28 days into my campaign...

I am surprised at how long the hair has become above my lip and below my nose since I stopped shaving 28 days ago. I am somewhat alamred when considering how I have all of December, January, and February to go before going public with my stache.

All I can think of is Wilford Brimley (The High Road to China, The Natural, Coccoon) and Yosemite Sam (Tiny Toon Adventures, Looney Tunes, Who Framed Roger Rabbit) when I try to envision what I'll look like on March 6th when I receive my purely ceremonial title of "Mayor McStache" along with a very real Trophy commemorating my achievement.

As it stands today I am one of ONLY 4 candidates (three men; 1 woman) and I am distancing myself from the crowd.

Note: Shame on all of you too scared to join the race...it is just a mustache. I was hoping for a 20 person primary but I guess I underestimated the inherent fear you all must have for hairy upper lips. Still, it is never too late to join the race.

Thank you to all my supporters (including Will's teacher!!) for your commitment to my campaign.

To the rest of you?

I say:

1. Support my campaign today
2. Or get in the race (Just click get started)

If you fear a backlash in the workplace, at church, at your favorite watering hole you can always just say:
"I'm growing this mustache to save kids with cancer. What are you doing?"

If we get 20 peopole on board I'll even make up a t-shirt with those words on it and mail one to each of you so that you can wear it everyday and hopefully avoid having rotten fruit thrown at you.

Vote for Grants

There is a foundation called "Lillie's Friends" that is giving out a grant (unsure how much) to one of three candidates. They are going to give the grant to whichever of the three projects receives the most votes between now and Jan 31st.

This is a very interesting concept.

I went on to look and saw that project "A" is in fact a clinical trial that I am hoping is opened so that I can enroll Will on it. Every dollar helps so I voted.

Check it out HERE and be sure and vote for Dr. Sholler and help get this amazing work funded. Of course you can always run your own event to help raise money as well.

This trial that Dr. Sholler is trying to open is just one of the things she needs funding for to help these kids and is why we are hosting Cure Me I'm Irish in March.

Rested

Nana Ginny drove up from RI on Saturday and picked up Will. He has a great time when he goes down there and he really enjoys himself. He calls up when he gets there and says "Guess how many days I'm going to stay down here?? TWENTY!" As much as he hates to admit it he does love his sisters but having some alone time is something he really enjoys too.

We dropped the girls - and all the stuff required for a sleepover for a 2 year old and 6 month old - at my parents on Saturday at around 2pm. When we got home I went out in the backyard and sat in our hammock.

It was a gift we received as a wedding present and each spring I set up the stand and hammock and when winter rolls around I put it away. In the past 5 years I have probably used it five times but for some reason I still put it up each year. Regardless of how cold and windy it was Saturday I was determined to sit out there, read the paper, listen to some music and stare at the sky.

After an hour or so I used my iPod to email Dina and ask for a cup of tea. While that helped I eventually turned the grill on to warm up and at 5:30 went back in side where Dina and I decided that take out would be best. I never watch movies but proceeded to watch two movies back to back before going to bed at around midnight. We got out of bed at 10 - TEN!! - and I felt like I had been beaten with a baseball bat. I crawled/limped/lurched downstairs as my body had locked up from being in bed for so long it did not know what to do.

Dina and I took the dog for a walk together at Pond Meadow (the poor dog was so confused) before eventually eating lunch and picking up the girls at 2. Dina went down to RI to get Will at hers sisters and Evelyn went for the ride. Catherine and I did some quick shopping while they were gone and picked up three new street hockey sticks, two new nets, and even attempted to pick up some wreaths before deciding against it.

Will was VERY excited about the new nets and Ev loved her new stick. We have a big game lined up this evening in the driveway after I get home from work!

It was a much needed night of rest for Dina and I a great chance for us to recharge and relax.

A big bag of nothin'

Hope everyone had a great holiday! The kids had a fun day and a great time and are so tired today after running non stop and staying out well past their bedtime.

Earlier this week the Irish Emigrant paper did a story on Will and our upcoming event in March. I had reached out to them about advertising and they not only offered to do a story closer to the event but offered to do one now to help raise awareness about NB.

