Monthly Archives: August 2012

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End of August

 

August 2012 was long to me.  These days, a week can seem like a year, and a month can seem like four years.  I do not know why that is – maybe because I have been preparing for and working towards September all month long.  And September will finally be here tomorrow.  Thirteen more days before TheTruth365 documentary film comes out.  Am I ready?  I was ready 30 plus years ago.  I cannot wait to see this plan take a hold of social media.  I can only hope and pray that it will far exceed my expectations – ALL of our expectations.

Looking back to my first post this month, it seems as if I only met one goal this month.  I am not ashamed to admit it, because it is the one goal that counts – “do whatever I can to make TheTruth365 project a success.”  If I were being honest, I would say that this month of August was terrible for the childhood cancer community.  We lost so many precious kids, including 10 year old Jack Bartosz on Monday to relapsed neuroblastoma.  I haven’t had much energy to spare because all of my attention was on TheTruth365.  On Talia, who is finally a teenager.  On the other kids and babies who need us to succeed on their behalf.  Because they cannot fight cancer alone.

One thing at a time, right?  September lies before us, its days empty and waiting for us to fill them.  I want to fill them with as much awareness and hope for the kids as possible.  The kids deserve more than 4% of government funding, and we aim to get them more.  We aim to get them what they deserve, which is hope, and a future.

“For I know the plans I have for you,” declares the Lord.  ”Plans to prosper you and not to harm you, plans to give you hope and a future.”

So come on, and stand up with me.  Stand up for the children who are finally getting a voice this month.  You know you would if it was your child, or someone else you knew.  We needn’t despair, because the thing called hope is so, so, so, so beautiful – like a rainbow after the most violent storm imaginable.

 

Like the Page http://www.facebook.com/theTruth365film

Sign the Petition http://thetruth365.org/petition/

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Book Review: The Fault in Our Stars

Did you know everything is a side effect of dying?  It’s true, but the opposite is also true – everything is a side effect of living as well.  This idea comes from the delicious novel by John Green entitled “The Fault in Our Stars.”  It is a cancer novel, but it is different than any other cancer novels I’ve read so far.  The protagonist is Hazel, and she has “never been anything but terminal, her final chapter inscribed upon diagnosed.”  She’s sixteen and has thyroid cancer, with metastases in her lungs.  John Green put an “author’s note” in the front of the book – one that “is not so much an author’s note as an author’s reminder of what was printed in small type a few pages ago:  This book is a work of fiction.  I made it up.”  (Meaning:  Thyroid cancer isn’t one of the cancers children get.)

The novel opens on a scene in which Hazel attends a Cancer Support Group in the “Literal Heart of Jesus” (the church is shaped like a cross, and the group meets in the middle aka “the literal heart of Jesus,” which is a misuse of “literal” too, as Hazel is sure to point out).  One of the boys at the meeting just stares at her the whole hour and after the meeting, he introduces himself as “Augustus Waters.  He is an osteosarcoma survivor (a real childhood cancer) and is a year older than Hazel.  Augustus also has a prosthetic leg because of his cancer.  He claims Hazel looks like his dead girlfriend (she died of brain cancer) and also, Natalie Portman in V is for Vendetta.  They go to his house to watch it, and end up talking about books.

Hazel is very obsessed with this one book in particular, “An Imperial Affliction,” which is by Peter van Houten.  She had read it over and over more times than she can count, and has written to the author wanting to know what happens next to the characters.  The book itself is about a young girl with cancer, and since Hazel knows herself what living with cancer is like, she feels a kinship with this character – who is called Anna.  The novel ends rather abruptly in mid-sentence, and Hazel thinks it is because Anna either dies or becomes too sick to write.  She wants to know what happens to Anna’s mother and she wants to know what happens to Anna’s hamster.  She has loads of questions and has written to Peter van Houten over and over to no avail.

She ends up recommending it to Augustus and he reads it and is very upset about the ending too. And to Hazel’s great surprise, he got in touch with Peter Van Houten’s assistant, who had typed up the author’s reply to Augustus’ letter.  Hazel asks for the email address and of course, Augustus gives it to her.   And she writes a message out and gets a reply inviting (or so she thinks) her to Amsterdam where the author lives.  Sadly, she had used her Wish on Disney when she was thirteen, but Augustus says he still has his, and would use it to get them to Amsterdam.  Because, evidently, he loves Hazel.

