Are You Aware?

Today marks the beginning of International Neuroblastoma Awareness Week.  I think it needs to be every single week until this beast is vanquished for good.  Yesterday, a 6-year-old girl called Princess Lilly Valentine whom I followed on Facebook passed away from this disease.  She was just diagnosed in March or thereabouts.  That is how relentless this monster is.  It shows no mercy, and in defeating this dragon, we have to show it no mercy.

As a survivor, I feel it is my duty to continue the fight for Lilly, and for the others – Sierra, Rylie, Ronan, Saoirse, Tanner, Ila, RJ, and for those who are still fighting the beast – Emily, Brooke, Wes, Mia, Mallory, and Jacob.  There are more names, more children stricken with this stupid disease.  The list is longer than my arm.  I could rattle them off, but they’d be just names to you, unless you get on Facebook and look these children up.  Most of them have pages of their own because it is the easiest way to keep family, friends, and strangers alike updated on their journeys through cancer.  And as a survivor of neuroblastoma, I am determined to see the day when cancer is just a zodiac sign.  Go big or go home.  Those are my choices.  And I choose to go big.

This is only the second annual International Neuroblastoma Awareness Week.  It was originally started by Families Against Neuroblastoma (FAN) in the United Kingdom, but now it is a global event.  Did you know that it is the number one solid tumor cancer killer of kids?  Most children cannot even say “neuroblastoma.”  It’s grossly unjust.

The colors of neuroblastoma are purple and gold…  gold for the cancer (because, as I’ve said time and time again, children are more precious than gold…  All I need to do is look at my 3-year-old niece to confirm that), and purple for the children who have passed away from it.  I am wearing purple today and ALL of my cancer awareness bracelets (I wear them ALL every single chance I get).  I have enough to wear purple and/or gold all week long.

If you have healthy kids, do you know how blessed you are?  Hug them tight.  Yes, they will get on your nerves sometimes – that is part of what kids do.  There are parents out there saying goodbye as you read this.  There are children leaving this world.  It’s not right.  You can say that they are going to Jesus all you want, but the truth is, parents should not outlive their children.  Period.  Especially when these children are just babies.

Let’s Get the MLB Wearing Gold in September for Pediatric Cancer Awareness

I know I have posted about this before, but I couldn’t resist doing it again, especially since I found out that we need more support than ever before to get this done.  Once we have reached the 1,500 signature mark, change.org will increase the amount of signatures needed.  I don’t really know why they do this, but it doesn’t matter.  The more support we have, the better.  Lorrie, the woman who started this petition, lost her great-niece Riley to neuroblastoma last April, and since Riley loved the Boston Red Sox, Lorrie came up with this idea to get the MLB players wearing gold in September for awareness.  It is genius.

I know I have gotten quite a few new subscribers in the last week or so, so please take a moment and click here (the link will take you to the change.org petition).  Thank you for following me and thank you, in advance, for signing.  I cannot do this without you.

September is Childhood Cancer Awareness month, but you hardly ever see gold anywhere – instead you see pink for breast cancer.  NFL players even wear pink in their October games, and people know what it is for, because breast cancer pink is that abundant.

There is a very good chance that if we stand together, we can make pediatric cancer awareness as big as breast cancer awareness is today.  Maybe then, more people will start to get involved and curing it will be just a matter of time.

As it is, this past weekend was a particularly horrible one in the childhood cancer community.  I know according to the statistics, more children lost their fight recently than I can put names and faces to, but here are the children I know of.

TANNER EVERS

I found Tanner on Friday, one day before he died.  He has a Facebook group .  He was born on October 17, 2003, and was diagnosed with neuroblastoma in August 2006.  On Saturday afternoon, after a five and a half year fight, he passed away wrapped in his mother’s arms.  His family considers him a miracle because his doctors didn’t think he would even last 2 years with the disease.  What do doctors know?  They call him Super Tanner for a reason.