You can read it HERE.


My parents offered to watch the kids one night this weekend so Dina and I could get away for one night and decompress/get some rest. After some serious consideration I realized there is nothing I'd rather do than simply sleep in my own bed. So tomorrow night Will is having a slumber party in RI, the girls are doing one at my parents, and Dina and I are going to do a whole lot of nothin'. I could not be happier about this turn of events as the thought of not being awoken 5 times at night makes me smile. One good night of sleep can make up for a lot.

"I really don't want it to come back" - Will

Today I brought my Flip camera and tried to capture our trip on camera. I have about an hour of video and eventually I'll compile it. But I wanted to share the video above because it has some tumor talk. We talk about cancer, chemo, medicine, and tumors a lot now. I tell Will his tumor is never going away and that we'll always do medicine to keep it at bay and that Doctor Giselle does scans to see if it is growing or if we need to try a new med.

This is good for him to discuss and get out some of his anger and frustration and also create gems like this one.

Video Description:

"So there is nothing going on in this video for the first minute. This is the last few hundred yards of I-89 in Vermont before crossing the Connecticut river as the other side of the bridge is NH. I had the camera on the dash as Will was saying some funny stuff and out of the blue...at about 1:09...he starts talking about his 'post tumor' plans."

Vermont

I woke Will and tossed him in the car at 4:30 this morning and we headed up to Vermont. The early hour was tough but getting his chemo near Canada and yet being home by 3:30 (in spite of the Turkey day exodus) is a quite a nice change of pace.

Will is on the couch right now watching a movie. I really dislike the ride up to VT but it is surprisingly hard to say goodbye (for now) to our friends in clinic. It is a really magical place where everything is how you'd dream it would be for kids undergoing chemo and while I won't miss 8 hours in the car to get there there is part of me that kind of thinks we shoudl keep doing it...it is that wonderful an experience (yes...I am talking about my son getting chemo).

We love each and everyone of you guys up there who treat William like he was your own.

TPI-287 to be infused in Boston

Will is currently being infused with an investigational drug called TPI-287. This drug is deemed investigational because it has to go through the process of clinical trials to prove safety and efficacy before it can be approved by the FDA for use in patients outside of a clinical trial.

This was a phase I study that allowed Will to receive TPI-287 alone for two cycles followed by adding in Temodar for cycles 2-6. Now that he is done?

He is no longer on study but since there are no other clinical options for him to enroll in today that are better than what he is currently taking we will continue to take the drugs 'off study'. Last week we started cycle 7 overall - his first off study - in Vermont. Tomorrow morning we will leave the house at 4:30am for another trip up to receive his chemo and next week his third, and final, infusion of this cycle will take place.

However, after speaking with Will's doctor at Dana Farber it would appear that Will's next infusion may, in fact, cut 424 miles off of our drive to the doctors office as Dana Farber's IRB has approved a single patient protocol application for a Phase 1 Trial of TPI-287 as a Single Agent and in Combination with Temozolomide for Patients with Refractory or Recurrent Neuroblastoma or Medulloblastoma.

What does this mean? Once the i's are dotted and t's crossed Will is going to be able to receive this chemotherapy in Boston for as long as he continues on this therapy!

If all goes well next week he may start in Boston but otherwise it would probably be the start of cycle 8. It is now a matter of 'when' and no longer a matter of 'if'.

Will scans again after cycle 8 but we are hopeful to be able to continue this therapy in Boston until new clinical options become available - most likely again in Vermont - but for now we'll gladly take a break from the weekly 450 mile doctor visits.

Soccer style

Will made it into school again today, although I did have to drive him, and he did not get sick last night. He is still taking Temodar but luckily it just seems that the first night has been the only really problem the past few cycles. We started his chemo on a Wednesday this week in light of the upcoming holiday so we head back to Vermont at 4:30 on Wednesday morning but I'm sure we'll get caught up in the holiday rush coming home.

Last weekend when we took the kids bowling I forgot to mention Evelyn's performance. She lost intereste about halfway through because she spotted arcade games to climb on but while she was bowlign she was employing an interesting technique.

