Cycle 8 complete. Scans in two weeks.

Cycle 8 complete. Scans in two weeks., originally uploaded by Will's_Dad.

Quick stop in the gift shop and then we hit the road for home.

New places

It took us about 5 hours to get up today due to insane wind gusts and slick roads. There were numerous lane closures to get cars back on the road. At one point we were travelling about 40 mph slower than normal and it seemed to fast in light of the cars off the road.

I lied to Will and told him Pizza Putt was closed so we went bowling in Shelburne Vermont instead. He had a good time and my fingers and elbow hurt as it was 'real' bowling and not candle pin and I have no idea how to throw those bowling balls.

The place also had a small arcade and a 'lounge' that Will wanted to get pizza in. I finally got him to leave and on our way up route 7 he was saying he 'really' wanted pizza. It was late and he was hungry so after screaming NOOOOO when I pulled into a Pizzeria Uno he said he'd try it. He had a great time and loved that place which cracked me up.

He finds what he likes and never wants to change (sounds like me...) and he almost seemed surprised he could enjoy something new. He ate more pizza than he normally does and told me he wanted to tell the chef that he 'makes good pizza'. The waiter did not seem to excited about this announcement but I know we'll be learning all about the pizzeria uno that (I think) is still located at the old Howard Johnson's next to the old movie theater in Braintree.

We checked into the hotel tonight for some sleep before getting up early for chemo (after he gets his pancakes of course). The hotel was crowded and we ended up in a room with just a king bed as opposed to two beds and you would have thought he walked into the Taj Mahal...he thought it was the coolest thing ever and started running around.

I have to get up at 3am to give Will his steroids but I find myself unable to sleep. I'm trying to catch up on my emails but I lose ground each day and we are closing in FAST on our event in March so I'm starting to get a bit anxious.

"Tonight we're gonna party like it's..."

Thank you Tara for the great picture of the kids!

It was a stage IV NB mom-a-palooza last night as Dina went to dinner with the moms of Christopher Mullen , Christopher Grimes, and Charlotte Kelly. I hope they can all find something good for themselves by occasionally getting together as a group to discuss a reality that no mom should have to discover.

Ten years ago I was reading doomsday scenarios about the impending arrival of Y2k and about six months into a relationship with a girl from work. Doomsday did not arrive on Y2k, that 'girl' became my wife, and it has been a decade full of more bad things that I would have liked - or expected - when it started out.

I remember thinking back in 2003 when we lost our first pregnancy right after Dina was laid off that it was such a difficult time. In reality that was just the opening salvo in a long stretch for the rest of a decade full of blows below the belt.

As yet another decade comes to a close I find that this time I have a wife who has done an amazing job being a mom to three very busy young children. I have three kids here with me here on earth that fill me with so much joy and at times worry. In fact, at times I wonder if Evelyn may give me more to worry about than Will's cancer.
And I now have a view out of my 'perspective window' at a different landscape than the field of roses I was looking at ten years ago. This one is a darker more menacing place with real doomsday scenarios that surround a lot of the wonderful things I have gained in the past ten years.

Part of that is simply what happens to all of us when you open up yourself to love. You can no longer keep your hands close to your body to protect yourself from the punches life can throw at you.
You have those arms open and outstretched around your wife, your children, and your family.
This is a wonderful and amazing gift to have and I would never change it for the world but sometimes I do wish that life would stop kicking me in the ribs for a few minutes so that I could enjoy all the good things in life without all of the ice packs and ace bandages.

I'm taking Will up to Vermont again this week and we'll be leaving bright and early to get home on Wednesday because the German is back in town for the holidays. It is turning into a welcome/feared holiday tradition.

Random questions of the day:
Given all the early AM driving we do from here to sniffing distance of Canada we see a lot of dead animals on the road.
My questions: Who picks this up? How do they pick up the big animals? Where do the bring them? Do they bury or burn them? Is there enough work so that this is a full time gig for someone?
I've seen some large things that I could not identify and often wondered how they get picked up/removed because on the way home at night they are all gone. Regardless of who is doing it they deserve a gold star for efficiency.

The kids enjoyed Christmas and Will was so happy to get his toys and Evelyn had fun too. I tried to sneak downstairs when I thought I heard something and almost saw Santa for the first time but he went up the chimney before I could lay my eyes on him. He did snag a piece of his suit on our fireplace though and there were cookie crumbs and carrot pieces inside the fireplace as they made a quick getaway. Maybe next year.

"Can we take a long shortcut"

This is the look on Will's face about 95% of the time Evelyn is within 'touching' distance of whatever he is playing with. This morning he was trying very hard to share in light of Santa's impending arrival but eventually he and Evelyn started violently drawing on one another with a green marker.

