Well I am headed to Washington DC Sunday morning with my sister, Melanie, to speak up for the kids in Utah with cancer and to lobby congress for much needed funding for childhood cancer research. Since the day the director of advocacy for CureSearch contacted me to ask me to be Utah's Team Leader, I have been thinking about what this opportunity will bring. I have given a great deal of thought about what this position means. I want to share with you some of our experiences as I think about all the kids who desperately need a cure.


At the Childhood Cancer Christmas Foundation party, I had the opportunity to meet some new families and reconnect with some cancer families I already knew. If you were following us last year you might remember a couple we met who had lost TWO boys to cancer. She so completely randomly sat at our table again, and I was so happy to see her! Her story absolutely broke my heart last year. I must say she looked a great deal better than she had the previous year, and she told me her family had been able to have some great times this year. Not without sorrow, I am certain about that, but a little bit of good feels wonderful, I imagine, after going through something like that. I still think about the loss her family endured. Both of her precious boys had Down Syndrome, as innocent and sweet as you can imagine. Both of them had their lives stolen by cancer.

Another couple that sat by us have a daughter with a brain tumor. She has had one since she was a toddler, and has had so many brain surgeries I couldn't keep track. Shunts that haven't worked, and had to be redone, surgery to remove the tumor, they have truly been through hell with cancer. I just sat there in jaw dropping disbelief listening to their story. The first night we met the parents only, so I knew her whole story before I met her. She has had to go to the east coast to find someone who will operate on her to try and save her life from this beast of a disease that is attacking her. I can't say I blame them, everyone here is telling them there is nothing they can do. The surgery would be too dangerous and probably would not be successful in eliminating the cancer. WHAT?? This is my child, there can't be nothing?! So they found someone willing to do the surgery, and have been traveling back and forth to the east coast. The surgery is done, she survived it, now they are waiting to see if the cancer will come back. She is 10 years old. Her whole life has been fighting cancer. When I was able to meet her the next night, I could see what this stupid disease has stolen from her. She couldn't hear well, she needed help to walk, and she couldn't make eye contact with me. I introduced myself to her as I tried to keep a handle on my emotions, and her mom told her what I was saying loudly into her ear. Jade was with me and this little girl just looked at Jade and reached out and grabbed her hand and held on to it. Jade didn't even flinch, she just sat there holding the hand of this sweet girl who may not be alive the next time I see her family.

Then, we went to sit with Santa Clause, and when it was our turn, one of the directors of the organization came up and asked if someone could get in front of the line. She said he was terminal and was so tired he needed to go home, but he wanted to see Santa first. Obviously we said of course. How I kept from out and out bawling, I have no idea, but this boy was so thin that all I could see were his bones. His whole family was there and helped him up to see Santa to take a picture. He was smiling, in the moment of joy that he was experiencing in his dark, dark world. I knew he didn't have much longer to live just by looking at him. I don't even know if he is alive right now.

So when I say that night was bittersweet, that is why. That party was so wonderful and so sad at the same time. This world that I am a part of is very dark and sad. So sad. But real. This is not a movie that makes you cry. These are real children that are suffering and dying from this disease. I have seen them. I have seen Brinley suffer, and I have had small glimpses into the lives of children whose suffering is far greater than my daughter. I am in this world, and although I hesitate to say I am glad to be here, it is an absolute privilege to be placed somewhere that not very many people have the opportunity to be a part of. Now I know it exists, and I have seen it with my own eyes. I have been given the privileged to meet the bravest children on the earth. And I have been given the privilege to use MY voice for a group of people who have no voice. I remember when I decided I would be a voice for these brave warriors, I was rocking Brinley after a particularly hard treatment, and I made a promise inside myself (to Brinley) that I would never, ever forget what she went through. That even when the pain of what I saw subsided, and as life goes on for us, and we come to a happier place with no cancer (the day I pray for and hope for), I will remember the pain and the suffering, because she deserves that. She deserves for everyone to know how brave she has been. I will remember her first dose of chemo. I will remember the surgeries and the pokes and the spinal taps, and the sedations, and the hospitalizations. I will remember the day her hair started falling out. I will remember the day she asked me if I could be Brinley. I will remember EVERY child I have seen battling this disease. And I will remember all of the angels who have lost their battle with our enemy called cancer. And I will not close my mouth until every child has a 100% survival rate. So often I hear that Brinley has such a great survival rate. Ask the mother who had to bury her child with that same survival rate if she is satisfied with 90%. When someone kidnaps or harms or murders a child, there is an urgency that we have to find the child, or see the harshest of justice put down on the perpetrator. Cancer is a killer of children. We need to treat it the same way we would treat any killer of children, with the utmost of importance and priority. We need to do everything we can to get them what they need to BEAT it. Look how far they have COME! Forty years ago Brinley's survival rate was 4%! Survival rates are climbing, so we can see there is progress, there is HOPE. What do they need? Money for research? Lets get them the stinking money for research then! Brinley was not even offered to be on a clinical trial. There wasn't one open at the time because of the lack of funding. Nobody asked me questions that would help them figure out what is causing cancer in children. That was always weird to me. Why wasn't there some kind of survey to fill out about where we live, what our circumstances were, what we lived by, what we ate? It was just a big shoulder shrug when I asked why she got cancer. Now I know, these are all things that need funding, and they can only go so far with what they have.