The between the legs diaper roll? Nope
The throw it in the air shotput roll? Nope
The drop it on my foot three stooges roll? Nope

Evely would calmly walk up to the line and then, quick like a rabbit, she'd bend down and place the ball and before I could stop here she'd snap right back up while simulataneously kicking the ball! I couldn't stop laughing. She also copied Will's Slush Puppy request by getting requesting her own "Green Puppy". She had a great time. Catherine has Will's cold and went in today and is now on antibiotics due to what appears to be some redness in her ear. Otherwise things are good at the house.



The website for Cure Me I'm Irish is now running and will continue to be updated with locations as the details unfold.

Right now the LOCATIONS that are planning events are:

Morristown NJ
Quincy MA
Rochester NY
Buffalo NY


If you are in any of those areas and want to help out or attend just keep checking the Events page and I'll update those with the details once they are finalized.

There are a few other events in the works as well and as they unfold we'll update the website - feel free to add your own effots to the mix. These are people organizing events on their own and sending along whatever proceeds to the Cure Me I'm Irish grand total for 2010.

Come March 18th we'll start the planning for 2011 with the goal of more locations, more money, and more fun had by all.

Updates

1. Will's teacher emailed to say, although tired at first, he was his old self in no time and had a fun day. He was excited to participate in gym class and tomorrow he is bringing in a X-ray to show and tell for this weeks Letter of the Week "X".
2. There is a new candidate for MAYOR and SHE is ready to win! I'm quite intimidated by her photo and feel that my campaign is in big trouble.
3. Jen Devlin has been raising money as she prepares to run a 1/2 marathon this weekend in Philadelphia. She has raised $764 as of today towards her goal of $1,000 if anyone would like to help her reach her goal you can do so HERE.

Determined

We once again ended our journey to Vermont with a stop at Bugaboo Creek for a hot dog last night. Will was not feeling great and asked to leave about halfway through his dinner so we were able to get home and catch Evelyn before she went to bed which was great. Will was put under yesterday for his scans using propofol and he still does not wake up great from it. He does not like the feeling of not being in control when he awakes and as soon as he came around he started asking (begging?) not to have to go get his medicine up in clinic.

Why?

Because that is where he gets an IV dose of Benadryl that once again makes him 'wobbly' and knocks him out cold. He can wake up from this quite funny as well and after a day of IV bags and being knocked unconscious you start to get a bit irritated and your bladder gets a work out as well. So after waking up a second time we drove the 4 hours home and he wound up staying up until about 12:30 this morning. I figured he'd be too tired to go to school today and went to sleep myself. Sadly he awoke and hour later and spend the rest of the night throwing up into his trusty bucket.

He finally stopped getting sick sometime around 5:30 this morning and he shuffled downstairs at 8:30 and threw himself in a heap onto the couch. He looked at me and asked when I was taking him to the bus! I explained that it had already left and that I was heading into work but he asked if he could go to school.

He wondered if he should wear a mask so that he did not make the other kids sick. I explained this this wasn't something people could catch since it was his chemo that was making him throw up. He assured me that he wanted to go, he asked for only 1 zofran, not three, and then got dressed and skipped into school where he was only about 35 minutes late. He told me that if he had to get sick that he would walk down the hall to 'the boys room', get sick in the toilet, wash his hands, and go back to class. He was determined so he got his wish and Dina is now awaiting his arrival at the bus stop.

As I mentioned Will's scans came back as unchanged yesterday and he wanted to look at them. It was pretty funny as he took the mouse and started maneuvering around the different images, scrolling up and down through the slice of the combined CT/Spect image, and made some observations about his brain, eyeballs, and teeth. He described his tumor as Oval shaped in one photo and as a circle in another - and he was right - which cracked me up because he is working on shapes in class at school, along with patterns, as part of the match curriculum. (can you tell that I love the fact that he goes to school as much as he loves going??)

Six hours and four minutes

Six hours and four minutes, originally uploaded by Will's_Dad.

That is how long we were in the garage and in that time Will was sedated, had a CT and MIBG scan, went to recovery, went to the gift shop, reviewed his scans (stable), and started + finished Chemo. We are now on the road home.