Will and I hit the road at 4:45am yesterday and thanks to our extraordinarily efficient and friendly friends in Vermont we were back home at about 3:15pm. In fact as we drove past the bus stop the parents were just arriving to pick up the kids. I don't enjoy the early morning departure but I sure do love getting home at that time and Will had a very good day. As we were driving up he was enjoying a movie and as we neared the hospital he asked if I could take "a long shortcut" because he wanted to see the end. That cracked me up but not as much as him asking me if I could "fast forward that part backwards" after hearing a song he liked. I've tried very hard to get up to say 'rewind' but he likes saying that instead.

I have a spreadsheet with Will's lab results from the past three years as well as all of his HVA/VMA tests since diagnosis. One of the markers we follow on there is the LDH and in all of that time it is always somewhere around 250. It fluctuates a little bit but only twice has it crept above 300 (305 & 310) before returning to normal (note: VT's lab has a different test value where normal is in the 700 range for Will). As we were leaving clinic yesterday I got a copy of Will's labs and my stomach dropped as I saw his LDH went from 253 last week to 420.

I asked to have another one done since this was from the prior day when VNA had taken his labs at home. In light of the fact that he had no other changes or issues I was hopeful it was an issue with a delay between the time the blood was drawn and when it reached the lab. We took out the needle and hit the road and I waited for a phone call. I was pretty hopeful and confident it would be ok but I was also going through the list of what we'd be doing if it was indicative of disease progression.

I found that the list did not include any really fun or exciting options!

When Monica called to tell me the LDH was normal I was glad to hear it and having the fear placed in your gut, and then taken away, helped provide some perspective.

No matter what challenges you face. No matter what obstacles, hurdles, or insanity you are dealing with the fact remains that things can always be worse and it is so very important to remain thankful. To be happy for what you have and not dwell on how things 'should' be. It is hard to live in the moment but I find it is the best way to live when I can accomplish it.

Despite some debate and discussion we are leaning towards getting some radiation for Will. His primary tumor has never received it (for various reasons) but we are pretty sure we'll do it which means we are looking at a two week stay in VT around February vacation to cut back on the time missed from school.

It is not the ideal 'two week' vacation spot in February but the bright side is that we won't have to deal with the lines we'd see if we went to Disney instead. Also, being that it is so incredibly cold that time of year at least the freezing temperatures will mask the smell of beaver sh*t that wafts down from Canada. And since no one enjoys putting sunscreen on or getting sand in their shoes perhaps this will be the new hot vacation destination!

On Monday we were invited up the street to one of our neighbors houses. They had set up a horse and sleigh ride around the neighborhood. They had a fire out side, snacks, coffee, hot chocolate and the kids all had fun playing as they waited their turn. Will had a great time and it continues to amaze me how many people live so close to our home that we are only now meeting that Will is in school and at the bus stop. I'm so glad he just beat the cut off to start Kindergarten this year because it has really enriched his life with so many new experiences that he really enjoys.

Finally, this year Jim is once again running the Boston Marathon to help save kids with neuroblastoma. He set up his page to support the NB Alliance HERE and we welcome anyone else to follow his lead yet again! Thanks - once again - for all your effort to help these kids Jim.

Merry Christmas.

Playing the Wii in clinic

Playing the Wii in clinic, originally uploaded by Will's_Dad.

Will is wearing his Green Bay pajamas (it was pj day at school today) and playing as the Packers in Madden football.
Anyone have any bodyshop recomendations? Hit some snow/ice on the way up and need a new bumper on the Tahoe. Can not believe how much damage snow can do

Skate

The car is warmed up, I have it all packed up, and now I'll just go pick Will up out of his bed and carry him out to the car for todays road trip. We'll see how far we can get into NH before the sun comes up.

The shirt Will is wearing is a Braintree Youth Hockey shirt that the Kelly's had made for Will. It is just like Shane and Owen's and he LOVES it.

It takes a village

You may recall recently how I posted this link to a story that appeared in the Irish Emigrant. We were thankful they did the story to help raise awareness about neuroblastoma and the funding gap needed to help save these kids lives.

To be clear this is not some feel good effort to raise money for bald kids.
This is not about education, awareness, or assistance.
This is about saving kids - TODAY - who are going to die without new options

This money is literally doing nothing besides creating clinical options today for kids. And when I say kids I hope you know I literally mean Will.

Will has benefited, and I hope continues to benefit, from the treatment that results from your support.

There is a trial combining DFMO and etoposide - both given orally - that is written and ready for kids. It will open up across the Neuroblastoma and Medulloblastoma Translational Research Consortium as soon as funding falls from the sky.

This is what Will would be taking today if the NMTRC had the money so they could open it across the consortium.

In the meantime?