Ila Jean Rathbone

I have been following Ila Jean Rathbone for a while.  She had neuroblastoma too.  She was born on February 5, 2005, and by August 2006, she was diagnosed with the cancer, stage IV.  She relapsed last May, and again in December four days before Christmas, and yesterday, shortly after 5 pm, she went home to heaven.  She was 7 years old.  Her Caring Bridge site says she never let her cancer win over her spirit – it is the children who know how to do this best.

GAGE DRIVER

Gage  was diagnosed with an inoperable brain tumor called Diffuse Intrinsic Pontine Glioma (DIPG) on October 7, 2011.  He had been in a clinical trial in Pittsburgh since January 4th, but on April 5th, a MRI showed the tumor spreading throughout his brain.  I remember reading a heartbreaking post on his Facebook page where it was reported that Gage had said he didn’t want to die, that he was scared.  No eight-year-old should have to say that.  No child should.

Tanner, Ila, and Gage are all without pain today, but their families are not.  What is being done about this monster called pediatric cancer?  Not enough, if you ask me.  You can help bring an end to it.  The number one thing you could do is keep talking about it, as I am, keep spreading awareness.  Sign the MLB, change.org petition, and please share it with every one you know!  We can do this.  I know we can.

Exploration

Yesterday, I thought about what it would have been like to come to America from Europe with the Vikings or pilgrims.  The number on thing it would have been is strange.  Think about it.  You’re in a foreign land with little more than the clothes on you back.  If you survived the voyage, you have your work cut out for you.  The list of things to be done is never-ending.

I think of how horrible it must have been back then…  to wake up one day and find your child dead.  No explanation.  Just gone.  You don’t hear about it in the stories or in the history books, but cancer did not just appear suddenly.  It had to be around in the early days.  I really doubt that there were any means to diagnose it back in the day.  Oh, those poor, poor parents.

We as humans are, by nature, curious beings.  Good thing, too.  The more we know, the more we want to know.  But you know that tired old saying, “Curiosity killed the cat”?  Curiosity killed more than just the cat.  History repeats itself over and over.  If you believe in reincarnation, there’s no taking what you learned in one life to your next.  You start fresh as newborn baby.  No memories.  A blank slate.  Tabula rasa.

I, however, like to think we’re done when we take our last earthly breath.  I don’t claim to know why this happens or that happens…  I only know that when we die, it will all make complete sense, and the earthly pain we’ve carried will just melt away.  Compared to life in Heaven, this life of pain and suffering will just seem like a a dream we’ve had.  Life in Heaven will be perfect.  It will be joyful and so full of music.  Never silence.  I think that the silence here on this earth is more than enough for us.

If I could go anywhere, I would just pack up and go to Italy.  I’ve always wanted to go there.  See the cathedrals and the art sculptures, and just pretty much everything.  I’d learn to speak Italian.  Or, hire a translator.  I’d do anything I have to do to get there.   Maybe someday.  If I am really, really, really lucky.  If not, my spirit will visit after I am dead.  That is the only free way to go, right?  But I wouldn’t get to taste genuine Italian food.

 I am not going to take the credit, like Christopher Columbus did for the discovery of America, for my focus on childhood cancer awareness.  All my life, I’ve been struggling to make sense of what happened to me.  And now, I figure, the only way I can move forward is by joining the fight against it.  Wearing gold (though I admit at the moment, I don’t have much gold in my wardrobe.  Sadness).  Posting on facebook.  Posting on here about it.  Trying to raise awareness.  Because the cancers that get the most awareness get the most funding.  Look at breast cancer.  They say “early detection is key” and “awareness is key.”  Well, isn’t that true for ALL cancers?  Why is breast cancer crowding out all the others?  It doesn’t make any sense to me.

Don’t get me wrong…  I fully support breast cancer awareness.  I fully support any cancer awareness.  Much awareness is needed.  But I choose to fight for the kids just as hard.  Because I was one of them.  And ANY child could be one of them.  So I have been making changes in how I live my life.  I am no longer floundering.  I am focused.  I have a purpose to fulfill.  And I will.  Make no mistake about that.