This picture was taken on I-95 north on the ride home from chemo. This is reason # 372 why getting chemo in another state can prove difficult at times. Will is a bit sluggish today from being sick and his labs are below.
WBC 6.0
HGB 10.5
HCT 29.9
PLT 190
AST 40
ALT 28
LDH 232
ANC 3700
Will picked out this sweatshirt for me as my Christmas gift and I know I will keep this gift forever.
In just over 20 weeks time from now (I'm guessing on May 21st, 22nd, or 25th) our family will be adding a 5th member to the mix via a scheduled c-section as Dina is just over 18 weeks pregnant with a baby girl. Dina was extraordinarily sick for the first trimester but other than battling permanent exhaustion (which apparently won't be ending anytime soon with 3 kids) she is feeling well.
Other than finalizing a name the only thing we have to figure out now is where I'm going to end up. We bought our house 4 years ago next month when Will was 4 months old and at that time I figured 3 bedrooms was more than enough room. Now that I am currently sharing a closet with Evelyn that she will soon be sharing with her baby sister (19 months apart for those of you wondering) I'll need a new place for my stuff.
What are my choices?
I'll either be carving out a corner in the attic with the bats....or a spot in the basement with the sump pump. Luckily, I happily dress like a hobo so this isn't a problem for me! I did not forsee this development four years ago when we purchased our 'forever' house of 3 beds and 1.5 baths (ha!) but it is an incredibly wonderful and amazing devolpment.
There is, of course, an element of stress and worry as well but after having one child it became clear to me that there is nothing else in the world that is quite as amazing. I know Will is going to have a hard time adjusting but he will not have to share a room so I think he'll get over it and Evelyn is quite insane and will gladly welcome some new activity to the house to help mask her own outrageous antics.
The kids had a good holiday and sadly both have awoken today with a cold. Based on Evelyn's coughing and Will's hoarse voice we suspect that they have developed a simultaneous case of the croup. I guess it's just as well that this happened during a school vacation week since he won't have to take yet another week off of school if it was in session.
It looks like we'll be in lock down for a few days to ensure that nobody else get sick. Well, of course there is one place Will has to go on Wednesday and it just happens to be a place filled with immunocompromised kids....so that REALLY stinks.
We are going to try and have his labs done in advance so that we can limit his time in clinic to hopefully ensure that nobody else gets sick.
Santa brought Will a Wii....I'm not too happy with Santa about this development as Will wants me to play with him and my entire right arm, from shoulder to wrist, is now sore. Santa also brought Evelyn some lovely gifts and of course the first thing she saw, grabbed, picked up, and proudly carried around was a Nerf football that Santa gave Will.
Just as Will was leaving clinic on Wednesday Mickey Mouse popped in to Hasbro Childen's hospital to pay the kids a visit. You'll recognize Will about 33 seconds into the video as the second kid to give Mickey a hug. He was holding onto a gift he received that he is obsessed with and seemed puzzled that Mickey flew in from Florida just to say hello.
Video link on Projo.com can be viewed by clicking HERE.
This reminds me that we have to get back in touch with Make A Wish and try to get Will down to see Mickey in Florida sooner rather than later.
Will and Dina left the house at 7:30 this morning to drive to Providence to start cycle 7 of vinblastine & rapamycin today (this is Wills 44th cycle of chemo overall). Since we made the switch Will's new drug dosing schedule going forward is listed below:
Each cycle is 28 days long
Vinblastine - 75% of the MTD once a week for the first 3 weeks with the 4th week off
Rapamycin - 1 pill every day at 6:30pm
Lovastatin - 1 pill every day at 6:30pm
Celebrex - 2 pills ever day; 1 with breakfast and 1 at 6:30pm
Since we switched to the standard dosing (daily) of rapamycin on Monday night I and we saw an improvement in his behavior I am hopign that today he is feelign better than he normally does. Usually the first day of vinblastine is after his week off is the worst day for him as far as how he feels. We give him tylenol for any nerve pain and zofran for any nausea so hopefully he'll be able to enjoy his Christmas eve.
His bloodwork looked strong today:
WBC 6.7
HGB 11.4
HCT 32.8
PLT 290
ANC 3100
AST 27
ALT 20
LDH 247
Will also gave a urine sample today so they can check his HVA/VMA levels. When I told Will he'd have to give a sample today he asked me if they were going to use the plastic tube like they did in Vermont and I quickly had to tell him no...he just had to pee into a cup.
When he was sedated for scans in Vermont one time his bladder was very full since we failed to have him empty it before he was knocked out. Since the night before he received a radioactive injection for the scan that is voided from your body through your urine this meant that his bladder was lighting up like a christmas tree and not allowign for a proper visualization of that area. Since we couldn't wake him up a nurse had to come dowan, insert a foley catheter to drain the bladder, and then remove the catheter and complete the scans.
After removal of a foley you can have some rather intense pain and cramping when you attempt to urinate for about 24 hours or so and we drove home that night after his scans from Vermont. It was a very unpleasant ride and he desperately needed to pee but he could not. This was troubling since we knew his urine was radioactive and we didn't really like it haning out in his body/bladder longer than it has to.
In any event we made it all the way to Boston before he finally was able to pee after a few failed attempts. This one was done standing up in the backseast of our truck after pulling off the highway and parking in the South Bay parking lot. He won't soon forget that experience(we explained to him why he was in pain and I said it was 'my fault' because I forgot to tell him to pee) so when he asked me about the 'tube' today I quickly reminded him that he just had to pee in a cup.
I'm very thankful for another Christmas with our family.
My thoughts are with all of those families this year who are spending their holidays without their children. The holidays aren't loved by everyone universally but one thing they always have in common is the theme of family.
Being forced to experience this time of year for anyone who has lost a loved one is hard.
It must be an monumentally more difficult task when that person is a child, and even more so the first time the holidays come around and there is a child missing from your home and so many reminders of that loss.
