Impromptu celebration

When I pulled up to my house last night Dina was sitting with Evelyn in a rocking chair on our front porch and Will had Molly's porch leash and he was tossing it over the railing while pretending it was a fishing pole. He was so excited to see me as he had a surprise for me in the kitchen. I let him go into the kitchen first, I walked in with my eyes closed, and then opened them to Will screaming "SURPISE" and discovered that apparently it was my birthday. At first I thought I had perhaps blacked out for a 4 month period and it was in fact November before quickly realizing that this was a surprise July birthday party!

There was a balloon on my chair, napkins all around, and as you can see above a wonderful peeled banana with candles sticking out of the top and just waiting to be lit! I sat down, lit the candles, and we all sang a rousing rendition of Happy July Birthday day to you before making a wish (guess what that was) and blowing out the candles. I then turned to Dina and asked where my presents were in a sarcastic and joking manner but then Will ran out of the room to get them. He returned with two large gift bags stuffed with a bunch of his toys that served as my presents. After opening these we then took turns pretending the balloon was a piñata and smacking it with a giant plastic carrot that is very much like a wiffle ball bat.

It was the best July birthday I've ever had...

Will’s energy seems to be ‘a bit’ off but he seems more like he needs to take a nap one day to catch up than lacking energy from his lower crit.

Evelyn is now cruising around with her crawling and our poor dog Molly is now tortured by both kids. It is so funny and cute to see her crawling and hear her babbling excitedly as she gets ever closer to the object she is fixated on reaching. As seen below, she has enjoyed playing with Will’s guitars a lot and is keeping Dina very busy.



Evelyn is now eating 'food food' after her latest check up. Dina just emailed me:
"Will and Evelyn are eating the same lunch. Cheese and turkey, pretty funny."

Since chemo and clinic day are now on Wednesdays this means that Will hasn't been going to Yoga class. He was asking about it so Dina is taking Will to Yoga Kim's class this afternoon down in Marshfield and he is excited to be going again (as is Kim). After all of my complaining about sleep I finally got a good nights worth last night and it is remarkable what a difference that can make as I nearly resemble a functioning human being today! So hooray for small miracles and 'near human' status.

If you pray, please do so for Katie and her family.

Numbers

Will left Providence after getting his chemotherapy and is headed to meet Ev at Aunty Kim and Uncle Mike's house. Nana and Granpa were with Will & Dina again today. The labs drawn by VNA at home yesterday are as follows:

WBC 6.7
HGB 10
HCT 26.8
PLT 250
ANC 1862
AST 34
ALT 34

His AST/ALT (liver functin) are slowly creeping up which we don't want.

This is as low as his HCT has been since May of 2007 just before we started ABT-751. This is close to transfusion level so we'll watch his color and energy this week.

Will hasn't required a blood or platelet transfusion since the spring of 2007 which is pretty remarkable but it would seem that some anonymous donors blood will be poured into him at some point. (that reminds me that I need to go donate)

His platelets have gone from 212 to 233 to 250 over the past 2 weeks.

Since I'm giving numbers here are Evelyn's from her 9 month check up this week:

22 pounds (92%) 30.25 inches (99%) Head (96%)....

The other day Will was using a tape measure and we took some family wrist and ankle measurements. It turns out that Will has bigger ankles than Dina and the same sized writs. I guess it is safe to say we make big kids.

Dina and I were talking last night as she and I are both struggling right now with all of this change and uncertainty. Try as we might there is nothing you can do to out run this situation. You simply must do the best you can, but it does take a toll. It certainly impacts your ability to multi task and lets just say I'm glad that I'm not a brain surgeon nor do I operate any heavy machinery otherwise people would be getting hurt.

The physical manifestations of this mental effort is quite interesting. I just feel so old and brittle....sort of like a giant walking ramen noodle. All I want to do is sleep but sleeping 14 hours a day isn't an option. Therefore, I'll just keep typing until my head doesn't feel so 'thanksgiving dinner' full and that (and the occasional bottle of wine) will hopefully keep me relatively sane.

Bravery and sacrifice

In the past we have been fortunate that pretty much every therapy that Will started has managed to keep him stable. However, it has been quite some time since he has had a new spot appear so you can drive yourself insane going back and forth.

At the end of the day we picked what we felt was the best option and we'll do two cycles of this therapy. The last day of the second cycle actually falls on August 24th which happens to be Will's 4th birthday. We will then head up to Vermont to scan again and I need to focus on that fact and move on.

The fact that Will is trying a completely unknown therapy, for an incurable disease, after his last scans showed disease progression is unsettling. Further enhancing this sense of unease is that we are now receiving our care in the Northwest and Southeast corners of New England instead of our primary hospital that we are so familiar with.

As I have said in the past it can take a while to get your sea legs under you when starting a new therapy. I guess I'm learning that starting a new therapy at two new hospitals is akin to getting your sea legs amidst a violent storm (speaking of sea legs, Will really enjoys watching both "the Deadliest Catch" and "Ice Road Truckers"...this cracks me up.)

