Here is the flyer for the Brockton VNA caring for kids golf tournament. This is for the group that comes to our house and takes care of Will. This saves us countless trips to the hospital and delays in treatments since we can have Will's blood drawn and tested a day in advance.
For More Informationvor to Make a Donation
Contact CFK Golf Tournament Coordinator
508-894-5286
Fax: 508-584-8780
cfkgolf@brocktonvna.org
Everyone who knows my brother Carl is quite confident in the knowledge that he is certifiably insane. However, in the nearly 37 years he has been on this earth there has never been a moment caught on camera where the photo registered that "Eureka" moment….until now.
Here you can clearly see that Evelyn has, for the first time ever, registered the fact that her Uncle Carl is completely out of his mind. Luckily, he is the kind of crazy uncle that everyone should have and you can see Evelyn smiling at this realization, not shrieking in horror. (This...of course...is a joke regarding this photo)
Thank you to everyone who helped Jim get off to a good start in Running For Will donations.
It was a good weekend for Will althought he seemed a little 'less' like himself on this last round of chemo than he normally has. I think it was a combination of excitement from the holiday and some excited play time with is cousins. However, he started needing/requesting naps again over the past week or so and it continued this morning. He slept about 12 hours last night and then asked for a nap today after being up for about 2.5 hours. I’ll have to call his doctor today to ask about this as his counts seem fine. Any worriers about disease progression can simply wait until Thur/Fri of this week as we scan then anyway.
Last year I wrote a POST about how I went out with my friend who was back home from London for the holidays. It was a Thursday night and I was out late and ended up being pressed into service the next morning and having to attend Disney on Ice. This year, on precisely the same date (Friday night this time) I ended up once again going out with my friend Niko and getting to bed quite late. And just like last year Will woke me up early and a few hours later we were at the Garden watching Finding Nemo on ice.
I had a great time, as did Dina and Will, and I look forward to hopefully repeating this cycle for years to come.
Evelyn had her 2 month check up today as well as her immunizations.
She was 24.5 inches (98%) 13lbs 5.5oz (95%) and her head was 40cm (76%).
Here is Will with his cousins Frankie & Alex on Christmas day. Will wanted to tackle people and throw a football at their faces. Luckily they are 12 and 9 so he was unable to cause them any serious harm.
Will, Dina, & Evelyn went down to RI yesterday and Will stayed down for a sleep over. Evelyn has her 2 month check up today so Dina had to come home. We discovered last night that Nana & Grandpa's alarm system is fully operational as Will decided to push the panic button on the alarm while Nana Ginny was brushing her teeth!
Will had his labs done by VNA this week:
WBC 8.5
HGB 11.9
HCT 31.7
PLT 222
ANC 3400
We finished cycle 10 of ABT yesterday and scans are next Thursday/Friday. After this we scan every 4 cycles of ABT (if things go well) so the end of cycle 14 would be sometime in March.
This one cracks me up about 25 seconds in because he is desperately trying to pull something out of his stockings. He says "come on!" in just the right tone.
Please be advised: His pajamas can induce a seizure if you stare at them for too long so avert your eyes every 20 seconds or so.
This second one is yet another performance on Will's guitar stage.
This is just Will being Will....hitting the tv with his guitar and then looking across the room into a mirror as he hoists his guitar in the air. There is nothing remarkable about this video. I just am uploading snippets of video for my own viewing.
We were lucky enough this year to be able to host Christmas at our home. With Will being 3 and Evelyn just 8 weeks old it would seem a potentially daunting task but all that we had to do was set the table. Dina's mom & Dad arrived yesterday and made about 35 trips into the house with tons of food, tons of appetizers, and an extraordinary amount of desserts and presents.
Not only did Dina' parents Mike & Ginny bring all the food but Ginny did all the cooking (and she can really cook!) and it was a great holiday. We had a very good Christmas and as I went to bed at night I couldn't help but wonder what all the stress is about in the weeks leading up to xmas. It is just a great time to be with family, to soak in the joy on your kids faces, and to pause for a moment to be thankful for everything good in your life. There are so many kind and generous people in the world, so many family member to be thankful for, and just so much to be happy about. It is very important for me to remember this.
I try so hard each day to remember what is important. To rid my mind of unnecesarry worry. To focus ONLY on what is important. Yesterday, thanks to Santa Claus, my in-laws and the holiday it was one of the rare days I did not have to wake up in the morning and 'make my mind right' before getting out of bed.
On Christmas Eve we went to my parents house in the afternoon and stayed for dinner. As we were leaving for the night we went out to the car to load up the kids and the gifts we had received. As Will was getting into the car Nana pointed out the fact that it was a Full Moon to Will. He made an excited noise and then said:
"Now Santa will have someplace to park his sleigh!"
That absolutely kiled me!
Since we are speaking of sleigh's.....