I absolutely loved this book – the best things in life often make you laugh and cry both, and this book is one of those things.  I loved the way Augustus spoke to Hazel – or Hazel Grace, as he called her – and I loved his grand gesture of love – using his Wish on her when he really didn’t have to.  That is what love is, after all, isn’t it?  Putting the other person’s happiness before your own?  I really think this is the best cancer novel I’ve read thus far – because it is not bogged down with sadness.  There a moments I giggled.  There are moments where I cried.  There were even moments when I had to put the book aside because I couldn’t read through the tears.  It is a beautiful story, a masterpiece.  And it is now on my list of Favorite Books Ever.

Read it.  You won’t be sorry.  Pain demands to be felt, just like this book demands to be read.

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Childhood Cancer Advocacy Is Not Just For Adults

Through TheTruth365, I have met a lot of wonderful, wonderful people who really, and truly care.  One of these people is a young girl named Inês.  She will be seventeen in November, and she lives in Portugal, though she is originally from Hawaii.  In December 2005, when she was just ten years old, her mother told her that her best friend, Marta, had leukemia.  She asked her mom if cancer was some kind of cold.  Inês and Marta were very close – they called each other “sissy.”  Inês was very young, and nobody really explained to her what Marta truly had.  It was an aggressive form of leukemia, though, and sadly, Marta passed away two years later, when she was twelve years old.  Inês could not bring herself to ask about Marta’s cancer again, and she still can’t to this day.  She told me it didn’t feel right, and still doesn’t feel right, to bring up the subject.  She told me, “I wanted and always want to remember her as she was, healthy and vibrant, you know?”

I understood completely.

Inês has been making childhood cancer videos for years now, and has her own Youtube channel.  She has many contacts in the childhood cancer world and gets lots of messages about it.  One of those messages was about a four year old girl named Kayleigh,who had been diagnosed with neuroblastoma the year before. Inês fell in love with this little girl on the spot, and she and Kayleigh have been like “far-away sissies.”  Kayleigh is now six years old, and Inês hopes to meet her in New York City next year on her eighteenth birthday.

I want to share with you one of Inês’s Youtube videos:  It is called “Kids are DYING.  WAKE UP, WORLD!”  Please watch!  The song she used is Melissa Etheridge’s “I Need To Wake Up.”  When I told her that I thought it was pretty amazing that she was so into childhood cancer advocacy at such a young age, she told me she thought everyone should do it.

How else are we gonna find a cure?

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Please visit the Truth 365 and sign the Petition @http://thetruth365.org/petition/
Like the Truth 365 page @http://www.facebook.com/theTruth365film

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Let Love Explode

I absolutely love this song by the Newsboys – “God’s Not Dead (Like a Lion).”  I think of Him up there, or around us, and I feel assured that He’s got this – my fight, your fight, everyone’s fight.  Jesus loves the little children, yes He does, and He will win this war against childhood cancer.  I know He is the force behind TheTruth365 movement, and I know it will be a success because I’ve put it in His Hands.  I’ve done my part, and will keep doing my part, but that is all I can do.

It is His job to wake people up to the harsh realities of childhood cancer.  He is the spark, the flame, the wildfire.

It is His job to be the Lion.  Like Aslan in C.S. Lewis’ Narnia series, He is with us in this battle.  He will die for us a million times over if it meant we would be safe.

It is our job to listen to that still, small voice whispering in our hearts.  God knows what He is doing even if we do not see the reasons.  God is patient and He is good and He is strong.  Stronger than we could ever hope to be on our own.  We just have to trust, just have to believe.  Everything will be okay in the end.

I understand how it might be hard for some people to believe in a God who would allow children to suffer.  But, as we all know, this life is only temporary, no matter which way you look at it.  And everything was perfect in the beginning.  I am reminded of a quote I once read in a novel co-authored by one of my favorite singers LeAnn Rimes, We are so far from God, who do you think moved?  God didn’t move.  He wouldn’t.  He couldn’t.  He loves us too much to leave us alone even for a second.  And if we let Him, God will help us heal.  He doesn’t force anything on us – He waits ever so patiently for us to come to Him.

There are signs everywhere – signs of His love.  Watch for them.  The sun warming your face, the birds chirping, a pet or a child to snuggle, a rainbow in the sky, or even a thunderstorm, the flight of a butterfly….  I could go on and on and on.  This world is big and dangerous and heartbreaking – true – but it is also beautiful because God and God alone made it.

I know there is a God because I am alive, I am here, and I am stronger than I’ve ever been before, fighting the world for Him and in Him.  Of course, it would be easy for Him to proclaim, “THERE WILL BE NO MORE CANCER!”  And sometimes, I don’t understand why He doesn’t.  If He wanted that little girl or that little boy, he should have never sent them in the first place.  But what do I know?  There would be no fire to be put out if the children who are gone from this life did not exist.  

