Posts Tagged ‘neuroblastoma’

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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Nick and I had our five minutes of fame today on the 11thAnnual WEEI / NESN Jimmy Fund Radio-Telethon. I have to admit, listening to the telethon while driving to work, I was really second guessing why in the world they would want ME on their show – every patient’s story that I heard was so much more tragic, inspiring, complicated, heart-tugging – just so much more compelling than mine! But I’d already committed, and who was I to judge?

I was glad Nick came with me, especially when they asked if he wanted to join us in the studio. We got the usual “he’s too old to be your son!” comments, and then launched right in. It occurred to me as we spoke that my story is not MY story. It is so many stories intertwined. It’s Kristen, and Greg and the whole Montalbano family’s story. It’s Mirany, Sarah and Scott’s story. It’s my family and friends’ story. It’s Nick’s story. Cancer does not happen to one person. It happens to everyone whose lives they touch. And I am so blessed to have an incredible circle to share with – both the good and the bad. And I’ve been fortunate to have people like Kristen and Sarah share their cancer experiences with me to help make mine a little easier. And that’s what I hope to continue to do for others…

If you didn’t get a chance to tune in today, here’s the link – the Nick parts are, of course, my favorite! http://audio.weei.com/a/61626264/m-m-amy-atwood-and-son-nick.htm I was truly relieved to learn money WAS raised while we were on air (my real nightmare was that the phones would stop ringing during our segment…). And it’s not too late – the telethon continues through tomorrow, simply text KCANCER to 20222 to make a $10 donation or call 1-877-738-1234 or click here to donate the amount of your choice!

As a thank you, we were given two tickets to tonight’s Red Sox game. Since Nick had his first night at his new job, Kristen joined me.  It was a beautiful night to be at Fenway, although not the best night for the Sox…

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Running isn’t just good for me (and you) physically, it helps mentally, too. Phil always told me that when he has something big to think about, he goes for a run. And he’s right. Even with my music blaring in one ear (I never put both ear pods in – learned that in self-defence class – always stay aware of your surroundings), I can think more clearly and better concentrate on a run. This first run I thought about a million things, but the one that really stands out is my upcoming meeting Thursday morning at Dana-Farber.

I received a letter the other day from the Development office at Dana-Farber, wanting to thank me for my significant donation in December and to find out why I made it – what my story is. And boy, will they get a different story than they probably expect – it’s certainly evolved since I wrote that check! So as I ran, I began to think about what I will tell them.

And halfway across the Harvard Bridge (amongst the ‘Smoots’), I began to cry. I cried as I ran (thank goodness, once again, for sunglasses) and thought about telling them how devastated I’d been in mid-December when my dear school friend Sarah found out that her 10-month-old daughter has cancer – a neuroblastoma in her lower pelvic area and a nodule in her lung. It was so unfair!!!  I thought about the other people close to me who’ve been hit so hard by cancer, like my friend Kristen who lost her brother Greg after his long, brave fight with the disease. And it being close to Christmas, I thought how no one really needs anything more than health and decided to make that donation to Dana-Farber in honor of Mirany and everyone impacted by cancer. I printed out the donation cards from the website and give those to people instead of other gifts for Christmas. And then March came… I cried some more, just thinking about how I’ve gotten to know Dana-Farber more than I ever wanted to.

I am happy to share my story with them (heck, I can just give them this blog address!), my heart just breaks for Sarah, Scott and Mirany’s lives, my life, my family and friends going through this with me, all of us, and wish in this one way we were all where we were last November: blissfully ignorant of this damn thing called cancer.

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