$100,000+

It is important to keep in mind that the clowns you see in the background simply happened to be the next group in the parade. Friends of Will is the most inclusive bunch of people around and everyones help is needed and welcomed. However, I have to say that chain smoking clowns that play brass instruments is, in fact, a wildly underrepresented demographic within the Friends of Will group of volunteers and I truly hope it stays that way.

I am awaiting the final total amount raised from Saturday afternoons Will-A-thon in Rhode Island however I have been given a rough estimate. Based on that estimate I can safely say that the Friends of Will will have raised over $100,000 from all it's events for Dr. Sholler's work in just the first six months of this year!!!!

In between January's fundraising event and this weekends Will-A-Thon there have been countless efforts by Friends of Will to raise money. From the marathon teams efforts, other runners, birthday party donations, meat raffles, a Jenny Boston party, yard sales, and countless other efforts. It is an amazing testament to the kindness that exists in this world for so many people to do their part to help.

THANK YOU EVERYONE!

We are currently working on a way to make that easier while also giving all the people working behind the scenes at all these events the recognition they deserve for all their effort. This should be ready in the weeks ahead allowing anyone who wants to help a simple and effective method of doing so. Your money is always welcome and we thank you on behalf of all these kids for your support! But we hope to make it easier for people to be recognized for their support and effort going forward because it is truly amazing to see.

It is staggering to see how much money has been raised in just the first six months of this year and we are incredibly excited about just how and where that money is being utilized by Dr. Sholler's neuroblastoma program.

Will and I are going to drive straight to clinic in Vermont on Thursday morning. On the way to get coffee today he told me that he really wants me to bring Evelyn with us. I am debating the merits of this idea, especially in light of reports I have heard today from Dina about his behavior. He seemed ok this morning and his Nana Ginny and cousin Emily came up to play but he sort of blew up this afternoon. The picture below is from the Will-A-Thon in RI on Saturday. I'll upload the other pictures from the 'real' camera tonight when I get home.

It was a "Friends of Will" kind of weekend

This was Will in the 'prep' area before Saturdays 4th of July celebration parade in our town.

The parade winds about 2 miles down the main street and ends at the high school where the towns 4th party is held the Saturday before every 4th of July. Brownie Troop 74537 was marching in the parade & representing "Friends of Will Lacey" and their troop while tossing candy to the crowd and handing out fliers about Friends of Will, the NB Alliance, and the annual fundraiser taking place on March 6th. Some mom 'Friends of Will' also walked while two dads, myself, and Will all rode in the car pictured above (nice of us huh?). Note: I sat scrunched down in the back holding Will's feet to ensure he did not roll out and tryin to stay out of view.

It was the first 5 hour stretch of sun we experienced in the past month here in Boston and Will had a good time. You may recall this is the SAME Brownie troop who held a fundraising bake sale last November and raised $1,776 for Dr. Sholler's NB program. The girls where all wonderful, as well as the moms & dads, and I have a few great pictures of the whole crew if any of the parents would like me to send the photos to you. Thank you everyone for helping get the word out about the event in March and spreading the word about Friends Of Will & Dr. Sholler. As I looked at the girls walking behind the car I had to laugh when thinking how nice it is to know that there is a mob of third grade girls at Will's school next year that not only know who he is but certainly will keep an eye on him for us.

Thanks go out also to the volunteers who manned the FOW booth at the high school field celebration and everyone who assisted. Will's busy Saturday continued soon after we arrived at the high school.

He had to get down to Westerly Rhode Island with Dina for the Will-A-Thon! He and Dina drove down and he had a great time playing with his cousins, watching tennis, playing croquet and even handing out the awards to the winning teams after the tournament was over. There was tons of food, good weather, raffle items, and cool Will Power gear. From what I was told it was a lot of fun and very successful. Thank you to everyone for organizing and participating to help these kids find a cure!

Dina and Will then stayed in RI for the night while I got to spend the night with the girls at the house. We caught up in the afternoon before heading over to my cousins for my Aunt's 70th birthday party. We did not stay too long as before we left I could see that Will was about to hit a wall. He continues to struggle with his mood swings, tantrums, and food intake issues and his dislike for Catherine is increasing while he is also enjoying Evelyn's company even more which is nice.

Poor Catherine is struggling and today at her 1 month visit she was put on zantac for reflux. We are fervently hoping this brings an end to her misery. She only stops crying if she is being held and gently rocked and pretty much screams in discomfort otherwise. She weighed 9 pounds 4 ounces at today's appointment. At one point last night Catherine was in the midst of a screaming fit when Evelyn was attacking Will and they loudly bumped heads.

Soon the two of them were in hysterics and Dina and I looked at each other while trying to console three screaming kids and had to laugh. THe fireworks were cancelled on Saturday so Will and I shot over at 9pm last night and caught them before heading home to watch Ice Road truckers! I can't believe what a dork I am and how much I love it.

Not sure on our plan yet for this week but I think I'll be going solo to VT with Will as I had thought of bringing Ev but we'll see how the week goes. If I did bring her I'd fear for everyone's safety in clinic.

Do you think I have scurvy???

Given the current state of affairs in our household it is difficult to squeeze out time for anything other than what simply has to get done. We need to ensure that everyone eats, that everyone bathes, sleeps, has clean sheets, clean laundry, gets their medicine, and has their bag packed each week for the trip to VT for life saving chemo.

It doesn't leave anytime for any leisure activities like paying the bills, cutting the grass, grocery shopping, or communication. Given the sheer lack of sleep and exercise it is very easy to continue that unhealthy spiral with also eating poorly. So in a vain attempt to keep myself from marching ever closer to the inevitable heart attack I will suffer I have decided to try and control the one thing that does not require any time requirements and asks only for some Will-POWER and planning and that is eating healthy.

I embarked on this endeavor on Monday morning which also includes saying goodbye to (most) of the disturbing amounts of beer I normally consume. This isn't terribly difficult since that wasn't something I'd do a lot of anyway under the current circumstances but it makes me feel like I'm doing something to say it aloud. But in reality this is sort of like someone with a peanut allergy giving up PB&J sandwiches for Lent...not a lot of effort required. Other than remembering to bring a lunch only a mouse could love to work it isn't terribly hard to do. However, I have had two 'revelations' in the past 4 days that I feel compelled to comment on.

1. There is nothing on Earth more perfect than biting into a piece of perfectly ripened melon
2. Black coffee is horrible and - somehow - makes a Styrofoam coffee cup more porous than a coffee with cream and sugar.

I feel like a sailor who has been at sea for six months and has just landed on some lush tropical paradise filled with fruit. I simply can not stop eating it....I must have scurvy (a deficiency in vitamin C) and a "person with the ailment looks pale, feels depressed, and is partially immobilized." Hmm...I'm pale, I'm partially immobilized, and I'm intermittently depressed.

Then again my intermittent depression is always caused by the death of a child I care about from the same disease trying to kill my son instead of from a lack of vitamin C so maybe I don't have scurvy after all. I'll tell you what, I'll keep eating fruit and if I become spry and tan I'll let you all know.

Anyway, cantaloupe, honeydew melon, apples, plums, banana's, oranges. Anything I can get my hands on to the point that I am freaking myself out and wondering what is happening to my body (I'm eating an apple right now and I'm 'loving every minute of it!').

Had I muted my bodies cry for fruit? Perhaps I have somehow set of some regulatory mechanism by denying myself my daily coffee with cream and sugar - just as I like it - and that has had a cascading effect on my bodies fruit mechanism?

In regards to my coffee I have discovered, each and every day this week, that while drinking my giant cup of hot black liquid that it always seems as if the cover is loose. I look down and there is black liquid leaking all down the side s of the cup. I quickly clean up the streaks only to discover that the bottom is also sticky and wet and I think "great, the cup is cracked" but I clean it off only to see that it is not in fact cracked. At least twice a day I remove the lid and put it back on to ensure a tight seal only to have it leak again.

What is this all about?

Does adding sugar somehow create an impervious 'paste like' seal along all edges of the container?
Does the cup, much like my stomach, simply revolt at the lava like burn and attempt - in its own styrofoamy way - to regurgitate the offending liquid via reverse osmosis? I now get to work and place the coffee into a mug on my desk so that I can finally consume my required levels of caffeine to get my heart started, my eyes open, and the hamster on the wheel inside of my gigantic head moving again since it is too messy otherwise.

Anyone out there have a brilliant teenager looking for cool science project for next year? If so, have him or her email me for some coffee related specs to see if they can not only prove I'm not crazy but also come up with as solution and maybe get themselves a full ride to Dunkin Donuts University.