According to the 2003 study that was published by the "Society of Sleigh Flight Engineers" the Gambrel rough ranks #3 on the Top Ten list of "Hardest roof style" for a proper sleigh landing. The approach flight vector, roof slope, and sleigh load have a profound impact in this type of landing. If performed incorrectly, there is serious potential for a very loud impact upon landing. This would result in Santa having to distribute even more magic dust to ensure all occupants of the house remained asleep for the duration of his visit.
Also, there has been an established link that demonstrates a profound inverse relationship dictating TIH (time in house) as it relates to roof style upon retroactive analysis.
Due to the steep angle of the gambrel roof and center location of the chimney there is an extraordinary amount of pressure applied to the knee and hip joints of the Reindeer to ensure they do not slide off the roof. This knowledge causes Santa to rush his visits in houses with this style roof in order to avert torn knee ligaments or a dislocated hip.
After reading this study back in June of this year I realized that we needed to do something since our house is a side facing gambrel (looks like a barn) since I now knew that Santa was obviously rushing his TIH at our house over the years.
Luckily, we have an addition on the back of the house that contains a family room off of the dining room and a separate playroom off of the kitchen. Not only does the family room posses a fireplace but the roof style is a simple shed roof with a very low pitch. Other than a flat roof, you could not set up a better location for Santa to land his sleigh according to this same study.
So this year, for the first time EVER in the history of our house the Christmas tree was located out in the family room specifically to ensure that Santa did not feel rushed while in our house. We did not want him worrying about his team up on the roof and thus impacting his ability to do the best job possible.
We left out a glass of water, some cookies, and of course some carrots on Christmas Eve and then went to bed. When Will awoke on Christmas morning I went down to his room and we threw open his shades to look out onto the roof of the family room. And you would not believe what we saw!
On the roof, in a number of locations going right to left away from the chimney, we spotted a bunch of half eaten carrots on the roof!
Will exclaimed "SANTA MUST HAVE COME!" and he then rushed out his bedroom door, down the hallway, and into the doorway to our bedroom to loudly shout to Dina and Evelyn "SANTA WAS HERE!"
We quickly rushed downstairs, and there at the kitchen table, we discovered the remnants of two gingerbread cookies that Will had decorated, an empty glass of water, and a note from Santa Claus himself!!! Will rushed out to the family room and was soon overwhelmed with all of the wonderfully arranged gifts! It clearly appeared to me, having spent parts of 34 past Christmas's in this house, that NEVER had Santa taken so much time and care in arranging the presents!
He must have been so appreciative that finally, after over 100 years of coming to this house, that someone finally attempted to make his life easier. His appreciation of this fact did not go unnoticed by us and I'm sure that he and his team are glad that they can cross at least one "Dangerous Gambrel roof landing" off of their practice list for 2008.
I hope that everyone had a wonderful holiday. And no, in case you were wondering, I have not lost my mind nor am I taking any prescription medicine.
Sabotage -
1. Destruction of property or obstruction of normal operations, as by civilians or enemy agents in time of war.
2. Treacherous action to defeat or hinder a cause or an endeavor; deliberate subversion.
How are kids with relapsed Neuroblastoma going to be saved? Kids like my son pictured here in our kitchen cabinet.
There are virtually NO long term survivors of relapsed NB and the kids who do beat it back into a 2nd or 3rd or 4th remission pay an extraordinary price. NB survival is flat over the past 15 years, or so, despite dramatic improvements in other childhood cancers. Most of this improvement has been the result of hard work and research to discover new ways to give higher and higher doses of chemotherapy. While many NB kids these days do have a much more dramatic reaction to the current intense treatments up front the long term survival has not improved.
So what do you do? It has been made very clear that NB is a very hard cell to kill. You try as hard as you can for as long as you can but eventually the treatment is too much or the disease progresses despite everyone’s best effort. Obviously there is another approach that must be taken here if we want to save our kids. If you speak to a surgeon about a cancerous lesion, their default position always comes back to “let’s cut it out!” If you talk to an oncologist about a tumor their default position is “lets kill it with more/different chemo/radiation”. For Neuroblastoma the answer obviously exists somewhere outside of this existing paradigm. A place on the cutting edge of science and technology, and a place that is as impossibly far away from pediatric cancer patients as you could imagine.
There are many ideas that exist out on the edge, far away from the decades old chemo agents currently being offered. Some of these ideas show promise, others give people hope.
One concept that is being pursued/funded by Magic Water revolves around oxidative stress. This is why I send all of my spare change to them, and why all of the money you donate in honor of Will goes there as well.
If you want to read about oxidative stress, feel free to do so and you can start HERE (http://en.wikipedia.org/wiki/Oxidative_stress). I wasn’t very good at even basic science in high school so I can’t tell you the ins and outs but I can tell you my interpretation (I'll do my best).