Eden, Ana, Austin, Cooper, Dustin, Katie, Tyler, Spencer, Max, and so many other kids were lost to NB this year. I think of their families, I think of my own, and I will do everything I can to always be mindful of the gift of time we have been given.
I thought I had posted this video before but I guess I did not after a quick check. This is about two weeks ago when Evelyn was briefly fascinated with the T-Rex. This has luckily resolved but to explain why I find this funny I need to tell you about this toy. It has two buttons and one makes it walk along while making a weird noise. The other button makes the T-Rex ROAR very loudly while rotating it's head about and opening and closing it's mouth.
Evelyn LOVES this.
However, since she is about 14 months old she hasn't quite grasped the 'which button does what on a remote controlled toy' concept. This video basically shows the thought process of Ev as she hits buttons while trying to make the dinosaur roar. When that doesn't work she taps/hits the head of the toy and pokes it in the chest.
The last few cycles of chemo we have noticed a patter with Will as it relates to the last (4th) week of each cycle. This is the week where he gets a break from vinblastine and rapamycin and he has not been himself these weeks. He doesn't listen, he is fresh, he is irritable, his sleep is off, he is whiny, and basically he seems like a preschool kid in desperate need of a nap or who just doesn't feel well.
This goes on for about a week and for those of you with kids you'll understand that the above described behavior is a classic recipe for short tempered inpatient parenting of which I have been monumentally guilty of. I know that he doesn't feel well but he'll cry at the drop of a hat and just do all of the worst behaviors a 4 year old can do to get under your skin and in spite of the fact that I KNOW he doesn't feel well I still lose my patience with him. His time spent on the stairs in Time Out goes up dramatically these weeks. For a few cycles we thought he was acting up from a cold or just sick but this time was the 3rd cycle and we were watching for it. Sure enough...starting last Wednesday this behavior manifested itself yet again.
I emailed his oncologists to see if you can have withdrawal from rapamycin but no one gives rapamycin with breaks like this. You just take it every day so no one had heard of this. Since we are taking these drugs off label and not as part of study we asked Will's doctor in VT about it and she recommended changing the rapamycin schedule. We'll continue to take the week off from vinblastine to ensure his marrow function stays strong but we'll no longer have a rapamycin holiday.
So last night we decided to give Will his rapa in advance of Wednesday night to see if there would be any difference in his behavior today and tomorrow morning before he gets his chemo. When Will and I came downstairs this morning he was in a great mood and we were playing with the xmas tree. He suddenly turned to me and said out of the blue "Daddy, I'm not grumpy anymore!" I asked him what he meant (hoping for once to get some insight) and he said that he must have gotten a good nights sleep. He went to bed very late and was up 3 or 4 times during the night so I know that wasn't what helped him.
I just spoke with Dina to confirm if things have stayed the same since she is with him 24/7 and she said he is like a completely different kid. It was like a flip was switched and our son was suddenly himself again. I feel so horrible when I have to yell at Will and give him time outs and take away toys and privileges when he misbehaves when I know it is drug related. I knew he was hurting this past week but we have to have some structure at the house and hitting people, especially your baby sister, is not allowed. So it was great to see him feeling better today and it also made my heart break to see this transformation.
I just spent 5 or 6 days in a battle of wills with my 4 year old, punishing him, giving him time outs, yelling at him to stop hitting, trying to understand why he won't listen and then just as quick as you can say "Father of the year!" he gets one tiny little white pill and he wakes up today the wonderful boy that is my son because whatever was ailing him was suddenly gone. There is nothing like giving a time out to a 4 year old cancer patient who is acting up from a drug related side effect. A drug you are making him take in order to save his life...cancer parenting is a unique experience.
Will was being very difficult last night at dinner and was being very demanding of everyone. In the midst of fulfilling one request he demanded another of Dina and she stopped and turned to Will and explained that she could only do one thing at a time (at the time I believe she in the midst of pouring him a drink and he was demanding a new spoon). Dina then said that "I only have two hands' and Will replied "I really wish you had a lot more hands".
It is so wonderful that whatever was bothering him is gone and he can feel better. I know that this past week was difficult for him since he didn't' feel right and was acting out and I was yelling at him and giving him time outs. Now that he is better perhaps I'll go and find a sleeping dog to kick...
My first inkling that Will might be feeling better was last night as I was putting him to bed and his face was lit up with a mischievous smile as he was telling me his plans to stay awake so that he can see Santa arrive. I explained that Santa sprinkles magic sleeping dust on the house when he flies overhead to ensure that everyone...kids, parents, dogs, etc...are asleep when he lands. I told him how Uncle Carl and I used to try and stay up with flashlights but we could never make it.
Will then really scared me when he said he'd pick up a baseball bat....but the further stated that he would use it to bang the roof to shake off the sleeping dust so he could stay awake. I asked him why and he said he didn't like dust because it makes him sneeze....this made me laugh and as he drifted off to sleep that twinkle I saw in his eyes gave me an inkling that today would be a much better day for our family.
The Friends of Will are just over four weeks away from their two fundraising events and all proceeds will be directed to the lifesaving neuroblastoma research being performed by Dr. Sholler at the Vermont Cancer Center. Vermont is where Will receives his scans and is the place where his unique care is being directed from that he currently receives in Providence.
I truly believe that if Will is going to be saved that Dr. Sholler is the person who will do it and that is why any funding for her work is so important to us.
Both events are taking place on Saturday night January 24th at the Florian Hall in Dorchester. Tara Shea is organizing the Texas Hold 'em tournament that is taking place in the smaller function room. There is a limit of 100 players for this event so there will be 10 tables of 10 players with a $100 buy in. Registration begins at 5pm and this event will goes from 6pm until 11pm and is being run by Boston Charity Poker. There are corporate sponsorships available for each of the tables for anyone who may be interested.