In the meantime we will continue his current drug off study.
We will continue driving to Vermont once a week.
We will continue to enjoy every day with Will.
And we will continue to try to raise money for other trials like this one.

How can you help?

You can attend an event.
You can HOST a Gold Party and a 15% commission check will be donated by the company from their profits to Cure Me I'm Irish.
Grow a mustache.

I don't have a few hundred thousand laying about.

The only way we'll get there to enroll Will is $1 at a time, 1 event at a time, 1 gold party at a time or, as you can see from the email below, $1,665 at a time.

These wonderful people read the story in the paper, got involved on their own, and are making a difference!

------

Hello,

My name is Mike Nellany. I manage Dempsey's Bar & Grill @ 1185 River St. in Hyde Park, Ma. Earlier this month one of our bartenders Esther Moynihan suggested we try and organize a couple events in an effort to raise money for charity this Christmas. Looking through the Irish Emigrant one evening we came across Will's story. Since we're a small local irish pub Will's story touched us and lined up exactly with the type of organization we were looking to support. With the generosity of our customers, employees & ownership I'm proud to say that we were able to raise:

$1665

Listed below is some information on the events that were held.

12/12/2009 Twenty Five Card Tournament


The 1st place winner of the tournament was won by Johnny Duane from Cork / Hyde Park. First prize was an impressive traditional irish hamper (Fresh turkey, ham, whiskey, irish goods, etc.). Paddy Joe Duffy from Sligo / Hyde Park came in second. A good night was had by all where approx. 25 people signed up to play donating $20 each raising a total of $500.


12/18/09 Customer Appreciation Party & Raffle

$10 & $1 chances were sold to individuals during the weeks leading up to and on the evening of our customer appreciation party. Gerry Coogan from Meath / Brighton won the grand prize traditional irish hamper (Fresh turkey, ham, whiskey, irish goods, etc.). Overall $1,165 was collected in the raffles.

Special Thanks

Esther Moynihan- Came up with the idea, sold the spots in the 25 tournament & raffle tickets, she did an amazing job creating the traditional irish baskets and finding spot prizes.

Oliver & Mary Dempsey- Generously donated the funds needed to purchase the items Esther needed in order to create the traditional hampers.

Gus Joyce- Organized, managed and donated the 2nd place prize for the 25 tournament.

Best of luck and keep up the good work.

Mike

Seemingly unavoidable obstacles

A week from today Catherine will be seven months old and in that time we have been quite a hectic and busy crew. The trips to Vermont, the stress of adjusting to life with three kids, a few months of colic, an inability to get treatment locally, and some generalized frustration have worn a bit at the fabric of joy at the house.

The goals, beliefs, and desires of how Dina and I want to parent have come face to face with our current reality and there exists a divide. We had hoped to close that gap by removing these weekly trips but it would seem, for now, they'll continue and we'll just have to learn to avoid falling into that gap.

How?

By reminding ourselves - repeatedly - that it exists.

I can hit my head walking down my stairs on a low section of ceiling.
I don't know how long it took but now I tilt my head to the side seamlessly - without even thinking - and avoid it every time.

I hope we can get there with some of the cancer parenting 'low ceilings' but it is proving a harder reality to adapt to in spite of the fact that I have been bumping my head in the same spots for nearly 1/2 of a decade.

It is one thing to be aware of the stress, its impact on you, and the subsequent impact on those around you. It is a decidedly different matter when discussing how to avoid that impact because in spite of seeing the obstacle ahead of me I continue to be unsuccessful at maneuvering past it.

I know I said this when Evelyn was this age as well - that is her below - but when I see Catherine at the same age as Will when he was diagnosed it is hard to fathom.



It is hard to believe infants get cancer.
It is hard to believe a baseball sized tumor could fit in a 7 month old.
It is hard to believe we stuck a PICC line in his arm and started giving chemo.
It is hard to believe he is STILL getting chemo nearly 5 years later.
It is hard to believe how little funding goes to save our most vulnerable citizens.

We have always been giving chemo to Will.
He crawled for the first time while hooked up to a pump in the crib at the Jimmy Fund.
Yet it was all like some horrible dream because I still can not believe we had to do that to our baby.
I can not believe we are still doing it to him.

Thank you Kelly family..

On Friday evening our neighborhood had a progressive holiday party involving 4 houses between our house and the bus stop. There were over 70 guests invited and the festivities kicked off at 7pm and it was a lot of fun. It is funny how you can meet people who live so close to your own home but you have never seen before. It is a great way to get to know everyone and it was a lot of fun.

On Saturday morning Will and I were picked up by the Kelly family. Their daughter Charlotte is currently home from the hospital in isolation in between her two stem cell transplants. In addition to be a fellow Braintree resident this three year old girl is also battling neuroblastoma. Her parents and two older brothers offered us two tickets to go to Fenway park on Saturday and go skating on the ice set up for the Bruins outdoor hockey game on New Years day.