The more I watch those shows and the powerful show "Hopkins" the more I wish there was a 'documentary show' like those that tracked relapsed neuroblastoma kids. If someone set up in Vermont and chronicled the mind numbing stories of all the kids from all over the country (and world) that end up in Burlington VT for care it would be amazing. It would allow so many people a glimpse at some of the most extraordinarily brave children that I could ever imagine existing.

In spite of the fact that all the Texans were killed during the Battle of the Alamo I can't help but think of the Vermont Cancer Center as a 'pediatric Alamo' of sorts. There were 187 men inside the Alamo and after a siege of 13 days by 6,000 soldiers the end result isn't why this battle is remembered.

Why the battle is remembered is because of the incredible strength, sacrifice, and bravery exhibited by those men. That bravery is what created such a lasting legacy and why "Remember the Alamo" is a phrase every American knows over 170 years later.

Such bravery is still being exhibited today in a different form and on a different battlefield and, I hope, with a dramatically different outcome.

The sacrifices being made by these families to save their kids lives are so incredibly overwhelming to me at times. I can't help but find such bravery and sacrifice to be both humbling and inspiring and feel that this should be remembered 170 years from now as well.

Crawling & baseball

On Friday night Evelyn crawled for the first time and things are about to get very interesting around the house with this development. On Saturday I took Will to the Sox/Yankees game thanks to a generous ticket donation. The donor, Mike, lives in Las Vegas and is actually organizing a golf tournament to raise money for MagicWater in October. Mike met my brother at a Sox game last October and later learned about Will & this website. To offer tickets to a game was kind enough but I continue to be humbled by people who are so willing to help. Especially in a case like this where I haven't even met the person willing to raise money for these kids. Amazing.

Will is going with Evelyn today for her 9 month checkup at the doctor and he has Monday/Tuesday 'off' of drugs. He does the rapamycin Wed-Sun and these two days are just his daily celebrex pills. Yesterday was the Jimmy Fund family summer party and Will had a good time. They have games, rides, amusements, food, music, swimming and lots of other fun things for the kids. Will had a good time last year and this year he spent nearly the whole day riding around and around on a kiddie race car ride.

We are scheduled to have Brockton VNA at our house tomorrow to draw Will's labs and then on Wednesday it is back to Providence for his infusion. Thus far he has tolerated this therapy very well and I try very hard to focus on the next set of scans and not worry if this cocktail is keeping his disease from running rampant throughout his body. Every pain, ache, or complaint causes more worry than it should. Yesterday I had to carry him on my shoulders from the car down to the party and this is nothing new. He always reguests that I carry him, but now it makes me wonder if he is having pain from runaway disease.

Poor taste

I watched a news report on CNN.com saying that eating 1 hot dog a day increases your risk of getting cancer by 21%. This is due to the fact that hot dogs are processed meat and the news anchor went on to say that you could subsitute the word 'hot dog' with 1.5 ounces of any processed meat.

People believe that the nitrates in processed meats are to blame. She went on further to say that people should save eating processed meats for 'special occasions'. For example, having a slice of ham at the holidays or the occasional hot dog at a ball game.

Never in a billion years would I think that anyone would ever combine "processed meat" and "special occasion" in the same sentence, but there you have it.

So if this information is in fact true then I hope that in 50 or 60 years that Will curses me during his colonoscopy since he'll need to be screened annually because I fed him too many hot dogs.

There is a groupe called the Cancer Project that is a 501c whose stated mission is:

"The Cancer Project is America’s leading organization working for cancer prevention and survival through a better understanding of cancer causes, particularly nutrition. Through research, education, and advocacy, we are saving lives."

They have an ad, that you can watch below, that for some reason really rubs me the wrong way.

Perhaps it's because I know kids like this, and a lot younger, who actually have cancer and whose parents have to make these impossible decisions.

Perhaps it is because this ad makes it seem like kids don't actually get cancer.

Perhaps it is because every 16 hours a child with neuroblastoma dies and this seems to somehow cheapen their struggle.

Or perhaps it rubs me the wrong way because I had too much wine at dinner last night and am hypersentive about this today.

In any case, I guess I'm curious if this is truly in poor taste or I just had too much wine.

Catchin' bad guys

Another billboard for MagicWater was posted on the Southeast expressway, this one headed south. This is just before South Bay on the right hand side when heading out of the city.

There was reports of a tornado yesterday when Will was in Rhode Island and I half expected this story to show a picture of Will instead of a funnel cloud.

Will went to the Tomorrow Fund Clinic yesterday and received his infusion of chemo. They ironed out all the details yesterday so that going forward we'll get labs done by VNA the day before. This way when Dina gets to RI with Will his labs will already be done and they can order up his vinblastine. After their clinc visit they went back to Aunty Kim's house where Evelyn had been hanging out. A bad storm rolled through just as Uncle Mike was heading off to work, he is a police officer, and Will wanted to know where his lights were on his car. He had an undercover car and when pulling out of the garage he put on the lights and siren for a moment so that Will could see it.

Will was very excited and started shouting to Emily..."Uncle Mike's got his siren on!" and then was waving goodbye and saying "Bye uncle Mike, go and catch some bad guys and make it stop raining". Police officers, even great experienced ones, can do many things but I have not met one yet who is capable of stopping the rain.