If you want to play in the tournament or have your company sponsor a table please use THIS link for Tara’s contact information.
(Note: Once you have finished playing (most of you well before 11pm) your registration will allow you access to the fundraiser taking place in the adjoining function hall that goes until 1 without having to purchase an additional ticket.)
If you do not plan on playing poker but want to attend the event in adjoining hall the details are HERE. You can purchase your tickets online using a credit card in advance and they will be mailed to your address.
Or you can send a check to:
Friends Of Will
83 Monatiquot Ave
Braintree, Ma 02184
If you have any questions or would like to donate any items for the raffle or auction please email:
FriendsofWillLacey@hotmail.com
As always thank you to everyone for organizing this event and to all of your for your support.
Here are Will's friends Jack & Frosty and as you might have guessed the lighted snowman is Frosty so that means that Jack is the ubiquitous head moving reindeer on the left. I took this picture last night after I had to literally dig the two of them out.
When the lights came on all I could see were Jacks neck and head and the top 1/3 of Frosty so it only seemed fair. I do have to admit that as I sat there piled in the snow it struck me how monumentally foolish it was of me to immerse myself in snow in the midst of two electronic characters plugged into an extension cord of unknown origin.
Today for lunch I walked over to Tufts and it is now the 6th pediatric hem/onc clinic I have visited. I met with the NB doctor to discuss Will & his care and to get some information about their program. It was a very familial atmosphere and I heard a lot of good things today. If we can get Will's care transferred to this hospital it would make life a lot easier since it is less than 11 miles from our house and also less than 1/2 of a mile from South Station.
Every day Will asks me to come to work on the train and I have to turn him down. However, if he starts getting his chemo in Boston again we could take the commuter rail to South Station and walk over for his chemo. Dina could drive in later to pick him up and I could walk over to work once he was finished up. So Will would get his wish to take the train and we’d get our wish of an easier weekly chemo trip. Everybody wins! We’ll have to touch base with all of Will’s caregivers to make sure there aren’t any questions we haven’t answered but it looks next month we can start a much more reasonable process for Will’s care.
For those of you keeping score at home here are the six clinics in the order they have been visited. The last three have taken place in the past six months.
1. The Jimmy Fund - Boston
2. Memorial Sloan - NYC
3. CHOP - Philly
4. Fletcher Allen - Burlington VT
5. Tommorrow Fund - Providence
6. Floating Hospital for Kids - Boston
I am asking - no I'm not going to ask I am going to demand - that Santa delivers me a green mock turtle neck sweater this year with a giant letter "P" on the front just in case I'm ever at a loss as to what my first initial is.
There is a wonderful new development around our house that cracks me up each time I hear it. Will has adopted a new word (thanks to the Thomas books) that he uses in the EXACT spot and with the proper tone that an adult - well, at least a filthy mouthed adult like myself - would use for some choice swear words.
What is that word?
Rubbish.
Go ahead and try using it aloud, you can really wrap some forceful anger around this word and bark it out in a number of different tones and speeds to give each utterance it's own special meaning. I find that I am using it now which is a great development because I really have a mouth like the proverbial truck driver.
Here is Will exulting over the trophy he received at the conclusion of the Fall 2008 Bowling leauge. Not only did he receive the wonderful trophy that you see him holding aloft in this grainy camera phone picture but he also received the spiffy shirt he is wearign here at the end of the season pizza party that took place on Monday afternoon. Papa Ed brought Will and Will had a great time. When Will got home he wanted to get his trophy from his friends at F1 Boston, another randome 'gag' trophy that I had bought for a friend that Will comandeered for himself, and a medal from when Jim ran the marathon. He was carryign them around and he wanted to dispaly them....I told hime we'd have to build him a shelf....
Last night my parents took Will & Tucker to Edaville railroad just as they used to take myself and Carl when we were young kids 30 years ago. Will had a great time on the train and on the rides and then getting dinner with Nana, Papa, & Tucker. Will also went to lunch yesterday at Friendly's with Yoga Kim, James, Dina, & Evelyn.
He has a much more exciting social life than I do...
When Will awoke this morning he asked if he could call Nana & Papa so that they could come pick him up so that they could go grab Tucker and go bowling. I explained that it was a bit early and that he and the T-Man both had school today but Will suggested that he was going to skip school today and go bowling. It gave me visions of Will & T-man skipping school in a dozen years to get into trouble. (Wouldn't that be wonderful if teenage delinquency was our biggest worry!)
We have a few snowstorms headed in this weekend so it looks like Will is going to get to work on his favorite snow related skill this weekend of making snow angels. I'll try and take a picture since his angels look more like a mishapen oranges than angels but he loves falling in the snow. He has the next two weeks off from school so if this weather keeps up we'll hopefully have this skillset mastered by New Years day. (we just received a voice mail from the town and Will's last day of school tomorrow has been cancelled so it looks like Dina has one extra 'vacation' day with 2 kids at home...lucky her!)
Since Will did not have chemotherapy today he was able to attend Yoga Kim's class and thanks to her new camera phone we have the following shots. I explained to Will that if he ever wants to be a professional hockey player when he grows up that strenght, flexibility, and balance will be the key to success as an NHL goalie.
This first one is Will doing the "Christmas Tree" pose.
Here he is working on his 'downward dog'. 
He has a great time with Kim as she lets the kids have fun and integrates some basic moves while also teaching the kids about relxation, focus, and respect.
This was just before we headed out for Will's first skate. Eveyln does not like to keep any hats on her head unless it is this hat seen here. Of course, this hat is Will's winter hat so you can imagine how Will feels about that.
If you are a football fan and your team isn't going to make the playoffs this year then here is a very good reason to pick one team to put your support behind if for no other reason than they brightened one young girls day.
