A woozle has stolen my sanity

Will was wide awake at 2:30 this morning. He claimed there was a woozle downstairs attmepting to steal all of his toys.

I'm going to have a complete mental break if I don't get some sleep soon.

The below video links are all I've got as my brain is like a dry sponge today.

Emily was at our house and she and Will were listening to the Chipmunks movie soundtrack and dancing and singing. In this video Emily is playing Alvin, Will is Simon, Molly our dog is Theodore, and Evelyn is "Dave". When Will stands up on the ottoman he can see himself in a mirror on the far wall hence the funny faces and 'thumbs up' at times in the other two videos below.




Evelyn is really grooving at the begining of this one...




And finally in this video Will is playing along with Alvin while paying tribute to the Who. My favorit part is the filthy look that Will gives Emily near the end when he spots the two fingers over his head.

Work

Work, originally uploaded by Will's_Dad.

Will wanted to come to work with me today so we drove in and I discovered, thanks to my Ipod, that in addition to the Police Will is a fan of Radiohead.

Joy of Cooking

If you click on the image I have attached here you will, if you haven't already, gain a visual appreciation for precisely how unforgiving this disease is.

I have copied this from Max's homepage and it delivers a staggering blow each time I see it. All of these kids, all of thes families, being eviscerated by the unyielding progression of this disease.

At times it makes me feel like a prisoner.

A prisoner obsessed night and day with escape.

Constantly hatching new and better plans for escape each more intricate than the last.

Always searchign for a way out...

Always hoping an easy solution will present itself as a result of this constant worry.

Always hoping that I can finally break our family free and rid myself of this constant worry...rid Will of his constant chemo.

Each set of scans is bastardized soup of pain and relief and very little joy survives this crucible. Each trip through leaving you spent and simply fighting to recoup in time to simply experience it all yet again.

I'm torn by my worry and pain.

I know, and care about, people who would do anything and give anything, including their own life, just to spend one more day with their children. To have one more moment, to experience the torment of yet another set of scans. I also know kids who are still in this battle and have not been as fortunate as we have been in terms of immediate side effects. Will was 3 feet 9 inches and 59 pounds today at his clinic visit, he doesn't require hearing aids, and his organ funtion is 'solid'.

Will is an amazing gift and an incredible reservoir of joy, love, and fullfilment for me.

However, that reservoir only goes as deep as neuroblastoma will allow so there is the dichotomy of 'we are fortunate to have Will alive' contrasted with 'I want him to live to old age and have a happy and fullfilled life'.

Figuring out which of those realities I should chose to live in is not easy. I don't think life turns out quite how most of us would imagine it to be. Simply making the best of each day no matter the circumstances is probably the best thing any of us can do regardless of where we find ourselves in our journey here on earth.

Will has started cycle 6 today and will be headed home soon where I will meet up with him after work to bake an apple pie. He'll want to help, Evelyn will be tugging at my leg, Molly will be circling for scraps and all will be right in my world.

Cancer, chemo, life, death, worry, and stress.

I'll have to refer to "Joy of Cooking" when I get home but I'm fairly certain that none of the above listed itmes are ingredients in apple pie so I'll just leave them here on this page.

A pie is in the works

I love this picture of Evelyn.

Details about Wedensday evening's fundraiser in Braintree can be found HERE.

For those of you still looking for tickets you can email: lacey816@beld.net for more information.


If you have not visited Erin's page before then you are missing out on the updates of an amazing young women. If you do follow her page please do not be shy about sharing your informatin for the Erin Project as hearing from people who follow your kids story (even for the first time) is a very powerful thing.

Sam got Good News on his scans...and so did Andrew.

Hans is at CHOP this week for MIBG therapy and I'm hopeful he'll be feeling fine and out of that room soon.

The video below is from Will when he was in this room the night before his infusion (and before the catheter was placed). The catheter drains to a bag in the lead lined yellow box you see in the video since they want to remove the radioactive urine from the bladder as quickly as possible.