Each and every cell in your body needs energy to function. While your body is made up of differing cells with unique DNA when they went out to purchase their generators there must have been an incredible sale on mitochondria at Home Depot because every cell has the same exact make and model and the DNA in these cells is virtually identical regardless of what type of cell they produce their power for.
So, envision each cell in your body as a home in your town. You have big houses, little house, 3 families, and certain cookie cutter neighborhoods while others are completely unique. But now imagine that one thing that is the same in this town is that each house has an attached 2 car garage and this is where they store/run their generator (Obviously in my analogy this town is not part of the electric grid and each house needs to run a generator in their garage for energy. But give me a break, it's my analogy and I’m doing the best I can).
Certain houses (like those jerks in that new subdivision of McMansion's) require more energy than other houses so they have their generators running ALL the time.
These houses use up more gas and create more exhaust (and increase everyone’s property tax burden). To deal with all the exhaust each garage has a vent fan installed and occasionally they may open up the garage door to get some fresh air in.
Since cancer cells are constantly dividing they use an abnormal amount of energy. Therefore, in this analogy, the houses that are cancer cells have their generators running on high 24 hours a day and although the vent fan keeps up with the exhaust it always smells a little bit like exhaust in these garages.
So, how do we take advantage of the fact that the generators in these houses are running a little hot? Although these generators are all exactly the same I am now able to differentiate between them because of their energy consumption and exhaust output.
Knowing this information I decided to deliver extra gasoline to every generator in town AND while I was in the garage I surreptitiously increased the throttle on all generators.
Suddenly the overworked engines would be carrying a bigger load, creating more exhaust, and creating more work for the vent fan to keep up with all the exhaust. The normal cells that were not overworked to begin with would also have their exhaust output increased but they would still be within safe levels (sort of like the cancer cells were before). Let’s further assume that after doing this I also went to every single exhaust fan and turned them from “HIGH” to “LOW” and I then blocked the garage doors so that they could not fully open.
Suddenly, the engine is running full throttle, the exhaust is building up dramatically in the garage, the vent fan has been turned down, and the garage door can’t be fully opened. The carbon monoxide is going to start to back up into the house and eventually death will ensue.
That is how I understand the concept of applying oxidative stress to cancer cells. The key is applying the right level of stress so that you only push the cancer cells past the point where the vent can’t keep up with the exhaust. You don't want to apply to much stress and thereby kill healthy cells as well.
Unlike all the failed attempts at killing Neuroblastoma over the years this is not an attempt to kill cancer directly. Instead, the idea is to use this unique signature of cancer cells mitochondria against itself to induce death via apoptosis or necrosis.
The agents that can accomplish this are less toxic than chemo and in many circumstances would be used with chemo as they may help make chemo more effective.
Luckily, I’m not in charge of doing this work since I can’t pronounce half of these words. However, I felt it very important to share with people why I am excited about MagicWater and to explain to people what I mean when I say we want less toxic therapies to save kids lives.
Well of course we do? Who doesn’t? I'm sure many of you have looked at me like I was buying magic beans so I want to highlight what I’m talking about.
There is actual science/success behind this and the goal is to find a way to get new agents and combinations into the lab and then QUICKLY get it into kids. This is what your donations are being used for so thank you again for all you have done.
We have had the kind of snow in December that I remember having as a kid around Will's age and that has seemed to be missing over the past 10 years. We have had over 2.5 feet and it does not appear to be going anywhere so that is certainly helping to create a wonderful environment for Will's first 'real' Christmas. By real, I mean that he is now old enough to fully grasp the concept and although he seems concerned, almost worried, about Santa coming down our chimney he is otherwise enthralled by the whole concept.
It is great.
Last night I went up into our attic in search of something for Evelyn that we originally bought for Will. It was one of those baby bjorn thingies. I couldn't find it so I was rooting around in all the areas of the attic that I thought it would most likely be. I had a near "A-HA!" moment as I lifed up one item surely expecting the item to be revealed.
Instead, I had uncovered an infusion pump that we used this time last year to give Will his at home Topo/Cyclo chemo. I also have an IV pole up there and have stuff hanging from it....it is really quite an interesting attic.
In any event, it is a purely cancer parent moment that made me laugh and further enhanced my appreciation for how well Will is doing this year.
Dina luckily recieved a CD with the picture she had take an hour or so ago and just sent it to me.
Santa looks like he needs some "Preperation H".
Wil looks like the kid from "A Christmas Story" who drew a blank on Santa's lap and asked for a football instead of a gun.
Evelyn is in the midst of a crying fit.
And Dina looks unusually happy about the whole situation!
I am so incredibly in love with this photo....I am a lucky guy to have such a great family!
P.S. Is is just me or does my 3 years and 4 month old son look like he is surprisingly close in size to Santa?
Yesterday Dina went in to school with Will for a craft day and they made this wonderful Ginger bread house.