The kids all had a very tough night last night with sleep and 'the other Will' was storming about the house this morning before I left.

I am glad that Will is chemo side effect free
I am glad he is alive
I am also hopeful that the steroid free Will gets to pop in for a few days before we head back up to VT on Wednesday.

That isn't too much to ask right? Well, that and someone donating 5 million dollars to Dr. Sholler.

Re-fried frustration

I was searching my Gmail account today for an old email and I came across a post I had written almost two years ago. I am sharing it again below because it perfectly describes how I have been feeling as of late when I keep hearing of new kids being diagnosed (a three year old girl in Braintree) as well as a few relapsed friends who have lost their battle.

Tuesday, July 31, 2007
Frustration

I was driving in to work today and couldn’t help but notice that nothing had changed. People on the Southeast Expressway were only as miserable as they normally are, no one appearred to have been crying, and since the sun had risen it would seem that the Earth is still spinning. I did not expect it to be any different but in a climate where you get 24 hour “Storm Force” coverage when there might be 3 inches of snow in the forecast I guess I was hoping for something more.

Over 2,000 miles away there is a family whose oldest son will forever be 7 years old. There are two young girls who will never again have an older brother, there is a lifetime of milestones, achievements, and mistakes that this boy will never make.

Yet the earth did not rumble, the ground did not split open, and fire did not rain from the sky.
I so desperately want people to know, to react, to be spurred to action. However, what is so desperately important to me, what fuels every waking (and sleeping) moment of my life, simply is not the cornerstone of everyone's existence. Yet I can't help but continue to be frustrated.

It is 2007 and I can be anywhere in this country and be just as productive with a small handheld device as I am at my desk. I can go to a drive-thru window and someone in Topeka is taking my order and routing the results to the drive through window 20 feet away from me; I can press a button on the rear view mirror of my car and someone asks me what I need and suddenly my car is giving me turn by turn directions to my destination; I can stand on a golf course and a device on the cart tells me my exact location, distance to the hole, and pin placement; I can put every recorded song in the history of mankind that I would ever listen to on a device smaller than my wallet; I can pause, rewind, and record live tv; I can type in my address and zoom in and out on a map showing my house and neighborhood in satelite photos; I can buy anything I want in the world and have it shipped to me in two days; I can have my body cryogenically frozen; I can watch a live sporting event anywhere in the world yet complain if it isn’t in HD; I can connect with hundres, thousands, of people that I have never met by typing letters on a keyboard; I can have my heart eviscerated on a weekly basis for kids I’ve never met.

We can do all these things, and more, but we can not cure Neuroblastoma?

We live in the greatest, most technologically advanced society in the history of mankind yet over the past decade the only solution has been to increase the doseage of decades old chemotherpay agents. Now kids get lethal doses of these drugs and then have their lives saved from this by receiving their stored stem cells back.
Then as they try and recover from this debilitating treatment they hope for remission. And although the upfront remission rate has increased long term survival is still dismal. Only 600 or so kids get NB each year in the US; how hard can it be to find a way to cure 600 kids?

Perhaps when I’m driving home tonight I’ll ask my car and see if I can get an answer.

Holding steady

Will & his cousin Emily on one of their imaginary Hawaii surf trips.

Dina and I brought Will & Evelyn to the Jimmy Fund today and both of them checked out just fine. Evelyn was not at all happy with the check in process and screamed bloody murder. She violently struggled to avoid having her BP done, her height and weight, and screamed as if being attacked. After the both were done we went to an exam room where our 'family oncologist' confirmed what our 'famimly pediatrician' had already told us. While less than a cm in size he could understand why we did not like the new node but it was - just like all the others - a neck node and the other 'shotty' ones were not in the supraclavicular (ie bad news) area.

Some kids are just all 'nodey' in their neck and Ev seems to just be one of those kids but it was nice to get the peace of mind anyway. Will checked out ok and his doc once again reasurred us that what we are describing sounds like the roid rage these pedi oncs get to see all the time. He has known Will forever and was shocked to hear how we described his behavior given how it is completely out of character for Will. We pulled his labs on the way out the door today and I only got a few back. His ANC was 2,500 and everything else was holding strong and looking good but his LDH did creep just above the normal range. It hasn't bee this close to 300 for about a year now so we'll continue to watch it. (the lab sheet looks confusing because Will's labs on this study have been done in VT, by VNA, and now at the JFC and the JFC and VNA have a different way to measure LDH results than VT. All we watch is 'where' in the range it is and 295 is the top of the range.)

God's people machine

Have you ever looked a picture of a beautiful white sandy beach and thought you could hear the wind blowing through the palm trees? Felt the lines of the hammock strung between two tress pressing into your back? Felt the drops of condensation from teh ice cold drink you are holding in your fingers? Sometimes a picture can do that to you based on what it is, and how you are feeling. Despite the obvious magic family moment that we captured this morning when Evelyn wanted to feed Catherine for the first time I want to ask you a question.

After looking at this photo where any of you subconciously wondering: Did I put on my sunblock today? Because this photos is shouting SPF 50 at me...

Evelyn is really and truly coming into her personality in leaps and bounds every day. I can't tell you how often she makes me smile, even from things as simple as how she walks into a room. It is amazing to see how attached she has become to Catherine, how she comes running with a furrowed brow whenever Catherine cries, how she'll say "momma bebe" to let Dina know she needs something or how she'll come running with any bottle she can get her hands on if she thinks it is needed.

This is a wonderful thing to witness and is in stark contrast to Will's reaction when Evelyn was born. The biggest differences being that Will was an only child, and he was over 3 years old, when Evelyn arrived. Evelyn's younger age certainly helps but it also comes with the disclaimer that she can't be left alone in the same zip code as Catherine. Her love for her does not come with teh inherent understanding that you can not stick you finger in the 'bebes' eye and say "EYE", or nose, or mouth. He fingers are in fact attached to her hands and you should not try to remove them.

However, these concerns are offset by her obvious affection so it is a wonderufl trade off (and sometimes amusing as well). Evelyn will occasionally take Catherine's binky and put it in her mouth. The look on her face as she does this is priceless. She tilts her head slightly to the side, looks up to the ceiling with a pensive look on her face, and robustly savors the new binkys taste as if to discern the difference between Catherine's and her own as if she was about to give a review of the differences in vintage, barrel selection, color, taste, and aroma at a vineyard somewhere north of San Francisco.

My parents came by yesterday and kidnapped Will for the day. The went to the Southwick Zoo and when the got home he had dinner at Bugaboo. On the ride home from VT last time he saw a billboard with animals on it in Boston and it was an add for Southwick and he was excited to go. He told me last night that Nana's favorite animal was the kangaroo and that he liked the monkeys. I don't remember where it was but I can remember being at a 'zoo' as a kid and one of the ape's was smoking a cigarette and throwing feces into the crowd. I am really glad that Will had a much more pleasant memory.

He was good for the day but he did have a bit of a meltdown when they left and then he blew up when he got home. Seeing Dina hold Catherine is a very easy trigger for him right now as he adjust to baby #3 so we'll just have to remain calm and supportive as everyone adjusts to the new household dynamic. I know Will is acting out in part because of Catherine but I also know that there is something wrong with him. I could sense (see?) a dramatic transformation in Will last night before bed time.

He did not swing from the angry to 'sort of happy' side of the pendulum this time. Instead he swing to a whole new position that had him keyed up, very inquisitive, very talkative, and very lively. We put Evelyn to bed together as usual but when we went into his room he was very alert and awake and running on at the mouth. Eventually I took him downstairs to 'reboot' the bedtime routine but not before he tossed few gems my way.

Will picks two books at bedtime for me to read to him (this is after I read about 5-7 books to he & Evelyn in her room). He has been trying to sneak in two books that I tell him are not good for bed time because one is a sticker book, and the other is a pop up book and we lay in bed together to read. He went into his room ahead of me and put these two on his bed last night. I laughed when I saw them and I prepared a way to read them to him while lying down. He kept telling me he could not wait to show me the 'blood eating dinosaur' as I prepared myself to see what he was talking about. The pop up book has one dinosaur that, as you open the fold is lifting his mouth from the back of an obviously dead dinosaur while a large red mass is in his mouth and continues to extend from within the torso of the dead dinosaur until the flap is fully opened.

Will said "there he is, the blood eating dinosaur!"

He had a number of questions about this before he finally asked "where do dinosaurs live?". I went on to explain how they are all gone and said that there was a special word for when an animal was gone forever and he said "I know they are EGG STINK".

