Monday, September 26, 2011

Sunday, September 25, 2011

09.25.11

It's September 25, and simply because I can' t think of much else to do, I want to tell you 25 facts about me. You may find it amusing, you may not. I don't really know. I'm not really sure if anyone reads this at all really! Oh well. If you're here, thank you! Lehhgo.

1. I listen to Pandora Radio all. the. time. It's an addiction, I think. And a dangerous one, as I always find tons of new music that I love and want on these stations. My favorite station thus far is my 'Train' station (no pun intended... hehe!). It's fabulous.

2. It's taken me this long, but I'm finally starting to figure out who it is I want to be. This is not to be confused with what it is I want to be, because with that I have no idea. But I'm coming to terms with that. I'm me, and I'm loving who that is right now.

3. 20 Questions is my favorite game ever. And one of my best friends and I have this on-going game, which has turned from 20 to approximately 192 questions, and I absolutely love it. It makes my life a lot brighter. And I have yet to have a shortage of questions!

4. Photography is one of the most amazing, rewarding, and fun arts I've had the pleasure of taking part in. And I've had so much fun learning and soaking it in lately! I hope I continue to develop my passion and talent in this area.

5. I have an odd taste in music, and it spans across almost the entire genre spectrum. And I love it.

6. Band season, which is right now, is one of the most rewarding and stressful times of the year. I'm soaking in every last drop I can manage to. The band is my family, my home-away-from-home, my best friends, and my favorite part of the day. I love those crazy kids (:

7. My best friend Sarah and I compliment each other so well. I like to drive, she likes to ride. I have no sense of direction, she has an awesome one. She likes to eat the cookie part and I like to eat the chocolate chips. We finish each others sentences. I'm so lucky to have her. She has helped to get me through so much. I owe her a lot, and I love her even more.

8. I've come to realize that my relationship with God isn't based in church, but rather within myself. I've grown closer than ever to my Abba in the last year, even though I'm attending church must less frequently than I used to. It's a different relationship... it's my own now. I'm learning for myself, rather than just taking someone else's word for it. But I do love my Sunday School girls!

9. I want a treble clef and bass clef heart tattooed on my hip. But it probably won't happen.

10. I constantly crave fruit snacks. And if they are shaped like princesses or dinosaurs, well then it's just the cherry on top!

11. I bought a new snuggie a few weeks ago and I use it all the time. It's honestly improved my quality of life... I highly recommend one if you don't have one already.

12. If I could have any pet in the world, I would have a giraffe and I would name him Bradley. We would be best friends. And have matching sunglasses.

13. I don't like the texture of tomatoes, cottage cheese, cocoanut, or turkey pie.

14. I'm a gLeek. And proud of it.

15. I just saw The Lion King in 3D last weekend. It was worth every single penny of my over-priced ticket. 'It was awesome' is an understatement.

16. I wish I could wear a tutu through the grocery store and not get stared at like a freak.

17. I. LOVE. QUOTES. I'm addicted to looking for them, and I use them all the time. Seriously, there needs to be a website with every important quote ever!

18. I love youtube videos. Whenever I have a bad day, they can always make me laugh. People's stupidity can be really amusing.

19. I love Zumba. I go every Tuesday and it's just plain fun. I'm all for working out in a gym if you have the option, but I get bored so fast in there. Zumba is always new and the energy in the room is just pulsing. I even got up on the stage for a song last week. It's definitely a huge highlight of my week!

20. I love comments. My heart is happy when I see that little '1 comment that needs to be moderated' on here, or when I have a little red number notification on facebook. It's a joy for me, regardless of how lame. (:

21. I'm a huge Disney fan, especially Disney Princesses. I want to be one one day. I think that would be the most amazing summer job ever.

22. I dance and sing at the top of my lungs in my car. I'm pretty sure over half of my highway companions think I'm insane.

23. I read blogs of people all over the world, and I've people from all over the world to comment on my blog. It amazes me that we can all be so connected like this. God's blessed me with every single one of you who read this. I appreciate you more than you know!

24. I'm really sentimental about a lot of things. I also am a sucker for little things that remind me of bigger things. Like jewelry that has a message, or bracelets that a little kid gave me.

25. I'm loving this life more and more each day I get to live it. How very blessed I am. So, I hope this finds you well and I hope that you're soaking up the life you've been given as well. Never forget to keep on stringing the little things!

Love,
Sarah

Wednesday, September 21, 2011

09.21.11

Hey.

Just letting you know, I haven't fallen off the face of the earth. I'm still here, and absolutely in love with my life right now. I'm using a camera on a regular basis. Yep, I'm a happy camper (:

Love you guys. I'll update soon, pinky. Life's just a little hectic at the moment.