Will was very excited to go and he had a great time with the Kelly boys. I was a little worried about Will as he was on day 3 of his temodar and can be somewhat nauseous/moody/tired/etc.. but he had a great time and only one minor meltdown. I was so glad to see him keep his energy and be able to enjoy such a unique experience thanks to Greg & Patrice thinking of Will.



I look forward to getting all six of the kids together when Charlotte is out of isolation.

On Sunday Will & Evelyn came outside for a while to 'help' shovel and we ran into the same issue with Ev as we did with Will at this age - the complete and utter inability to realize you HAVE to keep your gloves on. Eventually the cold snow she wanted to pick up and eat became to much and she had to go inside.

Will began playing with the kids and eventually we made it up to East Jr High to go sledding. A lot of neighborhood kids had been up there as well and he had the best time. He went until the sun went down and he could no longer walk up the hill and he was pretty wiped out.

We are still going to be heading up to VT for Will's chemo as there are some liability/legal/contractual issues still left to work out. I know Will is happy about this as he loves VT but I found the last ride to be a lot more stressful than it needed to be given some ice on the roads and wonder what impact the snow will have on our trips. It may prove more difficult to go up and down in a day so it looks like we may be staying the night again depending on weather just to be safe. It looks like we'll finish cycle 8 in Vermont and then we scan the week of Jan 11th. If we continue we'll start cycle 9 in VT so that gives DFCI another 4 weeks to get this sorted out if we in fact continue on this therapy after scans.

Sledding at sunset

Sledding at sunset, originally uploaded by Will's_Dad.

If life hands you lemons... squirt them on your lobster

Even something as innocent and sweet as a snow angel can cause you to fear some deeper sinister meaning when your 5 year old with cancer makes it.

For about two years as newly minted teenager I spent a lot of time in physical therapy, usually two or three days a week. Going to therapy was not much fun but given that I did not have my license I’m sure it was less fun for my mom who had to drive me and then wait around for an hour.

Towards the back end of this stretch before I was able to drive the car myself we ran into some scheduling issues with my ride. It was at this point that my mothers’ dad, Pa, stepped into the gap and offered to drive me. So two or three days a week Pa would pick me up at the high school, drive me over to Weymouth, and sit in the car for an hour as I had my appointment. Not since I was a young boy doing sleepovers at Nana and Pa’s house in Milton had I spent so much time with him and, more importantly, I never had the chance to spend so much time with him alone.

All of the time I spent was at holidays, parties, gatherings, and family events. This is similar to so many of us today that have this kind of interaction as the vast majority of our time spent with our extended family members. While I love my family and we always have a great time the quality of that time as a group is of a different texture when compared to one on one time. While I wish I did not have to go to therapy the fact that I was able to establish a different kind of relationship with my grandfather is something really wonderful that came from that experience and something I am so grateful for. To hear stories about his youth, his friends, and his antics opened up a side of him that I did not know existed and that is what I remember about him more than anything else when I think of him.

I am not glad that I have bad knees.
I am glad that I got to know my grandfather.
Getting something wonderful as a result of something awful…..

That pretty much sums up so much of the past five years of our lives.

Obviously I don’t want my child to have cancer as it fills our lives with so much worry, misery, stress, anxiety, and fear. However, as much as we do not want it here the fact remains that it is never – ever - going to go away. Even if we somehow manage to make his tumors shrink the fact is that his cancer is going to be a forever thing.

And there are ‘good’ things, good people, and good experiences that we have had as a family as a result of Will’s cancer.

Will and I have a great time on our road trips, we have all sorts of experiences that otherwise we would have never experienced. I have changed as a person after seeing how wonderful and supportive people can be (and sadly how some people simply will never get ‘it’). I have learned a lot about myself (good and bad) I have learned a lot about others (good and bad as well) and have met some rather extraordinary people.

I now know there is not a nobler profession in the world than pediatric nurses - and child life folks - who spend all day every day with kids and families who are having some of the worst moments of their lives.

The relationship I have with my son has been made different from this disease. It is so incredibly powerful, so intense, so layered with meaning because of what he has to endure. This is the one thing I am truly thankful for in spite of the horrifying price. It is unlike any relationship I would have with any child under any other circumstances. Would my relationship with Will be different if he did not have cancer?

It would be extraordinarily different.

We have spent his entire life trying to keep him alive by making him sick.
How can it not be of a different quality if the entire foundation is based on keeping him alive? This is not a place where the base for your relationship with your children should come from but this is what we are dealing with.