After he asked me if they still live in the woods or the volcano lava (what???) I started to once again explain how the dinosaurs were gone for a very long time before man showed up. We have talked about this before and I had been waiting for the next question he dropped on me:

So where did man come from?

I told Will that was a very good question and that depending on who you ask you might get a different answer. I roughly explained the two major schools of thought on the subject (because God vs. Evolution is a very easy subject to quickly cover)before Will thought for a moment and then asked:

w:
"Does he have a machine?"
me:
"Does who have a machine?"
w:
"God. Does he have a machine to make people? Does he make everything? Does he make stuffed animals?"

It was at about this time in the converstation that I realized sleep was not coming so I grabbed my Flip to see what else he would say. At this point he was done with God & his people machine and moved on to Ice Road Truckers. Shortly after this video we did go downstairs and watch it. If you watched the most recent episode and can understand him it is pretty damned funny.



You can click this LINK to see the Truckers he names as his favorites.

Will and Evelyn both have an appointment at 10am tomorrow at the Jimmy Fund and hopefully Will's labs remain strong and we can move on from any worries over Ev.

It's only Tuesday?

Yesterdays visit to the doctor resulted in Will having those spots on his arm frozen off; Catherine being switched to a new formula; and Evelyn's swollen neck nodes being checked - by two different doctors - and deemed as nothing to be worried about. However, Will has to be seen in clinic this week (we are going to Dana Farber on Thursday instead of driving to VT) so to get even further peace of mind we are bringing Evelyn in to be seen as well. You may remember that Evelyn had been seen at Dana Farber in the past so she and Will both 'share' the same oncologist.

He understands our history and fears and has agreed to be the third doctor to review Evelyn's nodes just to get rid of that lingering doubt in our minds. As you also may - or may not - recall Will's diagnosis eventually came about after we spotted a node in the same area as Evelyn's most recent one and it is just much to uncomfortable for us to not follow up. We have completely lost the ability to trust our own 'gut' any longer so when all else fails our policy is to go overboard.

Will's difficulties with his mood continue to come and go in a very Jekyll and Hyde manner. Today's installment resulted in me getting punched in face when trying to give Will a timeout for some egregious behavior. Some of his fits have involved such absurd screaming and noises on his part that I keep waiting for the police to show up as one of our neighbors has to at least think about calling them once or twice a day. We'll keep working at it and - as suggested - try to get him to even out his swings simply by exhausting him with activity (which is easier said than done) but we'll keep at it. My parents were kidnapping Will today to bring him on some adventure.

It is hard to reconcile the past two weeks behavior with the boy that I know and love. His worst prior outbursts pale in comparison to the things he routinely now does each day and patience is in short order when sleep is scarce so it has been a time of adjustment.

Evelyn is absolutely hysterical and just cracks me up with everything she does. Poor Catherine had another difficult night last night and we hope that she can finally get comfortable in the days ahead and get some rest. I keep waiting for the weather to turn so I can shoot down to the beach at 6 when the kids get up for a few hours before work one morning but it just isn't even close to 'bad beach' weather yet but eventually we'll get there. I know that would absolutely thrill & exhaust Will and I'm sure Evelyn would have a great time (until eating 5 pounds of sand with a look on her face like 'why does this taste so bad?' while still eating it. She is nuts).

The website host for this site was having some issues that have since been resolved so you may have missed a post or two below depending on how you come to this site.

Bed car

This blurry camera phone picture was shared only because is is oddly representative of what Will has been like from the steroids. He is either unrecognizable to me in his behavior or he is twitching, bouncing, and moving around so quickly that he would be hard to capture in frame. This was from Will's new favorite activity of a particular brand of Skee Ball called Scat Cats.

As I made reference to in an earlier post Will is expressing a new dislike for the drive up, and back, to Vermont. I believe that this is related to the switch in cars for this trip (it is about 1,500 miles per cycle of chemo so I'd rather put them on my car). For our next trip back up I'll switch back to Dina's truck and we will see if that improves things for him. We want to ensure that he remains 'happy' with the prospects of repeated trips to Vermont because otherwise it could be a rather unpleasant experience for everyone. I got a peek at this potential outcome on our ride home and want to ensure that we can avoid this for Will at any/all costs.

We started talking about selling 'my stinky' car on the ride home and I asked him what he'd like to replace it with. He said he wanted a car with a bed in it so I started laughing. I then went on to explain to Will how they do have 'bed cars' that are collectively know as "Winnebago's". I explained the general concept and he thought that this was just wonderful and said that we should get one! I started telling him how these vehicles not only had beds but multiple TVs, a refrigerator, stove, sink, microwave, a bathroom with shower, a kitchen table, etc... and his mind was pretty well blown away. He asked if I had ever had one so I had to explain how it isn't a very practical vehicle for driving to school or work.

I told him that although I had never owned a Winnebago I had rented one with some friends once and that it was pretty cool but very hard to drive. I had to laugh when thinking of when we did rent one while also thinking just how indestructible 'teens' and 'young adults' think they are.

A bunch of us rented one to go tailgating at a college football game the year after we graduated. We all got up in the morning when my friend noticed that the carbon monoxide detector had been disabled and asked if anyone knew what happened.

One of our friends said:

"Yeah, I woke up in the middle of the night because that alarm was going off so I got up and pulled out the batteries".

There must have at least six of us sleeping in that thing and it is a wonder we all aren't dead.

Looking back now it is a wonder most of us weren't dead 10 times over. I can now finally understand why my parents were always so worried as the difference between 'nothing' and 'catastrophe' is razor thin and completely hidden from view to kids as they live their lives dancing on top of it oblivious to what this does to their parents.

I can not recall precisely when I crossed the dividing line and stopped being oblivious to the inherent danger in so many of the choices we make as kids/teens/20 somethingers but having a wife and children certainly helped me realize that my feet were firmly planted on my current side of that line. Today I did the most dangerous thing I have done in a long time by not wearing a rain coat to work.

Dina has an appointment at 3pm today with ALL THREE kids at the pediatrician.

Will has a few spots on his arm we want to have looked at/removed.

Evelyn still has swollen nodes up and down her neck that bother us and we want looked at - yet again.

Catherine is very uncomfortable and doesn't sleep very well at night so we are getting her looked at and may be changing what she eats (no more pizza and buffalo wings for Catherine).

I'm looking forward to hearing how that visit went for Dina.

Up 3lbs

This picture was from our last visit as I did not take any pictures this time.

Will's labs from this week looked good as well as his vitals but you will notice an increase in weight from 58 to 61.1 pounds which is an all time high for him. His last chemo had him not eating, vomiting a lot, losing weight and exhibiting what most people would consider 'traditional' chemo side effects. This time around he is not having any of those issues and it seems that he may not be having any side effects from the 'chemo' at all.

Instead?

The chemo is prepared with an agent called Cremophor like other taxanes. This 'additive' can cause severe or even deadly side effects (breathing?) so to prevent these issues it was found that giving premeds of a steroid 12 hours, and then 6 hours, before IV administration of this chemo reduces the chances of this happening. So Will has had three dose of TPI-287 for his first cycle meaning that on 6 occasions he has taken 2.5mg of dexamethasone in a 14 days span or so. In addition to some of the things we can blame on this & all that is happening in his life he just has not been himself. He did get to bed just fine last night and today he seems a bit better. He is eating, his not vomiting, and he remains strong so that is great.

He is starting to dislike his rides up and down to VT so I think I'll have to start taking the truck again as I think his drive issues are 'bomb' related as he isn't as comfortable in my car.

Dex

Dex, originally uploaded by Will's_Dad.

Ev got up at 5:30 today but as you can see she was in great spirits.

Will and I left the house at 6:30am this morning and finished up at clinic just after 2. Will actually fell asleep from the benadryl and woke up just as his chemo was finishing up.

He went for a swim and then we met Sydney and her mom and her big sis Bailee at..........you guessed it if you guessed Pizza Putt!!!!

He had a GREAT time with Syd and I am now trying to get him to bed (in vt). I spoke with the oncologist today who was covering clinic and most of what we saw this week from Will (other than his mouth) sounds like it is from the 'roids he is taking. We will head back in the am.

Will asked if Ev could come when we were leaving which was great. We will all come up next time

A "How to" manual

A year ago at this time we were preparing for a family vacation, Evelyn was about 8 months old, and Will was on about month 12 of ABT-751 after finishing up cycle 18 of that therapy. Our week down the Cape was interrupted by visits with Dana Farber and a trip to Vermont to figure out what to do next after scans showed that Will has progressed on ABT with a 1cm nodule.