When I thought of MIBG therapy it seemed like such a long time ago and then I remembered that is because, relatively speaking, it was a long time ago as we are 22 months out from his first MIBG infusion in January of 2007.

Will is getting excited for Thanksgiving and he and I are going to make a pie tomorrow to bring to my parents for the holiday.

3 more cycles....

For those of you who asked....yesterday I bowled a 75 and Will bowled a 71 and he was very happy about this.

One of the greatest developments lately is how much Will LOVES hockey, especially the Bruins, and how he and I have been watching the games together at home. This is great because, if you have not been watching, the Bruins are a very exciting team to watch play in a 'the sum is greater than its part' manner much like the Patriots teams of the past decade.

Also, it is just fun to watch sports with Will. He loves the Bruins goalie Tim Thomas and he gets all upset at the beginning of a game if they show the goalie and it isn't #30. It reached a new lever of hysteria when he asked me who was playing instead and I said Manny (as in Manny Fernandez) and he thought I was talking about Manny Ramirez and the look of confusion on his face was priceless.

On both Friday and Saturday night we watched the games and Will did not want to go to bed and would lie down on the couch in his PJ's with a blanket and pillow and fell asleep watching hockey.

On Saturday night he woke up in the middle of the night (as usual) and asked Dina if the Bruins beat Montreal. Too funny...I now look at the schedule for the week ahead to see when I can watch it with him.

Yesterday Evelyn got a hold of the spare keys to my car and started walking around shaking them and saying "bye bye"...that killed me. But what was even more entertaining was how on Saturday I walked out into the room and made Will take his medicine. This included his final drop of SSKI
and when I made Will stand up to take this from the dropper. When Evelyn spotted the dropper she started walking towards me with her head tilted back and her mouth open like a baby bird in it's nest awaiting food. As she reached my leg and I did not give her a drop of the medicine like I had given Will she pitched a fit.

She had gotten in line to get her dose and was furious she didn't get it. Dina explained that Ev gets her fluoride via a dropper (and likes the taste) and that was what she thought was going on so I had to go get the fluoride for her. It was a rather interesting experience.

Will's labs:
WBC 5.76
HBB 9.9
HCT 28.1
PLT 271
AST 31
ALT 33
BUN 11

CT preliminary report:
Impression:
-Left lung apex soft tissue density, unchanged in size and appearance
-Normal abdomen and pelvis CT
-No evidence of tumor recurrence

What is interesting is that there has been some confusion between the Boston and Vermont scans due to the 'extra' lesions seen in Boston that are not seen in VT. According to the scans in Vermont Will only has his primary lesion in his upper chest. However, since Will is sedated for his combined CT/MIBG scan in Vermont he is asleep longer and this results in atelectasis (collapse of some lung tissue) that can interfere with visualization of the areas where Boston has stated there was disease.

Since they did not see this in VT despite looking at that area it was determined that perhaps a quick CT of his chest (while awake) would be a good idea to rule it out completely. So on Thursday morning Will had a quick chest CT at 9am while awake and then we went back later (after a quick trip to the aquarium on the lake in Burlington) for his combined CT/MIBG scan while sedated at noon.

It was great to get the CT of his chest without atelectasis so that the area of concern could be visualized and I was happy to see that it confirmed our hope that there is only one spot of disease in Will (his primary tumor). While I already felt this was the case it was nice to get a definitive scan to erase any doubts.

The plan is to do another 3 cycles of this drug combination and then scan again during the week of February 9th. I've mentioned Will visiting his friend the River Otter on a number of occasions and below is what it usually look like as we enter from the parking lot.



After being out of town last week I'm still buried in emails but I wanted to thank everyone for your comments, emails, and support last week. It truly does mean a lot to us to hear from you and the support is very powerful so thank you.

Sunday bowling

Sunday bowling, originally uploaded by Will's_Dad.