I am not happy about any of this and would give it all away in two seconds to go back to a life where I could bury my head right back in the sand where it was before all of this began. I saw the movie the Matrix on cable recently and could not help but think of the comparisons between that movie and what life is like for cancer parents.

The world is a much different place, forever, than the one we all lived in right up until that very moment when we were told “your infant/child has cancer”.

Now?

We are now aware of the brutal hard honest truth and there is no escaping it.

I’m glad we can still experience joy and have new experiences in this world. However, so many times that joy is tinged with the bitter realization that something we don’t want at all is at the source.

The stink of pediatric cancer can threaten to spoil some of those experiences, to mute the enthusiasm, temper the joy, and a cause you to reflect on how things ‘should be’ instead of enjoying how it is.

This can only happen if you let it.

Sometimes those thoughts want to creep in but since bitterness and pity seem the domain of adults I’m glad I have Will to look to as a perfect example of how to live.

GO PACK!!!!

We just got home and it was quite a long day. Will came home to a WONDERFUL surprise as a result of the email below.

Thank you Melinda and your family as this was the perfect ending to a long day and he is all smiles.

-------

Hi, Pat. My name is Melinda. I stumbled across your blog several months ago and since then have become interested in reading about your family's journey with cancer. I am writing because you have had two posts lately talking about Will's interest in the Green Bay Packers. I happen to live in Green Bay and am thrilled that Will is a Packer fan. My family and I are HUGE Packer fans (it's hard not to be a fan when you live in Green Bay). I would love to send Will a Green Bay Packer care package, which would include, of course, a cheese head. Is there an address you would feel comfortable giving a total stranger where I could send a package?

Best regards,
Melinda

All that matters

The only thing that matters is my kids happiness.

I know this.

However, to actually LIVE this I must get over my own selfish needs and complaints and focus on the outcome.

Why?

Because the only thing that matters is my kids happiness.

Please read what Will said in the email below:

I told Will that the medicine wasn't ready in Boston and that he had to get it in VT and he stood up, raised his arms above his head and said "Yes, AWESOME!!!!!!!"

He thinks it is AWESOME that tomorrow he misses school, drives to VT while eating snacks, watching movies, and clowning around with his dad to get his chemotherapy.

He is happy. That is all that matters.

They say youth is wasted on the young. I could not disagree more.

They are the only ones who have life figured out.

Pickle juice

We just received a call from Will's doctor and we were informed that things are not ready for Will to get chemo in Boston tomorrow morning as planned. I just emailed Vermont and they have put things in place for tomorrow afternoon so it looks like we'll be continuing our therapy up there until this is sorted out.

It would seem that we'll get to test out I-89 in snow after all.

I feel very much like we are playing the role of Charlie Brown as Lucy once again has yanked the ball away at the last moment.

Given that we just spent the past two weeks talking Will into accepting his new clinic location this seems like a bit of a setback. He was up very late last night with some anxiety and kept asking if we could go to Vermont instead so now he is going to think he got his way by staying up late and crying last night.

I hope he does not adopt this as his new default position because he was quite tired today and I sadly lost my patience with him last night.

I suppose deep down I knew this was going to happen all along but I'm still a bit frustrated. It's been one of those weeks.

-I got off the train on Monday night and the MBTA police where having my car towed from the parking lot. My car registration had expired.

-Last week I faxed in about 45 pages to the IRS because they are looking at my 2008 tax return.

-We are now getting harassing collections calls about outstanding medical bills.

Note: this isn't about money, it is about being organized about paying bills.

What it comes down to is that no matter what is going on that absorbs my attention the world still goes on. Bill have to be paid, car registrations renewed, paperwork filed, and all the day to day mundane tasks that fill up our lives. However, we've been in crisis mode for five years but after a while you just can't be in crisis mode anymore because, quite frankly, it creates more issues to deal with.

The longer this goes on the harder it is for me to multi task in spite of the fact that the need for me to do this becomes greater.

I have spent seemingly weeks on paperwork and websites for fundraising stuff that really should take minutes.

It is driving me insane.

I can't follow up on things I need to and I just want to world to slow down because my brain keeps slowing down like a hamster after a long day on the wheel. And there is still so much to do that is not going away just because Will has cancer.

If you figure I'm in bed 6 or 7 hours a night that means I have about 120 hours a week in awake time and I was really looking forward to NOT spending 12 of those hours going up and down to VT for chemo (at least for a few weeks) so I could at least pretend to attend to the other items on my ever growing to do list.

At this point I feel like I could remove my brain from my skull and soak it in large jar of pickle juice I might regain some of my mental clarity that has seem to have gone missing.

We are very fortunate

2009 - 5 years old


This weekend we decorated the tree and, as always, I had to pick up Will and allow him to put the snowman on top of the tree. As we decorated the tree this year with Evelyn and Will - as Catherine watched from her exersaucer - I realized how quickly traditions can sprout up.

