One Word, One Year

 

2013 holds a lot of promise.  It is a brand new year, and with it comes a lot of hope.  Hope that maybe this is the year that the children get heard, that childhood cancer gets a lot more than 3% of federal funding.  As TheTruth365 film pointed out, both the White House and Congress voted unanimously in 2008 to increase funding for childhood cancer research. This plan fell by the wayside when they didn’t properly fund the Conquer Childhood Cancer Act.  Because of this, nothing has changed.

When I think of this, I think of all the little lives lost, I get so upset.  These children could still be here, if only.  They SHOULD still be here.  It is utterly mind-boggling to me that if only politicians put the future of this country first, we wouldn’t be in this mess to begin with.  Children would not be dying.  There would be cures.  There would be hope.  When parents receive a cancer diagnosis for their child, the first question that springs to mind would not be, “Is my child going to die?”  Instead, the thoughts would be like, “Okay, breathe, what do we have to do to beat this?”

This year, I am going to focus on one thing:  advocating.  One word, one year.  Things can change.  I know it.  I believe it.  I don’t mean I have to do more – I mean I have to utilize what I have and use it for the good of these children.  I have words to give.  I have a truth to tell.  Even if it means that I have to tell my story so many times I am practically blue in the face, I will do it.  Children deserve better.  They deserve every chance at life, every opportunity.  They have to be protected.   They are the future.  They need to be treated like it.

Advocate:  my one word for this year.  What I am focusing on, what 2013 will stand for, is the children.  I will advocate for them, because once upon a time, I was one of them.  I got this one word idea from SheLoves/Magazine.com.  It makes sense to me.  Before, I think I was trying to focus on too many things at once and gave up, because it got to be exhausting.  No more.  I will focus on advocating for those who deserve so much more than what they get.  I will advocate for those who cannot speak for themselves.  I will advocate for those who deserve every single promising opportunity that life tosses their way.

As SheLoves/Magazine.com states, my one word isn’t another to-do list.  It is simply a direction I want this year to take.  The last two years since I have started going down this road have been eye-opening.  I know what I am doing now.  I know where I want to be.  And that is exactly where I am right now.

I challenge you to choose one word for this year as well.

 

Comfycozys for Chemo

When one is diagnosed with cancer, any and all sense of modesty and dignity is stripped away.  It is not a comfortable feeling to have nurses tearing at your clothes as if they have all the rights in the world to do it.  They try to be gentle, and they try to be respectful, but let’s face it…  no matter how much they try, patients are still left feeling not only sick, but helpless as well.  Often, at the time, they are too sick to care, but more often than not, it comes back to them later.

Comfycozys for Chemo was inspired by a girl from Phoenix, AZ named Amanda Hope, who was diagnosed with acute lymphoblastic leukemia when she was nine years old.  She endured three long years of harsh chemotherapy treatment, and finally had a “No Mo’ Chemo” party in March 2011.  But a few months later, at the end of June, she was sick again.  Her parents were informed that there was a mass in her brain, and that she needed a biopsy in order for the doctors to figure out what it was.  Amanda’s two sisters were tested to determine if they were candidates for a bone marrow transplant. Her oldest sister was a perfect match.  Amanda spent her time preparing for the transplant – receiving more chemo and radiation and another surgery to insert a Broviac® port intended for fluids, medications, and blood work during her transplant and recovery.   All this time she kept smiling, praying for other children. She mourned the loss of her hospital friends along the way and celebrated with those who were still in remission.

A week before her scheduled transplant in January 2012, Amanda’s cancer cells mutated. Chemo was like candy and she went from 0.05% cancer to 80% so she was no longer a candidate for transplant. Amanda never gave up hope and always believed in her healing. Amanda fought hard all while making everyone around her smile and laugh. She also had a dream. Amanda’s dream was that one day when she was healed she would make a clothing line for kids going through chemo that would allow them to keep their “modesty and dignity.”  Amanda always hated her body being exposed to a room full of strange doctors, nurses, and others and wanted better for other children going through the same thing.

Amanda lost her battle here on earth on March 30, 2012, but her dream lives on.  A week after her passing, Amanda’s mother launched a Facebook page to make her daughter’s dream come true.  “Comfycozys” are ”special T-shirts are designed with zippers, pockets and slits to allow access to chest-ports without exposing the child’s body and to allow for storing of the IV lines preventing tangling and pulling on their clothing. They are made in the fun, tie-dye colors that Amanda loved so much.Amanda’s spirit of life and integrity of self continues to inspire us all! Her dream is coming true. Five hundred children will receive “Comfycozys for Chemo” T-shirts this Christmas. By next Christmas, our goal is that every child in Arizona who needs a port will receive a “Comfycozys for Chemo” T-shirt from Amanda Hope’s Dream. With God’s blessing, please touch a child’s life today by supporting this amazing cause!

I think all children fighting cancer throughout the country should have a Comfycozy!  It is such a great idea!

DISCLAIMER:  The italic parts of this post are direct quotes from the ComfyCozys for Chemo Facebook page.

Are You Ready for the Truth?