Love,
Sarah

Monday, September 12, 2011

Music Mondays.

Music keeps me breathing. Seriously, I have music playing for 99% of my day. These are just a couple of ones that I love to sing with lately. Enjoy them, and enjoy today. You deserve it (:




Lady Antebellum- Dancin' Away with my Heart.


Rodney Atkins- Take a Back Road

Friday, September 9, 2011

Five Minute Friday

& here's to the weekend that has taken five lonnnnnnng days to get here (:

Today's Topic: In Real Life.

GO.

If you know me, you are fully aware of my immense love of photography. There is almost nothing sweeter than holding a memory in between your fingers, where it forever remains unchanged, regardless of if the people do. But really, there's nothing in the world that can replace real life. Sometimes, it catches me off guard. Life is beautiful... stunning, even. The little moments added together are what make it so, so sweet. The moments of precious conversation with friends, or long-awaited hugs, or even sharing a meal together... nothing can replace that. It's true, photography helps you retain those moments for a little while longer than usual, but it still doesn't replace having been there.

But, that's where my daily challenge for myself comes in, and I'm challenging you to do the same. Today, I challenge you to make today a day worth remembering. And tomorrow, I challenge you to do the same thing again. Memories are wonderful, but today is your gift. Today is your real life, make it amazing (I promise, you DO have the power to do that!). Soak it up, every last breath. Live the life you'll want to remember, and live it today. This... right now... your real life (:

STOP.

Love,
Sarah

Wednesday, September 7, 2011

The Plight of Pediatric Cancer

When you become a part of the Pediatric Cancer World, you never forget about it. It's a world that none of us wish to be in, and that we wish no one else would ever have to enter, but it is a world full to the brim with fellowship and deep, compassionate friendship. Through this world, you meet lots of new people. One person that particularly touched me over these few years is Miss Julia Scavo, along with her mother, Amber. They are wonderful, amazing people, and you should definitely check out their blog right here.

Today, I am reposting a post by Mrs. Scavo that really moved me. I did my Junior Project on this very topic last year, and yet these stats never cease to amaze me. Please take the time to read it, and take the time to get involved and spread the word! Happy Childhood Cancer Awareness month!!!


Today, as you attend work or school, visit friends, or meet someone new; please tell them a bit about childhood cancer. How it remains underfunded and under-recognized as the#1 killer disease of our children today. That's OUR children.

Chances are 1 in 300 that any child will be diagnosed with cancer before age 20 (That's 14,500 kids every year!). 20% of those diagnosed will not survive five years. Every 4 hours a child dies from cancer. Of the 80% that do survive, 60% are impacted by the cure; resulting in long-term health effects including secondary cancers, major organ damage (not to mention minor organ damage), infertility, and social/learning disabilities.

It is widely recognized that the progress in cancer survival rates among children is the result of successful clinical trials, where work from our nation's laboratories is translated into clinical application. For children, the standard of care today is to be treated in a clinical trial, and more than 70 percent of children with cancer participate. That compares to only about 3 percent of adults (and only 1.5 percent of adult Medicare patients) with cancer who are enrolled in clinical trials. Many of the breakthroughs in adult cancer treatments actually come from pediatric clinical trials.

The triumphs over childhood cancer are to be celebrated, but there continue to be limitations on pediatric cancer research. Just a small fraction of the dollars spent on research in this country is directed to pediatric cancer.

When my child was diagnosed with cancer, I had no idea the plight of pediatric cancer in this country. I have received quite an education in the trenches and have felt God's calling on our family to make a difference in this fight. I have had many conversations with individuals about much of this information. I have written posts about many of these facts, figures, and organizations. But I have never taken the time to consolidate all of my research and writing. So here goes...

Childhood cancer is severely underfunded both publicly and privately. All 47 pediatric cancers combined only receive 3% of the national government funding! For every dollar spent on a patient with breast cancer, less than 30 cents is spent on a child with cancer. What does this mean for a bottom line? In 2007, breast cancer research received $843million in government funds and $256million from the private sector. The combined total for childhood cancer was $130million. Why does this discrepancy matter?

The current treatment for breast cancer involves targeted therapies, immunotherapy, and genetically-tailored treatment plans. The survival rates for breast cancer are 90%. The average age for diagnosis is 61 years and quality of life and health is preserved in most cases. For children the exact opposite is true. The average age of cancer diagnosis is 6yrs and 80% of cases are metastatic disease (already spread). The prognosis is fatal for 20% and lifelong debilitation and disease for 60%. The remission rate is only 27%!! That is a loss of 71 years of healthy life. The average age of diagnosis for all the other types of cancer is 67 years and billions of dollars are being poured into research. Prostate cancer for example has a 99% cure rate, but receives the third highest level of government funds (after breast and lung cancers).

