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IronMike

Strong As Iron, Twice Forged

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I've been writing this post for about a month now. I keep stopping and starting and on and on. Being a perfectionist can be a major burden and it borders on OCD for me. Often I worry whether people will "get" what I'm talking about. The experience of being the parent of a pediatric oncology patient and survivor isn't easy to impart to someone. It shouldn't have to be necessary to try and that's why I ride and fund raise, so less parents will have to attempt to try. I think that best sums up why I do what I do. So now, I just type what comes to mind and worry much less about whether someone can truly understand my experience and just be glad that they probably won't have to. This is something that in 2002, the year Sam was diagnosed, I had never thought I'd be writing. This is something that now, in his 7th year of survivorship, I'm so glad to be able to write.

Even within this "Extreme Parenting Club", as another oncology parent calls it, our experiences differ greatly. Over the past two years, I have been volunteering at Dana-Farber on the Pediatric Patient and Family Advisory Council to help "patch a hole" where people were falling through. As part of the council, I was able to push an initiative based on our particular experience at Dana-Farber/Childrens Hospital that was the first of it's kind. You can read about it on Page 3 here.

This kind of change is tremendous progress in cancer treatment for the whole oncology population. The kind of progress that's necessary to ensure that other families like ours - other children like Sam - will have a smoother road paved for them.

Some of the change I was able to affect includes: expanding direct notification from pathology to oncology, creation of a new position for a nurse to continue process development, enhanced linkage between outpatient manager and oncology, standardize letter that will make clear the offerings (psychosocial, oncologist, education, etc) for the patient's family and expansion of Children's website to include information for all children diagnosed with cancer. This was not something I did alone and it's absolutely not about me. It's about us all and this was not an attempt to lay blame at any point, but rather to add and enhance processes so more families will have a more robust and smoother experience than ours. This was a partnership between parents and hospital staff, at all levels. Through the efforts of these very same dedicated professionals, my son has been fully engaged at the The Perini Clinic, as a cancer survivor. A clinic started by a family in memory of their son, which now helps mine.

When I joined the council, I was coached that affecting change at an institution as large as Dana-Farber is similar to moving a iceberg with a paddle. This year, we nudged one just a bit - and the ripples in the water will be felt far and wide for many years to come. The thousands, perhaps hundred of thousands, of people who will benefit from this will never know my name, and I couldn't be happier. These are major accomplishments by truly caring people - the staff and the patients and family, working together.

Towards the goal of bringing closure to my efforts, I wanted to share something with you that is very special to us. You may have seen this video on-line, or perhaps before the start of a movie in the theaters, over the past few years. It is about the new (in 1997) Richard A. and Susan F. Smith Research Laboratories at Dana-Farber and how the iron workers spray painted kids names on the girders as the building went up:



Over the past year, a new building has been going up at Dana-Farber, The Yawkey Center for Cancer Care . Once again, Iron Workers Local Union No. 7, out of Boston, has taken the time to brighten the lives of many children, in-patient and out-patient, and many adults as well.



Here's more coverage from ABC where in fact you will see Kayleigh's name being written (the gorgeous little girl in my sig's rotating picture):

ABC News Coverage

Great coverage, all except for the title. Generally, we don't like our children called "cancer kids". The disease does NOT define us.

Recently, Sam and I went together to see the names and took some pictures from the Pan-Massachusetts Challenge Bridge To Progress. Here he is under the check designating the amount we raised in 2008:

yawkeegirders006.jpg

Here's Kayleigh's name again...

kayleigh.jpg

...and here's Jake's (the handsome young man also in my sig, and currently going through clinical trials for Neuroblastoma - part of his 5 years(!) of treatments to date):

jakename.jpg

It had taken us a long time to find the names, there was just so many.

yawkeegirders7Medium.jpg

yawkeegirdersmedium.jpg

While it is frustrating to see so very many names, it is reassuring to look out over this construction knowing that the building going up, will help make cancer go down. Then there will be less names that need to be written.

As we were about to leave, I wanted to show Sam one more name. A name that would not have even been considered for this in 1997. It was very hard to find and we looked a long time, as Sam grew very inpatient (we were late for his cousin's birthday party, he was hungry and frankly, he wasn't that impressed wink.gif. Sometimes I forget he's older now). As we walked outside into the garage attached to the hospital to get a better view, the name came into view suddenly in a corner I had not looked at when we were inside the bridge. It wasn't one of the brightest ones, it was blue - with a hint of Titanium.

It was cool, like him.

Like Sam.

samname.jpg

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Guys, that's quite honestly how I felt when I saw his name. I just stood, staring at it.

 

His name, and in a sense his experiences - our experiences - will be part of that building forever. Or at least until it's torn down. One day, I hope it is torn down - that there is no more need for cancer treatments.

 

It's all good.

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That is so awesome Mike.

I love that all of these people will be part of a building that is being built to help human kind, and they will be a part of it, every moment of it.

Bravo to all you kidsclapping.gifsmile.gif

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May God be with you nd give you the strength to carry on in this mission of hope. Please know that you and your mission will be in the daily prayers of Me and my family. Gods Strenght be with you.

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Mike, that is a very moving tribute. I have seen it before, but reading your words and viewing it again just gave me gooseflesh.

As a cancer survivor myself, I have to say that as difficult it is for an adult to go through, it's absolutely heart wrenching to see these kids facing that ordeal. They are some of the bravest, toughest people you can imagine. I cannot begin, nor would I want to imagine being the parent of one of those fantastic children.

I cannot put into words well enough to convey my true feelings, but I applaud you for everything you do and will continue to support your efforts as long as I can. Without hesitation! I also applaud everyone here on this site that helps Mike out with his quest to beat this terrible disease. No matter how big or small a donation, every little bit helps.

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I'm assuming that was you on Fox News Mike, it's a great thing you're doing. I'm a Union Plumber here in Jersey so stuff like this really hits home. Keep up the GREAT WORK !!!!

Jim

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