Since then?

Will has experienced:

-5 or 6 CT & MIBG scans
-5 or 6 bone marrow biopsies
-10 cycles of Vinblastine and Rapamycin that required 30 clinic visits for infusions of vinblastine
-2 cycles of Velcade and oral cytoxan
-Started his first cycle of TPI-287 in Vermont
-Finished his 2nd year or pre-school
-Made his Make a Wish trip to Disney
-Saw his mom get pregnant again and the arrival of another baby sister
-Had to leave the only hospital and doctor he really ever new
-Made the Tomorrow Fund at Hasbro in RI his new clinic
-Left Hasbro and made the Floating Hospital at Tufts his new clinic
-Left Tufts and *finally*- chose to make Vermont Children's Hospital his clinic (albeit 225 miles from home)
-Switched bedrooms (to accommodate his 2 sisters sharing the bigger bedroom)

In the past 3 weeks Will has:
-Finished up pre-school
-His new sister arrived
-His mom's recovering from a c & having her time divided
-A new person, Lauren, has showed up to help out
-We sent him to camp
-He and I leave all this change and spend at least 1 night a week alone in VT
-He has started a new chemotherapy (and is only the 4th kid ever to get this experimental drug, the first ever at this dose, so who knows what to expect here)
-The front porch has been ripped off and is being replaced
-It rains seemingly ever day
-He is tired
-He has a mouth sore that just cropped up

Since it is apparent that change is rather common these past 12 months I highlight all of these things - and in particular the past three weeks - when trying to sort out what behavioral issues are chemo related, which ones are 'my world is turning upside down' related, and which ones are a combination of both.

We can only control certain variables (for example, Catherine isn't going anywhere and chemo has to continue to stay on board) so we'll work to normalize as many other things as we can. It is important for us to distinguish between all of these factors and potential causes for a number of reasons.

I'd hate to discipline Will for behavior that is caused by a painful mouth sore, pain, or nausea just as much as I'd hate to NOT discipline him simply for acting out and being fresh.

When you factor in the sleep deprivation and some generalized stress I'm like a living, breathing, and bumbling real life version of a "How to" manual titled:

"How to be an inconsistent dad!"

It will all sort itself out in a few weeks or months but for now it is sadly just a little unfair to the kids and Dina. This unfortunately has happened from time to time. When life has me a bit outmatched I just have to remind myself to adapt and get back in rhythm my new version of reality.

VNA just left our house after drawing Will's labs which means we can skip that hour or so in clinic tomorrow and - if all is well - get right down to the business of infusing drugs.

Sleeping half the day away

Will wearing Evelyn's favorite hat.

Last night Will logged 12 hours of sleep - roughly 8pm to 8am - and was still a bit tired when he got up. We'll see what his LABS look like when VNA pulls them from his chest tomorrow but I'm going to guess his sleep pattern, lethargy, and crankiness are chemo fatigue side effect related as opposed to chemo low blood count related. I managed, after another insane meltdown, to get him to walk down to camp but he ended up not going and requested going home to put on his PJ's and taking a nap - at 9am.

Although tired he did not really want a nap. He was just having some rather intense anxiety about going to camp and he said he'd rather stay home and play with Evelyn and his toys. He's not quite right so we'll revisit camp later this summer as this is not a battle worth fighting at this time since the entire point of camp is for him to have fun.

Due to the fact that there are three kids scheduled to be getting TPI-287 in clinic on Friday we have altered our schedule. We normally would go up Thursday night for chemo first thing in the morning but this week we'll be getting it in the afternoon. Therefore Will and I are going to drive up Friday morning and not return home until sometime Saturday afternoon. I have to say I am looking forward to having the next week off as I have had my fill of Pizza Putt and interstate 89.

Santa, side effects, and broken dreams

Here is Will after finishing up in clinic last week and as you can see he was wearing his Cow shirt from the farm. His skin is so pale he looks like Boo Radley so I am going to have to keep him outside 12 hours a day to see if we can get any color on his face. I've been waiting for just the right day to take him to the beach but it hasn't worked out quite yet.

Last Thursday night when Will and I arrived at the Ronald McDonald house he could not be bothered meeting Rhonda's family. He was extremely anxious to get up to his room so instead of saying our hello's we rushed up there. Just as soon as we were in the room he wanted to go back downstairs but not before springing a little surprise on me. He had packed his new Power Ranger costume and wanted to put it on before going downstairs. Luckily Rhonda always has her camera at the ready and I got these pictures below from her via Facebook.

Will sporting his new suit



Will 'finally' relenting and sitting still for 10 seconds for this picture.



So I was really looking forward to taking Will to camp again today for a number of reasons. First, it is a really fun thing to do that is something usually reserved for the stay at home parent and I enjoy getting to do it. Second, I like having Will exposed to new social situations, kids, and places. And finally today is three weeks post c-section for Dina and it is her first day without help at home while I go to work. I was glad that from 9 until 1:30pm that Will would be at camp.

What happened? Will had a meltdown this morning and did not want to go to camp.

I told him "Fine, then I am bringing Evelyn". I put the camp T-shirt on Evelyn and said goodbye and he quickly changed his tune and said he wanted to go. Then he ripped the t-shirt off, threw it on the ground, and began stomping on it saying that he would 'Never. Go. To. Camp. Again. Ever." where each period marks a stamp of the foot on his t-shirt. Evelyn thought this was funny and began marching/stamping her feet as well. This see-saw of going and not going continued a few more times until finally he had a nuclear meltdown and I had to go to work. I've seen him like this on maybe two or three other occasions (one time when he needed to have his port accessed) but I have to say it is not his usual M.O. so we'll have to watch him.

Dina told me it carried on for quite some time after I left so we gave him some zofran and Tylenol and she put Will in his room and told him to come out when he calmed down. He slept for 11+ hours last night which is unlike him so we'll just have to see how he is over the next 24 hours or so. It may be the chemo, it may be that "CAMPS IS BORING" as he exclaimed over and over today - I doubt it - or it may just be a 4.5 year old adjusting to something different and new kids. He had issues like this (not as over the top though) last year.

In any event I was a bit saddened by this turn of events when I got on the train but quickly reminded myself to 'knock it off'. I don't really ever 'allow' Will to have any bad days because I fear if we do it will turn into a bad cycle. He has cancer and if we want we can find an excuse every day, every hour, to let some unacceptable behavior slide. Or to let him eat whatever he wants. Or let his manners go missing.

But we have two responsibilities for Will that we can not neglect.

1. We have to be great advocates for his care to ensure that he stays alive
2. We have to be parents that raise him just like any other kid without letting his cancer become a crutch or an excuse that WE use to be lazy parents.

If we are successful in job #1 and he continues to survive and thrive yet fail in job #2 I'll certainly take that trade off. However, we owe it to Will to not let him down on either front.

Below is a picture of what the TPI-287 Will had poured into him last Friday looked like.


Going back to yesterday's post for one moment I wanted to point out that was in fact Maple Syrup on Will's lab report. He was eating and dripping so I used the report as the napkin bridge between the bedside table and Will to prevent the syrupy mess from getting on the sheets. Since the first person to get this right did NOT include their contact information or name the prize goes to Auntie Anne but if the other person really would like a horrible drawing then by all means email me (willlaceysdad@gmail.com) and I'll send you one.

That brings me to my next point as yet another very generous person from Braintree Massachusetts has volunteered to completely build a new Friends of Will website (you know since the current one is absolutely TERRIBLE). Once this is complete I promise that we will in fact have a proper online store where you can buy as much Friends of Will Junk as you can stand!

Last night I decided that since Will LOVES to paint so much that we'll add some of his stretched canvass work to the online store where you can either purchase some random blobs of paint or you can request something for Will to draw as well. Now keep in mind that whatever you request will actually be what I ask Will to paint but that does not mean that it will resemble in any shape, form, color, or fashion what you actually get in the mail. However, I promise you that it WILL be the inspiration behind whatever you get. I mean...come on...the kids is four years old what do you expect?

Anyway, we'll be sure and keep you updated on the new site launch and then when the store is up and running. It should be great and I'm excited for the help.

As always, we'll cover any costs and all proceeds - every damn penny - Will go to the amazing Dr. Sholler and her team because they do nothing all day and all night but work on ways to keep my son - and kids like him - alive and I think that this is the absolute LEAST we can do to help her.

Will has a very action packed, fun filled, "Friends of Will" filled day ahead of him on Saturday June 27th. First, Friends of Will are going to be marching in the 4th of July parade that finishes at the high school. In addition FOW is having a location at the high school field all day long.

