I hope I know what I am doing

IMG_1259, originally uploaded by Will's_Dad.

When I arrived home last night Will and Dina were sitting on the front porch waiting for me and Will was excitedly saying "daddy home!" and came down to say hello along with Molly wagging her tail and looking for a pat on the head. It was very nice....Will then accompanied me out to the patio to cook on the grill. I made Will the obligatory hot dog and he noticed that we also had a few burgers on the grill and Will said he wanted a cheeseburger so I obliged.

He isn't a big cheeseburger or fast food guy so he does not have a lot of experience in this arena, but as seen here, once he had one on his plate he aggressively attacked it....his hot dog looked lonely on the plate as he only managed to take one bite of it.

Will has had 19 cycles of chemotherapy, two infusions of radioactive material and here we are again trying to decide what is next. I want to find a cure for Will and it just seems that you have to try new and unconventional things to do that since we have established (after 19 cycles) that traditional chemotherapy is not the answer.

However, we are about to cross a line in this fight we have not stepped over before. A line that can not be ignored can not be dismissed and that you have to think about long and hard with your wife before stepping over. This is what is causing me to lose sleep.

Even though Will has not seen a reduction in the size of his tumor, stable disease is a good thing. Up until this point he has managed to avoid bone marrow disease and any symptoms from his tumor other than Horner's syndrome. It is not ideal, but it could always be worse.

Up until this point we have tried the proven therapies for NB and by proven I mean that for some kids this has managed to shrink their tumors, eliminate them completely, or at least keep them stable. We are now at the point where all of the proven therapies have been exhausted.

We are now forced to decide between staying behind that line or boldly stepping over it.

Stay behind the line:
Realize that this is a futile effort with the odds stacked against you. Take this as gospel and make the safe and smart decision and continue using the therapy that has managed to keep his disease stable (Topo/Cyclo). In so doing, our stated goal would be to extend Will's life on this planet for as long as possible and not mess with the status quo. This is the safe route and I would have to guess that this is probably the goal of most oncologists. Don't take any chances; follow the established path to death’s door and avoid choices that will take you there via a shortcut. Hopefully, you can create stable disease for months, or even years, and focus on enjoying the time you have.

Step over the line:
Refuse to accept that Will can not be cured and continue to try new therapy in the hope that one of them will cause his tumor to shrink. The risk here is that when you go off the reservation and start trying new unproven therapies that only have shown success in preclinical data (Petri dishes and mice) you run the risk of proving that this therapy is in fact a TERRIBLE idea. In choosing this model you pray that it will work and you HOPE that your cancer does not grow like wildfire or have an unexpected side effect to the treatment like heart failure, stroke, or some other wonderful surprise. The problem here is that if it doesn't work to shrink the disease AND you lose ground you leave yourself open to a lifetime of questioning why you had to go running down the rabbit hole instead of facing the statistical facts, accepting them, and then maximizing Will's time on this planet.

Each choice has its pros and cons and neither one is right or wrong for any family. You could talk yourself into what your child would want, but he is 2 years old, what he wants is a lifetime of fireworks, hot dogs, cars, and water tables with mommy and daddy. His desire in this fight can not be gleamed from looking at his eyes, or his spirit, or his will to live. I think it is a selfish decision based on what, as parents, you can live with.

I want to cure Will and I do not think I could live with myself if we didn’t try some unconventional therapy.

We have made a choice, a VERY hard choice to make with serious potential for lifetime of self doubt and anger for choosing poorly.

You can only get this wrong once.

So where does that leave us? To figure out what unproven therapy we should try on Will. If the first decision was gut wrenching then this one is nearly impossible. You have to look at the data, the side effects, the goals of the study, and your own non-scientific bias towards what you think would work and bring all of that into a meeting with doctors and come out with a decision.

Now that we have committed to that choice we now have to look at different unproven, untested options and try to choose which one to do. Right now the list of things we have to consider is long and a moving target. Many are ruled out completely and here are some I read about last night:
-AZD2127 Orally bioavailable Antiangiogenic agent
-AABT-751 Orally bioavailable Tubulin binding agent
-Oral 5 drug regimen (Thalidomide, Celecoxib, Fenofibrate, VP16 and Cyclo
-Ixabepilone an epothilone B analog
-Irinotecan + Temozolomide
-SAHA + cis-ret
-Topotecan/Cyclo/Nifurtimox trial in Vermont
-Etc, etc, etc

It is an emotionally, physically, and spiritually draining process and it is IMPOSSIBLE to know what the right choice is. I know the right choice has been made in still seeking out a cure for Will. I am hopeful that one exists, and if so, we are lucky enough to find it before doing any harm. I am hopeful that when we finally get a plan in place that I will be able to get some sleep

No plan = No sleep

IMG_1253, originally uploaded by Will's_Dad.

We put our TV above the fireplace which looks nice and frees up space, but we can no longer have a fire, but this is not a bad thing with Will in the house. We bought a candle holder for the fireplace so that you could put this in place of the grate and if you drank enough wine maybe convince yourself that there was a fire in there.

I put the holder in front of the fireplace because I had to move some wires/speakers first and will, with his ever present cars, snapped right into action. You'll notice that not only are they all facing the same direction but he also managed to fit two cars on a few of the holders much to his delight. He and I were both very proud!

Will's labs yesterday were much improved and I feel less worry (about that anyway). I'm still unable to sleep much later than 5am as I am always awakened by my dreams. They are not bad dreams about Will, they are simply stupid dreams that are filled with anxiety or stress that wake me up in such a state that going back to sleep is futile. This morning, I was dreaming that someone was breaking into my house and car and I awoke when chasing after them telling them that I needed my swipe card to get into the garage at work. Nothing too exciting…just my brain coping with the stress by dumping it into my dreams.

This is what happens when there is no treatment plan in place. Now that I have five consent forms from five different trials printed out and ready to read I do not think these 130 pages of documents will act as much of a sleep aid.

Labs below; they are VERY exciting compared to Thursday:

WBC 5.1
Hgb 10.8
Hct 30.1
Plt 63
ANC 3450

Knee scrape

IMG_1256, originally uploaded by Will's_Dad.