Will enjoyed meeting his 'newest' doctor yesterday as he had a few magic tricks to keep Will entertained and promised next week to break something in half. Will seems very excited about this, which is nice.

Molly accompanied Will & I on our walk to camp today and he seemed none the worse from wear after yesterdays infusion. He was up at 6:30 this morning and was full of energy and life and we played with his race cars and he ate his breakfast. He felt he was getting a special treat last night when he got home since he was able to get 2 1/2 Rapamune pills instead of the standard 1.

You'd have thought we were letting him eat cupcakes.

Lucas

As I mentioned one time in the past, I have a large number of bookmarks of children whose stories I follow. Some of these bookmarks have been edited so that the date these children were killed by this disease has been added after their name. I occasionally, when I feel prepared, go in and 'visit' these families. Sometimes you are devasted to see the impact the loss has had on these families, other times you gain hope to see that they have somehow started finding joy again.

Today, I visited the page for Lucas Tran that I have not visited for a while. I have always found the entries to be so insightful, honest, and so open. I was absolutely leveled by what I found today.

The photo essay done by Lucas's uncle is extraordinarily powerful and brutally honest. The post from Lucas's site is below:

"My only sibling, Tommy (we call him Thong at home), who was a mechanical engineer turned professional photographer, created a story of Lucas' life from the beautiful photos he took (minus the last picture which was taken by Chinh). Tommy lived with us for about a year before Kira arrived and frequently visited afterward. He was here shortly after Lucas was born, shortly after diagnosis, during surgery in NY, spent most of the summer in NY with us last year, and cut his trip in Africa short when I told him Lucas was dying. Lucas was very fond of Tommy and gave him an endearing nickname that he made up--Dodi (dough-dee). In addition to hiding from Tommy and being chased by him, Lucas loved playing with Tommy's tripod, camera with an enormous lens and detached flash, pda phone, and stickering his suitcase. Thanks for the tribute Thong and, more importantly, for being such a big part of Lucas' life (and ours). Click here to view the photos and captions. You may need to maximize your window to see the captions. Warning: some of the photos are from the time of his death."

Documentation

Evelyn is quickly closing in on being fully mobile, and turning Will's world upside down once again. She hasn't been sleeping well lately and appears to be suffering some nightime seperation anxiety.

Will is waiting on his vinblastine but his labs from today, his first since starting this treatment, are as follows:

WBC 6.7
HGB 10.5
HCT 31.1
PLT 233
ANC 2000
AST 30 (33 last week)
ALT 34 (21 last week)

It appears that the reason Dana Farber was unable/unwilling to give Will the vinblastine is creating some procedural delays today but Dina tells me that the pharmacy, nurses, and doctors have all confirmed the dosing and he should be getting the drug soon. No pharmacist wants to draw up a bag of chemo without having a published reference source for the dose being given to ensure it isn't too much. I don't blame them.

Unlike the IV push at VT, Will is going to get the same dose of drugs but it will be hung in a bag and infused over 10 minutes and he already has received his zofran for nausea.

Yesterday Evelyn felt slightly warm and Dina took her temp (99) and this awoke "Dr. Will". He went and got his play medical kit and took Evelyn's blood pressure, he gave her a shot, and then he drew her labs which he "was going to send to Dr. Sid". He then looked in her ears and "gave her wax".

Will was 26 kilos and 112 cm (57lbs/44 inches) and his dose of VBL is 6mg/m2 so today's dose is 5.4.

When I got home last night I walked out back and found Will driving his Indy car. His car is a tricycle and he was wearing that ridiculous plastic police helmet with the visor pulled down and squishing his nose. The starting line is by the gate to the driveway, he drive up the walkway, takes a right up a slight incline onto the patio where he circles the table and chairs before careening back down the slope while gaining speed for the hard left turn back towards the start/finish line. He completes the race by crashing into the fence.

We did this a few times and eventually I pulled a chair over by Evelyn so I could push her swing and pet Molly. Will would do his laps and we would cheer loudly and root him on. After a few laps he started his role playing:

He said to me: "you are William Edward Lacey's mechanic and Molly and Evelyn are my pit crew. They are wearing helmets".

Soon, after each race he would intentionally crash, tilting his tricycle on its side and collapsing next to it and asking for help. We'd bring the car into the pits and, just like in his new favorite movie; he would sit in his car and tell me what happened.

"First, I went around the corner and hit a bump, then a screw fell off, and then I blew a tire and stick got caught in my back tire." At this point he would get up from his car and pretend to take off driving gloves, place them in his helmet, and then angrily toss the helmet and gloves to the ground while acting angry before turning back and saying "I am angry...the cars is smoking!".

I would then have to calm him down before claiming to have fixed the engine before repeating the whole process, with my pit crew of Molly and Evelyn, after his next 'big race'. We did this until Dina came out to tell us dinner was ready and I convinced Will to come inside by saying we'd talk strategy for the next big race over dinner.