With this photo I caught Will in the midst of a sneak attack he was launching on the house while I had left the kitchen. I made him promise not to eat it before I could snap a picture and as I came back into the kitchen he had stuffed a gum drop into his mouth and attempted to hide it in his chubby cheeks in a horribly failed attempt at fooling me. I actually said to him “Do I look like I just fell off the turnip truck yesterday?”
I have to admit, I didn’t realize how exciting it would be to start dropping classic, silly, and hokey lines like that on my kids. I can’t wait to ask him if he’d jump off a bridge just because his friend did. I love it.
Santa can't come soon enough for Will and today he, Dina, and Evelyn had a group photo taken with Santa. Apparently they were delivering Will & Evelyn's wish list to Santa's mailbox today and Will demanded a group photo. The funny thing about Evelyn's list is that Will filled it out. We asked him what he thought Evelyn would want and he said "dolls" and then starting trying to sneak things onto her list that he wanted....he is turning into quite a sneaky little fellow.
I took Will to clinic today and his labs looked great and we came home with his prescription for tomorrow. He also came in at 55 pounds and 3' 6" tall....he'd better start getting taller to keep up with his weight as 24.9 kilos is a whole lot of 3 year old.
As I mentioned before Jim Richardson has once again decided to run the Boston Marathon this year in honor of Will. All of his proceeds will go to Magic Water and you can track the progress of his training HERE. Any donations you'd like to make to support Jim specifically can be made from the Donate link on that page to support Jim.
The money is all going the same place, but that link will allow Jim to track the donations being made to support him in his efforts. I'll do my best to get Jim to contribute text/pictures along the way.
You can read his message HERE.
Thanks again to Jim and for everyone who has supported him in his efforts to get a number and to save kids lives.
Will is making cheese & cracker sandwiches and Tucker is inspecting the dish of tater tots during their party after Santa left.
Will had his labs drawn today by VNA and he did a great job! Our VNA nurses are incredible to us and Will and it makes it so much easier to have labs done in the comfort of our own home when compared to spending more time in clinic.
Will floored me today after his labs were done as he ran out to our nurse Pat and gave her a hug and said "thanks for doing my labs Pat!”
I would imagine that being a visiting nurse for pediatric patients with a catastrophic illness must be very emotionally draining. However, I would fathom a guess that adult VNA nurses rarely get hugs and a thank you from their patients after a blood draw.
He is too funny some times.
Will goes to clinic tomorrow for a physical exam and then starts cycle 10 of ABT-751 on Friday. And then we'll be doing scans yet again. After cycle 10 the scan schedule changes from "every 2 cycles" to every 4 cycles so he would scan again after # 14.
This will be his 29th cycle of chemotherapy overall.
On Saturday Carl & Bridget pulled some strings and Santa Clause made a guest visit to their house. After everyone else had gone home Tucker & Will decided to have their own party and are seen here sitting at the table. They said "cheers" touched cookies, and then gobbled them down.
I was recently thinking about how there is nothing in my life that is getting 100% and at times it can be frustrating. It is a simple reality of adulthood that the more responsibility you take on, the more plates you have spinning at once, that you cross a line where it becomes impossible to fully commit yourself to any one aspect of your life as you once may have done. Your energy, focus, and effort is spread a mile wide and in places it is only an inch deep.
It becomes impossible to devote 100% effort to any ONE thing when you have so many things deserving of your time (your wife, your kids, your job, your home, your friends, your family, and yourself). When one of your kids is a newborn and the other in treatment it creates an additional 'thing to do' and one more thing to feel guilty about not giving your best.
I'm happy to have a wife, a son, and a daughter. I'm lucky to have a good job and benefits. I'm fortunate to own a home, have cars, and to be able to pay my bills. I just wish I had more to give to the people in my life. Insert whatever cliché you'd like here:
"There aren't enough hours in the day"
"I wish I could bottle kid’s energy"
Etc...
But the simple fact is that I do wish there were more hours in the day, and I wish I could fully engage every interaction with every other person I speak with each day to wring the most out of each experience as possible.
This was one of our failed attempts at a Xmas card picture…..I like to call it the Pumpkin & Apple shot...
On Saturday we went up the street to Uncle Carl & Aunty Bridget's house as we heard that Santa Claus himself was making a guest appearance. Will had a lot of fun with all the kids and he and Tucker played until about 8pm when we finally took Will home. He and Evelyn both received gifts from the bearded wonder before he went on his way.
You may have seen it in the Sunday Boston Globe magazine but in case you missed it there was a brief article about Children's Hospital Boston and their MIBG treatment room (http://www.boston.com/bostonglobe/magazine/articles/2007/12/16/getting_the_lead_in/). As you will recall, we made to trips down to Children's Philadelphia this year for a 5 day stay at their facility to receive this treatment. There were only 4 places in the US that you could receive this treatment and CHOP was the closest to us.
