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Posted 2020-02-04T20:21:00Z

Birthdays and braces...

Luke and I celebrated our birthdays (Feb 8 and 12) early last night with Paul at Luke's current favorite restaurant Lula Cafe. Luke wanted to be able to fully enjoy his birthday meal before getting braces today, and he sure did! I love enjoying food with that kid (and just watching him enjoy food).  

The sous chef, the chef de cuisine and the owner all stopped by. The owner came up with his hand out, “Hi Luke, I’m Jason. I haven’t been here when you’ve been in before. I’m so happy to meet you.” (Of course Luke knew who Jason was.) We talked a little and he told us the sweetest story - a screenshot of the story from his Instagram is in the photos. Hope it’s readable here.

Luke was due to get braces around the time he was diagnosed. I'm feeling bummed that he now has braces after all he's been through, but I'm so, so grateful that he’s here to have them.

On this world cancer day, we are so lucky to have Luke still here and doing as well as he is. We are holding everyone who has been punched by cancer close to our hearts.

Here’s a great video about some of the impact that Cycle for Survival has on research at MSK. Even the first couple of the six minutes are pretty powerful and worth your time. To think that four year survival is something to cheer about is crazy, but I know far too many people for whom 4 years would have been such a gift. 

I recently read Chasing My Cure by David Fajgenbaum, and this quote really resonated with me:
“The truth is that no one knows everything, but that’s not really the problem. The problem is that, for some things, no one knows anything, nothing is being done to change that, and sometimes medicine can be frankly wrong.
I still believe in the power of science and medicine. And I still believe in the importance of hard work and kindness. And I am still hopeful. And I still pray. But my adventures as both a doctor and a patient have taught me volumes about the often unfair disconnect between the best that science can offer and our fragile longevity between thoughts and prayers and health and well-being.
This is a story about how I found out that Santa’s proxies in medicine didn’t exist, they weren’t working on my gift, and they wouldn’t be delivering me a cure. It’s also a story about how I came to understand that hope cannot be a passive concept. It’s a choice and a force; hoping for something takes more than casting out a wish to the universe and waiting for it to occur. Hope should inspire action. And when it does inspire action in medicine and science, that hope can become a reality, beyond your wildest dreams.
In essence, this is a story about dying, from which I hope you can learn about living.”

I’m probably not going to find a treatment/cure for anything like Dr. Fajgenbaum did for his own disease, so that’s why I’m putting my hope and fundraising efforts into research. Click here to do the same through Cycle for Survival. 

#beatthebeast #survivalnotsorry #morethan4 #jointhebattle

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