Will is going to head back to school today after taking last week off. He just had a cold all week but we didn't want Will to be responsible for gettign any of his classmates sick so we kept him home to be safe. This is his last week of school before he has a two week break before starting back up on January 5th. This is also the last week of this cycle of therapy so he does not have to get chemo until next Wedensday. This is always a nice week off and allows Will (usually) to get fully back to himself for a bit.
Will had a fun and busy weekend as on Saturday he had a great surprise. My cousin Julie had called earlier in the week as she had secured 3 tickets to the Polar Express for Saturday for herself and her 9 year old son Brendan. Brendan wanted to know if he could bring Will with the third ticket so she gave us a call. When Dina ran it by Will he was very excited so we hopped in the car at about 2pm on Saturday and I drove him to their house. Brendan is the youngest of 3 boys ranging from 9-16 and this is the ideal demographic for Will. He thinks 'big kids' are just the best and and when I was leaving the house to go home Will could care less that I was leaving as he was in the midst of baseball game on the Wii.
Dina and I had a 40th birthday party to attend that night so Will was not going to get home until after we left and he would come home to Tara & Evelyn. It was a 'first time' experience for something like that involving Will but he had a great time since trains & hot dogs at Friendly's were involved. Yesterday Will had his cousin Michael's birthday party in Providence and he had a great time as well.
Since Dina & Will were goign to be gone I thought it would be a great idea to make a roast. Before they left Will & I went to the grocery store and bought a roast and vegetables and when the arrived home dinner was in the oven. It came out just before 6pm but thanks to a mistake on my part things went horribly awry.
I bought a pork roast (we were at a Greek resataurant the night before so I had pork and lamb on my mind) and I insterted the meat thermometer into the thickest portion of the roast. However, I used the internal temperature for 'medium rare' that is associated with beef...not pork...and when I pulled the 140 degree roast from the over (allowing for another incresae in 5 degress after removal) I was anticipating a good meal. I became aware of my error after slicing open the roast at about 6:15pm at the height of Will, Evelyn, Dina, and my own hunger. It was at this point I discoverd that my fully sliced up roast was about 40 degrees shy of where it needed to be so plan B was put into motion.
There is nothing quite as annoying as a sinkful of dirty dishes from a dinner you don't even eat.....
I'm sure you are getting tired of hockey stories by now but Will continues to be obsessed so I'll continue sharing them. On Friday night we were watching the game and in the first 10 minutes the Bruins scored 3 goals and got into 2 fights. When the fights are about to happen I usually pause the TV and get Will to run into the kitchen for some obscure errand otherwise he'd spend the rest of the night punching me in the face. So on Friday I told Will "go into the kitchen...momma was calling you" and I attempted to fast forward through the fight before he returned but the DVR was acting up. (does this happen to anyone else? You hit fast forward or rewind and the box doesn't repond but after 6 seconds it cycles through all of the commands you angrily punched into the remote??). When he turned the corner he caught the very end of the fight when no punches were thrown but they were being seperated.
So he proceeded to ask me why 'the punching game' ruined that guys shirt? He then proceeded to try and pull his own shirt over his head as I sat there realizing that I'll need a bette strategy going forward. He also continues to be confused and nearly angy as to why Tim Thomas 'lets his friend' Manny play goalie sometimes. That kills me. But not as much as when one of the commercials or introductions to the pregame show came on. It showed a Bruins player checking someone from the other team and the player went flying over the boards into the Bruins bench:
Will: "Is that guy in the penalty box?"
Me: "No, he was hit into the bench.
Will: "Oh. Was he saying 'hi' to the Bruins?"
If this picture was taken today we'd be in swim trunks and wearing masks and snorkels instead of skates.
-Will had a jelly, cheese, and pickle sandwich for lunch the other day. He said the peanut butter was gross and requested this instead.
-He is home again from school due to his cold.
-I hate to proofread and dread when a stream of consciousness spews forth from my brain and onto my keyboard because I know my fat sausage fingers are incapable of keeping up and that there will be so many typing errors. I HATE proofreading but I have to at least try so that I do not further embarrass the public school system.
-I have become a member of facebook. I have re-connected with some people that I have not thought of in years and seeing their name gave me the same sensation that I experienced when I went to my parents and saw Will playing with one of my old toys that my parents saved and my dad had brought down from the attic. A closet door in my mind that had been shut for years was suddenly opened to shed light on a bunch of dust covered memories stuffed in there that I had forgotten about. It makes me feel like what all of those TV actors look like when they wake up in a hospital from being knocked unconscious by some bizarre set of circumstances and try to recall how they got there.
-Do you remember the video game Dig Dug? You were in charge of an underground tunneling character and when you encountered the monsters you either had a rock drop on them or you had an odd sort of air pump. You would over inflate them until they would burst. Starting with me it would seem that a large percentage of the guys I graduated from high school with look just like those Dig Dug monsters just before they would burst. And more disturbingly, this has not seemed to have happened to any of the woman. They all pretty much look the same except they don't look like kids anymore. Also, those Dig Dug monsters did not suffer from receding hair lines. 
-Will's ice rink has melted since it was 60 degrees outside yesterday and now the rink is a pool filled with leaves. I wish the rink kit came with a pool skimmer.
-I've never been to a Broadway show but I was just curious if I would be allowed into the theater if I was carrying an empty laundry basket filled with rotten produce? Is that allowed? Do people still throw rotten produce on stage to express their displeasure at a performance? I certainly hope so. In the history of the theater do you think it is possible that somebody ever went through the trouble of bringing rotten produce with them to a theater and didnt' find some excuse to throw it at someone before they left? Maybe after a few drinks? I mean, can you honestly imagine someone goign to all the trouble and then saying "Wow...what a great job by everyone. I guess I'll go home now and leave this un-thrown produce stuffed inside of my jacket."
I bet I could make a lot of money by opening up a theater that would allow and encourage such behavior.
