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?

CHILDHOOD CANCER: HOW TO HELP/JOIN THE FIGHT

we make our world significant

I know a lot of people are wondering what they can do to help in the fight against childhood cancer.  The simplest idea I have for you is to donate.  Donate, donate, donate!  Donate money to the Children’s Cancer Research Fund, Alex’s Lemonade Stand Foundation for Childhood Cancer,  Pediatric Cancer Foundation, American Children’s Cancer Organization, or many of the other worthy foundations.  Just make sure that you know where your money is going.  Right now, there is a great need for research.  I cannot even begin to stress how badly we need funding for that.   Childhood cancer only gets less than 4% of federal funding, and it isn’t even just one disease!  It is 12 different ones, and there are countless subtypes too.

Donate your spare time to learning the truth about childhood cancer.  I guarantee the more you learn, the madder you will get.  Don’t be afraid to ask questions.  Poke the darn bear.  He needs to be poked.  Children’s lives depend on it.  Childhood cancer can rear its ugly head anywhere and anytime.  If you want your child to get a test done, ask for it, and don’t accept NO as an answer.  KNOWLEDGE is everything.  It’s okay to get mad, but use that anger positively.  Nothing good is ever accomplished by negativity.

Donate blood and platelets.  Register to be a bone marrow donor.  Yes, it is that simple.   Cancer patients need many, many blood transfusions throughout their treatments.  Platelets are what clot the blood, and they need that too.  When someone who has cancer and gets a nosebleed or something, it is often difficult to stop the blood flow because their platelets are so low.  And bone marrow transplants are life-giving.

Start writing letters.  Write to your mayor, your governor, local business owners, your favorite celebrities, even the President.  Write to anyone you can think of who has the means to help.  You tell them that cancer is the #1 leading cause of death BY DISEASE in children.  You tell them approximately 36 children are diagnosed every single day, and approximately 7 more die of cancer every single day.  And you tell them that doesn’t even include the children who die of pneumonia because their immune system is wiped out by toxic chemotherapy drugs.  You tell them that CHILDREN get adult-tailored drugs because there is no money in developing pediatric cancer drugs that would be safer and more effective in treating it.  Yes, you read that right.  And you tell them that TWO out of THREE childhood cancer survivors suffer long term side effects because of the poison that they are pumped full of to try to save their lives.  And it is poison.  I have heard from more than one cancer parent how scared they are when their child is receiving chemotherapy.  It is so toxic the people administrating it have to wear gloves.  They take every precaution to protect themselves, and yet they are putting this toxic, poisonous substance into the bodies of babies.  How is this okay?  It is not!

You ask people to help.  And if they don’t listen, then you keep asking.  Write to the media.  It seriously makes me sick how childhood cancer is ignored and glossed over.  The realities of it are unbelievably sad, but if we all looked the other direction, nothing will ever change.  And people, things have GOT to change.

Volunteer.  Sometimes children are left alone in the hospitals/clinics because their parents have to work to make ends meet.  It’s an unbelievable amount of stress to have a child with cancer, because you worry constantly.  Not only about whether your child will live or die, but about normal things as well, the money in the bank, the food in the kitchen, and every day bills.  Sometimes all a child needs is for someone to sit with them, read to them, or just hold them.  Human contact is everything.  Feeling loved can be the difference between life or death.  I have seen cases where there was no hope, but the children hung on longer than expected because they knew they were loved.  Their will to live is so strong.

Donate new toys, have a donation drive, like my dear friend Shannan does.  Children are often stuck inpatient bored out of their minds.  You can help change that.  Games, crafts, books, movies, toys are always needed.  Cancer patients often have compromised immune systems, so old toys are not a good idea, as they tend to be germ city.  But sometimes hospitals will take used DVDs.  Children in treatment range from infant to age 20.

I am looking forward to the day when WE have the upper hand, not cancer.  Imagine if we ALL worked together, our voices would be so loud and so strong no one could ignore us.  Imagine a world where no child got cancer.  Then, help make that into reality.  PLEASE.

The Pink Agenda/The Gold Agenda

WORK FOR A CAUSE, NOT APPLAUSEI stand by what I said in my last post about Susan G. Komen For A Cure Foundation – I do.  But I also know that it is corrupt.  A few years ago, they tried to sue other, smaller foundations that used “For The Cure” in their names.  I seriously do not want to know if they were successful.  I understand supporting breast cancer awareness and advocating for it, but this foundation is so far beyond corrupt that it’s not even funny.  They get their hands dirty and they do not mind it, especially when it makes them rich.  They may have started off right, with a noble goal in mind, “For The Cure,” but they are also going a lot of stuff wrong.  Please click on this link and read:

I Will Not Be Pinkwashed: Why I Do Not Support Susan G. Komen for the Cure

This is very sad.  They have the means to do great things, but they don’t.  They are not spending very much on finding a cure.  And it’s very sad, especially when it all started with a promise that founder Nancy Brinker made to her dying sister.

