For 5 days in a row I have rocked my sick child. For 5 days in a row I have listened to her tell me she is sick. For 5 days in a row I have seen a shell of my happy 3 year old daughter. For 5 days in a row I have fought back tears of sadness for her and the dreadful disease that has been thrust upon her. And I have had an awakening.
In the beginning, I wanted to get through all of this for US. For my family. For my Brinley. I wanted the 2 1/2 years to be over so we could get on with our lives. A year later, I want more than that. I want more than for this to be over for Brinley.
This month is Childhood Cancer Awareness Month. I thought about Breast Cancer Awareness. During that awareness month, I see pink everywhere. I have purchased many items in support of Breast Cancer Awareness. Brinley was diagnosed during Childhood Cancer Awareness Month. I had no idea until later in the month when a friend pointed it out to me. As I look around this month, I am wondering "where is all the gold?" Where are all the Childhood Cancer Awareness items in the grocery store? They are not there. Why? Maybe it is because the people who suffer through breast cancer have a voice, and use it. They KNOW what it is like to have the horrible disease, to go through chemotherapy, or radiation, to battle for their lives. And they want the rest of the world to know too.
My awakening was this: I am Brinley's voice. I am her witness. David and I, we are the ones who have seen everything she has gone through. We have seen her pain and her suffering. No one else has been there for everything she has gone through. She doesn't have a voice in this world yet. It is run by adults. I am the one who must speak on behalf of children with cancer, because I have seen my child have to fight it. The day we go off treatment I will be one happy woman, but that same day, 46 other children will begin their journey through hell. A hell that I would not wish on anyone.
This is not right. It is not right for ANY child to be so sick, not just MY child. It is not right for ANY child to have to suffer a long and painful death. No child should have to suffer it and no parent or sibling should have to watch it. We need a cure. We need advocates for children with cancer. We need adults who will make the world aware of the suffering that is happening. So I will become one of those adults. And I hope that anyone who has followed us, anyone who has prayed for Brinley or any other child with cancer, will become one too, in whatever way you can. Donating money, or time, or passing out awareness ribbons. No matter how small or big, we can all be a voice for someone who doesn't have one. Here are some facts:
Childhood Cancer Facts
Each school day, 46 children are diagnosed with cancer.
One in 330 children will develop cancer by age 20.
Each year in the U.S. over 12,600 children are diagnosed with cancer.
Although the 5 year survival rate is steadily increasing, one quarter of children diagnosed with cancer will die 5 years from the time of diagnosis.
Cancer remains the number one disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
80% of children have metastatic disease at time of diagnosis as compared to only 20% of adults.
There are currently more than 270,000 childhood cancer survivors in the U.S.
Late effects of childhood cancer treatment are common in survivors, and approximately one-third are moderate to severe.
(taken from candlelighters.org)
When the children do survive, the long term side effects can be harsh.
Brinley asked me to rock her yesterday while I was already rocking her. "Rock me Mommy".
"I am rocking you."
"But I still feel sick."
My heart breaks every day I have to do this. When David gave her the steroids that make her so sick, she said to me "Daddy doesn't make me sick, he makes me better." It dawned on me that when we say "here is your medicine" she thinks we are helping her to feel better. With the very medicine that makes her sick. I went to the bathroom to get her a drink and had a good cry.
I don't know how you can go through this and not wonder God's role in it all. I don't believe he enjoys our suffering, especially when it is a child. But I do believe that suffering causes people to take action, and I know He enjoys us helping each other, coming to each other's aide. I do know that action is what gets things done. And I can sit back and help Brinley through this treatment and then go back to the way life was pre-cancer, or I can take action and be a voice for a group of people who need a voice so desperately. Would God have me go back to my life pre-cancer? I don't think so. How can I sit by and watch this and not take action? That would be tragic.
So we are starting with ribbons. A little late in the month, but hey, it's still September. If you live near us, and see me and I don't give you a gold ribbon, ask me for a ribbon to wear! When people ask you about it, TELL THEM about the children with cancer. Tell them about Brinley. Tell them to go to curesearch.org and see what they can do to help. If you don't live by me, buy or make a gold ribbon. They are super easy to make. We bought enough to make 300 ribbons for $4.50. And I am not crafty, those of you who know me can attest to that. E-mail me a picture of you in your ribbons. I will show Brinley. firstname.lastname@example.org
I have awakened and am ready to speak out! No more of this!! Let's find a cure and give children with cancer a chance at life. One child lost to cancer is one too many. One child sick with a frown on their face because of the poison running through their body is one too many. One child with long term side effects from chemo is one too many. We have to do better. That child is somebody's son, daughter, sister, brother, friend, niece, nephew, cousin. And that one is too many.