Before we 'get dead'

Will had a great time in camp yesterday and then when he arrived home he had another friend to play with. One of Dina's friends from school lives in California and was back in town with her daughter Sloan. They had a great time playing yesterday and Will told me all about it last night.

Will and Dina have been making deserts all week out of the cookbook "Deceptively Delicious". Today after camp they are making doughnuts.

One completely absurd link for today is a Wiki page talking about heterochromia. Will acquired heterochromia (different colored eyes) from the location of his tumor when he developed Horner's syndrome.

"A unilateral lack of sympathetic stimulation in childhood interferes with melanin pigmentation of the melanocytes in the superficial stroma of the iris, resulting in heterochromia." - NEJM

On Sunday afternoon you could tell a thunderstorm was fast approaching and I ran out in the backyard to do something before it started. Just as I got out into the backyard a few rain drops started to fall and Will quickly appeared in the yard next to me, sans any footwear. I quickly told him to hurry up back inside before the rain started and he asked how I knew it was going to rain. I said "do you hear the thunder?" and he said yes and that:

"we'd better get back inside before we get dead!"

I asked him to repeat himself without trying to make a big deal about it and he repeated the same sentiment so I just brushed it off and made a big deal about getting inside before we got wet and because he knows he needs to wear shoes outside. I was struck by this statement for a few reasons.

Where did he learn this concept of death or dead? We've never covered it.
How did he learn that a lighting strike could kill you? I certainly never covered that.

Death has always been the uninvited guest in our house that smokes cigarettes, forgets to put the seat up, eats all our food, keeps us up at night, and sullies all of our best laid plans. However, until that utterance it was never a word that I had heard Will use.

We are slowly transitioning into a new phase where our 3'8" 56 pound 'baby' is about to be 4 years old and new conversations and explanations are going to be required. This was simply a reminder that although diagnosed at 7 months of age...his far older, wiser, and inquisitive than the infant and toddler that has fought this disease and now as a pre-school student he’ll be requiring more concrete answers in order to quench his inquisitive nature.

Will Power, camp, and a new clinic

Will starts his second week of 'summer camp' this week. The camp is located at the pre-school that is run out of the church 75 yards from our front porch. He'll obviously be missing camp on Wednesday as Dina is going to take the kids to Hasbro Children's hospital and their pediatric oncology clinic.

Let's just say that this post in May about training Will to take pills turned out to be a very good thing indeed. Will takes a 100mg capsule of Celebrex with breakfast and dinner every day. On the day he gets the IV push of vinblatine he takes 2.5 rapamycin pills and then for the next 4 days he takes one. He gets these pills at 6:30 every night.

He really enjoys the rapamycin...he says that they "Taste GOOD!" but he does not make the same claims about his Celebrex capsules. The rapa looks like a Chicklet (the gum) and apparently tastes like one too. I'll be curious to see what his labs look like this week and, of course, going forward. Last Tuesday’s labs in VT:

WBC 6.89
HGB 11.8
HCT 34.1
PLT 212
ANC 2610

His electrolytes, AST/ALT/BUN/CR were all normal but I don't have the values. The LDH range for normal is very different in their lab so they must use a different value for measurement but it was at 709 in a range of 425-975 of normal.

Will did a sleepover at Dina's sister’s house on Friday night in Cranston and he had the best time. The above photo was taken on Saturday night when the drove up to drop Will off. He awoke on Sunday bored and asking for a 'friend' to play with and apparently neither Evelyn nor myself qualified. Hopefully he'll find what he needs at camp today.

There was an Indy race on TV that Will was watching…I’m unsure how it ended up on the TV….and something rather extraordinary happened.

At the time the race was on the driver in 3rd place was #8, his car was yellow and green, and his name was (no I am not making this up) Will Power.

Given that Will’s favorite color is yellow and the fact that we sold “Will-Power!” bracelets (thanks Caroline) to raise money for research this was a very exciting turn of events. Will was still rooting for the Andretti family but he certainly came around to “Mr. Power’s” team. It really is quite an unusual streak of events that led to this realization.

Speaking of racing, I took Will to the "go-karts" at Starland one day (at Noon) this past week when it was unbearably hot and humid. We drove around and around and around a number of times and then played some mini-golf before driving around and around a few more times before finally heading home. He had SUCH a great time...it is quite amazing how much he enjoys it. I'm sure we'll be back once a week going forward.

Rhody to the rescue

Will has now received caner therapy in Massachusetts, Pennsylvania, and Vermont. On Wednesday Will is going to add a third New England state to the mix when we roll 42 miles south to Providence Rhode Island where Will is going to be getting his vinblastine infusions going forward. Hooray for a closer location!

This shaves about 5 hours and 30 minutes off of the round trip commute for his weekly 4 second IV push of chemo. Hasbro Children's hospital in Providence is about 10 minutes away from Dina's sisters house so this is wildly MORE convenient than weekly commutes to VT.

Infusion anyone?

I took this picture on the cape when Will was running from the pool to the lake with Molly. I noticed his footsteps on the stairs and on the dock and snapped a picture.

After discussion amongst three attending physicians at Dana Farber/The Jimmy Fund it was determined that no one felt comfortable enough with the regimen Will was receiving to administer the vinblastine IV push at their institution.