Later in the afternoon Will is going to head down to Westerly RI for the Will-A-Thon.

In typing this I just had a horrible flashback to the one time I marched in a parade that - oddly enough - also finished up at the high school.

It was October of 1989 and the sophomore class of BHS had an entry in the homecoming day float called something like "Christmas in October".

Why would I remember this when I can barely to remember to comb my hair before leaving the house?

Two reasons.

1. I somehow ended up dressed up in a Santa suit and walking behind the float while carrying a sack full of candy
2. It was unseasonably warm on that mid-October day to the tune of (I want to say) 80+ degrees.

It was like walking underneath an enormous magnifying glass on a hot sunny day while wearing a sheep as a hat - and who hasn't done that?

There was also the added benefit of countless kids staring at you in awe. All of these kids created a real problem since I could not pull off the fake beard. I wanted to take it off and stick my face in a puddle, however, it would have been incredibly unfair.

Why?

Because nothing ruins the magic of a Santa moment for a little kid like seeing the sweaty red pimply face of a high school kid emerge from underneath a white beard only to be submerged in a dirty puddle at the side of the road.

Instead?

I soldiered on and those kids got to experience the magic of waving to Santa and maybe even being lucky enough to catch - and eat - a sweaty tootsie roll that Santa tossed into the crowd while staggering around like the town drunk behind a flat bed with a plastic Christmas tree on it.

Grab today by the lapels and then beat it about the head and shoulders

Will in clinic last Friday tired and goofy from premeds.

This photo was taken just before"Yellow Pants Jenny" pulled off a dramatic and amazing feat on Friday as she somehow tracked down two waffles for Will - one frozen one toasted - after all cafeterias stopped serving breakfast and Will was having a "I want waffles meltdown" while hooked up to his IV pole. He loves to have '1 frozen and 1 toasted' and this saved the day for me.

First off, I would be remiss if I did not wish everyone a very happy - yet belated - Flag Day everyone.

Yesterday we did not have a proper celebration but I did eat steak cooked on a grill and had a beer with a friend so technically I call that a celebration.

Below is a picture of the print out of Will's lab results last Friday that I had to throw out. I will mail an original piece of "Will Lacey artwork" to the first person to correclty guess what ended up on these lab results that made me throw them away last Friday in clinic.




I got up with Will & Evelyn today and played for a while before coming to work. The biggest difference today was that before heading to the train I was able to walk Will less than 100 yards down the street to his first week of summer camp. The church down the end of the road has a preschool called Magic Years that Will would have gone to under ‘normal’ circumstances the past two years. However, this is his second summer attending the week long camps and it is so great to be able to walk him there.

I remember bringing Will last year and he was a bit apprehensive as it was a new place with new kids – many of whom knew each other from the preschool. I’d hang around by the play area until he gave me the OK to leave. After a while he was more comfortable and he would do a few things (climb up a slide and then jump off) and I could tell he was fine. When I dropped him down there today the difference from last year was striking and the first thing he did was that jump from the slide. The routine and memory of kids is something that I find so striking at times.

Will seemed a bit moon faced when we returned from Vermont this time. Dina was shocked at how bloated his face looked and he is taking steroids but we’ll watch it. He had a few minor stomach issues this weekend but nothing dramatic and otherwise seemed OK if not a bit tired and cranky at times. (Perhaps he was still tired from sleeping on the couch/ottoman on Thursday night? Look how big his feet are by the way.)



Catherine has been developing some very distressing habits the past few days. She cries uncontrollably for no reason, she seem uncomfortable, she fusses a lot, and she does not like to sleep. Her night time distress has a habit of waking Evelyn who cries and demands out of her crib and suddenly a three bedroom home seems plenty big as four of us are ‘sleeping’ in one room. Will has been great about all the noise and sleeping rather well although at times saying he did not sleep well because Catherine was crying. I’m just glad he doesn’t wake up crying and demanding to sleep in our bed as well. Although at one point last night I have a very vague and foggy recollection of stripping a wet bed and then putting on new sheets and a comforter.

As part of the insanity at the house we have adopted a new bedtime routine to try and keep disruptions to a minimum. This involves putting Will & Ev to bed at the same time and the kids seem to like it better (at least Ev does). On Saturday night I put them up to bed and my parents sat at the house with Catherine while Dina and I got out for a little bit. It was funny because we really haven’t talked at all and we basically caught up on the past 2 ½ weeks including all sorts of medical stuff that would normally NEVER wait this long (like scan results for instance).
Note: For anyone wondering why Flow is performed on Will’s marrow take a read of this abstract.


Friday is Will’s last infusion for this cycle and then we have 1 week off before having to head up to VT again to start cycle 2.

On Saturday afternoon Aunty Kim came up with Emily and Will had a great time playing. They both had their power ranger suits on and at one point I was pushing them on a swing in the backyard. Apparently it was a rocket ship and they were taking it to Mars. When they came in for a landing the quickly disembarked the rocket ship and headed over to the “Mars Hammock”. They were playing on the Mars hammock when I heard Will ask:

“Emily, do you like Jupiter?”

She of course did like Jupiter so they went back over to the rocket, flew to Jupiter, and then relaxed on Jupiter’s hammock.

All this time and all this money spent on space exploration for signs of life and all we really had to do was scan the surface of the planet for hammocks? Who knew?

There were three kids in clinic last Friday and the other two kids were younger than Will. One of the kids was adorable and wearing overalls and bopping all around the place and it tugged at my heart to think “Good God he is so young, maybe Evelyn’s age, and he has no hair and is getting chemo”.

It then dawned on me that Will was probably a year younger than this kid when he was diagnosed and I was slightly dumbfounded when forced to contemplate what we have had to do to his body for the last 4+ years to keep him alive.

Here is a video of Will getting to pull the needle from his own chest. It is quite unremarkable so don't fear that you will see blood or faint if you are easily made queasy.




Dina and I were talking on Saturday night about Nathan and I just got this post in my feed reader from his mom.

There is an absolutely adorable boy named Ethan who I recently came to know via his web page. I was incredibly saddened to read of how quickly things changed for him and his parents lost their little cowboy on Friday. If you pray then I please ask you to do so for this family.

Every day these kids lose this battle, these families lose their children, and it is a terribly brutal reminder for me to cherish each day and to be thankful for how fortunate we truly are.

Intensity

Will sits on the stairs for his time outs and Evelyn's hat & coat were there for the time out just before this picture. He thought it would be funny - and he was right - if he came from his time out wearing Ev's hat & coat.

Everything went well yesterday and we were on the road after grabbing lunch. We got to meet Sydney & her family which was great and her and her sister are the most adorable kids ever. Will slept well last night and seems his usual crazy self this morning. Catherine is a fussy night owl still and Ev was in our bed again last night. I keep looking around for the elephants, trapeze artists, three rings, and a giant tent over our heads.

Will's final CT

Will's final MIBG

Will's labs

While his scans are stable there is one sentence in the final MIBG report that I have enjoyed reading over and over again:

 The focus of increased activity at the left thoracic inlet is again seen, although the intensity has diminished since the last examination

Should be interesting

Should be interesting, originally uploaded by Will's_Dad.

Will was up until midnight last night. How do I know? He kept waking me up telling me "I can't sleep" and the last one I recall was 5 minutes shy of today.

When I tried to wake him at 3 for his meds he was out cold and when I was done he was awake. He tossed and turned for another hour before finally asking me if he could sleep on the couch.

I just took this picture.....are you kidding?

The poor guy is going to be wiped out today and I am curious to see how his premed dose of benadryl goes today. I suspect he still will refuse to sleep.

Mr. Blah blah

After about 110 years, give or take, our front porch is finally being fully replaced. When it was being torn down you could see that the supports holding up the front of the porch by the stairs were actually debarked tree trunks. Lets' hope this one can last at least 20% as long as the old one.

What is really interesting is that, like Will almost three years ago, Evelyn is as fascinated and enthralled by construction as Will was (and still is). This makes for great entertainment during the day and makes me wish I was extraordinarily wealthy so that I could:

A. Fund Dr. Sholler and cure neuroblastoma
B. Have things built and then deconstructed all day long in front of my house whilst having a large hole dug and then refilled in with a backhoe in the backyard.

Evelyn got up at 4:30 this morning and after a failed attempt of bringing her into our bed we went downstairs at 5. She could see and hear D feeding the "beebee" and this is the only thing nearly as fascinating than a porch being torn down to Evelyn. A few minutes after coming down I could hear Catherine crying so I went up to grab her since sleeplessness loves company. I then did something I have not done in quite some time.