Sadly, this bias continues in the private sector. The American Cancer Society is probably the most well known national cancer organization For every $1 raised at a Relay for Life event, less than half a penny is given to pediatric cancer research grants or patient support. Some may wonder why we Relay? To raise awareness for our children! We have participated, but do not fundraise for them. Our kids are the forgotten ones no one wants to think about.

I'm sure everyone is aware that October is breast cancer awareness month. It is a tremendously successful fundraising campaign. Breast cancer awareness... from product labeling, to network recognition, to corporate donations, to media attention, and pink ribbons.... continues to trump every other type of cancer. It is our hope that we can follow in that same successful footsteps with childhood cancer.

How does underfunding affect childhood cancer treatment?
Of the 120 new cancer therapies for adults approved by the FDA between 1948 and January 2003, only 30 have shown use in children. Of those 30 drugs, only 15 acquired any labeling for pediatric use during that same 55-year period. Source: Molecular Cancer Therapeutics, August 2006.
Over 55 years, 15 new cancer drugs labeled and approved for children, compared to 120 for adults. In the past 30 years, when medical science has exploded, only 1 new drug has been developed for pediatric cancer. ONE!!! We should be ashamed of ourselves.

Everyday parents are given the life shattering news that nothing more can be done for their child. Can you imagine anything more heartbreaking than having to tell your child you can't help them? These courageous children who want to fight and want to simply live have nothing left to do. In a country that happily spends $5 BILLION every year on halloween and $56 BILLION every year on their pets, you can't help but question our national priorities.

All of this probably leaves you wondering, why is pediatric cancer funding so neglected? This is the million dollar question.

I think there is a large misconception that it is being "taken care of". We live in the richest country in the nation. We step up to help whenever catastrophe arises. We have the best medical institutions and researchers in the world. We are the home of St. Jude hospital and they never turn any child away. Right?! Well actually, St. Jude's serves 400 families a year (of the 40,000 total in treatment). The children accepted must fit into their current clinical trials. The rest are turned away. St. Jude research does benefit other patients and they do consult on other cases, but of the total money they raise 20% goes to fundraising and administration, 60% goes to the comprehensive care and treatment of the 400 families in their care, and the only the remaining 20% goes to research. They have tremendous facilities, extraordinary doctors, and a comprehensive approach, but they are like the country club of cancer, that serve an elite few. St. Jude's is doing amazing things and have made tremendous strides for all children with cancer, but the majority of the country thinks they have it all under control and any child with cancer can be treated at their hospital. That is far from the truth.


The majority of children with cancer (90%) are treated at a group of 200 local hospitals who belong to the
COG (Children's Oncology Group). This amazing organization was formed ten years ago to unite the clinical trials and research being conducted worldwide. This ensures that no matter where a child is treated they are receiving the most current protocol and their results are benefiting research everywhere. The COG combined with the National Childhood Cancer Foundation to form CureSearch. Here is a link to their major successes so far. And 95% of their funding goes directly to research!! Only 1% of charities can make that claim. Curesearch needs to become the name and face that everyone associates with cancer. And second and third in that running would be St.Baldrick's and Alex's Lemonade Stand who are committed to pour money directly into research for kids' cancers and are funding additional grants at COG hospitals.


And for the nitty gritty of how childhood cancer ended up in this predicament, there is
a wonderful article from the American Association for Cancer Research. It essentially boils down to the following:
  • Kids' cancers are not profitable to drug companies.
  • Kids do not vote.
  • Kids cancers are different than the same cancer in adults all the way down to the molecular level.
  • Kids' cancers behave and respond differently. (They are different cancers with the same name.)
  • There are too few kids as a total research base.
  • Kids get the hand-me downs of adult treatments. Pediatric formulations are not always available.
  • Kids bodies are not little adults.
  • There are complex ethical issues with kids.
But thanks to CureSearch, the COG, St. Baldrick's, Alex's Lemonade Stand AND the parents, doctors, and nurses in the trenches; these roadblocks are being attacked brick by brick and in the war against cancer there is HOPE for our kids. But that hope depends upon the continued support of compassionate individuals and public awareness.

As I finished typing this post my new favorite commercial came on TV, not a coincidence. You may have seen it. The Hyundai Hope on Wheels campaign has a new ad. They have given $14.2 million to pediatric cancer research grants in the past few years. It is a glimmer of hope that the nation is taking notice...

(and a cool feature... one of the handprints on the wall is for our own Vinny :) love it!!)


Love you all very much!

Monday, September 5, 2011

I love...

Just a few things, in no particular order (:


















Thursday, September 1, 2011

09.01.11

Happy Thursday (: