Babies & Puppies

Evelyn is obsessed with standing at the front storm door and staring out. We had to put the gates up to keep her away from there but she loves it. One night Evelyn was standing there as I came home from work and beating the storm glass repeatedly in excitement over seeing me park my car, followed by Molly running out and jumping up and down to excitedly great me as Will came running to the front door gleefully screaming DADDY! This went on for about 4 or 5 minutes one night after work as I rolled around on the ground with my kids and dog. I can say that this was unequivocally the single greatest moment of my life.

Will has been watching Jon and Kate Plus 8 and asking Dina for another baby. I also recently bought a few children's books written by a coworkers wife. Will enjoys the Yellowest Yellow Lab and when combined with his visits to the pet store he also wants another dog for Molly to play with. A yellow lab puppy and a new baby would have 5 people and 2 dogs in our house and would most likely lead to at least one nervous breakdown on Park street. I think we need to ban all books and TV from our house for a few years.

Speaking of television Evelyn is just over 3 weeks away from her first birthday and still has not watched a single second of TV and I think that is absolutely fantastic. I think about how many concessions we had to make, rules that were tossed out the window, and unimaginable quantities of poison that we have put into Will in order to make his survive. It is such a difference to raise an infant through her, nearly, first year of life without having to be forced to make such decisions.

Will's best buddy from VNA who comes to the house every Tuesday to draw his labs called in sick today. Unfortunately the nurse who covered for her was unsuccessful in drawing labs after two needle sticks so Will became upset but was soon calmed by the promise of two pieces of candy corn. Dina is simply making arrangements to have his blood drawn tomorrow at the Tomorrow Fund clinic at Hasbro Children's hospital in Providence.

Will is feeling better but we kept him home today all the same.

Sick Day

Today is Will's first sick day of the 2008-2009 school year as he slowly developed cold like symptoms starting on Saturday afternoon and into yesterday morning. I'm hoping his mouth issues and general uneasiness this weekend is related to his cold this morning. Evelyn also has a cold and I feel the irrefutable symptoms that by days end my nose will join the ranks of the running. It seems like I have had a cold, or am just getting over a cold, for the past few years and it is getting old. He did not feel great yesterday when he woke up. He had spent the entire night tossing and turning and moaning and crying in his sleep. I'm glad he turned up sick yesterday otherwise his tossing, turning, and general behavior would have had me looking to much darker places for a cause.

Will & Evelyn had a visit on Saturday afternoon from a former Braintree and current Nevada resident named Mike Dean who is organizing a golf tournament to benefit the MagicWater project. Mike had also given Will & I tickets to a Red Sox game earlier this year and he has been following Will's story for about a year now. In spite of the fact that this was the first time we had met he had committed to taking on this effort to help Will & kids like him. People never stop amazing me.

Will stuck around the house all day yesterday and we'll keep him close to home again today as he just isn't himself. The other day Will and I were walking and I stated that I could smell natural gas and Will blurted out "it wasn't me". When I finished laughing I explained to Will the natural gas pipeline and delivery system and how that is what we used to cook with, to heat the house, and to make our water hot. I’m not sure it registered correctly.

Will is most likely going to be out of school again tomorrow (don't want to get anyone else sick) and then he is back down in Rhode Island on Wednesday to start his 4th cycle of this therapy when he will get his chemo. We did not have labs done last week so I'm curious to see what his counts are tomorrow with the week off built in. He isn't having too much trouble taking his pills and his 'off week' means that he misses on week of vinblastine and rapamycin but he still takes his Celebrex and Lovastatin every day. We'll do cycles 4 & 5 before scans again in Vermont in about 7weeks time (the week before thanksgiving).

Dada

Will is complaining of some mouth pain again but it does appear that he bites the inside of his mouth on both sides. He went to bed a bit 'off' tonight so we'll see how things go tomorrow. He seems a little upset with me for being away and he was a little too aggressive with Evelyn tonight.

Speaking of Evelyn...in the video below, right before she walks to me, she says 'dada'.

$4,000

Here is Will playing the guitar and singing a song about his classmates from last year.




The email below was sent out from Marc regarding the memorial golf tournament he organized. The proceeds of that tournamente are going to be donated to MagicWater and this was accomplished in less than 4 weeks time, a pretty impressive accomplishment. Thank you to Marc and for everyone who participated on Wednesday to honor Jay and support MagicWater.

---------------------------
I wanted to provide a quick update from yesterday's First Annual, Jay "Big Daddy" Nickerson Memorial Golf Tournament. We had just over 30 players, who enjoyed a fabulous fall day at Granite Links Golf Club. Biggs would have thoroughly enjoyed the festivatives.
Our first place team, with a score of 9-under par, was Molecular Insight Pharmaceuticals. Teamsters Local 25 posted a score of 4-under par and placed second. The winner of the Big Daddy Longest Drive was Tom Connolly and Corey "Caveman" Appel eked out the closet to the pin contest.
I am very happy to announce that with your support we were able to raise over $4,000 to support The MagicWater. We accomplished this in less than four weeks, which is pretty amazing.
I also would like to announce that we have a date for next years event Monday, August 17th. My goal for the 2009 Jay "Big Daddy" Nickerson Memorial is to have a full compliment of 144 players and raise over $12,000 for The MagicWater Project.
I'm confident that with your help we can meet and likely exceed these goals.

Golf tourney

Evelyn likes to mimic her mom with her toy cell phone as pictured here. I was out of town for work and just got home and Evelyn is cruising all around the house and Will is out and about with my parents. The last I heard he made my parents take him bowling and I'm guessing that right now he is eating dinner somewhere and I'm pretty sure that cheese is involved.

Since I was out of town I missed the golf tournament yesterday but I heard that the weather was great and the everyone had a good time. When I get a final total from Marc I'l be sure and pass it along. Thanks to everyone who came out to support Marc & his efforts to benefit MagicWater.

Late night adventures

Above is Evelyn digging into Will's basket of toys in 'his/their' playroom.

Last night after I got home from work and had dinner and it was closing in on Will's bed time. However, I had explained that a local barbershop was open late on Monday nights for Monday night football after he noticed a giant inflated football player in front of the barber shop. So we headed across the bridge so that Will could get his hair cut since he claimed it was "all crazy and sticking up on top". I sat and watched and had a few laughs and then when Will finished he explained that it was my turn so I sat down as he ate a lollipop and checked things out.

When we got back it was late and it was dark but Will stated that he wanted to go for a walk. We headed up Park Street when he decided we should walk to "On the Run" to see if it was open so he could buy some green Gatorade. This is the convenience store at some Mobil gas stations and it recently opened up near our house. On the walk back we stopped and sat on the steps of St. Thomas Moore so Will could take a quick rest and have a sip of his drink. Suddenly he looked back at the church and became frightened. The reason he was scared was due to the "pointy thing" on the top of the building (the cross). When I asked why that was scary Will stated the he was concerned that the moon could get got on the cross when he flew overhead. I'd like to thank Carolyn Curtis, the author of "I took the Moon for a Walk" for making my son scared of the cross, or as he calls it, that 'pokey thing'! The video below is from last night in front of the church.



We talked about it on the way home and Will felt better after he realized that 'our moon' doesn't have legs or feet like the boys moon in that book (click here see what the moon looks like). I think he felt confident that since our moon lacks legs there is little chance that its feet will be caught on the pokey thing.

We called Uncle Carl and Aunty Bridget on the walk home since we knew the kids where asleep. We popped in to their house for a few minutes to say hello (and Will had a cookie) before heading home. When we finally got home Evelyn was fast asleep so I asked Dina to unlock the back door for us so we wouldn't wake her up coming in the front door. When we were in the backyard Will spotted the tent we had set up the day before when he claimed that the wanted to sleep in it. That never happened, and I did not put the tent away, so last night he decided (at that late hour) that we'd sleep in the tent last night.

So we headed into the house and grabbed some blankets, Molly, and a flashlight and headed out to the tent. We lasted about 30- 45 minutes, including a visit from Dina & the baby monitor, before we finally headed inside. We played funny faces with the flashlight; we took videos with the recorder (too dark); and took pictures with the camera phone. I've never camped out before and was amazed at how warm a dog, myself, and Will could make a 2 person tent on a cold night like last night. When we got inside Will was happy to get into his bed but did not fall asleep until we dug out "I took the moon for a walk" and read it one time before he started snoring, hopefully with his newly discovered fears of the cross having been allayed by another reading of the story where he figured out that the ‘boys’ moon was very different than ‘our’ moon and that the cross was not going to knock it’s shoe off.

Here are some of the tent pictures. (I've never been camping before and was surprised at how warm a 2 person tent can get on a cold night.)

A visit from Dina in a frog blanket



Will pretending to sleep



Molly trying to sort it all out

A binky fairy, a restraining order, and creepy mustaches

I promise to get back to taking, and posting, more pictures starting tonight.

It would seem that Will's week off of Vinblastine (IV chemo) was well timed as he was rather tired on Friday and Saturday. On Friday he crashed out late in the afternoon and ended up staying up until about midnight on Friday (YAHOO!). He then woke up at about 6:30 on Saturday morning so he once again crashed on Saturday. We were going to our friend’s house for dinner but Will was so exhausted he eventually took off upstairs and collapsed. I went to dinner with Evelyn and then brought her home for her last feeding and Will was awake so he and I went back over with him as Dina took turns camped out with both kids. Luckily, he broke his late nap & late night cycle last night so he should have a good week at school.

I told Will again that the binky fairy was coming and we sat in his bed and tried to come up with a plan to thwart her. I said to Will that we'd have to trick her but that she was pretty crafty so we'd have to give her something good. Will thought for a moment and then suggested that we leave her five dollars. I laughed and told him that the binky fairy didn't trade in currency.

Instead we left his ‘back up’ binky on the stairs so that when she came into the house she'd think that he had accidentally left it there and that she would take it and never return. He agreed that it was a good idea.

In the morning when he went downstairs he discovered his binky still on the steps except that the part that would go in his mouth had been violently removed. It would appear that the binky fairy was on to our ruse and would be back to get his real one. We are going to have a strategy meeting tonight after work to come up with some contingency plans but I told him to be prepared for the worst possible outcome as it relates to his future with binky's as the binky fairy is a determined foe that is not accustomed to losing. In theory he seems prepared for this but in practice it is going to be an issue.

We are closing in on Evelyn no longer having a binky (she is 11 months old today) and I just can't let her get rid of hers before Will gets rid of his. He desperately needed his through all of his hospital time as an infant (otherwise he'd be sticking something germ infested into his mouth) so he became really attached to it. When your infant/toddler is in an outpatient clinic it was either binky or common area toys that would be in his mouth so we selected binky. We are well past that now but the attachment is so strong for him and was a good soothing tool when appointments ran long and patience was running thin when he was tired or sick from therapy. However, he is four years old (and a VERY large 4 year old at that) so it is time to go. I just need to figure out what the binky fairy will leave as her magical present in place of the binky that will be transported off. Will said that he believes the binky fairy carries a yellow basket that she places all the binky’s in from every kid’s house when she leaves a more age appropriate toy in its place.

Will had his sports class yesterday and this week they covered basketball. Nothing is funnier than a bunch of 4 and 5 year olds working on bounce passes, chest passes, dribbling, and attempting to shoot. Will continues to throw himself on the ground and into the padded walls 75% of the time. Yesterday afternoon I drove him down to the Pilgrim arena in Hingham so he could see the 3 hockey rinks and decide if he wanted to learn to skate. He had shorts and short sleeved shirt on and brought along his little plastic hockey players so he could show them the rink too. He loved it and in spite of the shivers he did not want to leave the rink where there was a teenage game taking place. I have a feeling we'll be spending a lot of time at local rinks watching games. He wants to learn to skate so we are just trying to sort out a schedule that will work so we’ll take a look at our options.

I went to the dentist this morning and they want me to wear a guard on my teeth (an NTI). From what they saw when looking in my mouth I apparently have been grinding my teeth. This would probably explain the jaw and mouth pain I have been experiencing. The next statement was that grinding your teeth is usually stress related, was there perhaps some added stress in my life lately that could be leading to this? I had to think on that for a few minutes...I am giving a presentation this week at a conference. Perhaps that is causing me some stress? That must be it..presentation stress…I can’t think of any other factors.

I have to go back in for a 'fitting' so hopefully this will help as I didn't realize how uncomfortable this was until I realized it could go away. I've been so tired, stressed, and angry about Max lately that I'm trying to get myself turned around into a productive positive person again and it is proving more difficult than I would like. For example, I’m flying out Wednesday morning yet I managed just today to make a follow up dentist appointment on Wednesday morning. How’s that for some solid distracted short term memory loss? I’m glad I don’t drive to work anymore.

So, what is "Friends of Will Lacey", that image of pictures on the right hand side of this webpage?

It is a community where people sign up and can learn about fundraising events, offer suggestions on things, get involved, or simply stay informed. Some people have joined and then felt empowered to do something to help. How?

Marc's golf tournament to benefit MagicWater is this Wednesday.

Jeanne decided to have a Yard Sale this Sunday September 28th at her house in Braintree with the proceeds to be donated to MagicWater. She just set up the event herself and decided to go ahead and do it. My brother has an event planned for the Wednesday evening before Thanksgiving and my cousin and her husband are sorting out the detials for an event for this fall as well. (Details will follow once they are finalized.)

It is great to see people taking this initiative since having the time to properly manage projects is something I'm sorely missing lately and this initiative is appreciated. You don’t have to do anything, or volunteer, or run an event. Simply providing feedback to questions like this ONE can be very helpful.
NOTE: I am a proponent of a ‘Mustache Night’ as a fundraiser people could set up and host. The idea being that people volunteer to grow a mustache and show up at an event and be judged in different categories such as “Fullest”, “Creepiest”, “Most disturbing”, “Most likely to get you in a police lineup”, “Most Villainous”, etc….

This was inspired by Mike’s spectacularly creepy mustache that he unveiled at his Holiday party last December. I still think it is a good idea but it does make me slightly uneasy as well when thinking of what the winner of our contest looked like. Please share your thoughts so we can get started on a few ideas and see what one is going to be the easiest for people to do.

When Dina dropped Will off at school today he was overjoyed to see his favorite new classmate since she was out on Friday. Will got right in her face and told her that he missed her last week and he was so happy that she was here today. I'm sensing a restraining order in Will's future.

Time for a visit

This picture was taken a while back that I was recently sent and these are some of Will's buddies. Kevin and Jessica, and Mike and Sue, are people we’ve been friends with for a long time so our kids are friends. Somehow, 40% of the people pictured in this photo are currently receiving chemotherapy. Tell me how that is even possible? Somebody run down the odds on that one for me because I can't comprehend it.

Did I mention that Will is once again taking swimming class? He has his Tot Gym class at the Weymouth club on Sunday mornings; he then has swimming on Mondays after school. On Thursdays Dina enrolled Evelyn in a music class that takes place while Will is in school. We are starting to sound like a normal family with multiple kids with all these 'things' going on. It certainly is keeping Dina extremely busy and I can't wait to hear about Evelyn's class today as she loves music.

David Ortiz, Big Papi, of the Red Sox wears #34 and Will loves to comment on this all the time. For example, this morning I was making Will some pancakes for breakfast (sorry Margot but I use Bisquick) and he pointed to the glass measuring cup and said "That's Big Papi". It took me a second to realize he was pointing at the 3/4 cup line on the side of the measuring instrument. He was also confused as to why a football player was wearing #34 during the Patriots game because he said "That's Big Papi's number". The thought process for kids is too funny. Will still finds it impossible for anyone other than him to have Yellow as their favorite color....all of these things are singular events...which is interesting.

Will has been asking more about his port and his medicine so I think it's time to have a discussion with him. He was asking Dina if she had one and he is ready for some information. I try so hard to limit any anxiety and I certainly don't want him thinking he is any different (better or worse) than any of his friends or classmates. He has endured so much, and done it so well, because he has been an innocent infant, toddler, and now preschooler during his treatment and doesn't posses the 'grown up' ability to feel sorry for himself, to get depressed, and to ask 'why me?'.

In addition to the fact that kids are so damned resilient to start with, I believe the inability to grasp larger concepts helps prevent these kids from getting into a bad place mentally and impacting their health in a negative way. Would it even be possible for a toddler to mentally ‘give up’ on their treatment and resign themselves to death like an elderly cancer patient might? We’ll slowly start talking about it, but I will do so matter of factly.

"Why do you go to the doctor all the time and get special medicine? Well, you know how some kids can't eat peanuts? You know how others have an inhaler? We'll you've got something on your spine called a tumor. The doctors like to give you some medicine for it. This makes sure that you can continue to run really fast, play with your cars, go to school, play on your swing set, and other fun stuff. This just keeps it feeling good, sort of like a band aid on a cut. No big deal."

I think we'll leave the words deadly, incurable, metastatic, and painful out of our discussions. If he has to learn about those words those lessons will be sadly taught 'the hard way' and I find no need to introduce things to worry about into a 4 year olds mind.

I've been stumbling through the last few weeks with blinders on. There is certainly some wreckage in my wake that I’ll need to address but for now I just want to get through this exhaust infested tunnel and out into the fresh air. This is what happens to me when there is too much stuff grazing in the pasture and I haven't paid it a visit.

Evelyn is doing very well and Will is happy and with his reduced drug dose he is feeling much better. This is all that matters.

Wednesday Enrichment program

Will's clinic day is Wednesday which works out nicely since he is back at school and Wednesdays is his only day off. We went to an open house at his preschool last night which was pretty funny because Tucker has the same teacher and classroom but he is in the morning session. So my brother Carl and his wife Bridget where there and we got a chance to meet the other parents of Will's classmates which was great. Dina is committed to helping out the PTA this year and last night they discussed the Wednesday enrichment programs.

The school has a pretty good website and each Wednesday, the off day, there is a different activity for all the kids. Today was "Back to School Party Featuring the Bubble Man!" and each week they have some great things including, hopefully, the amazing Yoga Kim.

Will has his own "Wednesday Enrichment Program" which involves a nice relaxing drive to Providence to have a needle placed in his chest and chemotherapy to be administered. One good thing is that with the newly built in "week off" of IV infusions that means every 4 weeks Will does not have to go to RI and can go back to his old yoga class or participate with his weekly Preschool enrichment program. He has next week off so that is a good thing especially in light of his labs below. This built in week should help keep him feeling good and avoid his counts getting too low. I haven't mentioned it much (I've been in a fog) but this lower dose is has created a much better quality of life.

WBC 5.7
HGB 10.5
HCT 29.3
PLT 226
ANC 1938
BUN 10
AST 26
ALT 26
LDH 231

Last call....

Marc has filled the majority of the spots for next weeks golf tournament.

However, there are still two foursomes available so if you are interested the details on the tournament and how to contact Marc are below. Unfortunately I am travelling for work that day and will not be able to attend but it should be a good day for all since the 10 day forecast shows it to be a sunny day and 69 degrees and we all know that the 10 day forecast is NEVER wrong.

Note: All proceeds are going to be donated to MagicWater.

Event Details:
Location: Granite Links Golf Club, Quincy, MA
Date: Wednesday, September 24th
Time: 10:00AM
Cost: $225 per player
Format: Scramble
Food: Post-golf Cocktail Party

Prizes will be awarded to the top teams along with "Closest to the Pin" and of course the "Big Daddy" (longest) Drive.

Email: marc.mallett@fmr.com
Phone: 617.320.8692

Pediatric cancer enthusiasts

Will apparently has his first crush on one of his classmates. He has been talking about her all morning to Dina and he kept talking about how nice her flowered shirt was yesterday. This morning he picked out a shirt to wear and said “she is going to love my football shirt”. When Dina brought him to wait for class he kept asking where she was until he finally exclaimed “THERE SHE IS!” and he proceeded to sit on the bench next to her while babbling in his uncontrolled, fast talking, excited manner. When it was time to line up and stand with your partner to walk into the school Will tried to hold her hand and then shot a dirty look at his teacher when she told Will to go with his assigned partner. He nearly cried when he couldn’t hold her hand. Too funny!

I have read many times, and written myself, that parenting a child with cancer can be like a rollercoaster. I was sitting in bed trying to get to sleep last night and for some reason was thinking about that and I realized that it is absolutely absurd.

Why you might ask? Well lucky you! I’ve got your answer right here.

Rollercoaster’s are rides that people choose to get on and they are located at places that are called 'Amusement parks'.

While these rides can, at times, be terrifying and cause people to scream there is an adrenaline rush and joy experienced from this ride that makes the person want go stand in a line and do it again. (Note: I haven't seen any people lined up outside any of the 5 pediatric oncology clinics I have sat in that were trying to sign up their kids)

While a rollercoaster has ups and downs, and cancer parenting has unexpected turns, there are not other similarities that I am able to draw.

-Roller coasters have ‘enthusiasts'.
-Roller coaster rides only last a few minutes.
-You choose to get onto a roller coaster.
-If you are terrified it ends pretty quickly and you don’t ever have to get on again. Ever.
-Roller coaster rides result in euphoric highs.

-Cancer parenting does not have a group of enthusiasts (I hope)
-Cancer parenting, in my experience, does not posses and euphoric highs (unless you count quick hospital visits)
-Cancer parenting started for us 3 years and 6 months ago and thus far the ride hasn’t stopped.
-Regardless of the outcome we are never getting off this ride.

So...I need to come up with a different analogy because the more I think about this one the more I realize it is completely wrong. All I could come up with last night before I fell asleep is that 'relapsed cancer parenting' is more like having a chronic GI bug with a fever, diarrhea, and vomiting.

The bad times have you on the toilet while also retching into a trash barrel...the good times are the 25 minute breaks when you lie on your bed and take your temperature while waiting for the next wave to hit.

While this paints a rather bleak picture I think that is a more apt description since people would never pay admission to an amusement park for the privelege of getting a GI bug or the ultimate door prize of their kids getting cancer. However, people do seem to love their amusement parks.

8 baby steps

About an hour after I got home I took this video. On this you get to see how excited Will is about sharing his toys with Evelyn, followed by her "quick excited crawl" when she spots me that is cut short when she hears/sees Molly drinking in her bowl. At this point Evelyn walks over to Molly's bowl to try and drink her water hence the quick ending as I try to keep her dry.

Note: Normally I'd comment on how Evelyn is walking and she isn't 11 months old until next week and Will didn't walk until he was 13 months old. However, Evelyn has an older sibling to model herself after. Also, Will had 8 cycles of chemo, multiple surgeries, an ICU stay and various other fun things to keep him occupied from 7 months onward so I'd say they are even....

First steps

While not pictured above Evelyn did in fact take her first tentative steps this weekend (4 to be exact) before falling face first onto Will's belly while in the midst of a dad & kids wrestling match on the floor. She is an absolute crack up and loves to 'mix it up'.

Will had fun in his class yesterday as the sport in question was soccer. From what was on display yesterday I have the feeling Will very well may end up being a goalie since he enjoys diving onto the ball, into the walls, and onto the floor more than kicking the ball. He really wanted to just run the whole time and needs to work on his ability to 'wait his turn' as they were doing dribbling drills and Will was just running after his ball and diving on it instead of waiting in line. I found it entertaining...

On Saturday there was a safety day at the high school that Will and I went to. They had trucks to climb, games to play, free food, and a K-9 unit demonstration that Will loved. Two police dogs took turns taking down a man in one of those (hopefully) bite proof suits....and in spite of the fact that Will probably had nightmares related to this...he expressed enjoyment over it. Of course, before we left Will needed to score a popsicle (purple) and have his face painted (a lion as seen below).



Cancer parenting tip of the day:
Next time you are booking a November trip to Disney be sure not to wait until September 15th to make your reservations because the hotel will be full. Sure, there are scans and treatments to consider and you try to book the dates to ensure you can actually make the trip but that is why they invented travel insurance.

I know that I have expressed this feeling before but it is just so hard for me to grasp how Max is gone yet the sun still rises, people still go to work, and life continues on without the public outrage, shock, horror, and ACTION that should result from the loss of a seven year old boy. There is an empty seat in a 2nd grade classroom in a San Diego elementary school that Max should be sitting in today.

Where is the outrage? The action? It is just so hard to comprehend.

45 minutes

Another first day of school photo...can't you see just how excited he was?

Dina has signed Will up for an 8 week class that meets at 10am on Sundays. It is an introduction class to various sports for 4 and 5 year olds (tee ball, soccer, etc..) and we know that Will is going to absolutely love it. Dina informed me that a parent needs to stay in the building during the 50 minute class so I am equally excited about this program since this means 45 minutes where I can drink a coffee an read a newspaper.

Most people in Texas are making preparations to evacuate, or board up their homes, or look after loved ones this week with Hurricane Ike headed their way. However, cancer doesn't the day off just because a storm is headed your way so parents are forced to figure out a gamelan for what do about their kids treatment. Kids like HANS.

In other Texas related news Erin and family are home after their weeklong inpatient spa experience and I'm hopeful that she isn't to sad to be home...

I’m really looking forward to getting home to be with my kids today.

Up the stairs and back at school

Here is Will walking into his first day of school on Monday. For those of you who attended Braintree High you'll recognize the prison like facade of the school in the background through the trees. The preschool drop of/pickup is in the back of the school where the classes are located on the first floor. I think Will is the only kid who brings a backpack to school that they could actually also use as a two person tent in an emergency.

Will obviously doesn't feel in tip top shape today so we are giving him some medicine to help take the edge off. It will hopefully make a difference in how he does at school today. When he is feeling off (or tired) he gets a little fresh and tends not to listen so I'm curious to hear from his teachers.

In addition to all the meds he takes we are also giving twice a day Tylenol and extending his zofran in an effort to allow him to feel as close to normal as possible and enjoy his time in school.

Below is Evelyn after crawling up the stairs for the first time ever and getting her hands on Will's pillow.




Dina just called and told me that Will wanted to pretend he was waiting for the bus this morning so he sat on the front steps and did not have an issue going into school (he was ranting this morning about not wanting to go before I left for work).

Labs and pills

Will tried taking two pills at once yesterday....it didn't work out so well.



Labs from this week:

WBC 7.2
HGB 11.2
HCT 31.6
PLT 213
ANC 3074
BUN 18
AST 30
ALT 26
LDH 305

Special medicine

Will went down to RI today for his vinblastine and tomorrow should be a good test if this lower dose is helping him feel better since he has school tomorrow. Will's ANC was up over 3,000 and I'll post the rest of the labs when I get them but he still weighs 58 pounds and is 3' 8.5" tall. The video posted below is rather unremarkable other than to give you a look at what our house is like all day. You can't see Will during this whole video but you catch glimpses of him stomping on a pile of clothes and (at 44 seconds in) coming into the frame to steal a box from Evelyn only to throw it away.

He is like this from the time he wakes up until the time he goes to bed and I thought if my words don't make it clear this might help illustrate why we are always so tired. The other part of this video is how Evelyn is working on some of her dance moves.



I'm going to try and capture more and more video footage if we can since we have so little. To get enough it needs to be easy so we bought this...it is the size of a phone and easy to carry and can capture up to an hour of footage. You copy the data to you PC, and charge the camera, with a built in USB connection and I hope this will allow us to capture more video.

Last night Dina put Will up to bed and he turned to her and said “I don’t want to go to Rhode Island tomorrow”. Dina said that he had to go so we could see the magic doctor (Dr. Forman does magic tricks) and he could get his special medicine. He wanted to know why he had to get special medicine and then he asked why he can’t just get it at clinic (Dana Farber). Since we don’t even know why he can’t get it at clinic it is a hard question to answer. So Dina said that only the Magic Doctor has the special medicine for Will.

I hope this is an isolated issue and that this does not build week over week until it becomes a real problem. No one likes to be at the hospital but we certainly do the best we can to remove as much anxiety and stress as possible for our weekly trips.

First day of school

Will started his second year of pre-school at the integrated program at the High School today. Unlike last years 8am start time this year Will is doing 4 days a week from 11:30 until 2pm and the video below is from when we picked him up today. He does this every day when he gets picked up and quite frankly it never gets old.



Last year I was able to drop him off each day at 8 so I'll miss that this year. I was fortunate enough to have been able to attend Max's Celebration on Saturday. It was a wonderful tribute to great kid who will be missed so dearly by everyone whose life he touched and enriched in his 7 years of life here on earth. It was a wonderful tribute and Deb has photo's posted here that truly capture what a special day it was.

Squishy, peaches, and McQueen

I took this picture when we had a 'family picnic' that Will arranged for us last weekend.

I am going to be out of town for the weekend so I ended up not attending last nights "Friends of Will" meeting to spend some time with Dina. However, from what I have been told it went well and the next meeting is taking place on October 6th in Braintree and the details are HERE.

WCVB in Boston did a nice story (click HERE to see the video) on their newscast last night highlighting Will, MagicWater, and the donation of billboards that Clear Channel made. We are hopeful this can help lead to more DONATIONS to MagicWater so that we can provide doctors with the resources they need to hopefully save Will & kids just like him that have run out of options...but not HOPE.

Will started his 40th cycle of chemotherapy this week and we have added his 4th tumor directed drug to the mix. Will has his own names for all the medications he takes at home and I wanted to share the nicknames with you.