This place is amazing

I think my iPod is rebuking me

I'm sitting here, yet again, in the Sheraton typing on my laptop and preparing for another day of scans. If neuroblastoma doesn't kill him then secondary cancer from all the chest & head CT's certainly will.

It was June 5th, just over 5 months ago when Will started this trial and here we sit about to finish the study. There have been over 4,000 miles logged on the cars for trips up here and back for this study and scans. Will has put on about 6 or 7 pounds, grew about an inch an a half, had very solid labs, needed no transfusions on inpatient stays and generally had life about as good as it gets for a kid on relapsed therapy.

He is doing very well. He loves school, and he misses it terribly. As I have mentioned he's missed about 1/3 of his school days and people say 'its just kindergarten'.

The truth is I'm having a harder time with this than I thought.

It is 'just kindergarten' but this ride shows no signs of stopping. I don't imagine that one day his tumor will be gone and that we can parachute out of this reality into some world where our biggest worry is what teacher he gets next year.

That is never going to happen.

However, the fact is that this past 5 month stretch is about as good as it can possibly get for Will. And I know that the only way things are going to change is if they get worse.

And that scares the ever living shit out of me.

Today before we left I went down to his school to pick up his school work for the week. As I was entering the building there was another dad from Will's class walking into the building as well. I was unaware of what was going on but he asked if I was there for the book fair and I said no I had to pick up a packet for Will then we were hitting the road for Vermont. As I got the packet and walked out to my car I found myself feeling quite despondent.

I've stretched myself much too far - much too thin - these past five months and I'm no longer finding that resevoir to go to in order to scrape for a bit of energy and optimism. When I think of this all I can visualize is that very last scrape you take inside of a pumpkin when you are emptying out the guts for your jack o' lantern. You know...that last scrape that comes up clean telling you that it is all empty inside and you can start carving away.

I need to replenish my reserves somehow so that I can fully absord and enjoy this amazing quality of life Will is having right now. So I can fully engage him with his school work and be entertained by watching him learn. He is just such a great kid and when I'm here all alone with him - no work, no meetings, no phone calls, just 'the boys' hanging out I am reminded again and again how special he is. How special this time is. And I need to sort out a way to give him my best.

I have my iPod on shuffle for the ride up and without fail the song "Best of You" by the Foo Fighters comes on
(note to self: delete that song).
When it does I feel like I'm being called out and asked "is someone getting YOUR best Patrick??"
(note to self: thank the Catholic church for mounds of insiduous guilt)

And then I think about it an wonder who is getting my best?
My wife. No
My job. No
My kids. No
Anyone??

And the answer is always no. So WHEN I find a way to recharge I'll make it a goal each day that someone, or something, gets my best.
That each day my commitment of energy will not be a mile wide and an inch deep.
That each day someone, or something, will get my best.

Now if someone could just tell me where the pause button is so I can go away for two weeks and come back and find everything, and everyone, right where it is that would be just swell.

A simple question

Nearly every time we go to Vermont I have a meeting, of some sort, scheduled around fundraising or organizationally around fundraising or support of the program in Vermont.

This means that every time we go up Will asks "Do you have a meeting today daddy?"

One day Will asked me "why do you have so many meetings?"

I went on to explain to Will that these meetings "are to plan parties where people have fun and we try to raise money. We then give this to Dr. Giselle and her friends."

His response:

"So she can keep giving kids medicine so their tumors will go away?"

That is certainly the plan.

So that is how all of this stuff now gets communicated between us when I have meetings or get home late from work. At times it makes it easier and at times is is harder when he asks me:

"When is my tumor going to go away so I can stop taking this stupid medicine?'

At the end of June in Braintree there was a 4th of July celebration at the town high school. Friends of Will volunteers had a tent and the above pictured donation jar was present. We donated the cash collected from that day and then we put it on the counter in our house. Dina thought I should stick all my pocket change in there so we can donate it from time to time.

Yesterday Will had some coins in his pocket and a dollar bill that was change from a Slush Puppy purchase earlier in the day. When he later found the money in his pocket he was all excited! He was carrying it around talking about how he wanted to spend it. He walked into the kitchen and amidst all of his constant mad man movements, hopping, skipping, and shouting he suddenly paused when he spotted the jar.

