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Posted 2020-02-01T20:55:00Z

Beat the beast...

I had planned to post the video of Luke's teacher's fabulous speech for his Titan Pride Award. I'll post it soon, but it doesn't feel right to post it right now. If you're in the Luke Strikes Back facebook group, you've probably already seen the video as well as this post. 

It’s been another rough week in the rhabdo community. There are a lot of those, but some weeks and some kids just seem to hit my heart harder. Marlee, diagnosed at 1 year old, passed away at 4. Carter’s family found out 2 weeks ago that he had relapsed after just 2.5 months off maintenance and learned a couple of days ago that he is ineligible for the trial drug they were planning to start. He's 9 years old, and they are now focusing on quality of life rather than curative options.

Thursday night, Will passed away. He was a year older than Luke. We never got to meet Will, but I know that he had a beautiful smile; he was strong; he was positive; he was giving; he was determined to stay active; he was loved; he was prayed for. It wasn’t enough. Will even offered his wish from Make a Wish to help a little girl with rhabdo who needed to travel to seek other options from a specialist in California. How I wish that he, Luke and so many others could have gotten together sometime in the future to remember what they went through and to celebrate the scientific advances that finally found a way to beat the beast.

Will’s dad has been so kind, so helpful to so many in our rhabdo community. He does research and stays on top of trials that might be able to help any of us. He’s helped kids from overseas get care in the US. He supports all of us in the dark times and in the good times. He wants so much for everyone’s kid, someone’s kid, anyone’s kid to beat this beast. I’m so sad that his wonderful boy didn’t.

Please send love to Will’s parents, his sister and to all who knew and loved him. Please send love to Marlee’s family as they remember her and celebrate her life today. Please send love to Carter and his family, and hope and pray that he will still beat the beast. These kids and their families deserved so much more. 

If you'd like to help beat the beast, click here to donate to or to join our Cycle for Survival team. Registration to join the team closes this Monday. We'd love to have you! The password to join is luke. 100% of the money raised through Cycle for Survival will fund rare cancer research led by MSK within six months of the events. Because we've partnered with Team James, our team's dollars can and will be directed to rhabdomyosarcoma research. 

 

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Comments (2)

  • Lori Evans
    Lori Evans

    Beautiful post. I feel the love and will add all those mentioned to my prayers. #beatthebeast

    7 months ago · Reply
    • Amanda Gregory
      Amanda Gregory

      ❤️❤️ thanks for supporting our team, Lori!

      7 months ago · Reply