I will go to Washington DC with each child who is in battle or has lost their battle to cancer in my heart. They will give me strength and courage to do what is so out of character for me it is almost hysterical. I will think of Avalon, Serenity, Abby, all of the children on my ALL List that I have come to know and love, some of them suffering terribly right now. I will think about the teenagers I see at clinic lying in the infusion room with a blanket getting chemo, or getting a blood transfusion. I will think of each child I see with only a few strands of hair left, or each child I see who is limping because their legs are in such pain from the cancer or the chemo. I will think of the boy who wanted to see Santa, and the child who put on the wall at clinic that their wish was simply to feel good. I will think of my Brinley, and all that she has been through and all the treatments she has yet to endure. Brinley, I love you. I love you so much. Life would not be the same without you. The thought that this disease could yet take you is unbearable. How I wish you did not have to endure all of this, but how grateful I am that you have allowed me to enter this world where children are heroes and need to be saved all at the same time. I am truly privileged and I will do everything in my power to be your voice.

Wish me luck......I will give a full report as soon as I can!

10 comments:

Kat said...

Bless you! You are an amazing mother and such a strong voice for the little heros.

Stacy said...

Good luck!

Anonymous said...

I am so proud and blessed also to share a small part of this world of the beast that is cancer with you. Have a safe and great experience.Know that my prayers and love go with you. As always xoxoxoxoxxoxoxo

Matt & Jen Hanks said...

Kristin,

It is so wonderful that you are such a strong woman for these children. It's amazing what we are able to do when we are fighting for what we believe in. I know that you will do great in DC! I know that you will be a great advocate for all of those sweet children. We back you up 100%. If you ever need us to do anything, we will be right next to you.

Jen

Lidia said...

I'm David. My beloved Kristin, I'm in my knee for you. I'm praying to our Heavenly Father for you. I know with all my heart He will bless and proctect to you and He will put on your mouth everithing you have to said. I'm humble proud of you; It is your time, your very sacred time to be the voice of the children in need for help. Remember the Lord Promise: "...you are never alone.." . Go forth, I know God is with you. We love you so much. Grandpa David

Nat Lud said...

Wow. That post was so eloquently written and I am teary eyed as I read it. You have taken on this challenge on have grown so much from it and are an amazing woman. (You already were but it has been magnified.) I have not had to deal with the beast of cancer but I have dealt with a child who lives with other pains and surgeries and I agree that while I'm not thrilled we were given this path to walk on, I am honored that I get to be in the company of the most amazing daughter in the world. We too have met wonderful people and I'm grateful for these experiences. My prayers will be with you as you go to DC. I hope someday cancer will be no more! Good luck, girl.

Josh and Kandice said...

Good Luck Kristin! I can't think of anyone better to be an advocate for these precious children who have to fight for their lives against cancer. They do need a voice and you are the PERFECT voice for them.
You made me cry with that post, beautiful. Can't wait to hear how it went.

Kristin said...

Just wanted to thank everyone for the nice comments. I appreciate your support so much and I really need it! So thank you!

Phil Burns said...

EPIC.

You Rock! Amazing post - good luck in DC!

- Phil (too teary eyed to say much more)

Grandma Darlene said...

Our prayers are with you as you lift your voice to get the attention of our national leaders. We are inspired by your blog and check in often. Now I have the confidence to leave a message. I wasn't sure how before. God be with you Kristen. I wish I could be there with you! Love, Great Aunt Darlene and Uncle Will.