I stuck Catherine in her seat and carried her and Ev (in their PJ's) out to Dina's truck and went for a drive for a good hour. Of course being 5:30 or so I first went to the Dunkin Donuts drive thru and bought 4 large coffees. I then went to the gas station to fill up for the ride to VT from work later today and then just cruised around Braintree. I found myself on a few streets I'd never been on before, I was shocked/horrified at the size of the addition at the Mall (did the town know how big that was really going to be?), and I finished one of my coffees before finally returning home. Will is still asleep upstairs as he was up late again last night.

He is such a contrarian. Last night he was telling me how he loves the Yankees and hoped that they would win because he wanted to annoy me. I ignored him so that he would stop so he started saying how he loved the Canadiens too so I told him he'd have to pack a bag and move out. He thought that was funny.

We then watched the most absurd show in television history called Wipeout. He remembers watching it before last year and it really is about as stupid as television gets. Yet we were both laughing...go figure!

We have a three bedroom 1.5 bath house and there are three woman and two 'boys' living here. What is more alarming is that I now have two daughters and I am absolutely ill equipped to raise girls.

Why?

I have no idea how to play with them. I just took this picture two minutes ago of my daughter 'playing' with two screwdrivers as she was 'fixing' Catherine's swing. And I thought this was OK. Evelyn, like Will, also likes to wrestle and rough house and while there is now a 'tea set' in the house I'm going to have to work a little harder at this.



Catherine is a great baby and is well. She still likes to sleep most soundly from about 5 or 6 p.m. until about midnight but she is getting better. Will seems rather unfazed by Catherine's presence and Evelyn couldn't be happier so that is god news on the new sibling front. Poor Molly is resigned to her fate as the 4th banana but is sleeping happily on the floor next to Catherine right now which is nice. I think she is attempting to curry favor with Catherine early in an attempt to cut off the tail & ear tugging phase.
(Question: Curry favor? Is that right? I do not believe I have ever spoken or typed that expression before and it seems wrong. )


I just had to take & post this picture. Catherine just started to cry so Ev came out with a look of concern and gave Catherine her doll "Mr. Blah blah" (which actually was Will's before Ev took it with Will's blessing and she sleep with every night. It is her 'blankie').

How awesome is Evelyn?

Just the facts please

Will in clinic last Friday waiting for his last blood draw

I have created another blog to track all of the information specific to Will's experience on the TPI-287 study that he is enrolled in at the Vermont Cancer Center. I know I read some kids sites to try and figure out 'how' it is going when they enroll in a specific trial. I also know that some people visit this site for the very same reason and probably find it equally difficult to sort through 1,500 work blog posts about farm animals, my obsession with beer, and the excruciatingly painful detail I use to explain such things as making toast or tying my shoes.

Therefore, since I already track the data myself I have attempted to create a comprehensive spreadsheet and what I'll do is still share the info here as I always have but also create a "TPI ONLY" zone on this new blog as well. We'll see how it goes but I think it would be great if anyone else (anyone???) would like for me to give them a my blank sheet to update (anonymously) their TPI experience as well so that other neuroblastoma (and medulloblastoma) families can read all about it.

(NOTE: What would be REALLY great is if someone just did the this full time for all the relapsed/refractory NB studies by creating an input spreadsheet and just having the caregivers fill it out anonymously. The, someone much more talented and skilled than I am could present that data in a really cool manner on a website with shiny colors, bars, and graphs.)

I'll pack up my bag tonight and then head into work with my car in the morning. Sometime tomorrow afternoon my dad is going to drive Will into Boston where I'll meet them and we'll head up to the Ronald McDonald House in Burlington. We are staying there tomorrow night and then we'll head over to clinic for our 8:30am appointment and then head home a few hours later.

Will continues to seem just like his old self so we are hoping that continues. Last night he and Ev did not end up going to sleep until sometime around 10pm after a few failed attempts. This was right after I gave Dina a sanctimonious speech about how we were implementing rigid bedtimes for the kids since we needed a more rigid routine with three kids in the house. The next thing you know it is 9:30 and I'm upstairs trying to get Evelyn off of Will's bed as they decided to start wrestling! Oh well...maybe tonight.

Will & Ev's new best friend Lauren took them to the Museum of Science this morning and yesterday they went to Plaster fun time where Evelyn decided to see what primer tastes like! She is quite insane.

Dina is continuing her slow and steady recovery and is getting frustrated with the remaining physical limitations as she struggles to not do all the things that her mind is telling her that need to get done. When I got home last night Will was in his new blue Power Ranger suit! It was a really 'cool' one and I am so thankful for it's arrival. In case you had forgotten the one he had been wearing was uncomfortable to look at given how tight it was. I often wondered how he managed to breath...never mind play...in that costume.

Below is Will before I loaded him into the car after his scans last week. He is out for a while for scans and marrows so he is very dopey when he wakes up in recovery. Last week I stuffed him in the cart with all the various food items and quickly wheeled him out to the car. The new hospital cafeteria doesn't have hot dogs (WHAT?) but after passing on a cheeseburger and grilled cheese he did eat a Rice Krispie treat which was odd because I don't even know why I bought it for him in the first place.

Good news - I can drink freely...the bad news? My home is surrounded by maple trees

Will has seemed pretty much like himself since last Friday's infusion of chemo. Today he seems, perhaps, to be a little tired but hed was up much too late last night.

Care to guess why?

Thanks to some quick thinking by Dina our home DVR is now recording the new season of "Ice Road Truckers" and Will is oddly obsessed with this show. Between this show, the "Deadliest Catch" and his love of Vermont I'm thinkin we may live to close to the equator for Will's liking.

We'll watchin him over the next few days to see if his energy level is operating at it's normal fever pitch.

So I finally went to the allergist today to see if I am in fact allergic to beer. I spoke with the doctor and she found it highly unlikely that I would be allergic to beer. She theorized a more likely scenario is an underlying environmental allergy (dust mites for example) and that when I drink alcohol the the normal process of what alcohol does exacerbates the underlying issue and makes it seem that beer is the cause.

She recomended that I try a nasal spray and have a test done on my arms to look for any environmental allergies. It turns out that I am apparently allergice to a number of trees (Maple, ash, and a few others) as well as ragweed. I'll go back in July for further testing to see what else I may be allergic to.

What does this mean?

It means that Sierra Nevada in Chico California is no longer going to see a decrease in sales from it's Northeast operations since I am not allergic to beer! Our family was really due for some good news and while a complete response to one of these chemotherapy agents we keep pouring into Will is what we are looking for we'll take any small victories we can get!

I have barely spoken with Dina since we left the hospital with Catherine as it is 'go go go' all the time at home. Life is just very busy - and thoroughly exhausting - right now and the fact that our usual night to go out and talk when Will's budy Tara comes to the house is Thursday isn't helping since Will and I leave for VT on Thursday night. I think we are going to move that to Wednesday nights so I look forward to next Wednesday and hearing how things are going for Dina! (note: I'm only half joking...we tried to talk at dinner last night and had to laugh as there is simply no time for us to communicate. It is so completely absurd that it is funny!)

Will is patient # 4 in a Phase 1 Trial of TPI 287 and temozolomide in neuroblastoma

On Saturday Will went for his early morning dip in the pool that ran longer than expected so our packing/departure from the hotel was delayed. However, I was unable to convince him to delay our trip to the farm for another week so we ended up getting there at around lunch time. To say that he had a good time would be a tremendous understatement.

The picture below was taken on the wagon/tractor ride from the welcome center at Shelburne Farms out to the farm barn. There were lambs, goats, chickens, cows, pigs, alpacas, horses, and all manner of things to catch Will's interest. He was really interested in the chickens and he could not wait to milk the cow. We chased the chickens around for a while as Will wanted to 'pet one' and eventually I had to pick one up for him. That was a 'first' for me as the closest I ever get to 'livestock' or 'chicken' is at the grocery store. I was rather surprised at how soft their feathers turned out to be.

Will was full of questions and the staff was so great. This is an activity that is perfectly suited and set up for a kid his age and I'm sure he'll ask to go back again and again and again. However, I find that for as often as we'll be going up it is not as if we have a ton of 'down time' to do anything other than what we are there for. For example, we'll drive up this Thursday night after work and eat dinner before going to bed. In the morning we'll shoot right over for labs followed by chemo and then it is on the road to get home to beat rush hour in the city. Since 60% of our family - plus the dog - does not make this trip it isn't the kind of place where we'll be lounging about looking for things to do.