So Will is a man with a plan...but no local infusion bed in which to enact it.

Looks like we'll be making weekly trips to Vermont for a 4 second IV push for the rest of the summer. We scan after 2 cycles the week of 8/25. So it is either VT or we find another local infusion location willing to help. We can not let inconvenience change our treatment so we'll simply make the best of it. There are worse places to spend a day each week in the summer than northern Vermont.

Dirty Rat

I made Will some blueberry pancakes this morning and as I was about to drive out to get us our morning coffee fix Will gave me a time out for some reason. He took it very seriously and put 78 minutes on the microwave timer and made me sit on the front steps. I quietly snuck out the front door and as I was pulling away I spied Will on the front porch jumping up an down and making very demonstrative hand gestures and I'm sure tossing a few choice words my way.

When I arrived home he was wearing the above get up and Dina told me that Will picked up the phone and 'called' the Police on me. He told them that I escaped my time out and sped off down the street and that they had to stop my car and have me brought back for my time out. I couldn't believe the dirty rat sold me out and called the cops. He is such a rat.

Will's obsession with Indy racing can be tied to 25 minutes worth of an IMax movie that we recorded on one of the HD channels called "Super Speedway" about the Andretti family. He watches it over and over again and likes act out the driving scenes. As seen below...he has now added a beaded necklace and he likes to use this prop as if they are the earplugs the drivers always seem to pull off in disgust.

Moon landing

There is an extraordinary young woman whose family could use your support, prayers, or kind words. Katie has fought this battle bravely for many years and sadly today she is going home from the hospital for the last time.




Will's new obsession is that he no loner wants to be a soccer player when he grows up, but an "Indy" car racer. Above you can see him in full blown INDY mode. He did the best he could for the outfit...but...as you can see below.....the helmet doesn't quite qualify for Indy Safety Status due to the fact that not only does it not fit, but it is cracked and made of cheap plastic.

Note: he did not get this from me as I don't watch racing.



Will seems utterly unfazed, unchanged, and unscathed (TILL THIS POINT) from yesterdays infusion and last nights drugs. He hasn't had any nausea, his appetite is unchanged, and he seems every bit like himself. This, of course, can change due to a cumulative effect from the drug slowly depleting his 'reserve' over time. But for now, it was nice to see that vomiting did not immediately ensue.. which was/is nice.

Will has enrolled in at least 7 different trials, two of which are biology based to test his tumor or his blood. The other 5 were clinical trials to try and prolong or save his life. This current therapy is not actually part of a clinical trial currently. It is based on some compelling preclinical data (testing in dishes and in mice) that has been extrapolated into human doses. We are able to do this trial since all 3 of these drugs are FDA approved so a prescription can be written for "off label use". Since this combination isn't part of a trial and hasn't been published with use in kids, with or without neuroblastoma, that is why Dana Farber isn't jumping up and down to infuse the vinblastine into Will. Hopefully this will happen so that when I'm back at work next week Dina isn't getting this infusion in Providence, or Vermont, or in the back of a van in Chinatown.

DRUG FDA Approval Date
Rappamune September 15, 1999
Vinblastine November 5, 1965
Celebrex December 31, 1998

The drug Will gets via IV, and had to drive to Vermont for, was FDA approved for use in humans nearly 2 years after Kennedy was assassinated and 4 years BEFORE man landed on the moon. My Dad was in Vietnam, a country until that year no one in America had ever evne heard of before, and a full 8 years and 23 days before I was even born.

This drug is as well known as any drug can be known after 43 years of FDA approved use.

The DRUG is not at issue.

It is the combination of THIS well known drug with other very well known FDA approved drugs as a cocktail for kids that is at issue at our home hospital. Well hopefully find out this week if this presents to big a hurdle for approval thus causing us to look elsewhere.

Each cycle last 21 days and involves 3 drugs:

Vinblastine - IV push on Day 1, 8, and 15
Rapamycin - 2.5 pills on Day 1, 8, 15.....1 pill days 2,3,4,5, 9,10,11,12,16,17,18 and 19
Celebrex - 100mg pill at breakfast and dinner every day

We added the Celebrex since it is an anti-inflammatory and pain reliever in place of the twice daily doses of motrin we were giving to combat neuropathy on ABT since vinblastine is in the same class of drug and also can cause neuropathy.

This regimen is an anti-agiogenic and anti -TIC (tumor inititating cell) or 'cancer stem cell" approach. Let's hope that:

1. Neuroblastoma stem cells actually exist
2. These drugs do in fact target them
3. An anti-angiogenic effect seen in mice is replicated in Will's tumor

Pancakes before chemo

Apparently Evelyn takes after Dina and her love for gossip magazines.

Will and I checked out this morning and then went in search of pancakes before chemo. We found a diner around the corner and Will told the waitress all about how he is going to race Indy cars when he grows up. She seemed concerned for his welfare.