We have a whole host of ornaments already and so many of them are oddly filled with powerful meaning to our family. Dina's favorite, and one that always brings a tear to her eye, was a gift from her Aunt. There are ones that Will made, ones we got as wedding presents, and various things we have picked up across the years. I am thankful that we have these traditions and I hope we have many more years together as a family to continue them.

This weekend Will attended two birthday parties, we went public skating, and on Saturday as he was bowling at his friends birthday party I went to a dedication of the Jack Ramsden children's room. Will was 1 year behind Jack in birth, diagnosis, and relapse and I was so honored to have attended the dedication in Jack's memory.

All appears on track for us to continue Will's therapy in Boston this week as we go in for a full day. While it is the same exact therapy it is a new hospital and new consent forms must be signed and the process followed to receive this therapy in a new location.

Tree-topping across the years


2008 - 4 years old


2007 - 3 years old


2006 - 2 years old

Sponsor

We are very Proud to have New England Tax as one of our sponsors for Cure Me I'm Irish this year. If you, your business, or your employer,would like to be a sponsor please email pat @ CureMeImIrish.org

We met yesterday with Will's doctor at the Jimmy Fund and it looks like Will can start getting his TPI-287 here in Boston next week.

What does this mean?

Will's doctor here had to go through the process of opening this trial here for Will, getting approval, and crossing all the i's and dotting all the t's. Since Will finished the phase I study this was possible to continue doing in Boston. Will is so excited that once this begins he will not have to miss any more school for travel! We can pick him up after school gets out at 11:15 and bring him into clinic in Boston for his chemo.

This is going to be a dramatic improvement in our families quality of life. Will goes to school, I go to work, and Will still gets his chemo! As far as challenges facing relapsed NB families go (no immune system/rapid progression/terrible pain/hospice care) this was nothing. However, the past six months but it did prove challenging given how the timing coincided with the arrival of a new baby and all that encompasses. So this will be a nice little break for everyone before things ramp up again eventually. How long will it last? Could be a few weeks or a few months but either way we are grateful for the break.

How long can we do this for?

It depends.

We'll scan again in January in Vermont. If Will remains stable and his side effect profile stays consistent we could theoretically get to the summer (and beyond) on this treatment.

Why would we change?

1. Scans show new tumors (not good)

2. Side effects increase (not good)

3. A new therapy opens (GOOD!)

There are two pending trials I'd enroll Will on if open so it is just a matter of when those studies open (IRB approval and, of course, money).

As I mentioned it has been a while since Will has gotten chemo in clinic at the Jimmy Fund but he'll be back at it next week. I joked with Will's doctor if he will still have to sit in the crib to get his chemo but he assured me that a bed will be just fine.

Another NB dad has offered a great opportunity for Will to do something really cool next weekend and I think his head may explode when he sees what is in store.

Thanks Greg for thinking of Will.

Go ahed and die...I don't give a shit because you do not vote and you'll be dead before you are 18.

Everyone was so excited when the Conquer Childhood Cancer Act passed.

Now?

It passed unanimously but since it is an appropriation it has to then be funded and now the cowards will not do so.

Why are they cowards?

Because they passed it and voted on it when they knew full well they had no intention of funding it.

You don't want to fund it? That is fine and your choice.

However, to hide behind these methods and not giving your true sentiments to your constituents is, at best, cowardly.

Is it an unpopular decision?

Of course it is.

And that is why you hid your true feelings in the first place.

So that leaves me with the burning question:

If you have to hide your actions from your constituents because you know everyone would say 'DO IT" why don't you simply do it?

Why are you not doing what the people who vote for you want?

Is that not your purpose on this planet? And if you are going against their wishes why not have the backbone to explain yourself?

Shame on all of you for your cowardice.

In between all your self congratulations, your own fundraising to deepen your own war chest, and all your promises to special interests why don't you pop in at an open casket wake for an infant who died of cancer?

Why not walk a mile in these families shoes?

Maybe then you still will not fund the appropriation - and that is just fine.

But perhaps then you'll have the decency, courage, and conviction to stand up and explain why.

As always the burden falls on the families of the kids fighting for their lives to somehow raise enough money to make a difference.

That makes sense.

My kid is dying of cancer.

We are doing everything we can - medically - to try and save him.

Shouldn't that be enough?

Do I really need to grow a mustache to raise money?

Plan a St. Patrick's day fundraising event?


Seriously though, I understand how the government couldn't possibly find 30 million/year for five years just lying about.

It's not like I can think of countless recent examples where the government would just toss billions and billions of dollars at a problem just hoping it would go away.

$88 million to help providers update their paper records to electronic ones seems like a much nobler cause than saving children from certain death.