So, let us go forth, and let our love explode…

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The Children Need You To Sign

 

TheTruth365 movement is petitioning the United States government for an increase in federal funding for childhood cancer research.  As it is, cancer is the #1 leading cause of death by disease in children, more than muscular dystrophy, AIDS, or any other disease.  Cancer kills more than 2,500 children every year, and over 13,500 will be diagnosed with cancer in the next 365 days.  This numbers are significant (I think even one child is too many…  It’s the 21st century, 2012 is more than half over, and yet we are still stuck in the 1980s as far as childhood cancer research goes), but obviously not significant enough to warrant the attention of the whole nation.  Well, guess what?  That is just too bad.  The lives of children will not be put on hold until the government gets their priorities together.  The time to wake up was yesterday, a long ago yesterday.

Please click on the word “petitioning” above and sign TheTruth365 petition!  Our goal is 1,000,000 signatures.  This petition is TheTruth365 own.  It is not part of change.org or anything like that.  I believe we can do this if people just signed.  This is what you are signing…  all it says:

I, the undersigned, support an increase in pediatric cancer funding by the National Cancer Institute with the goal of eliminating cancer as a threat to all children.

As it is, the government just gives less than 4% of the $3 billion allocated for medical research to childhood cancer.  Less than 4%!  And there are twelve different types of childhood cancer (including bone cancers, brain cancers, leukemias, hepatoblastoma, lymphomas, neuroblastoma, retinoblastoma, rhabdoid tumors, sarcomas, and Wilm’s Tumor), and 4% of $3 billion is barely enough to find cures for even one of them.  So, you see, there is a dire need for change, and the time for that change is NOW.  Did you know that the National Cancer Institute is taxpayer-funded?  Well, duh, right?  So why aren’t the children more of a priority to us than a choice?  I know they are a priority for me.  I have said it before, and I will say it again.  Children are the hope of the future.  Without them, there is no future.  And for the past 30 years, cancer has been wreaking havoc, killing  more than 76,650 kids and drastically changing the lives of many more.  I know it changed my life.

Imagine for a moment, a world where cancer does not exist.  Isn’t it nice?  Let’s make it a reality.  I signed this petition yesterday.  Will you sign it today?  Thank you and God bless you!

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About TheTruth365

Guess what happened?  TheTruth365 website launched!  Can I get a round of “ALLELUIAS” please?  Things are going to happen really fast now, especially since September is just around the corner.  I know I have talked about this before, and that some people know what it is because they are friends with me on Facebook.   One of society’s common misconceptions is that childhood cancer isn’t that big of a deal, because it is “exceedingly rare.”  I am really beginning to hate that phrase, because not only is it not true, but I’ve seen it repeated ad nauseam.  I mean, those words make me sick every time I see or hear them because they are just not true.  In this country alone, childhood cancer strikes 46 times every single day.  It also claims 7 more little lives every single day.  World wide, the numbers grow.  365 days a year.  Go ahead.  Do the math.  It is appalling, isn’t it?

And nothing has changed since I was a pediatric cancer patient in the 1980s.  Do you know what a blow that was when I found that out early last year and what a blow that still is?  It is like people do not care about the children.  That is like saying they do not care about the future of this country, the future of the world.  For the life of me, I cannot understand that.  People are looking the other way while children are dying?  NOT OKAY!  All those St. Jude commercials you see on TV of happy, smiling, giggling bald children are not the norm.  As I have said before on here, that is just kids being kids despite what is wrong with them.  Those commercials do not show you the bad moments, the bad days, the tears, the screams, the vomiting.  None of that.  I wonder what would happen if they did?  Would the public go on a childhood cancer witch hunt?

We’re gonna find out what the public would do on September 13th, thanks to Arms Wide Open Childhood Cancer Foundation (AWOCCF) and Band of Parents.  Social media is a very powerful tool, and TheTruth365 is going to utilize it to bring some much needed attention to the lack of childhood cancer awareness and funding to the world.

We want it to go viral in the worst way!  And the best way too, because that is the only way the kids with cancer are going to benefit from this.  We are using Facebook, Twitter, and Youtube.  We are asking everyone we know to get involved, including celebrities and political candidates.  In fact, that National Childhood Cancer Awareness Month coincides with the election is perfect.  We want all political officials to recognize  childhood cancer as a serious problem (which it is) and we are demanding that they adjust their agendas to include the youngest generations.  After all, isn’t it true that there would not be a future without the children?

Me?  I cannot wait to see what changes TheTruth365 brings to the world.  If I know one thing for certain, it is that nothing will ever be the same again once September 13th dawns on America!

