Copying this from another website who copied it from another, etc....  It was written by a breast cancer survivor.
Please read.    THIS IS VERY LONG, but WELL worth the read.

September and Childhood Cancer Awareness month have passed, largely unnoticed by society. The rush to shower us with pink in recognition of Breast Cancer Awareness month is reminiscent of the crowding away of pumpkins and scarecrows by Christmas trees and snowmen. Except there's no pushing gold aside. The way is clear for pink.

Even the American Cancer Society -- the outfit that professes to represent all cancers and provide support for everyone affected by the disease -- the organization for which we all come together and raise funds by holding a Relay each year -- has chosen not to recognize Childhood Cancer Awareness Month.

Go to www.cancer.org and what do you see? The banner at the top of the page is pink and touts the ACS' commitment to fighting breast cancer.

Of course, I, among all people, am grateful for the focus of so many foundations and researchers on breast cancer. I know I wouldn't be looking at a future that is likely cancer free (or free of breast cancer, anyway) without the research and the focus on breast cancer during the past decade.

Still -- I'd rather have my son. 

What if the focus that remains on breast cancer was turned to pediatric brain cancer?

I know millions of women are affected by breast cancer. But almost all of them are effectively treated.

Only thousands of kids are affected by brain cancer. But many -- perhaps most -- of them die.

This is so politically incorrect, I am hesitant to write it. But, as I write, I am without breasts and sans colon.

And one son short a full house.

If anyone can speak to this issue, I think I can.

I am grateful for the pink that signals the arrival of October in our day and time. I just wish there was a wave of gold -- more in terms of funding for research, but also in terms of awareness -- to usher in the pink.

If you are reading this, you know. You have traveled this tragic journey with us and you are aware of the impact of pediatric cancer on families.

Will you spread the word to someone who doesn't know today? Send an e-mail. Copy this to your blog, your faceook, your twitter. Write a letter to a corporation or a legislator. Or to an editor.

Christine Reid, a colleague and fellow OCU Law and Hatton Sumner alum is editor of the "Kingfisher Times and Free Press". She was astonished at the lack of attention given to childhood cancers and wrote a fabulous article on this subject earlier this month -- for which we are most grateful.

Here is an excerpt:

September is a disease awareness month, which you probably recognized by the gold ribbons displayed on all the corporate advertising on TV and in magazines and the special media reports.

What’s that? You haven’t seen any? That’s because, for some reason, this class of diseases attracts hardly any public attention.

If I said “pink ribbon,” you would have immediately thought of breast cancer. “Red ribbon” might be a little trickier, but eventually you would have come up with heart disease.

But the gold ribbon is nearly invisible. It represents childhood cancers.

Today, as you read this, the equivalent of a classroom full of children will be diagnosed with cancer in the U.S., more than 12,400 a year. About 4,000 child cancer victims will die this year, making cancer the number one disease-related killer of children under 14.

While 75 percent of childhood cancer cases are curable, for some forms, a cure remains illusive.

Only one new cancer drug has been approved for pediatric use over the past two decades. For some of the rarest, but most deadly, childhood cancers, no new treatments have been introduced in more than three decades.

For every one child diagnosed with pediatric AIDS, 15 children are diagnosed with cancer, yet available funding dollars designated for research are vastly disproportionate: $595,000 for each AIDS victim and only $20,000 for each pediatric cancer victim.

Federal funding for breast cancer research is more than double that for all 12 major groups of pediatric cancer combined.

For the full article: http://tinyurl.com/n64s4u"

    ***G L O R Y  T O  T H E  G O L D! ***
                     Aren't Our Children Worth It???

This is a picture of the Christmas before Taylor was diagnosed.  I miss those times.  I know there were struggles during that time because she had cerebral palsy and a seizure disorder, but they are very hard to remember.  I only remember the many blessings I got from her presence.  She had the most beautiful dimpled smile that was always glowing.  I loved that smile.  I loved to kiss all over her beautiful face.  I loved to hold her in my lap while she would talk to me.  She was a joy to be around.  I am so blessed that I was chosen to be her mother.  I feel as if I was born to be her mother.  Even though it was 8 very short years, I am so grateful for the time I was given with an angel right here on earth.