In lieu of concessions I would have farm stand in the lobby selling rotten produce. I would have people walking up and down the aisles of the theater hawking heads of lettuce as if they were bags of cotton candy and a hot dog vendor selling rotten cucumbers.
We'd surround the stage in chicken wire just like at "Bob's country Bunker" in the movie the Blues Brothers and we'd open and close each show with a rendition of "Rawhide". I would allow all of the understudies for some real show to get their practice on my stage. It would be an extraordinary proving ground to test someone’s stage presence under such extreme conditions. Trying to remember your lines as rotten produce is hurled at you while vendors are shouting such absurd things as "Cucumbers HERE...get your red hot rotten cucumbers here!" would be challenging.
Can't you see some of my customers become much too enthusiastic? I'd have to hire security and we'd keep a cork board in the lobby with our versions of "Wanted" posters for all of the customers that have been blacklisted for their overly aggressive approach to what was meant to be a lighthearted affair. If I was obscenely wealthy I would fund such an absurd idea for my own entertainment.
-Can you order 'black pepper encrusted' pizza? If so, I bet it would be delicious.
-I have a reindeer and a snowman light up 'thingy' in our front yard (light up - not blow up). It has been so windy that "Frosty" keeps getting blown down and his head and arms keep popping off.
-Will asked if we recycle Gatorade bottles and I said yes. He asked 'well then where are the triangle thingy's?'. I could not find them.
-I hate my car insurance policy and company but I'm too lazy to do anything about it.
-I have eaten a chicken salad sandwich on a wheat wrap with pickles and hot peppers everyday this week for lunch. I intend to break up that pattern right now.
Here is Will in December of 2006 putting the snowman on top of the tree. Things are a bit different in this picture when compared to the photo from yesterdays post. The tree is in the same room, the snowman is the same, and I am holding Will up so he can reach the tree. However, the task of holding him up 2 years later is monumentally more difficult and today he has a full head of hair.
In this picture Will had recently been deemed incurable after having failed high dose chemotherapy and we were in the midst of a few rounds of Topo/cyclo to try and get us to January of 2007 so that Will could get his MIBG therapy in Philly. When I look at these pictures I get sick to my stomach when remembering the state of denial we lived in. I actually thought people couldn't tell he was sick since I figured they just thought he might have thin hair. Who was I kidding?
In any event....here we all are two years later and my back is now a mess from hoisting my giant 4 year old son with his full head of hair to the top of our tree. And while his tumor hasn't changed since then his treatment has and it agrees with him a lot more than prior intense options.
I watched the Rudolph special with Will the other night (we had it in DVR). I was somewhat horrified by what a pack of jerks live at the North Pole. As I'm watching it with Will I was trying to explain their behavior as a life lesson for why you should never treat anyone poorly just because something is different about them. I asked Will if he liked Rudolph and he said yes. I told him that I thought Rudolph was swell and that the other people should not be mean to him just because of his nose and how Will should always be nice to people.
His reply?
"I don't like those guys. I'm going to punch them in the face."
That is not exactly what I was going for, but it would seem that no one better pick on Evelyn or any of Will's friends on the playground at Flaherty school. I had to bite my tongue before I finally could control the outburst of laughter that was dying to erupt and tell Will that he shouldn't punch anyone. (Meanwhile I agreed that the Reindeer coach was a reall smug bastard and deserved nothing more than a good punch in the face.)
Will did not walk until he was thirteen months old. Evelyn is 13 months old right now and below is what she was doing last night in the toy room as I snuck the camera around the corner. We've got a climber on our hands.
Will had to stay home from school yesterday as he developed the signs of a cold Monday night. When he awoke Tuesday and we informed him that he had a cold and that he would have to stay home from school. At this point Will informed me that he wanted some soup for breakfast to make him feel better. We made the soup and he said it was disgusting and that instead he'd have a frozen waffle. Of the past 1,0000 days of Will's life I'm guessing he has had a waffle for breakfast on 837 of those days.
On my way home from the train station I stopped off for his zofran prescription last night in preparation for today’s chemo. Dina is on her way home now for what is (hopefully) her last trip home from Rhody for chemo. Right now you might be thinking that one of two things has occurred:
1. We found a hospital in Boston to give Will his weekly vinblastine push
2. We are stopping this treatment
If you guessed either of those options I'm afraid to say that you are wrong and you will not be taking home a prize today.
That being said I have in fact, in an act of desperation, been calling hospitals locally to see if we could convince someone to perform Will's vinblastine push. It is really quite easy to do and takes no time at all. I was hoping that some adult clinic locally would allow us to show up with a lab printout and Will's port accessed and simply give us the chemo. I was envisioning some scenario where I drove Will over to South Shore hospital and 15 minutes later we were back home de-accessed and happy as can be.
Since that hasn't happened (and it will not happen unless I can get some compromising photos of a doctor on staff at South Shore) it looks like we'll simply continue to insert "Providence" in place of "Weymouth" in the above mentioned scenario.
However, it is taking a bit of a toll on everyone so we are going to mix it up a bit. Going forward until Will's next set of scan he will have the first clinic appointment for each of his chemo days. I will shoot him down first thing in the morning and then drop him off at the house before going into work. It means that I'll get to work 2 or 3 hours later than I normally would but I'll simply stay later than I usually do and will hopefully allow Evelyn to get her nap in, Dina to take care of some business around the house or around town, Will to get his chemo, and me to assuage my guilt for never taking Will to clinic. It's a WIN-WIN for everybody!!!
The whole goal of leaving work on time each day is to simply get home early to spend some quality time with the kids before putting them to bed. So on Wednesdays instead of hanging out with Will before bedtime I'll just get to spend some time with Will in the morning.
Now, if someone said you have 4 hours to hang out with your son every Wednesday morning I'm fairly certain that selecting 2 hours in the car and roughly 2 hours in clinic would not be my first selection. However, I will strive to make the most of it. Quite frankly it beats the S**t out of spending 4 hours holding an urn or 4 hours sitting next to a headstone in a cemetery. This is what I have to remind myself when the claws of frustration are attempting to wrap themselves around my throat.
