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.

Childhood Cancer News

On Saturday, March 24th, ten year old Daniela Owens passed away from Ewing’s Sarcoma.  She fought the good fight and won, and she was woke up in her Savoir’s arms.

The above picture is one that was posted this passed January, just after I started following her.  Purple was her favorite color, and a friend of Daniela’s (who does the updates on Facebook) had posted Daniela’s obituary with a request attached to the end:  ”In honour of our brave Onco princess, please wear purple on Thursday. You can also add a yellow/gold ribbon to show u support Childhood Cancer Awareness! Show your support and join us with your friends this Thursday.”

I wore a purple zip-up sweatshirt and a little gold ribbon pinned over my heart today.

The color purple is popular in the cancer world, mostly because it stands for hope – hope that one day no more families will have to face losing a child to cancer.  You don’t need me to tell you cancer is horrible, but it is so much more so when the patient is a young child, a child who should have his or her whole life ahead of him or her.

The childhood cancer awareness ribbon is gold because a child’s life is more precious than gold.

The childhood cancer world has had a victory this week:  Mattel has finally, finally agreed to make a bald fashion doll (friend of Barbie, name TBA).  These dolls are to be donated to Children’s Hospitals.  Of course, we would dearly love to see these dolls on the shelves of stores everywhere so that everyone who wants one can buy one, but Mattel is doing what they think is best.  They are also making a financial donation to CureSearch and National Alopecia Areata Foundation.  They are doing this without any expectation of profiting from it.

However, MGA, Mattel’s competition, is setting out to release a TRUE HOPE Moxie Girlz/Bratz doll in BOTH GENDERS in mid-June 2012.  They will be available in ToysRUs stores in USA and Canada.  One dollar from each doll sold will go to City of Hope.

I hope this is only the beginning.  Maybe someday soon, the childhood cancer awareness community will be just as big as the breast cancer awareness community.  That is my dream.

Darling Daniela, I know you are watching over your family and friends from the comfort of heaven.  You don’t have to hurt anymore, and for that, I am glad.  Every day down here will seem like an eternity for those who knew and loved you, who still love you, but it is only when their time comes will they truly understand the true meaning of the word “eternity.”  Did you see a sea of purple down here when you looked?  I hope you danced with the balloons that were released for you.  Fly free, little one.  I’ll see you in my dreams.