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Archive for the ‘family’ Category

Dreams Do Come True

Posted in Boston, Cancer, chemotherapy, connections, Dreams, family, Fundraising, prayer, recovery, tagged , , , , , , , , , , , on November 16, 2012| 4 Comments »

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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The Never-ending Saga

Posted in Cancer, chemotherapy, Decisions, Discovery, family, lymphedema, Planning, radiation, recovery, tagged , , , , , , , , , , , , , , on November 14, 2012| 4 Comments »

I can be very stubborn. (I can hear the laughs and see the nods of agreement!) But I will listen, particularly when someone is using terms like “survival rate,” and it’s hard to argue with statistics.

Mom and I both went into this morning’s meeting with the radiation oncologists at Dana-Farber inclined to “just say no.” I was fairly sure I knew what the rates they’d quote would be, based on our initial discussion many months ago. What I didn’t realize was how much things changed when my specific details were factored in post-surgery. Everything from (you guessed it) my “young” age and the size of my tumor to the fact that it had spread to my lymph nodes and there was lymphovascular invasion (LVI) influence the recommended treatment.

So what convinced me? The numbers. The fact that right now my chance of recurrence is approximately 15% and by doing the radiation it brings down the chance of recurrence to 5-7% . That’s a lot more than the 3% improvement I was expecting. I can say no to a 3% improvement – but 7-10%? Even as much as I want this all to just be done, I can’t ignore that.

Tuesday is my last chemo session. But it’s not the end I wanted. It’s like the end of the last chemo session – it’s just the conclusion of another chapter in this never-ending saga. In the next week I will have to go to Dr. H and have him partially deflate my left tissue expander so it won’t get in the way of the radiation. Then the Thursday after Thanksgiving I’ll go in for the radiation planning session where they’ll tattoo marks on me to make sure they radiate the right area each day.

Yes, each day. Monday through Friday for five weeks – 25 sessions. Luckily they will only be a few minutes each time, so I will be able to continue to work through it. The biggest side effects are continued fatigue, redness and soreness. And, since my lymph nodes were removed, the increased risk that the radiation could trigger lymphedema. (I will be praying about that one – really don’t want that!)

And the biggest bummer of it all for me? Postponing the surgery I was supposed to have on January 2. I thought I’d start 2013 with surgery and pretty much be done, but now I’ll be doing radiation and have to wait six more months to switch out the tissue expanders for implants. Then a few months after that will be the nipple surgery and then a few months after that will be the tattooing. Oh – and then the five years of tamoxifen. It really is the never-ending saga…

But it’s worth it. To do everything I can to be cancer free. To fight every step of the way. To not have to look back and wonder, “if only I…” because I have, in fact, done everything within my power to get rid of it and prevent it from coming back. So I can continue to wake up each morning, breathe in and breathe out, and thank God for another day.

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Beat Up

Posted in Cancer, chemotherapy, Decisions, family, Planning, radiation, tagged , , , , , , , , , on November 13, 2012| 8 Comments »

As mom, Tina and I walked out of Dana-Farber today, we were all unusually quiet. “I feel … beat up,” I finally said. We all looked up at each other and got small, weary smiles on our faces; looking at them, I could see they felt just as drained as I did.

I know this hasn’t been easy on any of my family and friends. It’s been a nightmare for us all. And just the thought of it being extended is wearing on us all…

Today was week 11 of Taxol, week 23 of chemo. Next week will be my last chemo session. I should be excited. But I’m not. I can’t be. Not yet. Not until after tomorrow’s discussion with the radiation oncologist. Because we may not be done yet.

Mom and Tina debated this with me at chemo today. “We have to celebrate,” mom said. No, it may not be the end. “But even if you have radiation, you’ll be done with chemo and we should celebrate that,” tried Tina. Tara and Kristen brought up the same thing this weekend. “We need to have a post-chemo party!” But no. If I have radiation Monday through Friday for six weeks, in my mind, there is nothing to celebrate. At least not until that is over.

So we’ll see what tomorrow brings.

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