Will, Ev, & Catherine's Uncle Michael

Mindful

So much of how people- myself included - categorize and label our child's journey through treatment for cancer is tied up in language better suited for war.

People, including myself, talk about how strong their child is - how powerful their will to fight is - still others rely fully and totally upon their faith. Some parents thank the drugs and doctors for their efforts.

However as time moves on and the years add up in this journey there are certain interpreations that you once had that may begin to change.

I have seen this said for years and at some point it started bothering me because such statements implied, however subtlely, that the kids who died somehow were not strong enough or brave enough.

Somehow their will to fight was not as strong.
Somehow all their prayers went unanswered.
I know kids who are dead who were incredibly strong and brave. Their parents were deeply religous and they went beyond what could be expected to save their chid and yet still they are gone.

Does that mean they did not pray enough?
Was their strength in question?
Did they not have the will to live?
Did they not also fight the good fight and want to live?
Did their parents not do everything imaginable to save their child?

No one child is more worthy of survival than another.

At the end of the day it really comes down to two things for these kids.

1. While the disease shares a name each of these kids faces a foe that can vary greatly in it's strength from one child to another.

2. What currently available treatment options were presented to this child and their family. And more importantly how lucky, or unlucky, were those families with the choice they made.

The outcome for this kids has more to do with how aggessive their disease is, how horrible the clinical options available are, and how 'fortunate' your child might have been in drawing an opponent they at least have a shot of keeping at bay with the impossible choices you have made.

This is a fight.
These kids are strong.
Prayers are needed.
New options must become avaiable.

However, I am going to try and be more mindful of how I categorize this journey going forward. I am aware that the foe & luck has a lot to do with where we are and while Will is strong so are others that are gone.

I will continue to soak up all of the life events that he gets to experience that are taken for granted.
I will continue to do my part as his dad to keep him strong.
And I will continue to be thankful for each and every day we have together.

One more infusion and the study is done

I'm driving Will up for his last infusion of chemo for this phase I clinical trial he is enrolled in. After it is done and we drive home he will have completed, yet again, another clinical trial. We have a week off and then head back up the Vermont the following week for scans.

If scans show stable disease we'll have to continue taking this therapy on a compassionate use basis since the trials we want him to be enrolled in are not open. Will's doctor at Dana Farber has been working very hard to allow this compassionate use of the drug to take place in Boston which would be a fantastic development with Will growing tired of weekly trips as well as with winter fast approaching and the delays that would cause around travel. Will really does not like missing school either so this would not only save an 8 hour round trip but would allow Will to get his chemo and not miss one day a week from school. We are hopeful for stable scans, the ability to cut 430 miles off our weekly trip to the doctor, and for these trials to open.

Take the pledge. Tell a Friend. Make a difference.

Evelyn already got her H1N1 and Dina had to take her back in today for her flu shot. Due to her egg allergy she has to stick around afterward and have her vitals checked to ensure she is not having a reaction. This afternoon I received the following email recap:

"Evelyn got her flu shot and didn't even cry, she is unreal. When the nurse would come in the listen to her heart, she would pull her shirt down so the nurse could get to her chest. The nurse couldn't believe Evelyn was doing that. I laughed to myself, she learned that from watching her 5 year old brother do that once a week in the house by VNA since the day she was born."

I just got off the phone with Amy in Rochester NY and the 2nd location for "Cure Me I'm Irish" is now official!!
Well done Amy! If you are in the Rochester area and would like to help out then please get in touch with me so I can let Amy know you'd like to lend a hand! More hands make for a lighter load.

I have another call tomorrow with Jan and she is going to host the 3rd location for "Cure Me I'm Irish" in Morristown New Jersey! Once all the details, locations, and dates are set for both spots I'll let everyone know but be sure and contact me if you live in either area and want to help either Jan or Amy. Or, contact me if you want to host your own.

Does it sound too daunting? It doesn’t’ have to be.

It can be as simple as having a band play in a bar donate and simply having a cover charge at the door.

It can be a bake sale.

It can be a family friendly event during the day.

It can be a St. Patrick ’s Day dinner at your house where you invite friends and ask them to leave an envelope with a donation instead of bringing a dessert or a bottle of wine.

It can be anything you want it to be - as small or as large as you wish - but I ask that if you are thinking about doing it to simply go ahead and take the plunge.

Growing the number of locations - the size of our event here in Boston - and the amount of money raised overall each year is our goal so the higher we set the bar this year the better.

Feel like helping but bars and music are not your cup of tea?

Are you wondering "But how can I make a difference with a $500 bake sale, yard sale, or event?"

Very easily…..by doing it.

I'm going to ask anyone reading this for your help and if you can't do it then spread the word others who may be able to.

I'm looking for 500 people to make a pledge to try and raise $500 in whatever way you see fit.

A yard sale, a bake sale, a garage sale, or whatever you feel comfortable doing.

What can that accomplish?
-500 people
-500 events

If each one was able to raise $500 there would be $250,000.

What could that do?
I know of one incredibly exciting clinical trial that is in front of the IRB but once approved it still needs to be funded.
It would open as part of a national consortium and would enroll 20 kids in an all oral combination of two drugs one of which is very exciting given it's preclinical results and the fact that it can be taken orally in combination with metronomic dosing of a more standard agent.

That trial could actually be paid for if 500 people take the "500 pledge". This money could open a trial that could give 20 kids a chance at life.

Give twenty families hope.

And that is why I am asking you to help.

Throw a Cure Me I'm Irish Event
Run a bake sale
Have a garage sale
Host a dinner
Run for Mayor



Perhaps you noticed this mug shot on the sidebar and thought that I had been arrested (again). Well, no such story to tell here today. That is the "before" photo on the day I filed my nomination papers for the position of Mayor McStache.

How does it work?

I created a donation page similar to that you may have seen from someone running a marathon, or doing a walkathon. However, I am not running 26 miles or walking anywhere. So exactly what is it I am doing in return for your campaign contributions?

I am growing a mustache to save kids with cancer. And you can too.

When the Cure Me I'm Irish Event rolls around in March whomever has grown a 'stache and raised the most money will be crowned Mayor McStache at our event - or virtually if you are not in attendance. You can grow it out as a beard or goatee but the week of the event you must actually sport the ‘stache and send your picture in to be posted on MayorMcstache.org. (note: You must give you mustache a nickname and as you can see in above photo I have chose "Falcon Crest" after speaking with a team of advisors)

This title holds no power or entitlements except in the mythical place where Mayor McStache hails from where the mustache is still en vogue and where kids don't die of cancer.

So announce your candidacy today, get your campaign started, and fill the war chest and help save kids with cancer by filling out you nomination papers HERE.



Not sure you are ready for a mustache? I don't blame you. However, you can make your pledge without hosting an event or growing a mustache. Are you running in a race, having a birthday party, trying to quit smoking, losing weight? Do you want to stand on your head for 12 hours? Do you want to accept donations in lieu of gifts for a birthday, Christmas, a shower, or a wedding?

Anything you are doing that you want people to donate to your efforts can be done easily.

Just visit www.firstgiving.com/NBAlliance and click GET STARTED.

Sonia did.
So did Jen

So go ahead and join them and help us towards our goal.

Take the 500 pledge. Tell a friend. Make a difference.

Twins

Tara, who has been sitting for Will forever, sent these two photos today. The on the left is Catherine and the oen on the right is Will.