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If Only

 

 

I recently watched the made-for-TV movie, “If Only” for the second time – the first time, I’m sure, was when it first premiered on Lifetime in the year 2004.  It’s about a British businessman named Ian who is a romantic relationship with a girl named Samantha (played by Jennifer Love Hewitt, whom I have on the same level pedestal as I do Sarah Michelle Gellar – Sarah’s solid gold, and Jennifer’s silver).  When the movie starts, Ian takes Samantha for granted.  The day they each have gets worse and worse, and finally it escalates into a fight – a fight after which she storms off, gets into a cab, and the cab promptly gets hit at a red light,  Sam later dies at the hospital, and Ian and Sam’s best friend Lottie cry together.  Somehow, Ian gets home and starts to look through Samantha’s journal.  The next morning, he is shocked to discover her besides him in bed, and even more weirded out when things progress in very much the same way they did in his “nightmare.”  He desperately tries to save Samantha, even spiriting her out of London for a couple hours; however, she is adamant that they go back, because she has her graduation concert that night, and she didn’t want to miss it.

Jennifer Love Hewitt sings in this movie.  And I am like, “WOW, the woman can sing!”  I knew this, of course, even have a couple of her CDs around here somewhere, but seriously.  She has sung a cover or two on her show The Client List, but still…  Ryan Murphy needs to cast her in Glee, or something.

I am not going to tell you anymore than that because I want you to watch it, don’t want to spoil it for you.  The message of the story is simple:  Love as if there is no tomorrow.  In fact, that is the tagline of the movie – “He loved her like there was no tomorrow.”

Truth is, we don’t know how much time we have.  There is no way we can know, and “loving like there was no tomorrow” is great advice.  How much do you say I love you?  Sometimes we think people know, so we don’t say it.  But how do we expect them to know it if we never tell them?  We may take care of them, we may hug them or let them make certain decisions that we would like to make on our own, but all that means nothing if we don’t say what we feel.

I am not embarrassed to tell people I love them, even non-family members.  I love my friends as much as I love my family, because I firmly believe that our friends are the families we choose ourselves.

Cherish those in your life, because you never know when the last time you see them will be.  Love like there’s no tomorrow – because, after all, tomorrow’s promised to no one.  My own life and now my advocacy for childhood cancer has taught me that, often repeatedly.  I am human.  I forget sometimes.  I forget to be grateful.  I forget I am blessed.  I start complaining about everything that is wrong with my life, and then I stop.  All the if onlys out there won’t make anything better – only I can.  And I can start by having an attitude of gratitude (I’m alive!) and start working to help make things better.  Nothing is going to change unless I work toward that change.

I am praying soooooooo hard that when TheTruth365 video documentary comes out September 13th (National Childhood Cancer Day), it will be more than ten thousand steps in the right direction.  I hope it will be the beginning of the change the children so desperately need.  46/7 needs to stop, and if you don’t think so, look at your own kids, or the kids in your neighborhood, town, etc.  What if it happened to them?  What if one day, you were thinking, “if only we found it sooner” or “if only we knew how exceedingly NOT rare childhood cancer is before our child was diagnosed”?  There are no second chances, no if onlys, with cancer.

I hope you’ll be watching on September 13th.  I know I will. And I also know that I’ll be waiting…  waiting for this country and eventually the whole world to unite against this monster.

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Happy

I’ve been so caught up in the bad news in the childhood cancer world this week and TheTruth365 stuff that I nearly forgot to share with you the good news – Emily Hubbel’s news!  Yesterday, Emily’s mom posted a blog post entitled “CLEAR.”  When I saw that, I got really excited because it could only mean one thing:  the MIBG scans were negative!  Not only is there no progression, but she is absolutely clear (not even a single tumor)!

Insert happy dance here!

As you can imagine, the Hubbels are celebrating this weekend.  How?  By doing something Emily loves to do:  camping!

She still has treatment to finish though her scans were clear.  They want to be absolutely sure that the neuroblastoma is gone, that it won’t come back.  But she is free, thank the Lord!

GOD IS SO GOOD!

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Talia Joy

I want to tell you the story of a brave young girl.  On Valentine’s Day 2007, when she was just 6, Talia Joy Castellano was diagnosed with stage IV neuroblastoma. Whereas it is true that neuroblastoma typically shows up in smaller children, it is not entirely unheard of in children over five and under ten.  I am thinking the older you are when diagnosed with it, the greater your chances are of relapsing.  It was certainly true for Talia.  The first time her cancer was in remission, she got to live a treatment free life for thirteen months, and then in September 2008, her fight began again.  This time, she went into remission for two years before relapsing just before her 11th birthday in August 20010, and again last April.  She just found out on a few days ago that she has relapsed again, and this time the cancer is in her bones.  And on top of that, she has pre-leukemia, which means, as she states in the video above, it will eventually become full-blown leukemia.