I do not remember anything about my fight with neuroblastoma, but I know cancer is horrible.  I have stood by helplessly while so many children have succumbed to it.  No childhood cancer advocate would even dream of  stealing from the kids.  I have been doing this for far too long to  give a damn about what I have.  I may not have a lot, but I give all I can.  The parents of these children stricken with cancer are forced to raise funds for medical costs and even research.  So I get every bracelet, every shirt, every sweatshirt that I am able to get.  No question.  I feel for these families,  Not only do they have their world turned upside down, but also their bank accounts are hurting,  I encourage them to never give up, of course, but when I am able to do more, I do it.

The Pink Agenda may be strong, but it is also weak, in that their motives aren’t pure.  I do know breast cancer warriors/survivors, and I fully support the cause.  I am a woman myself.  I get it.  But I too will not be pinkwashed, because I see the truth.  And that truth is ugly.

I am fully behind The Gold Agenda.  This fight for GOLD is personal and strong and pure.  All the best fights are.  Maya Thompson said on Facebook yesterday that she will bleed gold for the rest of her life if she has to.  I agree with that 100%.  We do not care about ourselves.  We just care about the fact that their are innocent, helpless children being diagnosed every single day and innocent helpless children dying every single day because of cancer.  Cancer is the leading cause of death by disease in kids.  When we try to do big things, we get shut down.

But mark my words, there will be GOLD.  Maybe not today, and maybe not tomorrow, but eventually.  And we will always remember those who have lost the fight.

Cancer is not a contest, people!

cancer is cancer

Today is the first day of October, and also the first day of Breast Cancer Awareness Month.  However, you would have thought that last month was Breast Cancer Awareness Month, because when you went out, to the store, you didn’t see gold anything, just pink, and sometimes even a sea of pink.  And amid all that pink, we often forget that men get breast cancer too.  I know that saying:  “Real men wear pink.”  After all, women wear blue, right?  But seriously.  At the very least, put it to the vote.

I am first and foremost a childhood cancer advocate because I am a childhood cancer survivor.  And I’ll be the first to admit that all cancer is bad.  It’s horrible.  It makes me want to put my family and friends in boxes and lock them up safe.  But I know that won’t keep cancer away from them.  Nothing I can do right now can keep cancer away.  All my fellow childhood cancer advocates and I want is equal funding for childhood cancer, because childhood cancer is not just one disease, but 12 different ones.  And those types of pediatric cancer have many, many, many subtypes.  I have asked this repeatedly before and I will keep asking it until I get an answer or something changes:  In what universe is less than 4% of federal funding enough?

Cancer is not a contest.  It’s not a competition to see who can scream the loudest.  It’s simply a disease, one that NO ONE should have, especially in this day and age.  I wouldn’t wish cancer on anyone, even my worst enemy.  And I bet if someone asked Nancy Brinker, the sister of Susan G. Komen, and the founder of the foundation, what she thought about childhood cancer, she would say that it’s horrible.  At least, I hope she would.  Like I said before, whatever Susan G. Komen For The Cure Foundation has done and is still doing is working,  Other cancer advocates can learn from them.  Instead of condemning them and being resentful of the pink that engulfs the world in October, we should be watching them, studying them.  Once upon a time, they were just like us.  They were just starting out.

I’ve been in this fight for the gold for almost three years now.  We’re getting somewhere.  Taylor Swift helped give childhood cancer a face with her very moving and tear-inducing song “Ronan.”  She performed it live on the 2012 Stand Up to Cancer telethon.  And somehow, we got it to the #1 selling spot on Itunes after.  We worked together,  all of us childhood cancer advocates and all the people who loved a certain blue-eyed boy who lost his life to cancer just before his 4th birthday.  It turns out that you don’t have to know someone to love them.  You just have to open your heart to them, and love comes in.  Ronan is, and always will be, very special to me, not because he died, but because he lived.  He lived!  His life may have been cut tragically short, but he will never be forgotten.

The color of the neuroblastoma ribbon is purple, and purple was Ronan’s favorite color.  I may have survived the disease that killed him, but in no way does that make me stronger than him.  He was so strong.  So unbelievably strong.  All these children are.  What kills me is the fact that they shouldn’t have to be.  I would dearly love to meet Ronan’s mama, Maya Thompson, someday,  It would be an amazing honor, because not only is she a voice still for Ronan and other kids stricken with cancer, but she is also badass role model as well.  She’s right…  if we want to be heard, we have to shrug off what people say about us, and just do things.  Go our own way, so to speak.  When I wrote to her on Facebook in the summer of 2011, after Ronan passed away, she responded with these words:  “You and Ronan will forever share a special secret.  You were kept here on this earth to do amazing things.  He was taken away, but I refuse to let his message go unheard.”

As do I, Maya.  As do I.

RIP, Zach… Your story will continue to inspire others

,to liveZach Sobiech died yesterday.  You may not know who that is, but you will…  just go here and watch the video.  He’s a singer, and he’s eighteen, and oh, yeah, he had cancer – osteosarcoma, which is bone cancer.  He was diagnosed when he was 14, and he decided he wasn’t going to waste any time.  He became a rock star…

Rest in peace, Zach…  Thank you for inspiring us with your music and spirit.  We love you, and we won’t forget you, and we won’t forget what you taught us…  You don’t have to be dying to really live your life.

“You can either sit in the basement and wait, or you can get out there and do some crazy stuff.” ~ Zach Sobiech.

No fear, just faith!