A room on the oncology floor had to be done over to include lead lined walls to protect all everyone else on the floor from the radiation being injected into these kids. To do this for one room it cost nearly $700,000 which is a pretty remarkable investment when you consider the patient population is so small. They must feel confident that MIBG therapy will be moving to eventual use as a frontline therapy to commit funds to such an endeavor on top of all the training that will have to take place for the Nuclear Med techs and nurses on this floor. I'd imagine the nurses, many of child bearing age, aren't tickled pink about this new development but I know that for parents like us this would have removed an incredibly layer of anxiety/stress/and cost by having this treatment performed at your home institution.
Will’s scans remained stable after each infusion he received; however, it allowed us to have a remarkable quality of life when compared with vomit inducing and hair removing chemo ever 21 days for the first 5+ months of this year.
I can't imagine you'd be too excited to be in the room next door for a month or two after transplant when every week there is a new kid next door getting infused with radioactive material.....but that is what the lead is for. If I stayed behind the shield my Geiger counter rarely went up so it is really just the immediate caregivers in the room that seem most likely to be exposed if they don’t follow the proper procedures. In our case it was hard to do so as Will would vomit uncontrollably about 2 hours after his infusion but even still our exposure was not even close to being dangerous and much less than what someone working in radiology would be exposed to in a given year.
As you are well aware, all of the money I can spend and all the money that is raised in honor of Will is donated to the Magic Water Project. I've tried to explain what it is a few times, and I'm sure some of you have visited the website.
There is a page 1 story in today's Wall Street Journal about Neil Hutchinson and his wonderful son Sam that describes how The Magic Water project came about.
Dina took this picture the other day as Will zonked out on the floor of his toyroom the other day. We have transitioned into the 'no zone' area of toddler hood and some days are a bit more challenging than others as you know his mood would improve dramatically with a nap. However, he is on a much better sleep schedule and I find that to be healthy for a number of reasons. Ocassionaly he'll take a quick nap or, in this case, pass out on the floor like a drunken sailor.
Will had a fantastic time last night playing in the snow. He 'helped' me shovel and Molly came out to play too. We did not go sledding, but we did in fact make snow angels. He woke up early today but he wasn't too excited for school since, like most kids, he wanted to stay home and play in the snow.
When we got into Dina's truck this morning to go to school he was fascinated by an icicle hanging off the front bumper. He bent down, grabbed a hold of it, and snapped it off. After marvelling over it's appearance and temperature for a few moments he stood up and declared that he was bringing it to school to show his teachers!
I tried to talk him into getting a new one when we got to school since holding an icicle in your bare hands for the car ride isn't a great idea, but he was determined to show this particualar icicle to his teachers. Luckily, he has great teachers and the enthusiasm they showed over the icicle matched Will's.
Will is incredibly excited that it is going to snow tonight. I was walking him in to school this morning and he was dissapointed that the ice/snow cover was pretty much gone and I let him know that things would change tonight. He told me he wanted to go sledding so I think I'll have to stop off at a store tonight and pick up a sled.
I think I might be more excited than he is about the prospects of sledding....although the likelihood of an injury for me is very high. Will is feeling good and I've been having so much fun with him. It is remarkable what a person a 3 year old can be
I awoke this morning to see that the freezing rain last night managed to melt the remaining snow cover so I can now see exactly how many leaves I did not rake. I actually think I'll be doing a few hours of wet/frozen leaf bagging when I get home. Good Stuff!
We received a number of xmas/holiday cards yesterday and some of them were Fantastic! I was surprised at how many of the cards had families with at least 3+ kids. It seemed like for the longest time that 3 or 4 kids was no longer something you would see a lot of. In our neighborhood growing up it seemed that if you had less than 5 it was a small family and only if you surpassed 10 was that to be given any consideration as a 'large' family. It is funny how things change.
Will and Tucker met up today in Yoga class and apparently once again had a fantastic time. After class apparently Will made Yoga Kim take him to "Kristin's" (http://www.kristinsbraintree.com/) for pancakes. Everyone in there is so incredibly nice to Will and they showed up to support him on Friday night at the fundraiser.
Will is very excited about the tree, as is Molly. If you look next to Will's hand there is a gingerbread cookie ornament that Molly keeps trying to lick!
This year, unlike last, Will is much too large and much too heavy for me to hoist him up with my arms towards the top of the tree to place the snowman. I had to put him on my shoulders and wedge my way into the tree so that he could reach.
He and Dina did a great job on the tree.
Once I receive a total from Friday night I will share it with you. Also, if you wanted a Will Power ornament and did not get one I'll have the remainder of the ones that were not sold Friday night at my house by this weekend.
Last night I brought Will up to bed and I was very tired. I ended up getting in bed next to him; I pulled the covers over myself, and very quickly fell asleep at around 9pm. I woke up once at around 11pm and eventually got back in my own bed only to have Will come looking for me at around 4. I woke up in his bed this morning and Dina had to turn the light on and practically bang pots and pans to get the two of us out of bed. That poor kid is starting to exhibit some of my worst characteristics...
