A wonderful husband and wife volunteer team from Make a Wish came out on Tuesday to talk with Gabriella about her "wish". What an amazing foundation they have put together. She was so very excited as she was greeted with a princess balloon and a bag of goodies. She was asked about her wish...to go to Disney World or a Disney Cruise. (Yes, I did coach her and give her fun "ideas" on places to go.) Adam and I want to her to be able to enjoy the wish so we were debating when would be the best time to go. However it works out, its going to be amazing and she deserves every little bit of it!
Later on in the evening, Adam's parents greeted us with our new (used) RV!!! Back in December, we rented a motor home and drove to Death Valley, through the Mojave Desert, down to Grandma and Grandpa's house and back up the coast. We all loved the trip and the girls especially loved being in the motor home. So Adam and I decided that an RV would fit many needs for us at this time. It would give Grandma and Grandpa as well as Nana and Papa a place to stay when they came to help out and it would serve as our living headquarters Monday thru Friday during radiation. Since we can't go very far these days, we can also take the RV out for a "mini" vacation overnighter here and there. Adam has spent countless hours on the computer researching RV's and many hours in the car driving around to look at them. (Most were in Sac). His parents took on the duty down south and we finally found something nice! With a little cosmetic work and some repairs, its going to be great and boy are we relieved about not having to drive up to Stanford every day.
This last week has also been the excitement of Gabriella's picture on the front page of the Santa Cruz Sentinel with the same article being published in the San Jose Mercury News. We have gotten a huge response from friends and individuals who were inspired by our story.
Maybe its the staggering lack of funds for pediatric cancer that has really overwhelmed me. In the very beginning of our journey (only 3 months ago), I was asked to be a part of the video for the 2nd Annual "Mama's Night Out" to benefit Cookies for Kids Cancer. I was not totally ready to go online and research this cancer that was invading my little girl's body but wanted to find out more about Liam, son of Gretchen Witt who founded CKC. The last entry I read in the blog Gretchen and Liam wrote was a letter to Liam. He and his parents fought a neuroblastoma for 4 1/2 years and last May, he passed away 1 1/2 years ago at only 6 years old. I cried my eyes out that night, for a little boy and his family I had never met. Reading Gretchen's blog and fighting cancer ourselves has completely changed me in ways I can't begin to describe. CKC was started because of the significant lack of funds allocated toward childhood cancer research. Now, I'm finding out the motivation for starting foundations such as this. I was shocked to hear that only 3% of total cancer research funding is designated to childhood cancers. Only 3%. Maybe its time to start making changes.
Some research I recently found:
Today as we visited the hospital for our weekly vincristine. After seeing the facts for myself, I have this nagging question as to why so little is spent on childhood cancer research. We were able to talk with Dr. Cohen, a wonderful oncologist who has been at LPCH for many years, and ask why so little was spent on research for childhood cancer. What we talked about was the rarity of cancer in children. In about 3,000 cases they see of childhood cancer, there will be about 300,000 cases of adult cancer. Even though it happens and we hear about it all the time, obviously it happens much more in adults. We also talked about the possible years of life you give when you cure childhood cancer...probably about 60 to 70. By all means, cancer in adults is very important to study and research. But, why so little to these innocent little beings...our future. Why aren't we investing more into finding a cure for our future? I just don't understand.
As I think about all the time and energy our friends, our community and our family are putting into helping us, I am overwhelmed with emotion. I don't know what I ever did to deserve such goodness. The countless hours our CrossFit family has spent on this upcoming fundraiser, the days our parents and families have spent driving back and forth to the hospital, individuals in our community who have reached out to support us, the newspapers, my friends who have put their families and jobs on hold for hours at a time all to help us...us. How? Why us? I just don't know how to say thank you enough. I never knew the universe could be so giving. I have a whole new appreciation for the goodness in people.
SOME OF THE CONTRIBUTORS FOR THE RAFFLE AND OBSTACLE COURSE PRIZES:
REEBOK
STUDIO 831, SC
FITAID
TIGER MARTIAL ARTS, SV
THE FISH LADY, SOQUEL
DAVE'S ALBACORE, SC
GIFT CERTIFICATES FOR:
KIANTI'S
OLITAS
CLOUDS
LOS GATOS BREWING COMPANY
WINE TOUR FOR 6
FACIALS
MASSAGES
As the battle wagers on, I have to remind myself to stay strong. I often think about the phrase hanging in the bathroom at our gym (one that I first looked at when this all began) that says "Wake up each day believing in your dreams..for you are made for amazing things". Is it sayings like these that strike us at certain moments when we are most vulnerable, to help us believe that it's true? Or do we constantly remind ourselves that this IS what was meant for me; this is my opportunity and I will see it through.
Great post Kristin. This has been a call to action, not just for G but for all those who are affected by childhood cancer. We will fight this.
ReplyDeleteWhat a beautiful, thought provoking journal entry... I had no clue that so little research dollars went to pediatric cancer research. I know you do this blog for your little girl and I want her and you to know that she has an even BIGGER cheering section on the "sidelines".
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