Wouldn't you agree?? Your elected officials do.

In all honesty, when my son is dead it will be so much easier if I could go through an electronic record of all the decades old chemotherapy agents he was forced to take as opposed to having to risk paper cuts and kicking up dust when flipping through old fashioned paper records.

Bully for you Mr. President! Well done!

Note: despite my indignation do you like how I slipped in those fundraising efforts above?
Note 2: In reality I knew there was no chance this would ever get funded but the unanimous vote + lack of funding/accountability really irritates me.

If things are always changing...shouldn't that really just be considered 'the same'?

Will has had a difficult stretch, emotionally, since last Friday. He is not sleeping well as he gets up at night and is having bad dreams an calling out for us. He was crying last night at bed time and saying that he wants to move really, really, really far away to someplace where the snow never leaves.

He was a little sick this weekend so we kept him around the house and didn't' go anywhere or do much of anything. As time continues onward it is becoming quite apparent that yet another change in his routine is most like the culprit. In spite of being a Dana Farber patient for nearly five years and the fact that he has been going to the Jimmy Fund clinic since he was a baby he hasn't physically received an IV infusion of chemo at the Jimmy Fund since December of 2006 (MIBG in Philly; oral ABT at DFCI, Hasbro/Tufts/Vermont).

The picture below was taken of our 2 year old Will on our way to the Jimmy Fund holiday party that same month three years ago.



Will told me last night that he wants to keep going to Vermont. He says he loves the beds up there because he can sleep and he likes to wave hello to the whales tales when we get there. When we explained that he will no longer have to miss gym class on Thursdays so we can drive to Vermont he changed his tune! However, in spite of his familiarity this is still going to be quite an adjustment (for him and for us). We will do a lot of talking about it with him to let him vent his frustration and anxiety but to be honest on nights like lat night when he was sobbing about moving to Green Bay I am tempted to throw everyone in the car and just move to Vermont just to avoid creating any more anxiety for him.

He'll be fine in due time and while I'm upset about creating issues for him we are blessed that he is even alive. In spite of issues like this one I'm thankful that he/we are able to experience all the good and bad that life has to offer.

Interstellar Meth

So I'm five weeks into my campaign for Mayor McStache. I find it amazing that I have raised over $1,000 thanks to all of you wonderful people simply for not shaving. I have about 90 days until election day and I would appreciate all the support you can give.



Check out all the candidates at Mayor McStache and please 'vote' for whomever you deem most worthy for this most important elected position.

There is something I'd like to get off my chest that has been bothering me a lot lately.

Can someone tell me why it is that after all these years there has never been any attention given to the fact that not only did ET's parents abandon him on another planet but they also refused to come back and look for him once they discovered he was not on the ship?

As a parent your first instinct is to protect your children yet these cowards practically knocked ET out of the way while making a bee line for their ship. After taking off and being 'safe' you'd think someone would realize "hey...where is ET?" and they'd go back and look for him.

They know damn well that he can't stay here for long since our atmosphere can not sustain him. However, not only do they NOT come back but ET has to build some sort of absurd phone to call and beg his parents to come and pick him up?

Seriously???

And before you say anything defending them I don't want to hear any of you ET apologists lay down your 'they tried to find him' cover story.

If this baby alien can make a phone out of tinker toys I'm quite certain they have the technology to track down their son especially since he was no further than bike ride away from their landing zone.

Simply put: if you can build a ship to fly to earth and make sh*t levitate with your little red finger then you can easily find your son 3/4 mile away from where you were frolicking in the woods.

So someone please explain to me why they have never gotten any grief for this?

Why is it a heartwarming story of love and childhood instead of a depressing movie about childhood abandonment?

I bet his parents were hooked on the interstellar version of crystal meth and they stole that spaceship and had just been flying around the universe having a grand old time. I bet they never knew he was gone until they yelled at him to go fix them a turkey pot pie and he didn't respond.

I can never watch that movie again.

12 hours converted to less than three minutes

I created a video showing what one day a week has looked like since early June since Will has been traveling to Vermont for Chemo. Most days were about 12 hours long and about 8 of those hours - nearly 70% - was spent in the car. Therefore, as you can probably guess it is not a terribly exciting video.

However, what is TRULY remarkable is the segment of the video when we arrive at the hospital. It is not so much the fact that Will sprints into the infusion bay it is the smile on his face, his laughter, his joking around as we walk to the clinic.

What really struck me when watching this was how happy he is in spite of the 4:20 am wake up call, the 3.5 hour drive, and the fact that he is about to have a needle stuck into his chest and chemotherapy infused.

"I have a GREAT idea." - Will

Will running around as usual and Catherine just watching and dying to figure out how to make he legs work so she can run after him too.