We went bowling again this morning

Walking properly

Walking properly, originally uploaded by Will's_Dad.

Just putting our stuff together for the trip home and snapped this shot of Will's travelling medicine bag.

He seems a bit uncomfortable this morning from his marrows but he now has some medicine on board and hopefully he will be more like himself later today. He was as out of it yesterday as he has ever been from being knocked out.

He could not walk on his own or stand and said that he was "really wobbly". Eventually the world stopped spinning on him but not before he asked "Daddy, when can I walk properly again".

His marrow was once again sent off for flow and his urine levels of hva/vma are being tested as well. His labs looked good so it is back to RI on Wednesday to start back on his next round of chemo. We will do 3 more cycles and then scan again in February as long as nothing unexpected develops.

Will is stable again!

Scans showed no new lesions and no change to his existing one.

Comfort Zone

Comfort Zone, originally uploaded by Will's_Dad.

Here is Will awaiting his "sleep medicine" as his combined SPECT/CT is scheduled for noon followed by his bone marrow samples being taken.

74's

Will and I went bowling the other day (this is Candlepin bowling for everyone outside of extreme eastern Canada, Maine, NH, and Mass.). It ended up that I went first and as he was taking his last turn I looked up at the electronic scoreboard and my score (I really tried) was a 74. As Will was about to toss his last ball of the string he too (wearing his Bruins shirt of course) was at 74 and if he was to hit 1 pin I was (pardon my French) screwed. Being beaten in an actual, everyone is trying, game of skill by my 4 year old (with 40 plus round of chemo on board) would have been 'interesting'.

Mass Lottery song

I enjoy tv shows (and automobiles) that most people really enjoy when they cross the 55 year old barrier. Since I am soon to be 35 this gaping difference creates a few things that people who know me use to taunt me with.

I enjoy watching a few tv shows (This old House; Chronicle) that help reinfornce this taunting and one night just after one such show ended there was the standard 15 second announcement of the winning daily lottery number. The video below is from what erupted when that accompanying song was playing with the lottery number.

Before I post the video I do have to say that this video started at approximately showing 12 of about 20 of this commercial before I was forced to rip the tv off the wall and throw it out the window.



I'm in my room and waiting (not so patiently) for Will and my parents to arrive in the morning in the adjoining room.

Cross-check to the face

Here Will is practicing his illegal cross check to the face move with his new stick & helmet. I am leaving early tomorrow for VT and Will is going to join me on Wednesday for his scans. In addition to scans there are a few other issues that have been on my mind and everything seems to be closing in on me as I fight to fend off the same old stuff I battle with during all scan weeks. There are kids I care about in places that I wish they were not and everything sort of caught up to me yesterday afternoon. The stress, anger, frustration, and helplessness all seemed to put me in a place where I was a horrible person to be around.

We all went to dinner at our friends house last night, without kids, where I was about as much fun as an unexpected kick to the groin. So in lieu of phone calls I'd just like to say sorry to everyone. I probably should have stayed home but I was looking forward to going.  

I've spent the bulk of today getting the massive oil tanker that is my mindset turned back in the right direction. It is a much slower and much more laborious process than I would like. However, I have to 'get right' and am just so annoyed at these seemingly endless, and completely futile, forays into anger and frustration. I know they are useless and I know that they end up doing dramatically more harm to me (and the people around me) than could ever possibly be worth it but sometimes no matter what happens i just can't keep a handle on it. The mental effort to stay positive and to 'be right' is akin to holding a 5 pound weight in your hand. It isn't very heavy and you can toss it about and throw it in the air but if you are charged with holding onto it permanently eventually your hand will get tired and even though you don't want to it will slip from your grasp.

I know this is the case and I know I bemoan this fact each time i drop this 5 pound weight but I'm simply hoping to share with you, as best I can, what we are coping with so that I can better understand it myself.