Here Will is proudly displaying his first scraped knee that has ever required immediate parental medical attention. We took this prior to the application of peroxide, hence the winning smile.

He had a great day yesterday and we just got back from bringing him up to the high school since Dina did not know where to bring him at 8am tomorrow so that they can observe one of the pre-school classrooms. He starts up at a once a week early intevention pre school like class in a few weeks on Fridays.

Will's labs last Thursday looked a little low (25.8 crit 44 plts) but his white count and ANC looked okay. I'm a little worried as I thought we were out of the woods on this but we'll find out today as labs were drawn this AM. Hopefully, he'll turn the corner soon.

We meet on Thursday to discuss what to do next for Will and it has been awfully stressful these past few days. It's hard to know what to do when there are so many unproven choices to pick from. I just hope his counts recover in a timely manner so that we can start one of them, whatever it is.

Having a plan is so important for you sanity and ability to sleep/function/live and I am looking forward to that.

Complete, Partial, Stable

IMG_1239, originally uploaded by Will's_Dad.

Will is testing out his beach ball that plugs into the hose and becomes a sprinkler. After initially running around it in circles he finally starting working his way in and is see here sticking his tongue out in an attempt to drink some water.

Don't worry....we were not dehydrating him...he was once again copying Molly's behavior.

I've been scouring the internet looking for trials for Will and have to send out a thank you to TeamSam.com and Sam's dad Neil for sending along a few very interesting trials. While reading I came across this definition of tumor responses that I thought was the best definition yet that I have seen. Anyway, hope everyone has an enjoyable holiday weekend.

Complete response is the disappearance of all clinical and laboratory signs and symptoms of active disease; partial response is a 50% or greater reduction in the size of measurable lesions defined by the sum of the products of the longest perpendicular diameters of the lesions, with no new lesions or lesions increasing in size. Minor response is a 25–49% reduction in the sum of the products of the longest perpendicular diameters of one or more measurable lesions, no increase in size of any lesions, and no new lesions; stable disease is any change in tumor measurements not represented by the criteria for response or progressive disease; progressive disease is an increase of 25% or more in the sum of the products of the longest perpendicular diameters of any measurable indicator lesions compared with the smallest previous measurement or appearance of a new lesion.

Once again stable

IMG_1211, originally uploaded by Will's_Dad.

Here is a picture of Will from last weekend celebrating his $5 windfall as a result of correctly picking the winning horse.

I would like to thank everyone who was kind enough to put comments on Will's page. Since I receive an email on my blackberry whenever someone leaves a comment it was nice to get such kind gestures of support while sitting at the hospital this week, it was a welcome and warm reprieve from the stress.

Will's MIBG scan was this morning and much like the CT scan and virtually every scan we have ever had the results were stable.


Someone put in a comment saying "This is very good news right?" and I think that is a very interesting question..

Ideally, we were hoping for the disease to have shrunk via CT scan indicating that the radiation managed to kill his tumor. The other two scenarios that could have happened were stable disease or it could have grown.

Out of the three choices one is HORRIBLE, stable is good, and shrinkage would be fabulous.

Will has a cancerous tumor that has not received chemotherapy since before Christmas. In that roughly six month period he has had two infusions totaling 4 hours of a radioactive substance that required two trips to Philly and about a week or so total inpatient.

His quality of life has been fantastic, he has hair, he has no side effects and has had only two red blood cell and two platelet transfusions as a result.

So to answer you question....I guess it is great news since we have had this time. But it is only great news based on your way of looking at it. If you are looking at a goal of buying as much healthy time as possible with Will before this disease could get him then this is GREAT.

If you goal is for him to be forever cured, then this is a disappointing development but that is tempered by the fact that "we did no harm" in trying this.

So...to answer that persons question: It depends on who you ask and you may get slightly different answers. I am grateful for this time, sad it did not shrink, but still hopeful that we can managed to find a way to keep Will around.

I have not given up on a cure but to be honest I was not expecting these scans to show anything after the last ones didn't show anything dramatic. But I wouldn't have done anything differently these past six months.

Since the first six months of Will's life before diagnosis, this is the best six months of our lives as a family because MIBG therapy gave us stable disease with minimal intervention and side effects. So for that I am thankful.

In our quest to make Will part of the statistically insignificant category of refractory kids who get cured and live a full life we will forge ahead. We meet next week to discuss options and to consider what do we do now.

The scans will be forwarded to Dr Maris at CHOP and we hope to have his feedback before next weeks meeting with Will’s DFCI doctors.

CT results

Stable and unchanged

Holding my breath and turning red

IMG_0661, originally uploaded by Will's_Dad.

Today I was out of work and running around with a bunch of things to do and Will went with Nana Daryl and Papa Ed took Will to the zoo down in Rhody...he had a great time.

Up and out the door by 6:30 tomorrow for his CT scans.....I'm not sure holding my breath from now until then is going to help....but let's just hope for good news....for once.......

Labs

IMG_1005, originally uploaded by Will's_Dad.

Will's white blood count is 3.6
His crit is 30.2
His ANC is 1,656
His platelets are at 46.

His platelets are safe but low so we'll continue to watch them as this week is 8 weeks post his 2nd MIBG infusion therapy at CHOP.

Will's schedule this week:
Thursday:
7am arrival for 8am CT
3pm MIBG injection in Nuclear Medicine

Friday:
8am MIBG scan

When he is out cold for the CT scan they'll bag him for a urine sample to see what those levels are up to and draw his labs. Will's doctor indicated that waiting for his platelets to recover would most likely mean his next treatment (whatever it ends up being) will most likely need to wait a week or two.

Will is over at Nana's house today with Aunty Bridget, Tucker, and Campbell having lunch today with Nana Dary and her mom Nana Hill.

"That funny"

IMG_0763, originally uploaded by Will's_Dad.

I love this picture because for anyone who has never met Will this really sums up what he is all about. We were at Disney and we went over to Epcot so that Will could go on the Nemo ride. It was unbearably hot that day and as soon as we got outside Will spotted this large grassy area with rows of colorful flowers and proceeded to spend about 20 minutes just running and running and running.

This is what he is like, he never sits still, is in constant motion and always has a smile on his face. You just see him in full stride behind the plants because that is what he is like...always in motion, just out of reach, and not so easy to keep up with now that he is able to run fast. I'll have to drop 50 pounds and start working on wind sprints in order to keep up with him.

Will is big, he is 40 inches and about 42 pounds and he is still 3 months shy of his 3rd birthday. When kids this age are on the high end of the percentiles people sometimes expect the kids to be older than they are and think that perhaps they are slow in developing just because you expect them to do so much more than they should due to their size.

However....one thing that bothers me in terms of development and where I would want it to be is Will's Binky. I wish we could get rid of it but it gives him so much comfort at bed time and I really like it when he sleeps. I'm trying very hard to restrict it just to his bed.

I'm not really winning that battle, but honestly at this point I really need to pick my battles. In any event, Will knows I hate to see him with his Binky downstairs and he gets the biggest kick out of antagonizing me with this fact.

This morning before I left for work he came downstairs just out of the tub with a nice outfit and his wet hair parted to the side and he looked adorable. He was happy to see me and after a few minutes he was going upstairs to get Binky so that I would chase him around yelling at him to put it upstairs (literally).

So as he was walking up the stairs saying "Binky downstairs" with a slight laugh in his tone I barked out "you listen here! If you try and bring that binky downstairs you may as well go to bed because you ARE NOT to have it downstairs!”

As I firmly stated this in the most brisk and authoritative manner I could muster Will giggled slightly and said "that funny".

I guess my tough guy act needs some work.

However, Will did get Binky for a second just to joke around but kindly listened to me and put it back in bed where it belongs (for now).

The "4" I like the "4"

IMG_1083, originally uploaded by Will's_Dad.

During the horse race this weekend Will, Dina, and I had a bet on who was going to win with the winner taking home a crisp $5 bill. I asked Will what horse he wanted and he said "FOUR" so I picked 8 and Dina picked 3.

As they started loading the horses into the gate Will was excited to see that the 4 horse was wearing yellow, his favorite color. For all of you who may not remember yellow is Will's favorite color because when he is getting lab work, or chemo, or has his port accessed for any reason the very last flush he gets before he can be de-accessed is a yellow Heparin flush. He always gets so excited to see the yellow tube so he loves yellow.

When I saw this I should have got on the phone and bet the house on the 4 horse. For those of you who did not see the race the 4 and the 8 came from the back of the pack at the very end of the race and required a photo finish and the 4 won. I knew Will to be a number of talented and wonderful things but a horse handicapper was not one of them.

Scan Week Fever

IMG_1143, originally uploaded by Will's_Dad.

Scan week is here and as I had mentioned previously we have no plan in place for what takes place next. The biggest problem is that once the scans are completed and we have an idea of what is going on with his tumor we will still have to choose from a lot of options. Having options is a good thing but having to choose one is very hard.

Will's oncologist, as I mentioned, is fantastic. However, once you reach the point where we have been there is no "right" answer for an oncologist to give you regarding treatment so the decision comes down to you. It is nice to have information and guidance but since there is no known curative options it is hard for a doctor to give you advice. It is all about your own choices, bias, quality of life issues, and what you think will work which is hysterical.

I'm a public school kid who went to college at our state school and chose my major of Sociology because Psych required a stats class and I hate math. More importantly, this major coincidentally allowed me to take classes only after 11:15am and my electives were chosen so that I would have Friday's and Monday's off so I could have four days in a row to devote time to my extracurricular pursuit of being a slob.

With that as my educational background I'm supposed to figure out what treatment will work for my son in spite of the fact that people a thousand times more brilliant than I could ever hope to be have devoted a lifetime of work in pursuit of this and have failed? I may as well bust out the dart board or pick the treatment options based on which one has the most vowels in it's name as opposed to relying on my own scientific conclusions based on reading a phase I trial.

However, in the end you simply will have to go with 'your gut' because if you do not do this then you'll have regrets and regrets are no good.

I thoroughly enjoyed the book "Blink" by Malcolm Gladwell because it sums up how I "trust" and rely upon those snap instantaneous judgments of situations/people/scenarios etc...

I'm afraid I'll have to continue following that inner decision making guide that nudges you in one direction or another since to ignore it is usually a bad idea in spite of the fact that nothing has gone right for us in 2+ years.

Anyway, as I have mentioned before, scan week fever usually creates an extraordinary amount of anxiety which I try to leave here so I expect a lot of nonsensical typing to take place this week.

Please take a moment to think of John and Catherine London as they lost their amazingly strong 4 year old daughter Penelope to NB on Saturday morning.

This disease has no mercy.

Insurmountable

The more time we spend fighting this disease the more heartbreak I am exposed to. I use Internet Explorer and when you go to "Favorites" on your menu you see your bookmarked websites and then you see "Folders" that contain items. I have about six different kinds of folders storing different things relating to work and then I have one folder titled "NB". It is here that I keep my web links to clinical trials, information about hospitals, my GMAIL account that I use for the NB mailing list, as well as more depressing information about hospice care and end of life decisions, as well as fundraising and everything else about NB.

This folder has gotten very large, too large, with too many bookmarks. I've reached the point where I need to separate it into multiple subfolders. That fact is one that I if I dwelled on could in fact be depressing.

I keep links to all of the kids whose stories I follow on their parent’s websites. Some parents share these links on their websites so that you can follow other kid’s battles and pray for them, some of those parents even link to Will's site.

I have not done this yet because that list of kids I have is pretty big, and every week one of those kids dies. I now have a bunch of websites and a terrifying number of those kids are no longer here. Yet, it is impossible for me to EVER delete those names from my folder. I don’t ever want to forget their struggle.

It is, at times, unbearable to read of the seemingly constant pain, suffering, and loss. I don't always feel comfortable reading it and have decided that I have in fact inflicted enough pain, suffering, and heartache on the people I love by sharing my heartache about Will and I don't want to expose these people to any more pain.

However, I sometimes feel that I need to share these things since it will further illuminate the world in which we live, the impending horror that we fear, and the things that loom over every decision we make so that perhaps you can get a glimpse of why we may not see you as much as we hope. Why we may sometimes skip a birthday party, or a baptism, or a trip to the park during cold and flu season.

If you want to enjoy your weekend, then please do not read any more until Monday. Below is a post I have taken it upon myself to copy and paste without permission. However, I have felt so strongly attached to Penelope and her fight that I feel not sharing this would dishonor the struggle all of these kids are forced to contend with. Eventually, it ends for all of us. Sometimes it is more difficult than others, sometimes you are spared the pain and suffering, sometimes you are given a reprieve from a lifetime of horrific memories, and sometimes you are not given that peace.

This is NB. This is what we all live in fear of. This is why we want a cure. This is why funds that are given for kids should be spent on kids. This is why I don't sleep. This is why I have nightmares. This is why I meditate. This is why I'll never be the same. This is why I have to believe there is a cure for Will. This is why I love people that I have never met, have never spoken to, and will never meet. This is why my heart breaks. This is why I created this website to keep from going insane. This is why I can never give up on Will.


Journal

Friday, May 18, 2007 1:49 PM CDT


Things We need to remember:

Penelope hasn't opened her eyes more all day

Penelope must be blind in her left eye as it is purple and shut

Penelope hasn't moved an inch on her own in four days

Penelope has not eaten or had anything to drink in five days

Penelope has lost the ability to use her left hand and her right hand is starting to fail too

Penelope has a lesion coming out of her skull and keeps complaining of dizziness

Penelope's legs have been hurting all the time

Penelope's left leg is believed to be fractured and she is believed to have internal bleeding in her leg

Penelope's abdomen is very distended and making her very uncomfortable

Penelope can no longer suck her thumb or hold her "Bear Bear"

Penelope can barely find the strength to utter a word and we desperately try to decipher the sounds coming out of her mouth

Penelope is on more methadone than can be believed

Penelope still nods when asked if she want to be told stories

Penelope has told everyone she wants them to be happy

Penelope told Daddy "I am not crying, so you don't cry" (I am trying but it is so hard)

Penelope is told "We love you" by her mommy and daddy about 1,000 times a day

Penelope has not complained ONCE about what is happening to her

Penelope, when told that there is a place called heaven that waits for her, told me "I know. I will go when I am ready"


PENELOPE, WE LOVE YOU MORE THAN WORDS CAN DESCRIBE, YOU ARE OUR BEST FRIEND, OUR PRINCESS, OUR HERO! OUR HEARTS WILL ALWAYS BE CONNECTED!

Can we fly home from the store?

IMG_1052, originally uploaded by Will's_Dad.

Will had a great time at Disney and the whole experience, including the travel, was such a great experience for him that he is still talking about it all day.

The biggest problem so far, as pictured above, is that every night from our hotel balcony (Contemporary) Will would watch the fireworks in total delight and now wants them nightly. Then yesterday, Will and Dina were at the grocery store and Will asked if they could fly home in a plane from the store!!! TOO funny.

Dina took Will over to the Chid Play museum thingy over in Weymouth this morning and when she arrived Aunty Bridget was there with Tucker & Campbell...I guess there are only so many places to go when it rains!

For whatever reason VNA did not come out to the house yesterday so we left them a message today so that he'll have his labs drawn next Monday.

Thanks to be given

IMG_0910, originally uploaded by Will's_Dad.

So many people do so many kind things for us all the time and a while back I decided to stop mentioning them here in this space.

The reason for that is not because we do not appreciate it, but because it seems to have served as inspiration for others to do likewise and this is VERY hard for us.

We love all of the support but it can be overwhelming at times since we are incapable of properly expressing our thanks for what we have received and you feel, at times, an overwhelming sense of indebtedness that you will never be able to repay.

That being said...I need to mention something very special, and very important to us. Our trip that we just took was the most incredible stretch of days we have ever had as a family. Our neighborhood helped make those moments happen.

Our neighborhood was kind enough to raise an extraordinary amount of money before our trip to Philly for Will's first MIBG treatment. Our neighbors wanted to help US and not just a charity on behalf of Will and this kind thought snowballed into a very substantial amount of money. We decided to put that money aside and use it for our trip to Disney and after having returned from our trip I feel compelled to recognize the incredible gesture by our neighbors.

For some background we currently live in the house I grew up in, surrounded by many of the same families and friends that have always been there.

I was born and raised in the same town, neighborhood, and house my entire life so when I moved away to go to college it was the first extended period of time that I ever lived anywhere other than Park Street. About midway through my freshman year in college it started to dawn on me that perhaps my life experience was the exception to the rule.

The image that is conjured up when you think of TV shows depicting family life back in the early days of TV is obviously corny and stiff. However, in my mind they were not very far off from the childhood that I felt I experienced in our neighborhood. Everyone knew one another, there was and still is a sense of stability and because I still think of families that have lived here for 20 years as “the new people” certainly tells you all you need to know.

As I met more and more people from other towns and other backgrounds I realized how truly lucky I was. I did not grow up in a neighborhood or family fraught with anger, violence, marital discord, or division.

It was the kind of neighborhood where the mailman was your friend and you went to church with your neighbors and you felt a communal sense of responsibility for everyone that lived near you. Your neighbors and neighborhood were an extension of your home and at times you felt just as responsible for that neighborhood and its well being as your own home. I can remember sitting on my front porch and saying to myself “who is that?” if someone I didn’t recognize happened to be walking down the street or near a neighbor’s home.

When I met my wife and we started to think about where to buy a house in thoughts of starting a family I found myself thinking again of Braintree. After my family, this town and neighborhood had an impact on who I am today and I liked a lot of the ideals, goals, and common beliefs that were reinforced by the people we were surrounded with. I thought how important that is in raising a family and how that is exactly what I wanted and needed for my children. We bought a house in Braintree and a few years later when we had the chance to move back into this neighborhood we bought my parents house.

We had a six month old boy and it seemed the right time to try and give him that same experience that I had. That same experience that I felt helped to reinforce the ideals that I was taught at home. Now, admittedly, Braintree has change dramatically in the pasts 30 years. However, what I was searching for was not about the traffic, or the malls, or the subdivisions popping up everywhere.

What I was looking for was the right people and I knew where to find them.

Unfortunately, about a month after we moved in our lives were turned upside down and nothing has worked out quite as I had imagined. The mental roadmap you envision for yourself, your family, and your children isn’t always quite as smooth as you would hope, and for us it was completely obliterated. However, that did not change the fact that we were still surrounded by the right people.

I know that if we disappear for two weeks that someone will keep an eye on our house. I know that there will be prayers; I know that there will be well wishes; I know that there will be warm meals, warm smiles, and people who care for Will’s well being.

This knowledge helps to give you some stability in your footing to know that some things simply do not change.

I am so thankful that we are surrounded by the right people and the right neighbors and have been for this entire struggle. Sometimes in your life it is the things you can always count on that give you the most strength. This place we live is certainly one of them.

Thank you to all of our neighbors for your support and for simply being there.

Medium Well

IMG_0592, originally uploaded by Will's_Dad.

This was from the night before we left when Will was enjoying a medium well steak from the Outback steakhouse (he is holding a piece in his hand). He also got a hold of an empty box of beer and began playing with it in our tv room in case anyone was wondering why one of the pictures on flickr shows Will with an empty beer box on his head.

I'm not sure I'll really be able to describe what a great trip we had. Dina has not flown in over 6 years as she is deathly afraid of flying but she managed to get through it and it really helped that Will was a rock star on the plane. He was so easy to travel with and he REALLY enjoyed every aspect of the trip. He loved the plane, the bus rides to the hotel, the monorail, the rides, and especially the fireworks every night at the Magic Kingdom.

In fact, whe we got home last night he was asking about them again and, sadly, we had to explain that we do not have the finacial resources or the proper clearanc from the town to fire off a 12 minute pyrotechnics display in our backyard on a nightly basis.

He already wants to go back.

This was the first time in my life that I was actually physically felt sadness as the trip came to an end. Nana Ginny and Granpa Mike were in the room right next door so he had to rooms to play in and two balconies to watch the fireworks from. It was the only time since he was diagnosed that I felt like we were living a normal existence. I'll be able to describe that in more detail later but for now all I can say is that all of the germaphobic tendencies I have devloped dissapeared for the trip.

We are home

IMG_0684, originally uploaded by Will's_Dad.

I have uploaded 50 pictures from our trip, click on this one to view them.

Packed

We are sadly packed up and getting ready to go home. Will is going to miss his diet of blueberry muffins popcorn and hot dogs!

515

I just was looking at my camera and realized that I have taken 515 pictures on this trip. That is precisely 512 more than I had taken in my life before buying a new camera for this trip.

20 minutes

We stopped over at MGM studios yesterday and in a 20 minute span Will had his picture ta'en with Lightning McQueen, Mater, Buzz Lightyear and Woody. Then on the way out we stopped off and snapped a picture with Will and Mickey for good measure.

He is having the best time....Grandpa Mike was able to secure dinner reservations last night and breakfast reservations this morning at "Chef Mickey's" where you meet characters as you eat. He loved it

Mickey's house

Will was a superstar on the plane ride and all I can say is thank God for the direct tv showing nick jr on the flight.

We spent the afternoon at the magic kingdom and Will loved it. We met up with Nana Ginny and Granpa Mike and we wall went on some rides and Will had a blast.

Getting Ready for later

wrkngtcnqe, originally uploaded by Will's_Dad.

Wigwam

Wigwam, originally uploaded by Will's_Dad.

Visiting a wigwam

Fishin'

evnmrfsn, originally uploaded by Will's_Dad.

After seeing "the Man" fishing off the dam at Pond Meadow Will has been excited to go fishing. Here he is at the same spot as the man but he has a lightning McQueen fishing rod that Nana Daryl got for him yesterday.

I know more about the man on the moon than I do about fishing but he looks like he is showing some good technique here.

Snack after fishing

of=50,590,442, originally uploaded by Will's_Dad.

Will is at the clinic today receiving platelets and having his labs done. I am very curious to see how what his labs show for today and we are really looking forward to leaving tomorrow.

Will had a lot of fun yesterday with Nana and Papa and was wiped out when he got home last night.

Two days to go

IMG_0562, originally uploaded by Will's_Dad.

Less than two days until we takeoff for Orlando for six nights in Disney! Since we liked Will's counts on Monday we actually told him we were going and he is so very excited.

He wants to go to Mickey’s house now!

Nana and Papa picked Will up today and are cruising around town with him as Dina finalizes packing for her and Will and getting a few last minute things at the store for everyone. She picked up all the stuff I needed yesterday so I'll just need about 30 minutes to pack tomorrow night and we should be ready to go. Will was hanging out with the river otter and turtles up at the Trailside museum and is now in a parking lot waiting for Nana to buy Will a fishing pole so he can go fishing at Pond Meadow.

I went to the store yesterday to pick out the right size, headphones for Will. I wanted to introduce the concept of headphones to him before we got onto the plane since we are flying Jet Blue and they have a TV at every seat. Our Travel Agent recommended this highly as one of the best ways to keep a 2 year old entertained and distracted while on a 3 hour flight.

I brought them home last night and Will sat down in his chair at the Lightning McQueen radio/cd player and listened to "Don't Stand so Close to me" by the police about 10 times in a row while laughing at how the headphones work. It was interesting to watch him take them off and have a puzzled look on his face as he was discovering that when they are plugged in no one else can hear it.

I'm glad he enjoyed them.

One other note: someone put a comment on the post I wrote about the Jimmy Fund defending Dana Farber as if I was attacking the caregivers.

Will receives great care at the clinic. His doctor is more a part of our lives than just about anyone else in the world and is a constant source of support. He is in constant contact and treats our family as his patient not just Will. I could pick up the phone and call him night or day at home, on his cell, or on his wife's cell (he gave us all the numbers) and he would drop anything to help us.

I have used my Blackberry to email him from hospital rooms, radiology waiting rooms, cars, planes, trains at all hours of the night and he always has an answer and always listens and responds to my questions no matter how absurd they can be. The care we have received and the support is not what I have questioned.

What I have questioned has nothing to do with our caregivers. What I have questioned has nothing to do with the care. If it was substandard care and I continued to go there I would be negligent and if I was so inclined I could take offense to the fact that someone could think that I was unhappy with my son's care yet continued to go there. That is indirectly calling me a negligent parent and something I've tried not to take offense to since I know I can be hypersensitive about these things.

In fact we have only received 'treatment' for his cancer at another hospital so far in 2007 because Dana Farber recommended we do so.

The problem I have, and I know I made this clear is how Dana Farber uses the images of children in their fundraising so that most people (including myself until last fall) assumed that if I wrote a check to the Jimmy Fund that every cent went towards pediatric research. They want you to believe this and do very little to dissuade you of this misconception in their marketing material.

This has nothing to do with the care Will has received.

It is life, let it happen

IMG_0584, originally uploaded by Will's_Dad.

When I was younger, probably a young teenager, I can remember having a few episodes where my visual perception changed in such a way that I knew something was wrong. I still can not describe it, it is almost as if I became gigantic and everything I was looking at became very small like I just climbed down the beanstalk. Or, it was like I became tiny and everything I was looking at had become GIGANTIC, as if I had climbed UP the beanstalk.

In all honesty, it was both of these things at the same time. And as this would happen, I would make a point to try and step back from the initial feelings of panic and try to clinically observe what was going on so that I could describe it in detail to the doctor. Yet even as I did this, I could not decide which of the two observations was correct.

Did I shrink, or did I become gigantic?

I just didn’t know. At the same time, my other senses would seem off, almost as if I had cotton balls stuffed in my ears and I could never tell if this was a separate issue or just my body trying to adapt to what I was seeing. In any event, after a few trips to the eye doctor it was written off as simply tired eye. It was about that time that I began reading for the first time after being on summer vacation and picking up “Thinner” by Stephen King. I really started to enjoy reading and I’d stay up late at night reading Stephen King and Tom Clancy books and developing a bad case of insomnia as a result. The doctor concluded that my vision issue was a result of this eye strain. At the time I was convinced he was wrong and that something else was going on, but what did/do I know about medicine?

Since I grew up those episodes are few and far between and I can only recall them happening on a few occasions. It was always a disorienting experience, not necessarily unpleasant, but just the sheer fact that it wasn’t normal was enough to make you worried. The reason I mention this is that for the first time in my life I experienced that same disorientation, the feeling of disconnectedness, the same feeling of floating above yourself and witnessing your interaction with another human being as if you are a third party, except this time I did not have the vision problem.

I was sitting in my kitchen on Monday morning with Dina, Will, our contact with Early intervention for Will’s speech, and the head of Braintree’s integrated pre-school and kindergarten program. They were at the house to discuss Will and his entry into their program in the fall. The discussion was about how since Will was being discharged from speech that he would no longer qualify as a special ed case at the school. Therefore, he would simply be entering as a general student and would be attending preschool 4 days a week for 2 hours a day. His classroom would have 10 students, it would be across the hall from the school nurse, and this classroom has a sink in it for hand washing/germ control purposes.

As the conversation went on concerning tuition costs along with discussion of school bus I felt that same sense of disorientation gripping me. The part of my mind that handles conscious thought was drifting away from me like a balloon whose string I could not grasp and although there were still words coming out of my mouth and sounds entering my ears I was absolutely detached from the conversation in the room like I had never been before in my life.

It was a surprise backwards fall down the rabbit hole. I tried to stay involved but my mind started drifting and panicking, I had to bite my tongue.

Will’s going to school at the high school? The same one I went to 15 years ago?

A bus…, FOR THE LOVE OF GOD A YELLOW BUS, is going to drive to my house? And Will is supposed to get into it???

Don’t you know my son has cancer?
Don’t you know his doctors said he is incurable?
Don’t you realize that since he was 7 months old we’ve totally been locked down in battle mode?
We surround him at all times ready to attack any threat to him, to battle back at all costs and now we are going to send him onto a bus without us?
How can you speak so calmly and confidently about Will’s ability to attend pre-school in the fall?
That is four months away.
Four months is a LIFETIME, four months is infinity, four months could ruin our lives and yet you are talking about a bus picking him up and brining him to school with other kids? It was too much for my mind to handle.
You don’t mention a no-hitter while in progress, you don’t walk under a ladder, you don’t break mirrors, and you don’t make concrete plans four months in the future when all you have, all you are clinging to, is today.

I was still somewhat uneasy after they had left but my senses returned and I realized something very important. I need to relax a bit. I need to have a more reasonable risk profile for what Will can and can not do. And I need to unclench my jaw and remember to breath since this kind of attitude can impact my choices for Will and what he gets to enjoy in a negative way.

It is May, preschool starts in September.

This is what normal people do.

It is ok to do things that normal people do regardless of what may or may not unfold.

It is life, let it happen.

Calling the police

IMG_0578, originally uploaded by Will's_Dad.

Last night before dinner we sat on the front porch for a while as it was a beautiful night. It appears that finally spring has sprung here in Massachusetts and it was the kind of night that makes you want to sit outside and, as Will and I sometimes do, take a guess at which streetlight is going to turn on first.

As we were enjoying the night there was a very loud and incessant engine noise from one street over as it sounded like someone was driving a dirt bike up and down the street. It was getting annoying and very loud until finally someone drove down the street on one of those miniature motorcycles that looks like something a clown would ride at the circus.

Dina made some exclamation like "WOW...he's going too fast" and Will became excited. He then ran into the house and came outside saying that he was going to call the Police! He began frantically dialing and as pictured here he was explaining to 'the police" what was going on. I luckily had my camera with me at the time and this picture captures the moment very well.

You can see how he is sort of hunched over and has his right hand out at his side as he was very animated when talking to the police. He is too funny...I don't know where he gets some of the stuff he comes up with.

Marrow Recovery

IMG_0564, originally uploaded by Will's_Dad.

Will is seen here debating the pros and cons of a future in the world of tech support....I think he is leaning towards the life sciences after his latest desktop experience.

This Thursday is six weeks out from Will's MIBG infusion and the counts from today were puzzling to me. He has received back to back high dose MIBG infusions and last Friday his crit was 25.6 but he was lethargic so we gave him some blood.

This weekend and today he was still lethargic but his counts were as follows:

White Blood cells: 3.7
Crit: 36.9 (transfusion last Friday)
Platelets: 32
ANC: 2035

His white count and ANC are on their way back up and he did not receive G-CSF shots. We are skipping Wednesday labs and going to clinic on Thursday for labs and to top him off with platelets before we go to Mickey's house.

What does this mean?

It means, first of all, that the cold Will has must be the reason he seems a litte off. Also, it means I have to go out shopping for some clothes tomorrow as it appears that our trip to FLA is still on. And lastly, it means that unlike most kids who get back to back MIBG infusions Will did not (thankfully) require a stem cell rescue as I had expected.

Most kids who are have tried MIBG have travelled a much longer and harsher road to get here. Most will have had High Risk disease at the start meaning, most likely, prior radiation, prior stem cell resuce, and a lot more high dose chemo than Will received (5 rounds). Therefore his marrow has not take as much abuse as most of the kids who get this.

Also, his disease burden is relatively low and to this point has never involved his marrow. His disease has pretty much only been soft tissue disease in his chest and right now consists of three seperate areas with two of those areas being small and the largest chunk being the residual 'golf ball' sized chunk leftover from surgery.

Theoretically, this could mean that Will is a candidate for a third consecutive MIBG infusion. Why would this happen? If the scans in two weeks indicate that this is working to slightly shrink small parts of his tumor then he could get another infusion since his marrow did not require a stem cell rescue.

In all honesty though, we have no plan in place for what is next since his scans will determine what to do.

Stale Bread

IMG_0492, originally uploaded by Will's_Dad.

Will has begun stockpiling bread in ziploc bags so we can go back and feed the ducks. Dina pointed out today that she thougth she saw sings stictly forbiding this practice at the exact spot we did it the other day but I can't ever recall seeing a sign like that.

I certainly hope that isn't the case as I don't have any recipes that include 5 lbs of stale bread as one of the ingredients and I know Will is not going to let me throw it away.

Pineapple bed

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Originally uploaded by Will's_Dad.

Will was a littly fussy and cranky yesterday and did not want to leave the house all day. He is kind of the same way this morning so what we thought was the need for blood on Friday (although he technically did not need it) was in fact something else.

He picked up a cold but does not show any other bug like symptoms so perhaps his white count/ANC has bottomed out. They took labs today and we'll see what is going on this afternoon.

Will's room has been a bit of a disaster since I never removed the crib from his room. He has been sleeping in his big boy bed for quite some time now but I never got around to moving his crib.

The crib we bought for Will nearly 3 years ago was really a pain to put together and unfortunately it does not fit through our doorways when assembled.

Since Will was not interested in going outside I thought it was a good time to tackle the 'crib project'. It was a painful process and in the end it turned into a much bigger plan.

In our spare room across the hall from Will we have a full size bed, a desk and computer and everything else you need to dump but have nowhere to put it. Long story short....Will has uprgraded from a twin boxspring and mattress on the floor to a full size bed with a wooden frame with 'pineapples' on the head and foot boards so Will used to sleep in "a big boy bed" and now he sleeps in "a pineapple bed".

Of course, we have no sheets for this bed so Dina headed out to score some Lightning McQueen full size sheets. Let's just say that Will looks small in a bed for the first time since he was probably 3 weeks old. By the end of the day simply moving a crib had morphed into a massive moving project and now the spare dumping ground room looks empty, Will has a giant bed, and the pc/desk are now downstairs.

We are scheduled to go to Disney on Friday and I have not even thought about or even tried to pack.

Pond Meadow

IMG_0489
Originally uploaded by Will's_Dad.

Will and I cruised up to Pond Meadow Park this morning to feed the ducks and swans some leftover bread from dinner that Nana and Papa dropped off last night.

He had a lot of fun feeding the duck and swan, along with a nice surpise of seeing a lot of fish coming to the surface to eat the bread. We then strolled over to the dam where a man was fishing for bait fish and Will sat atop the dam next to this man enthralled by the whole process. I knew that was it for the days activities since he was really intrigued by this. He kept peeking into the bucket and saying hello to the fishies and saying "man catch one more fish?" to which the fisherman would laugh and say "I'm trying, I'm trying".

On the way back home we bought a Diego patio chair/table/umbrella for Will and he had a snack out back before naptime. When he gets up we may go and attempt to fly a kite but my kite flying skills are unknown since I was probably WIll's age the last time I tried.

If you click on this picture it will bring you to Will's FLICKR page where I will now post thousands of pictures of Will with our new camera and our unlimited storage capacity. I'll try and share as much of his days via pictures as I can but I'll just post some of the better ones.

Blood

Will is getting some red blood cells today as his crit is still hanging around 25 but his energy and activity level was a little low yesterday. His platelets actually increased but his white count and ANC dropped. With is ANC around 1000 we are waiting for labs from this morning to see where it is going.



If it goes down below 750 we will have to start daily shots.

UPDATED: His labs from this morning before his transfusion indicated that although his white count dropped from 2.6 to 2.35 his ANC went up to 1,140. His hbg stayed the same and his crit went from 25 to 25.6. So other than a slight drop in his platelets he was fine and in fact did not even need the blood we gave him.

However, with the weekend coming up we figured it would be pest to top him off....I mean honestly, what better way to start a weekend than to top of you engine with the good stuff.

We will have labs again on Monday and have ordered supplies in the event that we have to bring G-CSF to administer shots with us and our doc even gave us a note in case we get a rash about the needles.

Third person

Will received a visit from Nana Ginny yesterday and they had a lot of fun. Will really likes to play in whatever car happens to be at the house that day and Will went a little nutty in Nana Ginny's car. When she went to go home last night every button and gizmo in her car had been moved...the blinker was going, the wipers were on, etc...etc...

I don't know how it happened but somehow her radio wasn't working as a result of something Will did so she had to stop at the dealership on the way home to have them fix it.

Please keep this in mind if you ever stop by and Will asks to 'drive' your car. Dina and I took Molly and Will for a walk after dinner last night and then I had a hard time putting Will to bed. He is starting to become independent, like kids his age will do, but he is really begining to test us. It is hard sometimes as I try to balance making sure he is well behaved with the reality of his disease.

Something tells me that the laughter, smiles, and joy Will experiences in doing some things we shouldn't let him do will stick with us longer than the time he was very obedient to a command I barked at him. Still....it is hard to find a happy balance.

One thing that is pretty funny is that Will has expressed that he wants to be called William and it is funny to here him use the thrid person to describe his activities with William. "William go up in attic" or "William eat waffles and french toast"....it's like living with Rickey Henderson.

Save the date! Nov 28 2073

willspgbob
Originally uploaded by Will's_Dad.

Here is a picture of Will from Saturday's birthday party and he looks like he is guilty of something, perhaps it has something to do with that wrapping paper. Will's ANC dropped to about 1,700 his crit is just above transfusion level and his platelets had dropped to 46 but he managed to avoid a transfusion. We are having his labs drawn again tomorrow and would anticipate a transfusion on Friday as tomorrow is 5 weeks post MIBG infusion.

Next week he will have labs on Mon/Wed so that if he needs to be topped off we can do it on Thursday and still fly out to Disney on Friday as planned. The biggest issue standing between us and that trip is his white count/ANC so we are obviously very concerned about those results a week from today.

At the end of the day we can always reschedule if we have to but I do not want to miss this chance if necessary since we do not know what is next. Will has not received chemo since before Christmas so it is hard to describe what the first four months of this year have been like for us. Will was diagnosed just before 7 months of age and has been on chemo until Christmas with two major surgeries and countless scans and tests along the way.

To have had these four months of just two MIBG infusions in Philly has been so different and so much better than our normal quality of life. I would like to get this trip in, if possible, while we are still in this phase since I have no idea what is next.

Will it be surgery? If so, is he going to lose the function of his left arm?

Will it be another round of MIBG? I don't think so.

Will it be a new chemo he has never had? Will it be an anti-angiogenic regimen? How will that impact his day to day health?

Since we do not know, we can't guess at what his qualify of life is going to be.

Another horrifying thought is that Will has been working with early intervention for speech and they want to discharge him. We are meeting with someone on Monday to discuss his enrollment in the town run pre-school in September at the high school.

September? Pre-School? Are you kidding me?

It is not that we requested this but it is simply that time of year for kids his age who have been getting help from early intervention to discuss this stuff. I just got off the phone with the pre-school down the street from us and I feel very odd.

If I just called a restaurant to book a reservation for my 100th birthday celebration in 2073 I would feel less awkward and weird than I do right now after that call. In any event, we’ve been asked to call so we’ve done it.

Anyway, I have received a lot of feedback about what I have written about fundraising/etc.. and I just want to make it clear, again, that my problems with Dana Farber have NOTHING to do with the care Will has received or his caregivers. The nurses, Doctors, and staff have been wonderful and in no way does my disgust with Dana Farber’s fundraising and administration reflect that care we have received from our doctors.

I know I have complained in the past, and rightfully so, about delays and no hospital beds, etc… but that is what happens when you spend the majority of your time at the hospital and with doctors. They are people and not Swiss watches and sometimes delays simply happen. Eventually you can't help but get a chronic case of Hospitalitis.

The Jimmy Fund is not what you think

If you take a look at the front page of today's Wall Street Journal you'll see an article titled "Saying no to Penelope" that is about Penelope London, her struggle with NB, and the roadblocks she is facing.

The further down this road of NB I travel the more frustrating this journey can become. If it isn't unethical fundraising by cancer organizations (hello Jimmy Fund and Relay for Life) then it is the fact that, as mentioned in this article, return on investment trumps all else. And although this is what makes a society based on capitalism survive and thrive there is a time where you still have to be human in spite of the money involved.

In 2005 Dana Farber raised 160 million dollars of which 51 million was donated specifically to "The Jimmy Fund".

Of that 51 million that was sent to the Jimmy Fund can you guess how much was directed to pediatrics? 9 million.

So, if you wrote a check to the Jimmy Fund or donated to the WEEI/NESN radio-telethon or bought a $1 scratch ticket at Stop & Shop it is quite possible that not 1 penny of that money actually went to pediatrics in spite of the picture of little Jimmy on their logo. The Jimmy Fund started out in the 40’s after a radio broadcast went out from the bedside of a 12 year old boy who wanted a TV to watch the Boston Braves games. The money poured in and over 200K was raised in the first year and the Jimmy Fund was born.

Eventually, probably when they realized how successful bald kids are at getting money in the door, the fund switched over to fund not just pediatrics but all cancer care. Now pediatrics gets only a small percentage of the funds.

In spite of the change in the basic mission of the organization they still kept the name (Jimmy) and the logo (the picture of a kid) the same for obvious reasons. Also, the fact that the pediatric outpatient clinic was named the Jimmy Fund Clinic didn’t help clear up any ambiguity about how that money is spent.

I was looking to set up a bi-annual fundraiser for pediatric cancer research so I asked Dana Farber for their financial breakdown and was horrified to learn of these numbers. I'll have to search around for a new charity to donate to.

The hard part is that here in New England everyone “knows” that the Jimmy Fund and helping cancer kids is like Peanut butter and Jelly; one does not exist without the other.

Unfortunately, this myth is generally accepted as gospel. When trying to think about raising money just for kids in New England you can't compete with the Jimmy Fund. Everyone who wants to help a sick bald kid already thinks that they have done their part when they write a check to the Jimmy Fund even though only 18.5% of the money donated to the Jimmy Fund and less than 6% of all Dana Farber contributions are actually directed to kids.

Yet trying to say anything negative about the Jimmy Fund is like saying puppies, rainbows, sunshine, and lollipops are evil. I was at the grocery store yesterday and a 17 year old girl asked “would you like to buy a $1 scratch ticket for the Jimmy Fund” and I said no and she became upset with me like I had kicked her dog. How would I even begin to explain?