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Posts Tagged ‘research’

I’m Lucky

Posted in Boston, Fundraising, work, tagged , , , on April 11, 2013| 1 Comment »

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I do not have a rare disease. I am lucky that what hit me last year is one of the most common diseases. It may suck, but people know what it is, doctors can easily identify it and there are numerous treatments available. People with rare diseases are not so lucky. Often just getting a diagnosis is a struggle, never mind finding a treatment. That’s why awareness is so important. And that’s one of the main goals of our Genzyme Boston Marathon Team – to raise awareness of rare diseases, as well as funds to support NORD, the National Organization for Rare Disorders.

Want to help? Bid on one of the very cool items on our online auction at www.runningforrarediseases.org – it ends on Friday, April 12, at noon, so you better hurry up! Not up for shopping right now? Put on some warrior paint, like Nick and I did above. Each of our Marathon Team members are paired with members of the rare disease community. Phil is running in honor of little Wylder James who battled Niemann Pick A disease, and his parents have started the Warrior Paint Campaign:

“To show Phil our love and support for his efforts, and to remind him our Warrior Wylder James will be with him in spirit every step of the way … we have come up with a Warrior Paint Campaign!!  The goal is to receive 1,000 photos of YOU in your WARRIOR paint by next Monday!! It’s simple.  Dabble a bit of Warrior Paint (aka. face paint, or sunscreen) onto your cheeks and the cheeks of those you love and send them our way.  Send to me at shannon@wyldernation.org or post to the WN FB Page at https://www.facebook.com/Wylderjames ”

So get out your makeup or whatever and share the warrior in you!

 

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My Christmas Wish List

Posted in Cancer, Dreams, Fundraising, radiation, tagged , , , , , , , , on December 10, 2012| 2 Comments »

My first radiation was fairly uneventful, which I consider a very good thing. I’m praying the next 24 will be just as anti-climactic. But what I observed while at Dana-Farber made me happy. I saw a woman who (apologies for judging a book by its cover) appeared to not be very well off be given a small tube of lotion that I paid $25 for without blinking. You could tell by watching and a bit of eavesdropping that she was incredibly thankful. I don’t know, maybe her insurance paid for it, maybe someone else, who knows – but what I do know is that Dana-Farber makes sure you have what you need, whether you can afford it or not.

So what do I want for Christmas? Well, to be honest, my first wish is for it to be last February, turning 38, with long brown hair, 25 pounds lighter, feeling like I’m on top of the world and ignorant of most things cancer. But since I don’t have a magic wand or fairy Godmother, that would be a waste of a wish. And I hate wasting something as special as a wish. This is what I want for Christmas:

I honestly don’t want anything more than this for Christmas. So if you insist on getting me something, please have it be a card saying you made a donation to support something like this – or wherever you want to help those who really need it. And if there isn’t something specific you want to contribute to, fundraising continues for the 2012 Boston Marathon Jimmy Fund Walk until December 31, so even if you already sponsored me, you’re welcome to do so again (I promise this will be the last time I solicit support for the 2012 walk… 😉 ) or visit my brand new Jimmy Fund donation page here. Seriously, supporting the place that has made this horrid year a little bit easier is my only Christmas wish. I can’t help thinking the same thing I thought last year when I was making donations for presents in honor of Mirany (and you can donate in her honor here) – what could we possibly need more than our health?

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Thankful

Posted in Boston, Cancer, chemotherapy, connections, family, hair, Home, Planning, prayer, recovery, tagged , , , , , , , , , , , , , , , , , , , on November 22, 2012| 4 Comments »

There are countless things to be thankful for every single day. And when bad things happen to you, it just gives more opportunity for the good things to shine through. While we should continually be saying ‘thank you,’ Thanksgiving provides us all the perfect platform. So here is just a very small sampling of the many, many things I am thankful for…

  • that I am here to be able to say thank you
  • early detection
  • my crazy, loving, unbelievable family here, in Florida (Tennessee), West Virginia, etc.
  • Nicholas George Tull Atwood – and that there is only one of him! 😉
  • friends – old and new, close and distant, who provide distractions (whether big like Nashville or small like WWF), make you laugh, let you cry, take you to Outback, join you at chemo or just wish they could
  • long walks and talks, planning sessions and Pinkberry
  • people who stick by your side, even when they are going through so much themselves and it’s not easy for them to do so
  • people who tell you what they think, even when they know it’s not what you want to hear
  • cards, e-mails, texts, facebook posts, calls just because
  • hand made cards and crafts by (and hugs from) children who love you and just want to help make you feel better – and do!
  • little boys who have pink birthday cakes
  • Dana-farber, the Jimmy Fund and Brigham and Women’s
  • doctors, nurses, researchers and all healthcare workers who not only treat you but care
  • organizations like the American Cancer Society, Susan G. Komen, Bright Pink, Gloria Gemma and so many others that raise awareness and funds for research, and help people with cancer in countless ways including to feel better about themselves
  • that I live now, when cancer is not an automatic death sentence and treatments have come so far…
  • that side effects will fade, my hair will grow back and with a little effort when I get my energy back, I can lose the weight I’ve gained during treatment
  • Genzyme and the incredibly supportive people who work there
  • running friends who inspire and encourage me
  • music, movies and books you can escape into
  • Boston, the best city for practically everything – at least the best city for me, now – wouldn’t want to be anywhere else
  • Cape Cod, the ocean, the healing power of just being by the water
  • that I was born an optimist
  • that people love me even when I’m the Wicked Witch
  • that every day is a new opportunity to start over
  • all the people who have added me to their prayer lists around the world, and all the people who don’t know me but pray for me, send me positive vibes or simply wish me well

I could go on and on and on – I know I’m leaving so much out! – but we all have friends, family and turkey to get to, so I will leave it at that… Happy Thanksgiving, all, and thank YOU for caring about me and my family and reading this blog. What are you thankful for?

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