Here is a picture of Taylor's last Christmas.  I guess you could say it was a bittersweet Christmas.  Taylor had been sick for 6 months.  She had barely spoken a word during those 6 months.  That beautiful smile was still there but not shown nearly as much.  She did not feel well.  She was sick all the time and chemo was ravishing her little body.  However, at the beginning of December, we began to realize that there was a cycle to her sickness.  We also began to realize that her central line was a problem, so we made plans to replace it with a port-a-cath.  We began to realize there was a combination of medications that could make her feel better after chemo.  She got a new baby sister.  Her smile was back.  It came more frequently now.  My personal life was a mess, but I was thrilled that my beautiful angel was feeling better.  Her scans were clear.  I was feeling positive as I approached the new year.  I knew the odds were against her, and somewhere deep inside I feared this would be her last Christmas.  However, I did not let this dampen our spirits.  I prayed and hoped for the best.  I knew she was strong.  I knew she could fight this evil disease.  It was the first holiday of the year that she was not in the hospital since diagnosis.  It was the first time she had not gotten fever and an infection when she was neutrepenic.  It was a joyous Christmas with my angel.  It even snowed in Humble, Texas!  It was just a little but enough for Taylor to make a snowball to throw at her brother.  It was a special Christmas for my sweet Taylor.  It was a beautiful last Christmas with Taylor.  I spent a lot of time with her.  Her Aunt Jamie and I even snuck her off to the zoo to the petting zoo and to see Santa.  She has a blast and even petted the animals against doctor's advice of course.  We took 5 kids to the zoo alone at Christmas time (one in a wheel chair, one who could not walk, and poor Aunt Jamie had a cane).  We were quite a site, but we had a blast!
       
That's a snowball in her hand that she is about to throw (hence, the mischevious grin!)

Now, I fast forward to Christmas of 2008.  Holidays are always hard since Taylor's death.  I don't think it is possible to miss her more on holidays than I do any other day.  I think there are definitely more reminders that she is gone.  When I get the decorations out, her stocking is there.  I wonder what should I do with it.  Well, this year I could not find it because we moved into our new house in July.  So, I was sad that it was not there.  I felt like she was being forgotten, just being packed away.  All of her things are already packed a way in a special room in the attic--a room that noone sees.  As I walked down the toy aisle picking out presents for the kids, I try to avoid the polly pocket aisle.  However, I end up there looking at all the new ones that I know she would enjoy.  I want her here for Christmas.  I don't even feel like celebrating without her.  I know that I am supposed to celebrate the birth of Christ, but it's so hard.  Yet, I continue on.  I do it for my husband.  I do it for the chilkdren I have left.  I put a smile on my face even though I am heartbroken inside.  I am glad I do this because I find myself actually having a good time and being happy celebrating Christmas.  Weird huh?  We had a Christmas celebration here with our family the Saturday after Christmas.  I had fun and actually want do it again.  I thought about Taylor a lot, but I still found a way to have joy.  It was a step for me.

I still avoided doing Christmas cards.  I just don't want my sweet angel to be left out, but I don't know how to include her either, so I just don't do it.  I did get the pictures taken though.  So, here is one. 

Another exciting thing happened this year that I must share.  It snowed here in Lumberton, Texas more than 4 inches!  It was not quite on Christmas, but it was on December 11 which was Blake's birthday.  He was thrilled.  I could not beleive the size of the snowflakes coming down.  I had never seen that where we live before.  It was awesome.  I thought of Taylor alot and her last Christmas with snow.  It made me think that she was somehow with me, smiling down on me.  I mean real snow twice in four years on the Texas coast.  That's crazy!  So I knew she must be with me!  I don't feel that very often, so it was really nice.    



So as I New Year begins, I reflect on another year without Taylor.  I know that I will never miss her less or that I will never go one single day without thinking about her.  I know that I need to do better in dealing with her death.  I need to keep living.  I need to learn to deal with my anger and not become so bitter.  I need to use my energy to help other kids and family going through cancer hell.  I need to use that energy to help find ways to bring awareness to childhood cancer, to raise funds for reasearch, and to help find a cure.  That is one of my goals for 2009.  I will try to be a better wife and mother, and stop letting grief get the best of me.  I can help keep my angel's memory alive by helping others.  Please pray for this in 2009!  

"See to it that no one comes short of the grace of God; that no root of
bitterness springing up causes trouble, and by it many be defiled" (Hebrews
12:15)

Well, the dreaded anniversary is here again.  Since Taylor got sick, there have been a lot of anniversaries that I dread.  I dread the diagnosis anniversary and the relapse anniversary and her birthday.  This this anniversary is definitely the worse one.  In about 10 hours or so will be the third anniversary of Taylor's death.  Looking back over the last three years without Taylor, i often wonder if I have gotten any better since her death.  The answer is not really.  I mean sure I am more functional and better able to handle (and hide) my grief.  There are days that I actually do not cry because I miss her so much.  However, i have figured out that it has not gotten easier to deal with her death, i just have found ways to make it look like its easier--like I am doing better.  I know that I definitely miss her more now than I ever did.  The longer I go without her, the more I realize the magnitude of the loss.  This is a child that was my soul mate.  I never loved anyone or anything that much in my life nor will I ever again.  I always felt like I was meant to be her mother.  Her personality meshed so well with mine, and most days I would rather be with her than anyone else in this world.  She made me smile and laugh so hard.  She was really funny and entertaining, but at the same time she was so gentle and wise beyond her years.  She had the sweetest disposition, but she could be spunky and sassy at times.  After she got sick, that spunk really came out.  It was both heartbreaking and precious to see.  That child was with me all the time.  We hung out and laughed.  We watched Full House and Punky Brewster til all hours of the night.  She was a girly girl that was into pink, Princesses, tiaras, mermaids, matchy matchy clothes, beautiful dresses, hair bows.  I loved that about her and miss it so much. 