Maybe I should have left the airport

I am very envious (most days) of Dina's ability to be a stay at home parent and spend all day with the kids. This is usually at it's peak on Fridays and by the time Sunday night rolls around I have a much better appreciation for how her days aren't as care free and filled with sunshine and lollipops as I'd like to imagine when I am sitting here at work with a coffee and she is dolling out meals, time outs, changing diapers, doing laundry, grocery shopping and driving to clinic visits in Rhode Island by herself.

On weekends I have the benefit of having two parents present and I go back to work each Monday where I can get back to creating an ideal (Read as imaginary) vision of what a 'cushy' gig Dina has as a stay at home mom. I have two friends who raised kids at a young age as single working parents and have to wonder how they did it.

All of that being said I do often wonder what takes place Monday through Friday when I am here at work (even though I already know) and the video below gives me a peak. It is about two minutes long and not much takes place. Will is dancing around while holding one 'musical' drumstick (the other is broken and this one is taped together) and while the song in the background playing on one of the cable companies music station is reason enough to watch the video (Safety dance??? Really Dina?) my favorite part happens at precisely 60 seconds into the video when it appears the combination of Will's dancing and this impossibly awful song has a pied piper like effect on Evelyn.



I was reading Erin's page and thinking about a story that I could share with her about myself for the Erin project. As I was ticking off the short list of interesting stories I could even come up with I quickly deduced that nothing was age appropriate for the Erin Project. One of the items on that list was an unplanned trip I ended up taking for spring break of my senior year in college. Now, while it would have provided a good lesson as to why no one without a job should ever get a Discover card with a $1,000 limit I was not going to share that particular story with a middle school student.

The trip involved six friends and included a couple sharing one room and four guys in the other. When thinking yesterday of who was on the trip I was immediately struck by what has transpired with that group of friends in the subsequent dozen years.

Of the six of us that went on that trip...

1 friend(me) has a kid with 'incurable' cancer
1 friend has beaten his own cancer into remission....twice
2 friends got married and currently have a child getting chemo
1 friend was killed in a car crash 11 years ago

I know bad things happen to people all the time but this is like a bad movie.

I also know that friend #6 that I emailed this revelation to yesterday probably isn't too excited that I decided to share this observation with him and has probably spent his last 24 hours looking skyward for a meteor racing toward earth with his name on it.

Will is heading up to VT next Wednesday with my parents where I'll meet them in the afternoon for his MIBG injection. On Thursday he'll have his CT/MIBG/Marrow and we'll spend the night before returning home on Friday. I'll spend the time between now and then ignoring the crushing pressure attempting to make it's presence know on my throat and chest by giving the wine corkscrew a workout. I'm going up to VT on Monday on my own to meet with a friend in town so Dina & Evelyn are going to hold down the fort at the house with Molly and a few visitors next week while we all await word. It is interesting to wait around to see if your life, as your currently know it, will continue rolling on or if it will take an exceedingly 'interesting' turn based on the results of a radioactive dye and a CT scan.

The "chest song"

The other night I was bringing Will up to bed as he wast tired from getting his chemo that morning. As we were going to head upstairs he had to dig out his "binky and blanky". He has a small blue blanket that he sleeps with and as I have discussed in the past he still sleeps with a binky (pacifier) at night. We are getting to the point where I don't even think Evelyn will have on for much longer so the fact that her 4 year old 59 pound brother still slept with one is interesting.

So after he retrieved his items and we were headed towards the stairs William declared that he no longer wanted binky. He stated that he was going to leave it on the table for the binky fairy and that he was now a big boy. I was flabbergasted by this development and also by the fact that this gesture about an absurd piece of plastic struck some unknown emotional chord inside of me. We started to walk upstairs and I was so incredibly happy that we never forced it away from him, that he did this on his own, and that he was ready.