I know I shouldn’t sleep in there with him, but for one night it was really quite fantastic. Unlike Dina my snoring apparently does not bother Will or if it does he is simply unable to wake me up to tell me how loud I am when I'm sleeping.
On Sunday Will and I went to pick out our tree so I allowed Will to pick out his favorite. It was a very unimpressive tree...not very big...not very full....and somewhat uneven so when they told me the price I had to panic as I wasn't sure I ever carry that much cash on me! However, Will LOVED it and we brought it up and hung it out of the back of my brother's pickup. We trimmed the bottom, put the stand on it and promptly stuck it on the porch. I was still struggling a bit from a weekend of no sleep and told Will that we had to let it settle on the porch for one night before we could bring it in.
So you can imagine what we did last night when I walked in the door. After moving all the furniture around we ended up putting the tree in the house and then Will accompanied me to the attic to retrieve all of the xmas decorations. From what I understand Dina and Will decorated most of the tree today but when I get home I'll have to hoist Will to the top of the tree to place the final ornamnent. I'll have Dina snap a picture, just as she did last year.
The day I took Will on the train to the commuter rail he spotted the Milk Bottle. I would imagine that 95% of the people who had kids under the age of 5 in the past 30 years that live within 30 miles of Boston have at least one picture of their kids in front of this thing. Will wanted to "go inside and drink it" so I snapped a picture of him searching for the entrance.
"The Friends of Will Lacey" fundraiser on Friday night was a simply great night.
Dina and I arrived and were blown away at what a wonderful job they did in setting up. The entrance to the hall had a table where you could turn in your tickets along with a collage of photos of Will, and another announcing the event with a board to be singed by guests. As we entered the hall each table had a wrapped gift as a centerpiece as well as a frame with a picture of Will.
There as an extremely long table and in the center of it was a Christmas tree which was decorated with "Will Power 2007" ornaments as well as red "Will Power" bracelets. To the right of the tree were the raffle items. You could buy raffle tickets and then choose to put your tickets in either the "For HER" raffle box, "For Him" raffle box, or the family raffle box depending on the kinds of gifts you were hoping to get.
To the left of the tree there were some fabulous silent auction items including rounds of golf at the best courses in the area, a team signed Celtics basketball, Red Sox tickets packages, Celtics tickets, sports memorabilia, and the list went on and on. Dina seemed unusually obsessed with the Tom Brady signed baseball cap...I'm not quite sure why.
The weather just after rush hour on Friday night was terrible, with snow, but luckily that did not appear to impact the crowd as by 9:30 there was still hordes of people flowing in. It was, at times, a near out of body experience to look around a see a room full of people and faces to support cancer research in your child's honor. I'd see some faces, faces I haven't seen in over a decade, and feel overwhelmed.
I’ll try my best to describe my state of mind
First, think back on your life and combine these elements:
-On your wedding day, you tried to squeeze in a thank you and a conversation to every guest at every table.
-Going to a fundraiser in honor of a sick (incurable) child
-Your high school reunion
-Your family reunion
-If for some reason you attended your brother’s high school reunion
Now after you've mixed all those together in one large room, now imagine that you were shot out of a cannon into the middle of that bouillabaisse of events....
I felt incapable of thanking everyone enough and unworthy of such a showing of support and kindness. There were so many people there that I care about and sadly whose friendships have drifted away as I have failed to put in the effort of a simple phone call or email from time to time. To see these people that I haven't spent enough time with over the years to come out and support Will was truly humbling.
Especially when two of these people organized the event.
Luckily, although I feel unworthy...this was in honor of Will and as I've said before he certainly is worthy of such support.
To Rick & Michelle Lockhart, Melissa Kipp and to your families and the volunteers I simply can't express my gratitude enough. Thanks to everyone for an amazing night for cancer research on top of just a fun night out.
There is one story from the night I would like to share.
Someone that I have known since I was very young came in so I went over and said hello. He introduced me to his wife and I thanked her for coming and she told me that we had in fact met before.
Back in September I wrote a post about how you should “Hug a nurse” (http://www.willlacey.com/2007/09/hug-nurse-today.html) after speaking with a nurse at a fundraiser. I promised myself the next day that going forward I should make an effort to say thank you to a nurse. Just like people who work customer service, nurses are on the front lines and deal with all of the fallout from other people’s delays, mistakes, and shortcomings. Therefore they get the lion’s share of people’s anger, complaints, and insanity for things that are completely out of their control on a daily basis.
So a few weeks after that night I found myself out with a few friends and I saw two nurses walk in and sit in a corner. I assumed they must have just finished a shift and a few minutes later I walked over and just said “thanks for doing what you do…”, left them money for another round of drinks if they were so inclined, and walked away.
