I try to find meaning in it all, but I have no answers. Jake was diagnosed with Medulloblastoma a few months after his second birthday. The same ugly disease that took Naya and so many other beautiful children. I suppose all of us think our children are special, but these kids who go through what they go through are beyond special. They almost seem immortal and maybe they are in some ways. We continue to share their story so that other children don’t have to go through what they went through.Read More
The RiderGirl blog is dedicated to children with cancer.
Every day, there's a radio or TV commercial with a well known hospital claiming to strike out cancer, save us with targeted treatments and let us hop on a bike hours after radiation or chemo. Naya went through surgery, chemo and radiation. She took a full year to regain her strength to get back on a bike.
If you have anyone close to you touched by cancer, you know the reality.
Cancer rates are going up. Cancer is predicted to become the leading cause of death overall, surpassing heart disease. It's already the leading cause of death among kids in the U.S. and growing. And, if you live in less fortunate country, the survival rates are a fraction of those in the United States.
- 1 in every 285 children in the U.S. will be diagnosed with cancer
- In the U.S., one out of every five children with cancer will not survive
- Nearly 2,000 children in the U.S. will die of cancer every year
- The vast majority of kids who do survive will suffer long-term side effects
- A child’s probability of surviving cancer is poor in less-developed countries
The runs, walks, pool parties, birthday donations, lemonade stands and childhood cancer events are critical as they are the primary source for funding new treatments and finding cures.
In less than 2 years, our donors have helped us raise over $350,000. We have also made sure 100% of the donations to Team Naya and The Naya Foundation are used for childhood cancer research and cures. So far, we've been able to commit to a clinical trial, gene sequencing and fund research to support advancements in childhood cancer cures. Thank you.
Dr. Benjamin Mizukawa, a St. Baldrick’s Scholar at Cincinnati Children’s Hospital Medical Center, puts it this way:
“When you save a child’s life, you affect families, future generations, and everyone that child will influence over a lifetime. When you support a scientist, you affect not only the current work, but all the trainees, collaborators, and personnel connected to the work, and all their future studies that will follow over a lifetime."
**Statistics from American Cancer Society, 2014
We hope you're happy and smiling down on us. I imagine you with Grandma Taru, Grandma Betty, and Grandpa Bhupen all the time. I know they are taking good care of you. I hope you're enjoying Rekha. I feel you at times watching over me and smiling. Thank you babe.
This has been a busy month. I didn't have much time to just be with you. No matter how busy, I was determined to keep your cause moving forward. But I'm sure you knew that. I was at AIS this week. I love that school, but I shouldn't be the one going there, it should be you. A lot is happening there in your honor. They are going to create an award for the 6th grade which represents what you stood for, which was so much. They are also creating a space on the playground dedicated to you and PJ. Also, two Agnes Irwin girls pledged over $5,000 that they raised for your cause through their Hives for Lives club. Dad and I are creating a scholarship in your name to help a young AIS woman in her junior and senior year stay at AIS through graduation. Your classmates are also going to help us with the Parkway Run. None of this brings you back to us, but it all ensures your dream to cure pediatric cancer will be carried out and you will always impact the lives of girls at AIS.
We met Dr. Fisher and talked to CHOP too. In the last year, you raised over $200,000. Just this past week, we gave $50,000 of that money to genetically sequence medulloblastoma tumors of other children. Your tumor was sequenced, but it turns out that there's no ongoing funding to do that, so your money is going to help those kids get closer to a cure.
This month, TheNayaFoundation will be officially launched. I have many ideas that were yours, and everyone wants to help. We won't stop until there is a cure for your disease. I promise you that.
Yesterday, we took Zak and his friends downtown to the Villanova game. You would have been so annoyed with 4 teenage boys. Dad and I laughed thinking about what you would be saying about them, and how you'd be rolling your eyes. I passed the Kimmel Center and thought about the time you read your poem on stage for Dream Flags. You weren't nervous at all. I was so proud of you. And, I passed Citizens Bank Park and remembered when you walked with me for the American Heart Association and TE team. You did so much in your lifetime Naya, all the way until you had to leave our earth. More than most people will ever do.
Our heart breaks for you constantly. I imagine holding you and giving you kisses every day, and we hear you laughing and see your smile all the time. Valentine's day is coming up, and Zak's birthday. We're going to Vail. It's going to be a killer being there without you. Help me be strong Naya. Love you. Mom
January was a crazy month. I love work and what I do, as well as the people I get to work with everyday. Add strategic and time sensitive projects, and the workaholic side of me emerges and I get easily consumed. Only this time, working alone wasn't enough to fulfill me. I greatly missed that space I've created over the past several months to be with my family and Naya's memory. I didn't have the mental capacity to be in the moment with the people and thoughts that matter most to me. I veered off course...just for a little while. With the help of my brother, caring friends, Hank and Zak, I quickly figured out why I was feeling off center. I was missing that space, and petty things bother me. That space keeps me grounded and focused on the bigger picture.
I've profoundly changed over the past two+ years, and being grounded in who I am and on what matters most to me is my quest. Draining my energy worrying about what others do, petty drama, or things I can't change is exhausting. I need that energy for what I want to do for me, my family, people I care about, and most of all, Naya. This blog is part of that quest.
This week will be 3 months since Naya passed. I miss her more every day. I believe she's with me every minute of the day. I'm proud to say that I am more grounded in what she stood for and am making progress.
There's progress on our goal to cure pediatric cancer. Naya's foundation paperwork is getting filed so we can get it up and going very soon. We also received over $25,000 in donations in January from amazing people and organizations. These funds will go be directed towards Medulloblastoma (Naya's disease) sequencing at CHOP. Genetic sequencing enables future targeted therapies and advances in pediatric cancer treatments.
This week, President Obama made it a priority to fund the Precision Medicine Initiative, calling for new funding to build a national infrastructure that will allow researchers to custom-design more effective therapies based on a patient’s individual genetic profile.
Read about it. It might change your life.
"Precision medicine refers to treatments tailored to a person’s genetic profile, an idea already transforming how doctors fight cancer and some rare diseases."