We have so many more new readers since the wreck so I will share info on the walk. Alicia and I, along with other parents of cancer kids in the Wichita area, have been planning a Curesearch walk since January. The walk will be on Sept. 15th at MSU in Wichita.
Most people have never heard of CureSearch. We certainly didn't until Briley was diagnosed. So what makes CureSearch so special? That's easy! CureSearch funds the COG (Children's Oncology Group) research. Briley is currently on a COG research trial and has participated in others. It's a really big deal for us because during this phase, Briley is getting 1/3 less chemo than she would on standard protocol. The survival rates are the same! We will always be worried about the late effects of the chemo, so anytime when we can put less poison into her body with the same outcome as standard protocol, we are going to do it! Thanks to this research, maybe it will become the standard!
What are late effects? Since these kids have very harsh chemo treatments at such a young age, they are candidates for issues later in life such as secondary cancers, osteoporosis, learning disabilities, ect. The current 5 years survival rate of all pedi cancers is 84%. However, if you look at the 30 years survival rates, they drop down to 67%. 30 years may seem like a long time, but in 30 years, Briley will only be 34 years old.
You may ask why don't we have a Relay for Life team or donate to the Leukemia & Lymphoma Society. Well, it's simple. We want the biggest bang for our buck going towards pediatric research. Unless you live in the pedi cancer world, it's hard to see the difference between adult & pedi cancers & research funding of the two. So little is given to the kids compared to adults. Yes, adult cancers are far more prevalent and I'm not about to call pedi cancer "rare", because it's not. But when you take into account that only one new drug in 20 years has been approve for pedi cancer is a little ridiculous. Why is that? Because there isn't a market for the pharmaceutical companies. Sad but true.
Ok, I got a little off subject, but the subject always gets me fired up. These kids shouldn't have to suffer like they do. We've met many cancer kids during our time at Cooks. Some of the kids that Briley played with have earned their angel wings. It's hard telling Briley that her friends have died because of the same disease that she has.
Back on subject - why we don't do Relay for Life. The American Cancer Society only gives .04% to pedi cancer research funding. The Leukemia & Lymphoma Society gives less than 4%. So you can do the math. I am not saying they are bad organizations, they are not. It's kinda like donating to Susan G. Komen for prostrate cancer research.
Since CureSearch is directly specifically towards pedi cancer research, they give 96%. I don't care what organization it is, but 96% going towards research & education is big!!! This is why we are planning the walk!!!
We would love to have you on Team Briley or you can form your own team. Also, you do not have to be present at the walk to be on the team. You can sign up as a virtual walker!
This link will take you to the Team Briley Curesearch page so you can sign up and help fight pedi cancer.
Thank you for your consideration and we thank everyone that keeps up with the blog!!