Talia is simply amazing in that she does not let cancer get the best of her – it may be claiming her body, but she refuses to let it darken her spirit and the light in her eyes.  She is leaning towards not fighting anymore, doesn’t want to subject herself to anymore painful and toxic treatments that may or may not work.  She has already gone through so much – surgeries, hospital stays, chemotherapy, medical testing, as well as experimental testing, and a stem cell transplant.  The pre-leukemia means that if she should decide to go through with it. she would have to have a bone marrow transplant.  Talia is leaning towards not doing it, because the recovery process is excruciating.  However, she has not given up…  She just wants to enjoy the rest of her life, however much time that is.

I found Talia last year, when I first started really advocating for childhood cancer and I am really ashamed to say that I haven’t been following her too closely until now.  The vlog above is the first Youtube video of hers that I’ve actually watched.  She usually vlogs about makeup and does tutorials, and even has her own Youtube channel – taliajoy18.  She is quite famous in cyberspace and is such an inspiration to her followers and fans.

She will be turning thirteen a week from Saturday.  I hope you will “like” her Facebook page, and join me in wishing her the best birthday ever.  She deserves it!

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Dear Johnny Depp

Johnny playing with his daughter Lily Rose

 

Dear Johnny,

I am writing this not to get an auto-stamped autograph (I know you stopped signing them personally years ago when they got to be to much and I understand why), but to ask you something really important:  Will you seriously consider becoming a childhood cancer advocate?  What you once said is true – “You can close your eyes to the things you don’t want to see, but you can’t close your heart to the things you don’t want to feel.”  Childhood cancer is one of those things that people choose not to see until it happens to them, to their child, niece, nephew, grandchild, or a friend’s child.  They choose not to see until they are forced to look.  I hope you will not be one of these people.  I hope you will look and see the truth for yourself.  And I hope you will want to help.  On average, 46 children are diagnosed a day, every single day.  And on average, 7 children die every single day. EVERY.  SINGLE.  DAY.

I know you are a father, that you have two children, Lily Rose and Jack.  I know you are the kind of father who will do anything for them.  Will you set an example for them, and help give a voice to those who cannot speak for themselves, who cannot vote?  I am a childhood cancer survivor myself, and now I am a advocate.  I had neuroblastoma, the most common solid tumor cancer found in children.  I was diagnosed when I was 15-16 months.  After two major surgeries, a harsh chemotherapy and radiation protocol, I had two really bad ear infections that escalated to a viral infection called encephalitis.  It damaged my brain stem, leaving me with physical disabilities, hearing loss, and a speech impediment.  And as I grew, I developed severe scoliosis from the radiation because they only exposed half of my spine to it, and half of it grew and half of it didn’t.  I lost everything at age two and a half, but I didn’t give up.  I’ve worked hard to get to where I am today – I have a Bachelor of Arts in English, and I have big dreams of spreading awareness through my writing.  Today, I am almost 31 years old and working very hard, hoping to see the end of childhood cancer in my lifetime.

Did you know that the government gives less than 4% of the annual $3 billion given to medical research to childhood cancer?  And did you know there are twelve different types of childhood cancer?  So you see, there isn’t any way that less than 4% of $3 billion is enough.  Childhood cancer is more than smiling bald kids you see on television commercials.  It is pain.  It is tears.  It is the child being too weak to get out of bed, of being isolated from their friends and from the world because they have no immune system.  It is throwing up repeatedly and losing their hair and weight when they can’t really afford to.  It’s having to hold still for x-rays and scans and radiation.   Cancer leaves scars on the body and also on the soul, no matter how old the child is.

I know you don’t want to imagine your own kids as being sick, and I don’t want you to either.  46/7 is not rare – it is an epidemic.  Will you stand up with me?  The last part of your quote above – “you can’t close your heart to the things you don’t want to feel” is very true as well.  Will you do me a favor?  I know you are a very busy man, but will you please go to your local children’s hospital and play with the children and make them laugh, talk to their parents, even?  I know of one little boy named Wes who just loves you.  He is six and he lives in Virginia with his mama and daddy and little brother.  Last summer, he was diagnosed with neuroblastoma and is kicking its butt!  He has his own army on Facebook, thanks to his wonderful mama.

Please become an advocate for Wes and the others who need you!  Kids cannot fight cancer alone.  I would be delighted if you started a trend in Hollywood by taking a stand for the children.  It begins with one.  Just one.  Will you be that one for us?

Love,

Danielle