He turned to me and asked "Can I put this money in the jar for Dr. Giselle?"

Of course you can I replied.

He went over and as he dropped in the coins he turned to me, with a look on his face seeking permission, and he asked:

"Is it OK to put the paper money in there too?"

My heart cleanly snapped right in half as he said this.

If you look closely at this picture - just to the right of center atop the coins - you can see the dollar bill Will put in there.

Never again in my lifetime will I be same person I was two seconds before Will asked me that question.

Leaning hard on that invisible line

We pushed the limit last night, or should I say straddled the border, on what technically should have/could have been a visit to the Emergency Department. Will's temp got up over 100 and he is obviously sick with something more than just a cold. We did get him to drink fluids (by threatening a hospital visit to hydrate him) and he is doing a bit better today with his temp down under the 100 barrier.

He is home again from school today and with scans next week he'll most likely be out until Thursday. Between a few colds and all the weekly chemo trips as of next Thursday Will has missed 1/3 of his school days. This is upsetting to him since he enjoys it so much. We started Will on therapy in July of 2008 that involved weekly clinic visits for chemo (with one visit a month being for just a check up) and that hasn't really stopped for almost 1.5 years now and he is getting tired of it.

We scan next week and will continue this therapy on compassionate use - for the foreseeable future - if he remains stable. We are going to have a consult with the radiation oncologist here in Boston after the scans as well but otherwise we are waiting on other trials to hopefully open. It would be nice for Will to try an oral regimen for a while to hopefully give him a break from clinic and let his case of "Hospitalitis" fade away before the anxiety ratchets up another level or two. However, we'll do whatever is best (ie currently available) for his health and try to work with any anger issues that develop.

I'm hopeful he is past the worst of this and is able to rest over the weekend and that we can somehow (HA!) keep everyone else germ free.

THINGS I COULD US HELP WITH:
Email me pat @ nballiance or call 781-519-9787 if you can help.
1. PR. I don't know what a press kit is, I don't know if I need one, but I'd love for someone with experience - and time on their hands - to take on this role for "Cure Me I'm Irish" in order to get as much local media exposure as possible.
2. Corporate solicitation. What do we need? Corporate sponsors! When do we need them? Now. Does you company give out grants, corporate sponsorships, or event sponsorships? Then drop me a line and see if we can get one for this year.
3. Web Development. I have a website. It is about to go live. I'd like you to clean it/fix it/polish it.

Yet another cold...good grief

Will started having a runny nose yesterday, a cough, a frog in his throat, and feeling run down. We kept him home from school today and he had an appointment at the Jimmy Fund for a check up. It appears he just has a cold but is clocking in at 99.2 - 99.8 so we'll hold off on the Tylenol and continue to watch him. We are expecting that croupy cough to keep him up tonight as you cancer parents know all too well these fevers usually crop up after 10pm and before 2am - just when everyone loves to go to the ER for a visit.

Hopefully he'll avoid an fevers and any unwanted trips to the ER that is just covered in all sorts of infectious goo at this time of year. Would it be weird if we showed up wearing trash bags over our clothes?

As you may have noticed up above the tickets are now on Sale for Cure Me I'm Irish here in Boston. Too soon? Oddly enough even though we haven't had turkey yet it is only 114 days away.

In addition to our event there will also be one in both Buffalo and Rochester New York as well as Morristown New Jersey. Others have expressed possible interest in Manhattan and Columbus Ohio but I'll keep you updated as things progress.

The website for Cure Me I'm Irish will be up and running this time next week and will have up to date event locations and details. Be sure and contact me if you want to host an event where you live (bake sale, yard sale, family friendly event, a dinner at your home, or basically any excuse to raise money for Cure Me I'm Irish this March). We'd love to get as many locations in the inaugural year as possible so we have a target to beat next year both in locations and money raised.

Hurricane Will

This one is in the running for our holiday card as they are all actually in the frame! Will did not have school today so he did a sleepover last night at Nana and Grandpa's house down in Rhode Island. He loves going down there and it has been hard to get a night in with soccer/weekends/school so I'm glad he went.