After they got up they said thanks and asked why I did it. So I briefly explained that Will had been sick for so long, that Dina was pregnant an due in a few weeks and that with all our time at the hospitals I had a new understanding for their jobs and saw firsthand how underappreciated they are.
So of course it would turn out that one of the nurses just happened to be this very same woman.
A lot of this was spurred by the fundraiser that Hillarie’s salon did for Will. It made me question my own spirit, my own generosity, and my own feelings about kindness towards others.
I thought about (and think about) ways to help out people each day with small acts of kindness as a sort of penance for a lifetime of maybe not helping out as much as I could. Such small things like offering a stranger help with a bag on the train, simply sharing a hello and a smile with someone on the street, or saying thank you to a couple of nurses for their career choice. It doesn’t take much, it makes someone else happy, and I find it makes me feel good to at least do something.
That being said…if you were wearing a yellow puffy winter coat, dragging a suitcase, and holding an umbrella this morning over by the Watson library I owe you an apology.
I was on my way to the train…saw this person…and felt compelled to offer a ride. But then I realized that in addition to making me miss my train…it is 2007 and some strange guy offering a woman a ride would probably result in me getting a face full of mace....so I continued on without stopping.
For those of you who are coming tonight and need directions click HERE.
For those of you who are coming and don't have tickets, they will be selling them at the door for $40 per ticket.
To all of you who were working to secure a bib number for the marathon for Jim, thanks for your help, but luckily Jim has acquired one himself.
Thanks to Rick, Michelle, & Melissa (and everyone else that I am unaware of) for doing this!
I am looking forward to seeing so many of you tomorrow night at the Fundraiser for Neuroblastoma research.
We have a house that is around 110 years old and there is some very old wiring,original to the house, as well as some rooms with only 2 outlets. We have 2007 technology and chargers and electrical needs so we have given a laundry list to an electrician who comes to the house from time to time an knocks an item or two off the list. For example, Willl & Evelyn's bedrooms did not have ceiling lights. Last night he finished installing Evleyn's and when I was writing him a check for the work he surprised me. He said to take a 1/3 of the money I owed him and give it to the benefit for tomorrow night. Pretty amazing.
Speaking of amazing, I just received Will's labs from today and was very pleased. He just finished 7 days of chemo today, his 28th cycle of chemo overall, yet ALL of the counts below fell within the normal range. His platelets have not been this high since before MIBG therapy back in January.
WBC 8.51
HGB 11.8
CRT 33.5
PLT 257
ANC 3280
LDH 285
I was reading THIS study and I found this section from the "Conclusions" area to do a very good job explaining the world we find ourselves in as relapsed parents. I hope it helps you to understand why funding research is so important to me.
"Cancer in children is a relatively rare disease with an incidence of 12,500 new cases annually in the United States for children and adolescents under 21 years of age. Multimodality therapy, including intensive combination chemotherapy, results in cure rates exceeding 70%.
However, for many childhood malignancies, prognosis for patients with advanced, metastatic disease remains bleak.
Whereas understanding the molecular basis for pediatric malignant diseases remains a primary goal in ultimately developing specific and nontoxic therapies, the past success of cytotoxic drug combinations suggests that new cytotoxic agents may be identified that will contribute to improved survival rates. However, drug development in pediatric oncology is a relatively slow process due to a paucity of eligible patients for experimental drug trials and good initial response rates to standard agents, even among those patients with advance disease at diagnosis. Historically less than one drug in three evaluated against adult cancers is evaluated against pediatric populations. Further, drugs that may be highly active in patients at diagnosis are first tested in a heavily pretreated population at time of relapse that may not be optimal for identifying active agents."
Will & Tucker once again went to Kids Yoga class this morning and apparently at one point Will received a time out for his behavior. Will was unhappy with this development and was carrying on and crying so Tucker apparently walked over to Will and patted him on the shoulder telling him that it was OK and that his time out was almost over.
These two kids are priceless.
Each day it seems to get slightly more difficult to get Will to listen as well as I would like....I'm thinking this may be a harder age than the supposed terrible 2's. In any event, we'll keep setting the boundaries and one of these days hopefully Will is going to stop intentionally crashing though them.
One more picture from Will playing in the leaves with the sunglasses he found in the garage. By the way, those leaves are now covered in snow and ice...guess I should have bagged them when I had the chance.
Will was exhausted last night and when I got home he wanted to go to bed at 6pm. He fell asleep in my lap while reading only the second book of his bedtime routine at about 7pm.
Let me tell you, having a 54 pound human being fall asleep on your lap creates an interesting dilema. How does one get from a seated position into a standing position with an unconcious and large person collapsed in their lap?
I managed to stand, hold Will, and shuffle across to his bed before tossing him like a sack of potatoes onto his pillows. He opened his eyes for a brief moment before falling back to sleep. I'm horribly out of shape so I'm surprised I didn't pull something.