Our families single handed support of the greater Burlington tourist economy - and path to financial ruin - continued as we stopped at the gift store on the way out to buy gifts for Dina, Evelyn, Catherine, and Will along with some 'raw' milk cheddar cheese. Will bought himself a blue Shelburne Farms T-shirt with a cow on the front and started to take off his shirt in the gift store to put it on. He then proceeded to start eating a block of cheese on the ride home before I put a stop to it on I-89.

The last thing you need 24 hours after your 4 year old takes an experimental chemo at a dose never given to a child before is for him to pound back a block of Vermont cheddar cheese. When we got home it was late and Evelyn was all out of sorts and Will was tired and it ended up being a late night where my patience was at a minimum. Not the sort of homecoming I had hoped for as Evelyn finally fell asleep shortly before midnight and I ended up yelling at Will at bedtime. When he awoke Sunday the first thing he said was "Ahh..I feel much better after getting some sleep" followed by "why were you mad at me and hurting my feelings last night?"

Uggh.



Another first for me was yesterday when I put on a 'baby bjorn' (picture that and try not to laugh) with Catherine in it as I played kickball against Will and tried to also keep Evelyn entertained in the swing while preventing Molly from popping the ball. Later Will and I took Evelyn to the store for supplies and she had a meltdown the entire time. She was still out of sorts today and I hope she gets back into a routine before I am forced to jump out of the attic window after lighting myself on fire. On the ride home from the store Will chugged a bottle of water and then said he felt like he was going to get sick. We pulled over and he did the whole 'hands on knees bend over to puke' thing but ended up spitting a bit and saying he was OK. He seemed fine otherwise so I'm chalking that up to the water he guzzled down 10 times faster than normal.

I have a hard time believing that two weeks ago Catherine wasn't even born when looking back at what has transpired since she arrived in our home. Dina is still recovering and is battling that line of "I feel good" and "overdoing it" as she approaches two weeks post surgery. She and my mom brought Catherine to the doctor today and she is doing well and they'll go back on Thursday with Evelyn for her MMR vaccination. I don't remember if I posted it here but we had to cancel last weeks shot as Ev's temp was 99.2 and they wanted to wait.

Will's bone marrow tests came back 'clear of NB' as they always have. This was not the flow cytometry results which have shown minimal residual disease in the past (not sure if that is even being run) but the traditional stain that is run.



And finally, for anyone reading this because you are curious about TPI-287 I have created a spreadsheet to track his experience with this trial. If you think there is anything else I should add then please post a comment with yoru suggestions. I haven't fully updated the spreadsheet yet but I'll have it updated by the time we leave on Thursday.

I will be adding to it and tweaking it as we move along but you can view it HERE.

I'll put a link to it in the sidebar on the right of this page as well.

========================

A Phase 1 Trial of TPI 287 as a Single Agent and in Combination with Temozolomide in Patients with Refractory or Recurrent Neuroblastoma or Medulloblastoma
Principle Investigator
Giselle Sholler, M.D.
Pediatric Hematology-Oncology
Vermont Cancer Center at UVM College of Medicine
Vermont Children's Hospital

This study is currently recruiting patients.

Rationale
This Phase I trial is designed to evaluate the safety of TPI 287 in children with neuroblastoma and medulloblastoma.

Purpose
The purpose of this research study is to evaluate a new investigational drug (TPI 287) for neuroblastoma and medulloblastoma both alone and in combination with temozolomide (a currently approved drug). An investigational drug is one that has not yet been approved by the Food and Drug Administration. This investigational drug is called TPI 287. This study will look at the safety and tolerability of TPI 287 both alone and in combination with temozolomide, and look to establish a safe dose of this agent. The study will also look at the tumor's response to these drugs, but this is not the primary objective of this study.

Targeted Patients
Relapsed and Refractory Neuroblastoma and Medulloblastoma

Eligibility

Inclusion Criteria:

Disease Status: Refractory or first or multiple relapsed neuroblastoma, or medulloblastoma that has relapsed after, or is refractory to, a chemotherapy-containing treatment regimen.
Measurable disease, including at least one of the following: Measurable tumor by CT or MRI.
Patients must be age >12 months and diagnosed before the age of 21;
Life expectancy must be more than 3 months
Current disease state must be one for which there is currently no known curative therapy
Lansky Play Score must be more than 30 and/or ECOG performance status must be 0 to 2
For patients with medulloblastoma receiving steroids, the dose must be stable (i.e. not increasing) for at least one week before starting study
Patients without bone marrow metastases must have an ANC > 750/μl and platelet count >50,000/μl
Adequate liver function must be demonstrated, defined as:
a. Total bilirubin <= 1.5 x upper limit of normal (ULN) for age AND
b. SGPT (ALT) < 10 x upper limit of normal (ULN) for age
A negative urine pregnancy test is required for female participants of child bearing potential (>=13 years of age or after the onset of menses)
Patients may have received microtubulin inhibitors and/or temozolomide during previous therapies.
Exclusion Criteria:

Patients who have received any chemotherapy administered within the last 21 days
Patients who have received radiotherapy within the last 30 days.
Patients who have received myeloablative therapy within the previous 3 months
Patients receiving anti-tumor therapy for their disease or any investigational drug concurrently
Patients with serious infection or a life-threatening illness (unrelated to tumor), or active, serious infections requiring IV antibiotic therapy within 4 weeks prior to screening
Any other medical condition, including malabsorption syndromes, mental illness or substance abuse, deemed by the Investigator to be likely to interfere with the interpretation of the results or which would interfere with a patient's ability to sign or the legal guardian's ability to sign the informed consent, and patient's ability to cooperate and participate in the study
Summary of Treatment Plan
You will be given an oral steroid (may also be given by IV) 12 hours and 6 hours prior to the first TPI 287 dose. TPI 287 will be started in clinic on Day 1 and given through a vein. The medicine will be given on Day 1, Day 8, and Day 15 of each 28 day cycle, for as long as you are on this study, unless you have side effects from the medicine or your tumor gets worse after adding in the temozolomide.

TPI 287 will be given to you in six individual cycles of therapy. Each cycle of therapy lasts about 28 days. During the first two cycles, you will receive TPI 287 by itself, on Day 1, Day 8 and Day 15 of the cycles. At the end of these cycles, you will undergo testing [laboratory tests, bone marrow test, and radiologic evaluations (MIBG scan {if done at screening}, CT scans and/or MRI) which were done at screening] to assess the response of the tumor.

You will then start cycle 3. During cycle 3 you will receive the TPI 287 the same as in cycle 1 and 2, but in cycle 3 you will also receive Temozolomide orally (by mouth) on Days 1 through 5 of the 28 day cycle.

You may receive up to 4 cycles in total of TPI 287 + Temozolomide plus the two cycles of TPI 287 alone, which equals a total of six cycles.

You must to be seen at the study institution clinic, Fletcher Allen Health Care, during all TPI-287 administration times. All required radiology scans (MIBG's and MRI/CT's), must be done at the study institution, Fletcher Allen Health Care. If Fletcher Allen Health Care is not your home institution, all other care (excluding the previously mentioned) can be done at your home institution.

Contact
For information about enrolling in the study, contact:
Genevieve Bergendahl, R.N.
Senior Research Nurse Coordinator
Vermont Cancer Center
HSRF 326C
149 Beaumont Avenue
Burlington, VT 05401
Phone: (802) 656-4511
Fax: (802) 656-2140
Genevieve.Bergendahl@uvm.edu

"I want to stay here forever...for a little bit" - Will

So...the 50th cycle of chemo has officially begun.

Will showed up at clinic today and just was not himself all day long. For the most part his clinic time here has been 30 minutes at best and when the needle needs to stay in his chest for too long he gets a bit unhappy. Also, he HATES to sleep (he thinks he'll miss something) so when he got a whopping dose of benadryl as a premed and was already tired (7 hours of sleep last night) he started fighting sleep and somehow won the battle and stayed awake while looking like he had been shot out of a muffler with his crazy long hair and sleepy eyes (I'd imagine this is how I look most of the time).

I couldn't really tell if he was tired, angry, or off from drug reasons today but all day long he was sort of a stranger to me as I can usually keep him happy, smiling, and laughing. I found my answer about 'what' was going on seconds after he had the needle removed. Here we are after leaving clinic in the parking garage on level 'LL' as always.