Yesterday, I got asked to be a part of something that is going to be HUGE.  If you’re on Facebook, maybe you have heard of it – it is called TheTruth365.  Remember that Kony 2012 video that went viral in March?  TheTruth365 is making a ground-breaking documentary film to shed light on children fighting cancer, giving them a voice.  Individual voices are not loud enough – in order to be heard, we need our screams to become a deafening roar.  We need to become lions, tigers, and bears for our kids; I know, I know, it is not as if we are not already lions, tigers, and bears….  together we can become even more fierce and make our voices heard.  The children do not have a voice?  Well, we’ll give them a voice!  The film will focus on the state of childhood cancer funding (to which I say, “YEAH!”) by “uniting the childhood cancer community, all candidates for Congress, top pediatric oncologists, and several of the most influential celebrities.”

This video, unlike the Kony 2012 documentary, will not be a scam.  It will be honest, true (hence the name, TheTruth365), and it will not shelter anyone from the harsh reality of childhood cancer.  For, indeed, it is very, very, very harsh.  Forty six kids diagnosed every single day is harsh.  Seven kids dying every single day is harsh.

I have known about this from day one (the community Facebook page was launched last month), and yesterday, I became a part of it.  Brian Jones, fellow blogger and father of a little boy with cancer, was asked to help lead the charge in this social media campaign that will hopefully turn more heads than we, in our humanness,  can ever dream it will.  I was very excited and honored when Brian asked me to be on his team.  And you betcha I accepted.  I say, get ready, world.  You’re about to come face to face with the truth.

Here’s where you come in:  if you have a Facebook profile, go to TheTruth365 and like it if you haven’t already.  And then share the page anywhere and everywhere.  You can help it grow – let’s see if we can get it to 5,000 likes by the end of this month.

Don’t Worry, Be Happy

When Kevin Carlberg was diagnosed with brain cancer he donned his “Don’t Worry Be Happy” shirt and wore it everywhere. He explained his life’s philosophy, “I’m happy and I want to make other people feel happy too, and know that you can survive this.”  Embodying this simple mantra, he miraculously thrived, six years longer than ever expected. He inspired dozens of news stories, and helped raise millions of dollars for cancer research. This powerful message asks you to realize that “worry” over a future that may never come causes disease. Embrace the present, and choose wellness by being happy … Be the spark of hope and light that creates a miracle as it did for Kevin.  

~ from the DWBH site

Last night, I stumbled across a really cool website.  The site sells “Don’t Worry Be Happy” shirts and other merchandise to help raise money for families who are struggling to pay medical bills.  Penelope “Penny” Buttress is one such child who benefits from this.  I’ve heard of her before – she has been battling neuroblastoma since she was eleven months old, had 2 clear scans three months apart, and just relapsed on February 23 of this year.  Obviously, there is more to her story than that, and if you want to learn more about her, click on her name above and that will take you to the blog her mother keeps.

I invite you all to show your support to Penny and the other patients on the warrior page by buying “Don’t Worry Be Happy” merchandise, and help spread the message of “hope, happiness and love” that Kevin Carlberg demonstrated through his life.  Let this message mesh with that of 12-year old Jessica Joy Rees (NEGU – Never Ever Give Up) and inspire you today.

I just love inspiring people, and I strive to be inspiring myself.  It is too easy to look at your life and think you can’t do this, but you can.  Reach out and know that you’re not alone.  This world is often cold and harsh, but that doesn’t mean we need to be as well.  If you are worried about something, take positive action against it.  Often, we look too far ahead in our lives, and that  scares us into freezing up and locking the world out.  What does that do but make us more withdrawn than we already were?  I do get overwhelmed sometimes – who doesn’t?  But then I think of all the people out there who have it worse than me, and I feel blessed because I can offer them a piece of my heart.  It’s a matter of perspective, like the famous quote by Plato says:  ”Be kind, for everyone you meet is fighting a harder battle.”

The Sierra Rayn Foundation

I have talked before about donating to legitimate charities whose funds go directly to pediatric cancer research and/or paying off hospital expenses for a family in dire straits.  A high school classmate of mine is starting to highlight a nonprofit on her blog once a week, and I think it is a pretty good idea.  And I think I should do the same with foundations that are fighting to cure childhood cancer and other diseases on a weekly basis.  There is no such thing as too much publicity for such charities.  The more they are talked about, the more awareness there is, and the closer they get to their end-goal.

So the first one I’m going to highlight is The Sierra Rayn Children’s Neuroblastoma Foundation.  This nonprofit was started in honor of Sierra Rayn Chamblee, who was diagnosed with stage IV neuroblastoma when she was 21 months old.  Sierra fought so hard for eleven months, but at the age of two and a half, she passed away.  Her mother, Gen Chamblee, pushed on with the foundation, determined to make her baby angel proud and help end neuroblastoma.  ”Sierra fought so hard and smiled through it all,” Gen has said.  ”No child should have to learn to smile through such horrible pain.”

The foundation helps fund clinical trials and research through New Approaches to Neuroblastoma Therapy  and they also help (financially and emotionally) families who are battling this devastating disease.    The foundation’s mission statement is as follows:

he Sierra Rayn Children’s Neuroblastoma Foundation is a non-profit 501c3 foundation committed to finding a cure for neuroblastoma through research, education, awareness and advocacy. We hope to educate the public about this very aggressive and painful disease, that is dramatically lacking in awareness and funding, and help others on this journey. We also are working on helping pass legislation for childhood screenings.

You can visit their website here for more details and ways you can help.  I believe in this foundation, not only because it stems from a mother’s undying love for her child, but also because it already has done so much good in raising awareness and funds for research.