out thanks to the chemotherapy I was on and my body had zero defense against the viral encephalitis.  Picture a two and a half year old girl, burning up, sobbing, and screaming that her legs hurt. Can you see her?  That was me.  My parents rushed me to the emergency room, but it was too late.  The damage was done.  My brain stem was affected, and my body was too.  For two weeks, I lay in a semi-coma, though sometimes I would wake up and just cry.  I had been right handed, but now my right hand was curling up against my body.  At nearly three years of age, I was reduced to a newborn state of being.  I was still there mentally – people would ask me questions and I would shake or nod my head in response.  I have come a long way in the last 30 years, much further than my doctors back then ever thought I would, but I am never going to be the same.  I am never going to experience true independence.  I will never live on my own, I will never drive a car, and I will never have children of my own.  I will never again have a strong, able body, and I will never again think of childhood cancer as rare.

Imagine my horror, when years later, when I find out not only was childhood cancer was still killing children, as it had killed my little friend Missy back in 1984, but it was also seriously and terribly underfunded.   Pediatric cancer gets less than 4% of federal funding, all two hundred subtypes of it, while adult cancers get the remaining 96%.  Cancer is the leading cause of disease in children under the age of 15.  Every single day, 40 plus families are placed on the battlefield, and every single day, 7 more children die from cancer.

The childhood cancer community on social media is now reeling from the loss of 14 year old Erin Griffin.  She was a Scottish born Australian who was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) on February 18th, 2012.  DIPG has no cure.  It is a death sentence to the diagnosed child.  Erin was a beautiful child, sweet and charismatic.  She refused to give up fighting for herself and others.  I have no words for her loss, other than “I am sorry, Erin.  I promise I will fight harder.”  But the truth is, no one fights harder than all of us childhood cancer advocates.  No one.  We have everything to lose, but at the same time we have everything to gain as well.  We have to keep pushing for more research.  We have have to keep pushing for cures.  A cure to pediatric brain cancer could very well lead to other cancer cures, both pediatric and adult.  And yet…  there is no money to research it.  

TheTruth365 page announced “Erin died at 12:30 a.m. on September 1, less than an hour after Childhood Cancer Awareness Month began in Australia. Her mom Amanda says she knew that Erin was holding on until September 1 because her mission in life was to spread international awareness of childhood cancer. (Erin was also born on the first day of Brain Cancer Awareness Month.)  Amanda said that Erin died peacefully with her family by her side. Her tumor will go to DIPG research in Sydney.

I’m sorry, Erin.  Fly free, little love.  We’ll finish this fight for you.  

Erin Griffin RIP

 

We cannot be silent. Let us join their little voices ans make some GOLD NOISE this September.  For Erin. For all of her friends in Heaven, for all of her friends who are still fighting here on earth.  GOLD NOISE will win this war against childhood cancer. We are unstoppable because what we are fighting for is worth it.  Children are worth it.  All children are worth fighting for.