We went to clinic at 10:15 for our 10:30 appointment and we were on our way out the door at 11. Will has crossed the 26 kilo / 57 pound threshold, most likely thanks to his large breakfast. The appoint could not possibly have been more seamless. We spoke with Dr. Sholler as Will was accessed and received his zofran and then the nurse came back in and gave Will his IV push into his port of his vinlblastine. He was de-accessed and then we were on our way..."lets hit the road Jack" as Will likes to say.

He has thus far eaten a bag of pretzels, some popcorn, a hot dog, some yogurt covered raisins and drank some milk and water. We'll give him his other meds after dinner and hope he continues to feel well.

We heard from Will's oncologist and after todays careful review they are very confident that this new spot is in fact disease progression so it is just as well that we have started a new therapy. We hope to hear back this week regarding where we will get his next vinblastine push.

Below is Will before bed last night.

Going to bed and then going home

Will has a clinic appointment at 10:15 tomorrow to start his treatment. We are going to do two cycles and then scan. WIll is going to take:

Once a week IV push of vinblastine
Starting that night; 5 nights of rapamycin
And Celebrex every day 2x's per day

The Celebrex and rapmaycin are pills we can do at home but the vinblastine is IV chemo that has to be done in clinic. Since we are doing this off label (not as part of a trial) we have had some difficulty getting the IV chemo part of this drug done at hour home hospital. Since our home hospital is 12 miles from our house and this one is 225 miles from our house this is what could be termed 'inconvenient'. This is not a unknow drug that can't be done at our home hospital. It is a very very very well known drug and it takes about 15 minutes to infuse it. Driving 7 hours round trip and spending the night in the Ronald McDonald house away from Dina and Evelyn seems a bit extreme.

However, the problem is that all of these drugs, while very well known, are not known well in combination in kids and our home hospital has policies and procedures that prevent administering drugs in this manner. We are certainly hoping that his policy can be amended as this is not the ideal weekly trip for the forseeable future and moving to VT for a weekly 15 minute infusions borders on insanity.

Will's Boston scans are being presented tomorrow at the solid tumor conference to be fully reviewed to determine if, in fact, he did progress.

What struck me like a lightning bolt on the ride up here today (my mind has been a bit SLOW lately) is that had I simply done Will's scans in Vermont last time (as I had planned) none of this would have happened. We were considering moving all of our scans up here full time but since this was the first scans "post" biopsy I talked myself into doing those scans in Boston. This was partly out of wanting to see, on the same equipment, what the excised lesion looked like after surgery. A small part was also being lazy and not wanting to come here for scans.

Had we just done the scans here we would still be doing ABT. We would not have disease progression (the scans up here DON'T show the spot) and Will would not have been kicked off study and OFF of therapy all of this time.

We will be doing all future scans here in Vermont as this current circumstance is the 3rd or 4th issue we have had and it is just time to move on. After Will gets his 15 minute infusions we'lls hit the road and try to get home before any nausea strikes him. I can only imagine being pulled over on I-89 somewhere catching Will's puke in a bucket as I get a phone calls from Will's doctor saying "radiology has determined that Will didn't progress".

In any event, we got here in about 3 hours and 20 minutes and Will was great the whole way. We went straight to the aquarium, then to the hospital to get his prescriptions filled before finally checking in here. We went for a walk and grabbed some dinner and Will had an ice cream cone. He is now in bed (awake) after 10.

I have been out of the office for a LONG time now. Our company gives you a 2 week 'sabbatical' for 10 years of service on top of your normal vacation time and that is the 2 weeks I have off now. Before that started I took 2 days to come up here for scans and then off to the cape for a week and now back up here. I've spent so much time with Will & Evelyn and it has been great. It will be a difficult adjustment for both Will & I next week when I am back at work. He is supposed to be in camp again next week, I just hope he feels well enough to go and that we can get this done.

We'll start looking at other regional pediatric oncology centers (Boston/Providence) to see if there is any other place we can get this done. I'd rather not add a 3rd place to the mix but this doesn't seem like a reasonable weekly trip and I don't want to change therapy based on travel.

VT

Will and I are headed to the ronald mcdonald house in burlington vt right now. Will starts treatment at 9 am.

Home

I took this picture after breakfast this morning out on the deck. We made it home from the cape this afternoon and we are all unpacked and the kids are in bed asleep. Will was sad to leave as he stated he would miss "HIS" pool, his lake, his canoe, his pool table, and his backyard. It was enough to make me want to list our house for sale and buy something else....

I think our dog Molly is upset as she was in her glory swimming in the lake and chasing tennis balls all around the yard. I haven't seen her this tired in quite some time.

It was very nice to get away...even if we came home a little early.

Unique

Here Will is admiring a game of pool with such a perfectly glowing smile on his face. I feel this picture really captures the joy he carries around inside of him in such a way that we haven't captured before...I hope you can see it.

Dina and I went to meet with Will's doctors today....his attending physician who has taken care of Will since he was a fellow and the neuroblastoma attending as well. First we discussed the discrepancies on Will's Boston vs. Vermont scan. I'll try to make it clear what the difference was as I understand it.