He did make a few sad declarations accompanied by tears about how he'd "miss him" (him being the aforementioned piece of plastic) but all in all I was surprised at how well he was able to move on. He was able to get himself through so many round of chemo, so many days of feeling lousy, so many nights of vomiting, and so many days of shots and feeling lousy simply by using that thing to soothe himself. It was remarkable in that to Dina and I it turned out to be a shockingly dramatic event.

What is very funny is that after leaving it Will went on to tell me how the binky fairy (who we never were able to capture in any of our traps) was going to leave him new hockey skates. As I was carrying the now binkyless 60 pound bag of potatoes up to his bed it occurred to me that by the time I got back downstairs I may have a difficult time finding a place that was open and selling skates. As I put Will to bed and answered all his questions about the binky fairy (he wanted to know if she would take anything else while she was in the house?) I was putting a plan in place.

I rushed out and scored Will a pair of skates, a helmet, and a new green hockey stick and placed them on the table where the binky had been left. When Will came downstairs he was incredibly excited and has been wearing his helmet and carrying his stick around ever since. I had him put the skates on a few times to have him get used to them but he wants to wear those constantly as well and we have had a few small fights about how skates are not to be worn in the house. I'll be setting up a 12'x12' rink out back on our patio to help him get some practice in with his skating this winter (I sense this being a project that will frustrate me tremendously).

Will hasn't had any issues without his binky the last two nights and I'm so very happy for him. What I am also happy for is that Will LOVES hockey. Last night he was very excited to watch the Bruins and when the national anthem started he asked me if this was the "Chest song" as he put his hand over his heart like everyone on TV. That killed me.

Thank you Brownie Troop 74537

Yesterday afternoon I brought Will to the Flaherty Elementary school in Braintree. This is where Will is scheduled to attend kindergarten next year and it was where I went to Elementary school. I had not been inside that school since 1985 when we finished up 5th grade (anyone remember those t-shirts we all received with the big 85 on the front and with all of our signatures on the inside?) and it was funny to once again walk into the library.

We arrived near the end of the meeting at 3:45 and I had to drag/carry Will into the school. This is about the time that he is really showing the effects of having been infused with chemotherapy and from about 3-7pm on the day he gets it is when he feels the worst. I carried him into the school and he had his head buried into my shoulder. I sat in a little wooden chair and put Will in my lap (I'm surprised it didn't shatter since the two of us combined cross the 300 pound barrier) and he refused to look around.

Had he looked around he would have seen the most adorable group of 2nd graders in the history of mankind fast approaching (swarming) us and our chair. When the approached they had a gift bag and when I mentioned that to Will he suddenly perked up and by the end of our visit he had warmed up to the boy he usually is. Will received some wonderful stickers, a stuffed black lab puppy like Molly (we solicited the name "Midnight" for this puppy from the troop), and an envelope containing $1,776 for MagicWater to help cure the incurable.

I don't know what chain of events has to take place to leave you forever indebted to a 2nd grade Brownie troop and their leaders and parents but this was a truly remarkable thing these girls performed. I didn't know it was possible to feel pride for a group of kids (most of whom) you have never met before but that is the only feeling I can describe.

Will was excited after his visit and although he wasn't feeling great when he entered he was practically floating on his way back to the car. I couldn't help but smile at the thought of what it will be like next Fall when Will is walking down the hallway for his first day of kindergarten, his first day of real school, in a new building with new rules and new teachers and new kids only to discover that the vast majority of the girls in the third grade class are tossing "Hi Will"'s his way.

He doesn't realize it is abnormal for people you have never met to know your name. We went to pick up a pizza for dinner last night and he thought it was perfectly normal for their to be a picture of him in the window, just like the one at the dry cleaners, Kristin's, Dunkin Donuts, and just about everywhere else we go in town.

The video below was taken at Bugaboo Creek on Sunday after we visited the Museum of Science and Will was not so patiently awaiting the arrival of his hot dog. He is talking very fast but basically the essence of it is that he is asking me to videotape him falling down.