Is this the best case scenario? Of course not.
Could it be easier than it is? You bet it could.
However, it can always be worse.
A lot worse.
Focus on that and just try to make the best of it.
So that is what I intend to try and do with our Wednesday mornings as we'll be road tripping for chemo and I'll try to make each week a fun adventure for both of us. Now, this isn't exactly the same thing as road tripping across state lines (or to Montague)to buy beer on Sundays I'm sure we can find something fun to do each week other than simply getting a needle in Will's chest.
So while a cold gets you a day off of school it does not absolve you from labs and chemo so here are today’s counts for all of you out there waiting in breathless anticipation:
WBC 6.1
HGB 10.1
HCT 29.4
PLT 226
ANC 3400
BUN 12
AST 27
ALT 18
Next week is week 4 of this cycle so there is no vinblastine required and he'll start cycle 7 of this therapy on December 24th. Will started this treatment on July 15th of this year, nearly 5 months ago, and we are excited he has remained stable and that his quality of life has been pretty good. In addition to quality of life, scans, labs and urine testing for tumor markers we want to get any information that we can get to try and track Will's disease.
One such measure involves the bone marrow biopsies which have always come back 'clean' for Will until we went to Vermont. As you will recall if you have been here for a while Will's marrow in VT also comes back clean but it is also sent out to have flow cytometry performed and that is where disease has been found.
It is a population of cells so small that traditional screening does not catch it since it is less than 1% of cell population in marrow. However, this would potentially help explain why so many kids who are NED (no evidence of disease) relapse because there is the population of cells just waiting to grow once the treatment has stopped.
As it stands now Will has only his primary tumor in his chest and this population of cells and let's take a look at what that population looks like according to the three flow cytometry reports that have been run on Will's marrow. This identifies, out of all the cells collected, what percentage are consistent with metastatic NB:
Date NB %
3-28 0.006
8-28 0.004
11-20 0.001
I do not pretend to know what the clinical significance of minimal residual disease is. However, given that the only measurements of disease that I currently have for Will involve CT/MIBG scans of his tumor and this cell population I can certainly take comfort in the fact that this population has been declining since we started this therapy. If nothing else, it is certainly better than the alternative trend of having this MRD increasing and it helps me to maintain hope that we can one day get the size and MIBG avidity of his tumor to follow a similar pattern.
I can't for the life of me think of one good example right now but I can clearly recall that in any television documentary that is recapping the historic career of some athlete or 'celebrity' there was always some grainy 'Zapruder-eque' video of the aforementioned athlete as a child performing miraculously in their chosen field at a young age. (Random tangent: Anytime I hear the name "Zapruder" the words "Babushka Lady" immediately pop into my head in a sing song fashion and it annoys me to no end. I simply had to get that off my chest.)
Whenever I would see these videos I would always be amazed. However, I would not stare in amazement at the athletic feats or other achievements. Instead, I would always wonder why it was that seemingly everyone on planet earth, outside of my immediate sphere of existence, seemed to have 'home movies' other than myself? I was born in 1973 so if you look at the first 10 years of my life we are talking about a time at least one or two decades before the mass adoption of home video cameras. I always was, and continue to be, amazed at the sheer volume of 'home videos' in grainy black and white film that accompany all of these stories.
Now that I think of it, these grainy films probably exist simply because these kids were doing something so incredibly remarkable and precocious that someone must have demanded it be recorded for posterity.
So, I guess I shouldn't have been so amazed by this after all because if it was 1976 and I woke up at the age of 3 and could play a mean banjo, tap dance to the beat of the star spangled banner, kick 64 yard field goals, long jump 29 '3" with ease, or recite the Gettysburg address I'm damned sure my parents would have managed to record it on film.
(This is the point in one of these posts where I normally type: "Why am I talking about this?")
Why am I talking about this?
Well, the reason I am talking about this is because thanks to Amazon.com, the binky fairy, and the arctic weather here in Boston the past few days we have a mini-rink in our backyard and Will, for the first time in his life got in his skates and got on the ice. I've recorded this footage so that in 15 years when Will is a superstar in the making for the Boston Bruins our friends to the north at CBC sports can dig out this footage for 'Hockey Night in Canada'.
I can vaguely recall learning to skate as a youngster with milk crates at Pilgrim Arena in Hingham but I don't clearly recall my very first experience. If it was anything like Will's then I now understand why I do not remember it because I either blocked out the memory or suffered such a life altering concussion that it would be impossible for me to remember any of that day’s events.
I love how in the midst of staying on his feet and on the chair he asks me why his skates make "striped white holes on the ice". That one threw me for a loop. And yes, precisely one half second after this video stopped Will did in fact end up in the wet section of ice. I’m glad we got out there last night as it looks to hit the 40’s today, near 60 tomorrow, and then stay above freezing through Saturday.
Yesterday my parents and all of their friends organized a Christmas party for all of their grand kids. My brother and I grew up with all of these families and most of our childhood experiences were as part of this extended family. Now that we have all grown up and have families of our own it is harder to get everyone together but our parents all do a great job of making it happen from time to time.
As there was food, music, games, and adult beverages it was sure to be a good time and since Santa was going to pop in at some point we knew the kids would have fun. However, there was something horribly amiss with Will yesterday. As of 1:30pm we didn't think he would be going as he was nearly hysterical and pitching a fit at the house.
We were unsure what the problem was but we have been giving him anti-nausea meds (zofran) from Wednesday through Sunday on the weeks he gets his chemo. It ran out on Saturday and we called in a refill but where told that they were all out so he didn't get his dose yesterday but that, while different, certainly should not have resulted in what we saw yesterday morning.