Will and I stayed at the Sheraton in Burlington on Wednesday night. It is always difficult to be away from home but it was also nice to not spend 8 hours in the car in one day sandwiched around chemotherapy. While we did not have an opportunity to make it into the pool given our time constraints we were able to make three trips to the fountain that also serves as a Wishing Well.

On our way back to the room after his night out playing he made three wishes after climbing up on the wall:

1. I wish Christmas was today
2. I wish the pool was open
3. I wish I could get a BIG hug from daddy.

At this point he leaned towards me so I’d pick him up off the wall and give him a big hug and as I did he said “this is my favorite wish because I always get it!”
He is so awesome.

Amidst all of our in and out trips Will also noticed that the lobby of the Burlington Sheraton had a large bin for donating toys. He kept asking me what it was for, and what it was all about. They were asking for unwrapped presents and I told him they were collecting as many toys as possible for all the boys and girls who maybe can’t get any Christmas gifts this year.

Each time he saw the bin he would run over to check and see if there were any gifts in it.

Each time he did check he found that it was empty.

After checking out of the hotel yesterday we went over to the hospital for Will’s chemo. When we finished up we got into the car and I spotted a package I forgot to bring in. It was a bag that Dina had given me to bring in to the child life team with some things that she wanted them to have. I turned to Will and told him I had forgotten to give these to Jenny could we go back in and drop it off? He said:

“I have a great idea! The hospital has plenty of toys why don’t we go to the 'Sherrif-ton' and put it in that box for the kids?”

I barked out a simultaneous laugh, stunned pronouncement, and stifled cry all at once!

“Of course we can Will! That is a great idea.”

So we drove over there, I had to park right out front so that he could see me, and I ran into the lobby, looked to make sure he could see me, and dropped the unwrapped presents right in the bottom of the bin.

When I got back in the car I said we were all set and he was so happy and then said “now those kids will have some presents."

I am always so proud of him but he nearly melted my heart with the excitement in his voice when talking about helping other kids.

When dinosaurs roamed the earth

Will testing out his new street hockey stick after cutting it and taping it up.

Last night Will had a great time playing with other kids. All these trips up here are just time in the car, time in clinic, and time in the pool. Last night he got to run and play with 10 kids at someones house. He was not in clinic, he was not at the Ronald McDonald House, he was just at someone's house playing and having a great time. When we were leaving he noticed the attached two car garage and said "that doesn't look like a garage". I explained that it was an attached garage and how that is different than the detached one we have. When he asked why I explained that our house was very old and it was built before everyone had cars. He asked "was our house built when Dinosaurs roamed the earth?"

We are still having some issues with the concept of Dinosaurs/Man not overlapping!

Will is getting infused with his last dose of TPI-287 for cycle 7 right now in Vermont and we hope to start cycle 8 in two weeks time in Boston which is right about the same time that snow will start falling out of the sky in two foot chunks around here.

We have two new candidates for Mayor McStache that you can see in the right hand sidebar: Larry & WB Troup. Thank you for joining and welcome to the race!

He's just a kid

I had to protect the candle so that we could all blow it out at once. Despite my best effort it had to be relit on two occasions so everyone could make a wish. You know mine.

Dina picks up Will each day from the bus and since it is a 1/2 day Kindergarten in our town this means it is a smaller bus with only Kindergarten kids. The driver gets to know all the kids well and today Dina made that woman cry.

On purpose? Of course not. However, Dina was at the school to pick Will up today and the driver saw her and asked what was up. Dina said how Will was going to Vermont and the driver asked if it was for something 'special' like a trip or a vacation and Dina matter of factly stated it was for chemo. She - and I - had just assumed the driver knew this. She did not. And proceeded to cry.

And while I certainly do not wish any emotional stress upon any human being it certainly speaks volumes to Will's quality of life that as a kid nearing 5 years on chemo that someone who sees him each day had no idea.

Booster

Will is at the pediatrician today awaiting his H1N1 booster shot and I received this picture from Dina. He will be heading up to Vermont for the last infusion of cycle 7 tomorrow as we are on track to start cycle 8 in Boston in two weeks time. He is going to get to hang out with some kids tomorrow night which will be fun for him. Usually 100% of his time is spent in the car, in clinic, or unconscious from medicine. This will be a nice change of pace for him (and me).

We played some hocked this morning before heading to the bus stop and I expect there will be some more tonight before bedtime as well. After bringing Will home from the doctor Dina had to bring Evelyn to the eye doctor. She has a duct that is clogged under her eye - it happens sometimes - but it seems to be getting worse rather than better so she went in today to see if they need to intervene to resolve it. It would be cool if someone started a Visiting nurse like service but with Pediatricians who traveled from home to home to check kids out vs. having to drag kids to the pediatrician.