During MIBG scans you can have spots that glow that aren't cancerous areas and you rule this out by doing a CT scan. You look at the questionable glowing spots and then look in that area on the CT scan to see if their is a corresponding 'mass' on CT. What happened in Boston was that Will's MIBG scan came back as "stable". This was because the 'new' lesion was actually in an area where there has always been a faint glow on prior scans with NO CT correlate. However, the next day the CT scan found a new lesion and when the looked at the MIBG that area that was always there is in the 'same' area so it was called progression and we started down this path.

Fast forward to the Vermont fusion scan where the two images are combined in a 3D image and that scans DOES see the new spot on CT but that same spot is NOT glowing from MIBG. So this spot is NOT MIBG avid.

So, after learning of this, Boston went back to look at the scan and now there is some questions that need to be resolved.

Is this spot MIBG avid?
Is this disease progression?
Is this a new lesion that IS neuroblastoma but is NOT MIBG avid?

So, Will's scans are being reviewed again and they will be presented at the solid tumor conference that takes place on Tuesday where everyone can review and offer input. So we are once again delaying Will's therapy until NEXT Thursday until this is resolved and what sort out his treatment.

We love Will's doctors and they want nothing but the best for Will and are understandably weary of giving him a combination that is based on preclinical data. It is not that they do not think it isn't reasonable, it is that they just want to make sure that they do not harm Will by exposing him to an unknown toxicity that could derail this amazing 18+ month run we have had with a great quality of life (QOL). They offered some very reasonable objections and offered a few other suggestions for us to consider.

I just feel that Will is perfectly positioned, right now, to take a chance on an 'out of the box' therapeutic option right now. His marrow is in fantastic shape, he is strong, healthy, has great organ function and currently has 'slow' growing disease. There is really no better time than right now to take that chance.

The flip side, is that we want to continue his QOL and not take a chance and end doing more harm than good. However, from what I have seen it always appears that most people wait until it is much too late to take a 'chance' on something. When they usuially do this it is much too late already.

However, knowing this and doing something about it are two different things. I KNOW we should make an educated guess at a different therapy (either anti-angiogenic or attempt to finally FULLY differentiate his highly differentiated tumor) that has a chance at curing him with a 'relatively' low toxicity level.

If it works? FANTASTIC
If it fails? Then we go back to the more standard bag of tricks and hope we didn't do damage or lose too much ground.

How do you know what is the right thing to do?

You have to first decide are we going to try the standard stuff or something different?

And then...if you decide to try something different you have to, literally, pick your poison. Or should I say, pick your son's poison.

It is a raw deal but I think we are in a place where more than 3 years have passed without a response to therapy by using the standard bag of tricks. I think we are compelled to throw a curve at his disease for once. As the NB attending stated today, Will is very unique. I think we need a treatment just as unique in it's approach to get something done.

Monoxide leak

Things are still going well here...there must be a massive carbon monoxide leak that causes me to be in a constant state of sleepiness and feel like I don't have a care in the world. It is so extraordinarily wonderful for me to spend this much time with my family and for some reason to not be consumed with worry.


I'm on the porch right now with Will, Dina, nana Daryl, and Molly getting ready for bed and our early (Dina and I) departure to Dana Farber in the morning.

Shadowboxing the boogeyman

Dina and I will be going to Dana Farber at 8:30 on Thursday morning to figure out what, and where, we'll be starting his treatment and to hopefully sort out the differences in Will's scans. Will is continuing to have a great time and enjoy himself.

The other night he was carrying on like a crazy man and is started Evelyn on such a giggling spree, the likes we have never seen before. He kept at it and kept at it until finally, in a fit of excitement, Will asked "can I hold her?" So Dina had Will sit down and put Evelyn in his lap and that lasted for a brief few seconds before he realized what he was doing....but that was enough for me.

So, as for what we are doing next. It involves Will getting an IV infusion of Vinblastine once a week and that night he'll start 5 consecutive days of Rapamycin. The rapa is a pill he'll take at home each night before bedtime and the vinblastine is a 15 minute IV push in clinic once a week. He'll have two days off and then start again with the vinblastine and after 21 days Cycle 1 would be complete. We'll do 2 cycles of this and then do scans again to asses where we are at. I'm hoping we can squeeze stable disease and a decent quality of life out of this therapy for a while until such time as a few trials that I'd like Will to be on are actually open.

If it works to shrink his tumor? GREAT
If it works to keep him stable? GREAT
If it does either of the above with horrible side effects? Try to fix them
If his cancer progresses again or the side effects are too much? Move on to the next therapy.

We are just looking to do the best we can to pick therapies that can keep Will stable without undue toxicity (while on therapy or in the future). What good is keeping his cancer at bay, or making it go away, if we ruin his quality of life and ultimately kill him from the therapy itself? We are just trying to do the best we can to shadow box away the boogeyman until we can find a knockout punch.

Still in transition

ONE....



TWO...



THREE...



Will has been having fun swimming and 'fishing'



We have a meeting on Thursday at Dana Farber to discuss the recommendation from Vermont and to see if they can help Will in implementing this therapy. It is a combination of drugs that involves a weekly 15 minute IV push of a chemotherapy agent. They'll review the suggested drug combination and supporting data and we'll meet on Thursday to see if they can do it. Hopefully they can do it and we'll start on Friday.