In the past it was kind of disconcerting when Will was not around because it made you think of what the house might be like in some horrible future where Will was taken from us. However, last night it was very different as Evelyn was doing her thing and Catherine was sitting up and doing her thing and it left Dina and I with one stunning realization and undeniable truth:

Will is the loudest human being on planet Earth.

His footsteps are like pile drivers pushing iron stakes into concrete. He does not walk around the house as much as he drives his mallet like feet into the ground as if they were pistons. He does not talk..he shouts and screams as if this is his conversational tone. He throws himself around when he is playing like a lineman straining for the goal line with the running back behind him, the clock expiring, and two yards to to between failure and a Superbowl triumph. His presence is not 'felt' when he is in the house it is 'experienced' like a car crash or a fireworks display. He transforms Evelyn into a 3 foot tall female version of himself as she is swept up in the hurricane that is Will's life force and bounds about the home smashing, and stomping and snarling as well - she is a completely different person when she is playing and he is not around.

And I love every single eardrum pounding second of it!

I'm glad he had fun but I am happy that he is home today where his very special and magical form of disruption is back in our home and right where it belongs.

Thank you

When I was in 8th grade I discovered, after dislocating my knee cap, that I have bad knees. After numerous dislocations, casts, crutches, therapy, and surgeries I have long ago said goodbye to things like skiing, competitive basketball, or really anything that involves quick stops and cutting.

At the time I played basketball, hockey, football, etc.. and enjoyed all of them. After finally getting surgery in 10th grade I realized it was time to find something new and in my junior year I discovered indoor (and later outdoor) track. As you can probably guess if you've met me I was not a sprinter, or a high jumper, or a hurdler, or a miler. I threw a shot put in winter and when spring would roll around I added a discus to the list of items I'd throw on a daily basis.. I found it to be a fun sport with a unique individual/team aspect unlike any other sport I had ever competed in since they were all team meets except at the state meet level.

Our indoor track meets where held on Tuesday nights at the Boston University Armory. It was a disgusting old building that was difficult to get to but it is not like there was a wide array of places to host high school indoor track meets. They were at night (7pm??) so we'd go home after school and then head back later to take the bus into the meets.

Each team would have a seating area on some bleachers and you'd wait to get ready to compete. The shot put for indoor track involved three attempts and it was in the infield of the 1/4 mile track near turns 3 and 4 and, as you can imagine, not much of a spectator sport. All said and done from the time I'd enter the circle and make my throws my entire participation in the meet would be about 90 seconds. I wasn't even the best on my team as we had a guy who routinely threw it at, or over, 50 feet.

Why Pat - dear GOD WHY - are you talking about this???

In spite of the difficult to reach location on Commonwealth Ave, the lack of spectator seating, the absence of parking, and the fact that you had to battle traffic to get into the city there was not one time - NOT ONE - where my parents did not make it to any activity I ever participated in including two years worth of track meets in a filthy old armory on Comm Ave in Boston.

My parents always made the effort and always came out to support me no matter what activity, no matter where it took place, and no matter how meaningless or infinitesimal my participation was.

Even when they did not have to drive me. Even when a bus took us, or I could drive myself. Even when it was something as ridiculous as an outdoor track relay meet in the middle of God only knows where.

They always made the effort.
They always supported me.
And never once commented on it, complained about it, or even acknowledged it.

Because that is simply what they do in every single aspect of being a parent.

I am incredibly blessed with the most amazing parents in the world who would do anything, anytime, anywhere for their kids and calmly go about it without any fuss, without creating a website to bitch about their misery, and without ever lifting their head from the grindstone that parenting can sometimes become to either complain, ask for help, or to seek out recognition.

I thought of this on Saturday as they were leaving Will's last soccer game of the season when I realized that, yet again, they were there every time to support us & Will. Just as they always have.

There have been extraordinarily difficult times since Will was diagnosed and my parents have always been there to help and support is in any way imaginable. They are just around the corner for us and in spite of all the reasons for us to move to Vermont for Will's care the biggest reason NOT to leave is because they have always been right there, just around the corner, to help us whenever (quite often) we need it.