I still remember after throwing up a million times, she would say " I can't take it anymore."  It was so heartbreaking to hear my precious child say that.  All I could do was hold her and tell her that I was so sorry.  There were alot of days and nights that I would do that.  Sometimes she felt so bad, she would not say a word for days and days.  I hated watching her suffer.  I would just hold her because thats all I could do.  I could not make it better for her regardless of how much I wanted to.  I guess I should be glad that she is no longer suffering, but I just do not think like that.  I am angry that she ever had to be sick and suffer.  I am angry that my child had to experience cancer instead of childhood.  I am angry that she died.  I am angry that I did not get more time with my child.

I can't sleep tonight.  It is weird how the mind works.  I looked a the clock while lying in bed and realized it was 12:06 AM.  Immediately I realized that it was now October 15th--the day she died.  My mind automatically goes back three years remembering where I was at that exact moment.  I torture myself with thoughts of that horrible room in ICU on the third floor at Texas Children's Hospital.  There is nothing more horrible than sitting around waiting for your child to die.  Your thoughts are racing.  You are trying to get a grasp on what is going on, but you are still in such disbelief.  You wonder how you got here.  Just three days earlier, we were fighting after a first round of chemo since relapse.  There was a chance.  Then suddenly, she's dying , and your waiting and watching.  The doctor is telling you that she is not going to make it, but your mind is still saying that there is a chance---that she can't be dying.  You watch people come and go.  They all know she is dying, but you just can't believe it.  You still believe in the miracle.  You hear other people telling her it's okay to let go and be with Jesus, but you don't feel that way.  You want her to fight.  You want her to live.  You want life the way it was before cancer.  As she slips away, your heart feels empty--you feel alone.  Then she is gone and nothing is ever the same.  You never feel like the same person again.
        
I have tried so hard to make some sense of what has happened.  My husband and I are finally doing all the paperwork for the foundation we want to start in memory of Taylor.  However, it is still so hard to find my way.  I want to help others, but how can I when I am still so hurt and angry.  I am angry that my child suffered and died.  I am angry that other children are suffering and dying from this horrific disease known as rhabdomyosarcoma.  I had never heard of rhabdomyosarcoma before May 2004.  Now I am all too familiar with this evil beast.  I want to do something, but I just don't know what.  I can't get past the grief, and its so frustrating.  I want to honor my precious daughter so that she will never be forgotten.  I do not just want to be angry and bitter for the rest of my life.

I hate being alone with my thoughts.  Many nights I cannot sleep, and I lay awake thinking about Taylor, and I feel so alone.  I feel alone without her.  I feel alone in grief.  I feel like everyone's life goes on except mine...  I asked my pastor to pray for me a couple of weeks back.  I asked for peace and comfort regarding Taylor's death.  I asked for direction and that my grief be channeled into something positive to honor Taylor.  Please pray for this too.

Well it's late and I am rambling on and on.  I will close with a bible verse I found on dear sweet Chloe's website (she lost her battle with rhabdo Oct. 9, 2008) Psalm 46 --- "God is our refuge and our strength, and ever-present to help in distress. Thus we do not fear, though earth be shaken and mountains quake to the depths of the sea…..” “God is in its midst; it shall not be shaken “Come and see the works of the Lord, who has done fearsome deeds on earth….” “Be still, and know that I am God” 


PS  I want to close with a poem I found on another site.  This one really touched me.
     
Go ahead and mention my child,
The one who died you know.
Don't worry about hurting me further,
The depth of my pain doesn't show.
Don't worry about making me cry.
I'm already crying inside.
Help me to heal by releasing
The tears that I try to hide.
I'm hurt when you just keep silent,
Pretending she didn't exist.
I'd rather you mention my child,
Knowing that she has been missed.
You asked me how I was doing.
I say "pretty good" or "fine."
But healing is something ongoing.
I feel it will take a lifetime.
Author~Elizabeth Dent 

   

‘The Brave Little Soul’

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, 'Why do bad things happen; why is there suffering in the world?'

God paused for a moment and replied, 'Little Soul, do not be sad, for the suffering you see, unlocks the love in people's hearts.' The little soul was confused. 'What do you mean,' she asked. 'God replied, 'Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.'

The little soul began to understand and listened attentively as God continued, 'The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle - for the good of all humanity.'

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, 'I am brave; let me go!! I would love to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!!'

God smiled and said, 'You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.'

God and the brave little soul shared a smile, and then embraced. In parting, God said, 'Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.'

Thus at that moment the brave little soul was born into the world, and through her suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. People checked a website and sent notes of encouragement. People made and brought meals to the family of the suffering. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened.

God was pleased......