In any event, we were going to the party regardless and as always he managed to have a great time although he still wasn't quite himself. He was very excited to see Santa and Evelyn kept us busy attempting to leave the function hall via the stairs about 75% of the time we were there. Will and I were downstairs at about 6:45 this morning and he seemed more like himself before I left for work.
Here is the video from Evelyn helping to unload the dishwasher last week.
Here is Will performing his new favorite activity....running and diving to catch footballs. We did this for about 35 minutes this morning and he is getting much better. However, this time we did it on a rug to save his knees. For a few minutes Molly got in the mix and was playing defensive back and Evelyn was trying to tackle me.
And finally, here is Will in my office on the day after Thanksgiving. Nobody likes to work that day but since I was only coming in for a few hours, he wasn't in school, and I was going to try and take him to the Bruins matinee that day I figured why not. There is always construction going on outside the window and you can see here that he was disappointed to finally notice that it is all gone.
Will asked if he could give Evelyn her bottle one day and what you see here, just before he started gagging and demanded we taker her, is the one and only time Will gave Ev her bottle. This morning Will and I went downstairs early and the first thing he asked me was if the Bruins won. I said I did not know but we could check the score to find out. So, instead of watching Curious George, Martha Speaks, or Sid the science kid (I truly dislike that show) we watched NESN sports desk.
And while the TV was just 'on' and we weren't really watching the program it was a nice change of pace. What happened at 8am was even more remarkable as we discovered that NESN plays the prior nights Bruins game at 8am. So when the game came on this morning Will was thrilled to see the Bruins play the "lightning guys" again. He is a huge fan of Tim Thomas and it absolutely kills me.
The picture below is hanging in the kids playroom and it was a gift from one of our friends that we have made through this website. The following is from an email she sent to me and let me first say that Will is going to be VERY excited about this:
"Guess what I won in the Untied Way raffle here at work?? An autographed photo of Tim Thomas -I had no idea what I was going to do with it UNTIL I read your entry. I don’t know how excited Will will be with it, but an autographed photo of Tim Thomas is on the way to your home!! Enjoy."
It will be going right next to this one and Will is going to be the happiest kid in town.
This morning I felt so very fortunate that Will has survived this long, and is feeling so good, and that I was able to experience things like this with him. I get to see him and his sister play and fight over things like the remote control for a submarine that Evelyn is holding in the picture below.
This morning, right before I left, I was able to get about 30 seconds of video where Evelyn was standing next to the open dishwasher where she was taking out the utensils, one at a time, and handing them to Dina to put into the drawer. My son is old enough that he wants to watch sports with me and somehow our 'baby' is suddenly helping to empty the dishwasher?
Sometimes a moment like this happens and you just want life to slow down but it does not. It is like being on some wonderful ride at Disney that is being operated at an absurd speed by an operator that simply ignores your pleas and protestations to slow down. And while you can enjoy the ride the sheer speed that it is operating at makes it nearly impossible to savor the ride as much as I would like.
And that is what I'd like to do right now.
To simply savor every wonderful mundane moment of each and every day.
Savor the fighting, the lack of naps, the ups and downs, the teething, the world of food allergies, the diapers, the bottles, the lack of sleep, the need for caffeine, the receding hairline, the expanding wasitline, the tantrums, the bliss, the joy, the love, and the simple fact that just being fortunate enough to have a family gives my life a resonance, permanence, and an extraordinary meaning all by the sheer act of existing.
Get married.
Add two kids.
Enjoy!
So that is what I’ll continue to try and do. I'll continue to make an effort to always be 'here' and while I can't do it all the time, thanks to the wonderful world of pediatric cancer, it is what I will strive to do. 
Will and I were playing some stick hockey out back and Evelyn got herself a stick and joined in. She is literally the most unbelievable child. Will didn't walk until he was 13 months and Evelyn, at the same age, is playing hockey, climbing onto train tables, couches, end tables and everything else.
She is into everything and she is absolutely hysterical. Every morning when I'm getting ready to leave for work she starts following me around saying 'bye bye dada' and then is stopped by the gate to the front hallway before trying to pull herself over it. It stinks to leave but it is nice to be missed…..if that makes any sense.
Dina brought the kids down to Rhody once again for Will to get his chemo so I'll be arriving home to a slightly different boy than the one I left at the house this morning. Yesterday when Will was on his way to school he asked Dina if she locked the doors to the house. She said yes and wondered why he had asked and he replied that he wants all the doors locked when we leave so Woozles can't get in and take his toys. I’m unsure where this new ‘fear’ is coming from but I’ve tried to reassure Will that Woozles do not exist and that our house is always locked and Molly would attack anyone attempting to get in. He did not seem impressed.
My favorite cartoon of all time growing up was always Tom & Jerry. I only watched it one time in the past 10+ years and that was when Will was in Philly at CHOP and getting MIBG therapy nearly 2 years ago. Will was 2 years old at the time and he was getting a constant IV infusion of a psychoactive drug help him forget that he was lying in a bed 24/7 for about a week and that there was a plastic tube inserted into his bladder to remove his radioactive urine directly into a lead lined box in our lead lined room. Given the drugs he had on board I thought this may have explained his hysterical laughter when he and I watched Tom & Jerry (I was also laughing like a nut). Dina was not tickled pink at my choice of programs but at this point Will was so goofed up on drugs that he requested the same DVD non-stop for days and I was about ready to flush myself down the toilet to escape it so I was happy for the diversion.
Fast forward 23 months and I have recorded an hour long episode of Tom & Jerry on the DVR (unbeknownst to Dina). As Will was taking a bath with Evelyn last night (I forgot to mention that they have started doing this) I scanned a few minutes to see if there was a 5 minute episode that he could watch that wasn't too violen0, as I'd fear for Evelyn's safety in the role of Jerry to Will’s Tom, and I found one (sort of).