We were expecting the scans in Vermont to possibly show new spots using the fusion scan and what we found instead was that the new spot seen via CT in Boston was not showing as MIBG avid in the VT scans. It is concerning for a number of reasons and VT is sending their scans down to Boston.

I hope to have a plan in place and implemented by the weekend.

Happy Birthday America

We left Wednesday morning for Vermont and we arrived home just before 9 PM last night. Will had his port accessed at the clinic by a nurse that actually had taken care of him at the Jimmy Fund when he was first diagnosed. She moved up to VT over 2 years ago and it was quite funny to see her when we arrived for our appointment. After his port was accessed we went to Nuc Med and had in MIBG injection. We then had him de-accessed so that he & I could go swimming in the hotel pool....this was the whole point of the trip in his mind. He had a noon scan on Thursday so we went into clinic and discussed what treatment Will should be doing next and agreed upon what to do.

We then got a urine sample for Will and had him accessed once again and headed for the "Comfort Zone". We met the anesthesia team and headed down the the combined CT and SPECT machine and Will had some sleep medicine pushed into his port instead of the mask and once asleep he received the contrast and anesthesia via his port as well. This means that he does not experience the pain of the MIBG needle stick that he hates, he doesn't get the mask that he sort of dislikes, and when he wakes up he does not have an IV in his hand which he hates. It also means that he gets both scans done at once so he doesn't have to go in to the hospital 3 days in a row, doesn't experience the things he dislikes the most about this experience, and doesn't have to be wrapped up like a mummy for a few hours while awake for his MIBG scan.

The only thing that didn't work out to well was that once under the scanner his bladder was VERY full of radioactive urine and they could not get a clear image of that area so they popped in a catheter, drained his bladder, and pulled it out while he was asleep. He has been extraordinarily uncomfortable while going pee since then so he is holding it in...not the best thing to do when you are trying to void the injection via your pee.

He enjoyed the experience and we tried very hard to make sure he did since we'll be going up there quite frequently. The doctor will speak with Will's oncologist about the plan we cam up with to ensure that the IV chemotherapy we require weekly for this trial can be administered at Dana Farber. If all goes well and everyone agrees then we plan on starting this next week.

In 2005, 2006, and 2007 Will and I have gone to the reading of the declaration of Independence in Boston followed by the 'parade' of drums, fifes, and guns. I was looking forward to doing this every year with Will but sadly his 'pee issues' this morning prevented us from going. Hopefully next year we'll start again.

Bowling

Here is a horrible story to start your day!

Truly hard to fathom how something like that can happen. It is simply mind boggling how many people I know would do anything in the world to simply give their kids a chance to live, to see another birthday, and then you read this.

We are heading up to Vermont tomorrow and Will has a 4pm MIBG injection...via his PORT....so we'll just put on a little EMLA and Will won't feel a thing. I think he'll be happy to find this out since he is really such a difficult stick any time he needs an IV...even when fully hydrated and unconcious.

On Thursday we'll meet with Dr. Sholler and discuss Will's treatment options before Will's CT/SPECT scan on Thursday at noon and then we'll head home. My parents are going to stay home with Evelyn for the night. Will once again requested that Dina have another baby and he wants it to be 'another Evelyn'. That was great to hear.



On Sunday we all went to a bowling alley in Quincy and discovered that it is closed on Sundays during the summer. So, we went into Dorchester to the 'Always Open' Boston Bowl for Will's first bowling experience. We used the gutter bumpers and of course we did candlepin bowling and Will had a great time. He wants to go every day.

Evelyn was very entertained to watch us and let's just say it amuses and entertains me beyond description to see how incredbily competitive Dina is when it comes to sports. It is a whole side of her personality that I have a hard time believing exists so when I see it it is quite striking.

Needless to say, she was not very happy that during the first frame of bowling she actually LOST to WILL!!!

It was a very fun time and Will enjoyed himself despite having an uncharecteristic nuclear meltdown when we left. Since that time, at about 1:30 on Sunday, he has been a 'little' off. He was sad that I was leaving for work today and I think he is having some anxiety about our trip to VT. That is part of the reason we are leaving Evelyn at home with my parents so that we can focus on Will and making sure he thoroughly enjoys his trip so that future ones do not cause him any worries.

Will asked Make a Wish to send our family (including Evelyn) and his 4 grandparents to Disney. He wants to stay in the same hotel as last time (Contemporary) because they have the monorail and we can watch the fireworks from his room and the grandparents can stay in the rooms next door!! Seriously...how funny is he? He knows EXACTLY what he wants.

This isn't a wish they can grant with such specificity...so I think we are going to book the trip ourselves so it is exactly what he wants. Also, given that we are entering a new realm of uncertainty with his treatment, it's requirements, and his side effect profile we need to remain flexible.

He and Evelyn are off to the playground with Dina right now. It is quite uncomfortable out today and I envision water in Will's future. He loves to swim and I'm thinking if he gets up at 6am again tomorrow maybe we'll shoot down to the beach first thing before we hit the road tomorrow. He loves the ocean.