NOTE:
-Yes I am 35.
-Yes that is my car.
-Yes it is a Buick.
-Yes I am the only person in America under 62 who voluntarily purchased a new Buick - on purpose.
-Yes, very sadly, I now have to get rid of it to buy a minivan. Isn't that irony? I'm 35 and upset to get a minivan not because it is a minivan but because I have to get rid of my Buick.
-I'm in love with large American sedans and we currently own two GM vehicles and the bankruptcy was a sad day for me.

I've said this place is fantastic a million times but I really can't say it enough. From his doc spending time with him, the child life specialist trying to keep him happy, and his nurse taking great care of him it really is a model for how all pediatric oncology practices SHOULD be. From our experience in multiple places it isn't that the people are great it is just that the places are too crowded, to busy, or too understaffed to do their jobs the way they'd love to. And while busy the past three days they have not failed to do that for us.

Will loves is here and told me "I want to stay here forever...for a little bit".

We went to Pizza Putt - again - for the third night in a row and I officially hate that place. It would not be a goldmine since all parents would go insane from their kids endlessly requesting to go there. However, we had a great time.

As I said, I was worried about his behavior at clinic today but he was himself after we left and went crazy tonight. He kept playing games and we ended up getting a pizza to go and then had a 'picnic' for dinner.

We are in Burlington Vermont, probably one of the most beautiful cities in America.

And where did we have our picnic?

On a bird poop stained picnic table under a tree outside of a corrugated steel building on a road fittingly named Airport Parkway as we were just on the other side of a fence and road from the airport runway.

And oddly enough it was great!

It was a beautiful night, Will was in a great mood, and as we were leaving we heard a noise that made me thing a fighter jet might be taking off (thanks Bill Troup for the tip). We parked on the side of the road at the end of the runway and sure enough two fighter jets took off away from us and the roar of their engines shook our bodies and car and filled Will with roars of gleeful laughter. All in all a GREAT night. He is now asleep and tomorrow we are going for a swim, packing up, getting a gallon of coffee, heading for the farm, and then going home.

There was a special on TV with Obama tonight and Will suddenly asked:

"Did Molly vote for John McCain with a bunch of other dogs at the dog voting place?"

Between laughing at the completely out of left field question and the fact that Will thinks there is a place that dogs vote I also watched him closely to make sure he wasn't having some sort of episode. After 10 seconds it was clear he just thought that dogs voted too.

Will's hair has stopped falling out since we stopped his last therapy and he is not bald but just has crazy thin hair. It is especially noticeable when wet or with bed head as seen in the photo from the post just before this one. I've owed him a proper trim for a while so it looks like Will chose wisely in avoided the shaved head that my dad, brother, and self had sported. It was just as well as I'll continue to keep my hair short as I love not having to comb it (yes I am that lazy).

As of bedtime tonight Will seemed perfectly fine but I'll be sure to chronicle, in excruciating detail, every thing I see or think I see for anyone else considering this drug. One interesting thing is that of the 3 kids still on this study - out of the 4 who have enrolled in it - all had the same NB doctor at the same hospital in Boston and yet I never met either of these kids until clinic yesterday and today.

Kids are funny in how the are simply unable to grasp certain concepts. I finally figured out on this trip what "Vermont" means to Will.

Care to take a guess?

If you guessed the Sheraton Burlington Hotel and Conference Center then you guessed correctly!

I have been working on the concept of the entire state (80+ miles of the drive) being Vermont but he isn't getting it. I finally have him 'getting' that this place is the Sheraton (he calls it Sheffif) but it is a work in progress.

I am wiped out and going to bed so forgive this posts larger than normal level of typos, spelling mistakes, and grammatical disasters.

The big Five- 0

The big Five- 0, originally uploaded by Will's_Dad.

Here is Will taking his meds at 3 this morning.

We are in clinic and Will is currently receiving his TPI-287. It is an iv infusion over 1 hour and once complete there will just be blood draws at specific intervals until about 5.

He is not his usual happy self today and is ready to leave after 3 days in the hospital. However, he is looking forward to the farm tomorrow.

3 kids and none of them want to sleep.

It is 10:30 an Will is still awake after leaving the room at the crack of dawn. I'm exhausted and can only imagine where he get his energy as I'm wiped out. Have to be at clinic at 8am and wake him up at 3am for meds so I'm hoping he'll nod off soon.

I just talked to Dina and Catherine was up and fussing and Evelyn had a hard time going down tonight. I just saw the above photo for the first time and it struck me that I actually DO have three kids.

Today we went to the pool minutes after getting up and I made Will wear his shirt from yesterday with his bathing suit to walk down to the pool. He was at first reluctant telling me that it was 'dirty' but finally relented and put it on when I told him it would just get wet and go in back in the dirty pile but he couldn't walk around the hotel without a shirt. As he put it on he told me that 'this t-shirt smells like yesterday'.

Done for the day - stable scans again

We started off in the pool, drove to the farm where we had an aborted trip, then headed to clinic. We are now back in the room after having to go to Friendly's again for - you guessed it - a hot dog, waffle fries, water, and an ice cream cone.

We just popped in quickly as we are headed back to - you guessed it - Pizza Putt. Due to todays aborted trip we are headed to Shelburne Farms first thing Saturday morning before heading home as Will was so very upset about leaving that I had to promise we'd return. The funny thing about Friendlys was also that we got the same exact seat.

We have to be in clinic tomorrow at 8 am and Will gets a dose of steroids tonight at 9pm and again at 3am but otherwise he can eat and drink as he likes.

Scans today showed stable disease and we also did a marrow draw for study entry.

"So are we going to get candy now?" - Will

Will is asleep in bed on his pillow, with his blue blanket keeping him warm, and his stuffed animals Jack, Shark, Pluto, and Mickey all about his head. We were slightly slow in getting out the door this AM so we ended up driving directly to the hospital for his appointment. He had his port accessed and then we went down to Nuclear Medicine for his MIBG injection. Afterward I removed the needle from his port (we'll have to put in another one tomorrow but he wanted to go swimming) and headed to the hotel to check in. We went for a quick dip before heading to Friendlys for dinner (Will got a hot dog, waffle fries, water, and a chocolate ice cream sundae with hot fudge, whipped cream, and a cherry on top). After dinner we headed over to Pizza Putt for the first time ever for some indoor mini golf and arcade games. (Note: this place would be an absolute 24/7 gold mine anywhere south of Boston.)

He had a good day and he is once again wearing sweatpants under all his clothes again as he weighs 58.8 pounds. It is amazing what a 5-8 pound swing in weight does to Will.

To say it was strange to leave my 8 day old daughter at home with my wife - 8 days removed from her third c-section - is the understatement of all understatements. Dina has help to get her through the next few days but that is of little consequence to the primal part of my brain that likes to eat rare steak and is intrinsically certain that I don't belong 225 miles away from my newborn daughter and wife.

In addition to this unusual set of circumstances another unique situations is at play. Will has not scanned for a while and since his last scans he has done a few more cycles of Vinblastine & Rapamycin and then - without scanning - we jumped onto a whole other off label drug combo of Velcade & Cytoxan. What is interesting is that unlike prior scans - where we are usually begging and hoping for stable improvement, or stable disease, so that we can keep doing whatever therapy we had been on we find ourselves somewhere else this time. We are scanning tomorrow and then on Friday Will is getting his 50th cycle of chemotherapy in the form of a one hour infusion of TPI-287. It completely changes the complexion of scan week to know that if he is hopefully stable - or unfortunately has progressed - we are still doing the same plan in place for Friday regardless. Of course, if his tumor somehow has responded (it has not responded to any of the prior 47 cycles) then THAT would change things but that is not really an option on the table for consideration.

Tomorrow Will is NPO until his 12:30 arrival and 1:30 knockout. So this means I have about 5.5 hours where he'll be wanting to eat and awake but unable to do so. In the past we have entertained him in the pool and at the aquarium but tomorrow we are going to try an early morning swim followed by a visit HERE. It should be fun and Will is looking forward to it as he has been obsessed lately with buying seeds and planting stuff. That is probably my fault but since he wants to plant a garden and I don't even know how to grow grass I could use any tips I can get.

Here is a summary of the Neuroblastoma Research symposium in Vermont by Max's dad whose charity - Max's Ring of Fire - just raised 10k doing a touch a truck in San Diego.

Finally, here is a 'movie' of some videos from today. A few notes before you watch it.

1. I just blindly held the camera with one hand while driving to capture Will eating the apple. He was singing back there and I wanted to see what was up.
2. How funny was Will at the VT visitor center? After asking about the map and looking around he finally was done humoring me and asked 'so are we going to get candy now?" I had to get get my wallet in the car to get him something.