I put Evelyn to bed and Dina brought Will up but 30 minutes later he came downstairs and was a bit upset. I wasn't sure what he wanted but I quickly decided this may be my only chance to let him watch T&J before Dina permanently deleted if form the DVR and stabbed me in the throat with a butter knife. What I quickly learned was that, if anything, the psychoactive drugs probably blunted his laughter as he nearly pitched a fit last night. I have never seen him giggle incessantly before and by the third viewing of this 'safe' episode I was convinced that Will had been taking medicinal marijuana without my knowledge as nothing could be this funny. His laughter was so over the top that eventually Dina had to come down to investigate and Will made her watch it with him. He acted out the entire thing and kept telling Dina "watch this!" and in spite of herself Dina had to laugh. Other than the use of an axe (I mean really, who amongst us doesn’t occasionally use an axe to open up a closet door?) I think we have saved irreparable harm to Will.
When he first awoke today he asked me if he could watch it again...and further stated he couldn't wait to tell the kids at school and his teachers that he was watching "Jerry & Tommy". If you have six minutes and 23 seconds then you can watch that episode right HERE and let me know your thoughts (Will's favorite part is when Tom is wearing the toothpaste glasses.)
One final note: Will is officially DONE with liquid medications. His final med was Bactrim twice a day three times a week but he can now take ½ a pill twice a day in lieu of 5ml’s of liquid. I haven’t heard from Dina yet about his visit but at this point in the day I’m hoping that Dina & Evelyn are napping upstairs and Will is playing with his cousins at their house in Cranston.
On Saturday night I met up with two friends to go out for a few drinks. We just sort of randomly bounced around to a few places in the town next to where I live and upon entering one place I spotted a picture of Will on the front door. This picture was on the flier that the "Friends of Will" have been using to promote the upcoming fundraiser in Boston on January 24th. It was a bit surreal to see this on the doorway; just as it was when I was walking into Dunkin Donuts and noticed it.
Will was getting his class picture taken today and Dina wanted to get his hair cut for it. Of course I never called to make an appointment. So last night I brought him to the barber at about 6:30 and he got his haircut. As I sat there watching him and laughing I turned my head to the left and was looking at a newspaper article pinned to the wall when, once again, I saw Will. His great smile coming at me right from the middle of the flier pictured below.
It is hard to describe what this experience is like. Last Wednesday there was another fundraiser for MagicWater and to walk into a room filled with people who are helping to raise money to save your sons life is incredibly powerful. All of the money raised by "Friends of Will" goes to fund Dr. Sholler's work at UVM via the MagicWater project and I know it is money that is incredibly well spent. I appreciate all of the support and hard work and effort in making these things happen. I know that great things are going to happen.
(Note: For all of you that have asked how to donate items for the raffle and silent auction in January (sorry...I owe some of you replies) you can simply email:
friendsofwilllacey@hotmail.com
And they'll be able to answer any questions on how best to send your item.)
It is so funny how kids love to mirror or mimic what those around them say. This morning Will has adapted what he must hear from Dina and I each day to his routine. He woke up this morning saying "I'm really tired...I didn't get ANY sleep last night! How did everybody else sleep?"
His other new thing which slays me is that he'll finish his dinner and say "Oh boy...and I stuffed!" However, he'll want dessert and quickly add in "this part of my belly is really full with chicken and rice, but there is a little space over here that has room for dessert." He does this while pointing to different regions of his abdomen and it never ceases to make me laugh.
Part of cancer parenting is that you are numb to certain things you would have stressed out about before. It is not that you don't care and aren't concerned, but your reaction to these events is much calmer, more under control, and not hurried.
Will fell off the couch the other day and fell on his wrist. We knew this because he came out to the kitchen after we heard a heavy 'thump' and was holding his wrist limply and looked pale. He hadn't cried out and was not in tears but he was not using it very well. I made him try to throw me a ball and he dropped it twice and it was at this point that I thought he may have broken it.
If he did not have cancer I would have been all over him and rushing to South Shore hospital for x-rays. Instead, I was thinking "maybe we should give him a bath before we go since if he has a cast on his arm it will be a while before he can get a proper shower or bath in".
Before you call DSS...he wasn't crying or in pain but he is the kind of kid that doesn't really cry when he falls...so I felt it perfectly possible that he had fractured a bone and wasn't complaining. It was just that, in the grand scheme of things some Tylenol and a bath before an xray and a cast was a perfectly 'fine' thing to consider.
Luckily he was fine...but it was interesting to not our initial 'parental reaction' in the initial stages was, and remains, very muted. I think this had lent itself to our kids having a calmer response to falls simply because they sort it out on their own without looking to us freaking out and thinking..."hey! I should be crying!"
At least that is what I tell myself....
I recently bough the song "In a big country" for my Ipod...I just watched the video HERE.
All of these 80's videos were completely absurd in their own way but what is the deal with the story line here? Can anyone enlighten me?
The way I see it...this guy and his buddies are running towards a burning building to save someone before being knocked unconscious by this woman. Eventually they ride their 4 wheelers, go scuba diving, and someone scales down a rock face to eventually hug this woman. I'm so confused.
Will was wide awake at 2:30 this morning. He claimed there was a woozle downstairs attmepting to steal all of his toys.
I'm going to have a complete mental break if I don't get some sleep soon.
The below video links are all I've got as my brain is like a dry sponge today.
Emily was at our house and she and Will were listening to the Chipmunks movie soundtrack and dancing and singing. In this video Emily is playing Alvin, Will is Simon, Molly our dog is Theodore, and Evelyn is "Dave". When Will stands up on the ottoman he can see himself in a mirror on the far wall hence the funny faces and 'thumbs up' at times in the other two videos below.
Evelyn is really grooving at the begining of this one...
And finally in this video Will is playing along with Alvin while paying tribute to the Who. My favorit part is the filthy look that Will gives Emily near the end when he spots the two fingers over his head.