Celebrex - Will calls this pill "Squishy" as it is a capsule and when he squeezes it in his fingers (twice a day when he takes one) he says 'it’s squishy'
Rapamune - This is a small white pill that sort of looks like a Chiclet and will has named "Tasty".
Flouride - Our town does NOT fluoridate the water supply so Will takes a fluoride pill each day because we are going to cure him and when he grows up he'll need flashy white teeth to impress the ladies. He calls this pill "peaches"
Colace - Will went from one alkaloid to another and side effects from these chemotherapeutics include constipation. So Will has take a daily stool softener since June of 2007 and it had been a terrible tasting liquid twice a day 'hidden' in his milk. We recently switched to a small red capsule once a day and he hasn't named this one yet but it is the best thing that has happened to us as the old version was always a struggle. We call is the 'little red ball' for now.
Lovastatin - this is the new addition to Will's anti-cancer treatment this week and it is a small pinkish pill so Will calls this pill "Pinky"
Bactrim - Will takes this oral liquid medicine twice a day 3 times a week and has been doing so since March of 2005. Oddly enough he thoroughly enjoys this medicine hence the name "YUM!" (Seriously).
Vinblastine - this is the weekly chemo Will travels to Providence to get and he calls any IV drugs "his medicine".
Labs - when Will has his labs drawn (weekly seemingly forever) he used to say that they were taking "McQueen" or "Murray". McQueen is a reference to the color of "Lightning McQueen" from the Disney movie Cars who is also RED....or "Murray" being the color of the shirt (red again) that Murray the Wiggle of "Wiggles" guitar playing fame wears. When he used to get transfusions we'd tell him he was getting some of his "McQueen" or "Murray" back.

Randome tangent...in reference to Will's labs this is how he discovered his favorite color in the world...Yellow. When Will has his port accessed for any reason he doesn't make a fuss but he obviously wants the needle out. The last thing that the nurse has to do before she can remove the needle is flush his port with Heparin. The heparin is in a syringe much like saline but it is different in that the label on the side and the cap securing the end is Yellow. So when the yellow syringe was pushed into Will's chest he knew it was the end and that the needle was about to be removed and he would let out a celebratory "THE YELLOW!!!" when it was getting pushed into his chest and thus his lifelong affinity for the color yellow.

He does not have a nickname for Tylenol or zofran at this point so I don't think they'll ever get one.

Meeting tonight and a request

It is shocking to see that next month Evelyn is going to be a year old.

The meeting details for tonight can be found HERE for anyone interested in attending.

The future President of the United States, Miss Erin Buenger of Bryan Texas, showed progression on her scans last week. So today Miss Buenger has checked into the hospital for a one week stay where she'll be receiving a weeks worth of chemotherapy. Erin is an incredibly positive, energetic, wonderful young lady who plays soccer like a professional and cooks like one too. I thoroughly enjoy reading about her adventures and know that a week inpatient is the last place on earth she should be.

If you could be so kind as to click HERE and see a request she has for this week it would be a wonderful thing you could do for an amazing young girl. I just sent her a few messages myself and it takes no time at all. Let's make it our goal to have so many messages going to Erin that Texas Children's will have no choice but to discontinue this program due to unforeseen overtime staff charges, printing paper chargers, and toner cartridge charges due the overwhelming number of messages this Texan deserves.

Also, it is fun to stop and ponder what your best and/or worst moments from Junior High school happened to be and then imagine those thoughts ending up on a piece of paper hanging up on the wall of a pediatric oncology inpatient floor in Texas and helping to brighten a deserving child’s day. (Note: Her smile on her website is contagious and if you ever find yourself in a bad mood take a look and you can't help but smile yourself.)

New friends

Will loves to wrestle with me and when Evelyn sees us on the ground she crawls at top speed while unleashing these loud guttural sounds until she finally climbs up as seen here. At this point she proceeds to repeatedly hit me while growling and laughing. This, of course, sends Will into hysterical fits of laughter and is basically just a good time all around. Poor Evelyn has two of her molars coming in and her gum is all blue in front of one molar. She must be hurting but she is handling it very well.

Note: That 'doll' is actually a 'cat' that belongs to Will and that Evelyn has hijacked for herself and it goes everywhere with her. I find it amusing.

Add "creating your own social network" to the list of things I never in a million years imagined I would ever do. However, I have done it and it is over HERE if you'd like to visit. This is a place where I can put all the fundraising events that people are doing for the MagicWater Project in honor of Will.

(FYI - If you are a facebook/myspace person or simply have your own webpage and would like to help share this community then please click HERE to do so.)

I'm not sure why or how it happens but as time moves onward I find that the circle of friends I posses narrows to a scant group. Perhaps it is because I'm getting grouchy in my old age, or maybe I'm just too lazy, or maybe a lot of my prior friendships revolved around activities that I no longer wholeheartedly participate in. In any event, adding friends is akin to "growing new hair" at my age yet I find that I have added a few.

Sadly, these friendships were forged through the kinship I have with other parents that are fighting this same horrible disease. A disease that eventually is going to claim all of our kids lives unless something can be done.