I have one more mustache update, and then I promise I will never speak of mustaches again...I was so full of righteous indignation last night over what I perceived was an unfair (and rigged) contest that stole away my 'stache cash. However, as I was preparing for bed late last night I checked my email and learned that the winner of the prize, Mr. Cosgrave, had gone ahead and donated his winnings to the Magic Water Project!
Apparently, after shaving of his mustache he came to his senses!
I guess, for a moment anyway, I'll have to rethink my position and state that mustaches are only 99% evil since this 'stache cash has actually ended up doing some good.
Sorry...I have to get this off my chest. Our friends the Cosgrave's have a Christmas party most years and this year was no exception. The one wrinkle to this year’s event is that one night, while out having a few post-thanksgiving celebratory drinks; someone came up with this idea.
Why not award a large cash prize to whoever showed up with the creepiest mustache at the Cosgrave's.
This makes perfect sense.
I'm unsure how it is with other groups of people, or in other parts of the world, but as far as my friends and I are concerned it is hard to imagine anyone of us turning up one day and suddenly having a mustache. It would be like suddenly wearing a top hat, or speaking with a british accent. It just wouldn't be done.
In any event... the prospect of growing facial hair for a week and then shaving just before I left was troubling. Growing a mustache goes against everything I stand for?
Well, I wasn't about to back down to the challenge so I forged ahead, got into my car, and went to the party (and Dina was yet to notice).
And what did I discover when I arrived?
Only 2...that is right....2...of the 5 contestants actually showed up with a mustache. And the other contestant who did had attempted to draw attention away from his mustache by having a few days worth of beard growth to offset his 'stache.
I was appalled.
The host of the party had grown a goatee and only after seemingly all of the guests left did he finally go upstairs to shave....and he looked so spectacularly creepy when he came downstairs that he was the landslide winner.
I personally felt that since he never left his house with the 'stache, and waited until all of his guests had left before he had the guts to shave that he should have been disqualified.
However, the sheer creepiness of his mustache overwhelmed the remaining partygoers and my complaints went unheard. (also...I'll never think of him quite the same again...he looked quite insane.
When I explained my plight to my darling daughter Evelyn she simply closed her eyes, nodded in agreement, and raised a single fist signifying her solidarity with my stance as I so vividly captured with this picture here.
When Will saw me, he pointed, screamed, and made a gagging sound as he said "uggh...mustache". Never in my life did I think I could be so proud of him!!!
Will, Evelyn, & Molly sat still for about 3 seconds....briefly after this photo Molly started hamming it up for the camera and we quickly lost the potential for a good photo. When I woke up this morning at around 6:45 Will was wedeged in between Dina and I, Molly was in the bed at our feet, and Evelyn was cozily sleeping in the bassinet just next to Dina. I was tired, but quickly I was filled with such a feeling of warmth
Everything felt RIGHT.
Do you know what I mean by that?
Have you ever had something just feel RIGHT...I can't articulate it any better than that. It is not that the rest of the time I have a feeling that anything is wrong but at certain moments you are so assured that THIS is how it is supposed to be, and for that brief moment you are able to experience all that is great about life.
If I had to put one word to that feeling I think it would have to be PURPOSE.
I woke up this morning, I was tired, but suddenly my mind turned on a dime. I simply noticed that the room was filled with my wife, my son, my daughter, and my dog and I was filled with this feeling.
It had an amazing impact on my morning as I practically floated to work today and as I floated onto the train I received an email from Will's oncologist that further bolstered my day.
I have never had a more pleasant and enjoyable walk in the wind and rain across the Fort Point channel than I did today. The rain and wind seemed almost a joyous thing, a celelbration of life, and that is certainly not something I'd imagine many people were feeling this morning on their way to work.
I'm so very happy I had that feeling, even briefly, this morning.
11/30
VMA 6.5
HVA 12.8
10/8
VMA 9.8
HVA 19.6
VMA and HVA are catecholamines that are measured in your bloodstream and there is a normal range based on your age that should be detected in your urine. In 90% of Neuroblastoma cases this number will be elevated. So, this is a nice non-invasive marker that, along with scans and blood tests, help to create an overall murky picture for you to look at in order to guess what is going on with your cancer.
Not all of these markers are great on their own, and some are not very indicative of disease stability/death/progression. For example, LDH is a blood level that can be a good marke for some kids...it hasn't been for Will. Urine has been an ok marker, along with scans, to give you a sense of what may be happening.
It is a bit like reading tea leaves, but it at least helps to make you feel that you may have a sense of what is going on.
So, the fact that Will's last CT scan was abmiguous about one spot of disease was cause for some concern. His LDH coming back in the normal range wasn't a big help, but if it had skyrocketed it would have been concerning. Now that his urine levels have come back this morning and they are the LOWEST they have ever been (that is good) it helps to sway the mental tide of momentum back in the direction you want it to be going as a parent of a 3 year old with 'incurable' cancer.