If I do my job right as a dad then I hope, some day, to make my kids 1/100 as proud of me as I am of my parents. Thank you for always being there - when we ask and even when we don't.

My campaign War Chest is at $870

So a week ago I announced my candidacy for Mayor McStache and today I have posted the "One Week" into the campaing photo on my page.

Since last Monday I have gotten a haircut, managed to learn just how slowly hair grows on my face, and apparently managed to get a sunburn yesterday while wearing glasses.

In addition to the picture what you may find more remarkable is the in the first week of my campaign for Mayor McStache I managed to rasie $870!!!!

Currently this is a three man race and we have 18 weeks until someone is officially crowned. For those who asked (and were scared) you do NOT have to wear a 'stache in the interim if you live someplace where that could be dangerous.

As long as you have it for the first WEEK of March you are in good shape..feel free to grow it under the guise of a mustache or beard until then.

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.

Proud of his new haircut

I took Will to get a haircut last night after I got home from work. He wanted to have one like Twist from the Fresh Beats. In case you were wondering yest that is an Optimus Prime Halloween costume he is wearing and yes he did wear it to the barber shop. He is so proud of his haircut it is pretty damned funny, it also gives me pause in light of yesterdays post as I now wonder if his opinion about losing his hair will change now that he thinks it is 'cool'.

This morning Will asked me what my favorite planet is and I told him Saturn. He explained that his favorite was Mars and that he wishes we could live there. I told him that no person could live there and when he said why I said because it was too hot (I didn't feel like explaining that it was freeze to death cold and that the atmosphere is carbon dioxide and would kill us). When he heard it was too hot he said "Lets move there so then I can wear shorts everyday! So we ended up having the conversation anyway! I guess I was too lazy to tackle it without my pot of coffee so we discussed it on the way to the bus stop.

Found this video today going through some of my files from when Will had just turned 2 and it is even more jarring in light of just how different Evelyn is right now at the same age as Will in the video.




Finally, I had forgotten to mention that on Saturday the soccer game had a full complement of team members. This meant that, unlike prior weeks, the playing time was a bit more limited. At one point I looked across to the 'bench' and Will and two of his teammate had started doing sit ups and push ups while waiting their turn.

Chemo hunger

The kids enjoyed their Halloween and Will had fun at his soccer game on Saturday. It was a fun weekend with the kids although Dina was feeling a bit under the weather. Yesterday Will was passionately watching the Green Bay game, he was screaming and yelling and cheering. It is quite funny and is oddly making me become a fan as well. As much as I love watching games with Will - especially when it is his idea and he won't miss a play - it does create some issues due to some of the commercial content. I try hard to pause/fast forward to avoid some of the nightmare evoking violent movie commercials but sometimes you can't get him to miss something you wish he did not see when the TV is on.

Yesterday when we were flipping around the channels and on NBC Will caught a commercial for a show called Mercy. There was a bald patient and Will asked:

"Is that a kid or a grownup?"

I said that I think it was a grown up. I asked him if he was wondering why the person was bald and he said yes. I told him that the were most likely bald because they were getting chemo like him.

He was wearing his Green Bay Packers football helmet at the time and absently slid his hand up under his mask and started rubbing his head when he said "but I have all my hair."

I told him that there are all different kids of chemo and that some of them make your hair fall out, some make you throw up, some make your belly hurt, some make you not feel hungry, and some may make your feet hurt, some may make you not feel too much at all, and finally some might even make you hungry.

He thought for a moment and turned to me and when he did his face lit up with an absolutely gorgeous smile and he said:

"I think my chemo makes me HUNGRY for candy, waffles, cupcakes, fruit, & vegetables!"

I immediately started belly laughing as tears simultaneously sprung to my eyes and told Will that Yes INDEED it did seem that his chemo did make him hungry for waffles - frozen, toasted, and otherwise!

I told Will that it has been almost three years since he was taking a chemo that made his hair fall out - I said he was about Evelyn’s age when he last did that kind of chemo. I further went on to tell him that he was about Catherine’s age when he started taking it. I said that someday we may change his chemo and that he may not be so hungry, or maybe his hair would fall out, and I just told him to make sure that whatever happened that he just be sure and tell me how he was feeling so I could help.