I have had my heart broken on numerous occasions when kids whose stories I have followed have been taken by this disease. However, I have felt a special bond with Max , his family, and especially his dad Andy whom I consider a very good man and a very good friend.

At times people list countless testimonials to the bravery and sacrifice and heroics of these families. With that in mind I am not saying what I am about to say as some sort of platitude for a grieving family. I truly found the Mikulak's to be an incredible source of strength and inspiration to me as a dad to "DO BETTER". I often become frustrated because no task or person in my life is getting 100% of me and having a life full of uncompleted tasks and commitments can be oddly debilitating. However, on many occasions I found renewed strength from the Mikulak's example. I am so terribly sad, angry, upset, disappointed, and frustrated that a cure could not be found for Max.

No child deserves this disease. No family deserves this burden.

Updated plan for cycles 3, 4, and 5

I know it is September but I felt it was still a little premature for Dina to be breaking out the sweatshirts for Will. I took this picture right before he left for the clinic in Rhode Island this morning.

Although I have to say there is nothing I enjoy more than that first fall day where you go hunting around in your closets for your favorite sweatshirt on that first brisk day.

Will got back at it today as he went down to the Ocean State for his vinblastine infusion. The dose has been reduced so that he now gets 75% of the dose he had been getting. Also, the 21 day cycle is now going to be a 28 day cycle with the 4th week being 'vinblastine free'. Hopefully the dose reduction and built in week off is going to be enough to let "Will be Will" and not rob him of his gusto.

As I mentioned before we are also going to be adding a 4th drug to the mix starting tonight at 6:30.

Will's current therapy:

Wednesday
75% of the MTD of Vinblastine
Two (2) 1mg rapamune tablets at 6:30pm
For the next four nights Will takes one rapamune (1mg) pill each night at 6:30pm.

In addition to the above schedule will takes Celebrex twice a day. With breakfast he takes a 100mg capsule and then at 6:30pm he takes another 100mg capsule. His new drug added to the daily intake is also going to be a pill taken once a day. This will be a 20mg pill of lovastatin and will also be taken at 6:30pm daily.

Lovastatin was the first FDA approved statin back in 1987 (are you sensing a theme here?). Statins are a class of drugs that are used to treat high cholesterol and thus prevent cardiovascular disease. It is important to note that this is not a drug we are taking because Will eats hot dogs and waffles all day long.

Will is adding this drug to his current regimen in a multi-modal attack on his cancer. We have scans scheduled again after 3 more cycles for the week before Thanksgiving and if he can remain stable and the quality of life is good we will most likely add a 5th drug at that time. Let's hope that is the case and we can keep at it.

Catching up

Here is Will after he awoke in recovery from his anesthesia. He was put under for his CT/MIBG scan and then his bone marrow biopsy. Once he awoke we got dressed and this picture was taken in the clinic as we waited to see his doctor and review the test results. You'll notice in the left of the picture "Jack" is wearing his own bracelet. And yes...Will is eating a hot dog that the wonderful volunteers in recovery got for him.



Last weeks visit to Vermont:

Labs
WBC 6.47
Hgb 12.10
HCT 34.1
PLT 241
BUN 11
AST 37
ALT 29

Urine
VMA - 10.2 (normal is 0-13)
HVA - 15.5 (normal is 0-22)

Bone Marrow
Will's bone marrow aspirate came back, as always, negative. This test picks up any disease greater than 1% (in theory).

If you recall, back in March when Will had surgery we sent a sample to Vermont that was analyzed by flow cytometry. This can analzye the sample and find any disease less than 1% (called minimal residual disease or MRD) and at that time, for the first time ever, neuroblastoma cells were discovered.

In March the reading stated that Will's marrow had 0.018% of the cells analyzed were consistent with metastatic neuroblastoma cells.

This time?

This time they found 0.009% of the cells to be consistent with metastatic neuroblastoma cells. What do his cells look like?

Note: The suspected neuroblastoma cells of interest have a satisfactory CD56, but have an absence of GD2, a satisfactory CD81, and a satisfactory CD9 antigen when compared to SK-N-DZ positive neuroblastoma cell line control and most 'fresh' neuroblastoma clinical samples.

Note: Only one of 10 suspected cells of intereste appears to express the CD34 stem cell antigen but it is 'slammed' on the "Y axis" of unknown clinical significance.

Note: "Standard Analysis" gating approach demonstarated 0% cells of interest.

Max is gone

Max was taken from his family by neuroblastoma last night.

This disease not only robs parents of their kids, it then proceeds to place them on an island of grief where no words, actions, or well meaning people can do anything to comfort them or take away their pain.

So now Max is gone, his family is stricken with grief, and there is nothing we can do to take it away.

There is nothing more terrible than this disease.

What time we have with our kids is spent making them feel lousy in an attempt to keep them alive.

And then they are gone and no one can do anything about it.

And now this wonderful, bubbly, handsome boy is gone.

Forever. Forever a 2nd grade student, forever seven years old.

I hope that somehow the Mikulak's can find the strength they need to get through the unfathomable grief in the days, weeks, months, and years ahead.