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Posts Tagged ‘The Jimmy Fund’

Those of you who have been following this blog for a while will remember many mentions of Mirany, my dear friends Sarah and Scott’s sweet little girl who was diagnosed with neuroblastoma last winter when she wasn’t even a year old. I will never forget the moment I found out – where I was, what time it was, how I felt – everything froze in horror, fear, disbelief and sadness. Then, after months of treatment, Mirany had surgery and was released from the hospital on the same day I was diagnosed in March. Since then, it has been eight long months of ups and downs for both of us.
Today we received the most wonderful news. Since so many of you ask me how she is doing, here’s the note Sarah, Scott, Mirany, and TommyBoy (their dog) sent:
“Dear Friends and Family,
Today Mirany’s oncologist shared incredible news with us: For the first time in her life, she is cancer free. Both her MIBG scan and urine analysis were 100% negative for neuroblastoma, and her MRI reveals only scar tissue. In addition, the nodule in her lung that caused much anxiety and distress is gone.
It is, in some ways, as difficult to believe this wonderful news as it was to accept the initial diagnosis. It seems impossible that this ordeal could be over. As painful as this journey was, we were always aware of the blessings we received upon the way, and our hearts ached (and will ache) for all those still fighting. The past 335 days have been a lesson in humanity and compassion; we can only hope to “pay it forward” and be as good to others as you all have been to us. Let’s keep looking out for each other.
With love,
Sarah, Scott, Mirany, and TommyBoy”
I have learned so much from all of them this year. About love, strength, perseverance, sacrifice, friendship, faith – so much. Even about cancer, doctors, hospitals and coping. And innocence: Mirany is simply precious and innocent. I am so thankful she will not remember this battle she’s just fought, and will now be able to simply be the normal little girl she deserves to be.
Dreams do come true – thanks to fabulous doctors like those at Dana-Farber and Brigham and Women’s, researchers, The Jimmy Fund and most of all, the prayers, love and positive vibes from all around us… I can’t help but think of how holiday season is approaching and we’re all going to go out and spend oodles of money on things no one really needs and, in some cases, don’t even want. Consider the charities this Christmas: buy your holiday cards, make a donation or even name a gene, all through Dana-Farber‘s web site. How much easier could shopping get – and you could help make many dreams come true…

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Thank you, Tara, for running the Amica Half Marathon in Newport for Dana-Farber! While this was not how I thought this race would go when we signed up for it so many months ago, I was excited to lead your cheering squad and proud of you for running to help conquer cancer! Hopefully next year I’ll be able to run with you…

Don’t worry, all, you don’t need to run a race to make a difference: donate to Tara’s run here. Thank you!

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Yes, today was the Boston Marathon Jimmy Fund Walk. And while for the past several weeks, we’ve been fundraising as much as possible (thank you, thank you, thank you to EVERYONE who donated!!!!), the walk is not just about money. It’s about people. Dana-Farber and The Jimmy Fund know that – that’s why they had patient and doctor quotes all over the place, from start to finish. And they highlighted a patient at every mile marker. Our team, Amy’s Victorious Secret (Heather named it – and had the shirts made), wanted to highlight people, too. We did that by decorating (thanks to Heather’s mom, Diane, and her love of craft materials) the backs of those very pink shirts with names.

So many names came to mind. Diane, Heather, Amanda, Jennene and I sat around Diane’s dining room table (after eating a fabulous feast for which we also had Diane to thank) trying the fabric markers, arranging stickers and trying not to smudge the fabric paint as we shared the names we were adding to our shirts. And for some, the people and stories behind the letters on the shirts.

For me, it started with donations: some friends who donated were honoring loved ones by donating, and I wanted to recognize that, and honor them, too. Then there are those who, like me, are fighting right now (or recently) and I wanted them to know they are in my heart, mind and prayers, and that I am rooting for them. There are also names of people who fought their fights and won – and have shared their words of wisdom and been sources of inspiration for me. This was one more way I could say thank you. Finally, some of the names are family members or friends who have passed away and I wanted to remember them.

This was also about the people around me today: new friends like Amanda and Jennene; old friends like Kevin, Jeremy and Diane; and especially about Heather, who has been one of my dearest friends since we were in the fifth grade and wanted to be Solid Gold Dancers. Let me tell you about Heather…

Heather has been a source of inspiration for me since we were 10-years-old and she refused to listen to other kids on the playground when they told her I wasn’t cool and she shouldn’t play with me. She has always been true to herself, never caring what anyone else thinks. And because she has such an incredibly lovable and optimistic personality, everyone wants to be her friend. Heather has faced more physical trials than most people I know. We joked last night that not only shouldn’t we keep everyone up with our talking and giggling all night (we slept over Heather’s parents’ house, just like the old days), but we also shouldn’t have any late-night hospital visits! I’m afraid Heather used to have such bad asthma attacks, it wasn’t unusual for us to have to make a road trip in the middle of the night to make sure she was ok. During the day at school, we had to watch everything she ate – because as much as she loved food (and somehow never put on an ounce of weight), she was allergic to practically everything!

Then Heather was diagnosed with severe scoliosis. Not only did she have to wear a large plastic brace through much of high school, she also had to have multiple surgeries to have rods placed in her back (and fixed when they broke). I’ll never forget our conversations (often with our other best friend Nicole) about the future, and questioning if Heather would ever be able to have children or be able to dance again…

Well, not only did she have children, she married her high school sweetheart Jeremy (who I got her together with at a dance – he’s the tall one in the pictures), had four incredible children (including twin boys who are just starting college – and her two youngest are in the decorating photos above) and we spent our last birthdays dancing the nights away. No, she did not become a Solid Gold dancer: she became one of the best nurses in the industry. In fact, she is even teaching her first college course this year, sharing her knowledge with others.

Just about two years ago, we had a huge scare: Heather was in a bad car accident and broke her back. Amazingly, you would never know it today. In fact, last year she walked the full 26.2 mile Jimmy Fund Boston Marathon Walk with Amanda. And this year, right after I was diagnosed, Heather asked if she could start a team for this year’s walk in my honor. How could I, why would I, say no? (Of course the picture she posted on the team site was another thing… 😉 )

Heather’s unstoppable energy, resilience and determination have been an inspiration to me the majority of my life. And no matter how much time goes by that we don’t talk, how busy our lives get, I know that she is always there for me – always has my back – and that when we get together, it won’t seem like a moment has passed.

Thank you for today, Heath, and for always being one of my angels on earth – love you!

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