Monday, July 31, 2006

Asleep at the JFC


Asleep at the JFC
Originally uploaded by Will's_Dad.
Here is a picture of Will asleep in the infusion room at the Jimmy Fund. As usual, there has been a delay at the hospital and what should be a 5 hour day is going to be an 8 hour day. Dina, my mom, and Will arrived at 8:30 but he did not get his chemo until after 1pm due to various reasons. Also, Will once had a reaction to Etoposide (a rash) so instead of getting it over 1 hour, they will give it to him over 2 hours.

Therefore, he will get two hours of etoposide and then two hours of carboplatin today and tomorrow. He will only get two hours of etoposide on Wednesday. When you factor in the pre-chemo medication and the time it takes for flushing the liens and waitng for nurses it should be a 5-6 hour day tomorrow (hopefully).

Fourth course of treatment

Today is day one of Will's fourth course of high dose chemotherapy. Unlike the first three, this one can be done on an outpatient basis. You arrive in the morning; get your chemo and medications, and then head home at the end of the day. It is surprisingly exhausting for the people who are there with Will. Today that is Dina and my Mom. We always feared being admitted to the hospital, even for chemo, but it is odd to find out that I have some anxiety this time about the fact that Will is coming home tonight. The reason for this is that when Will is in the hospital he is hooked up to machines that allow him to get his anti-nausea medication via IV on a set schedule. For example, every 3 hours he is either getting Reglan or Ativan on top of his 24 hour dose of Zofran. At home, we have to give him his medicine orally, which given his nausea, can make him vomit and 'lose' the medicine. Also, since Reglan orally requires a ridiculous amount of oral fluid we do not give it. Therefore, we have to give him Ativan every six hours. This means he is due for medicine in the middle of the night so you are faced with two options. Wake him up, give him his medicine, and hope he does not get sick or fall back asleep. Option 2, wait until he wakes up to get sick, clean him up, give him his medicine, and hope he falls asleep.

We are forced to play it by ear based on how his day/night go. He is getting a combination of Carboplatin and Etoposide.

Carboplatin - Commonly: decreased resistance to infection, bleeding, nausea and vomiting. Uncommonly: hearing loss, kidney, liver or peripheral nerve damage.
Etoposide (VP-16) - Commonly: nausea and vomiting, hair loss. Uncommonly: serious allergic reactions with chills, fever, low blood pressure and breathing difficulty, low blood pressure, swelling or itching of the face, hands and feet, a small risk of developing leukemia.

Will is currently at the Jimmy Fund awaiting his drugs

Friday, July 28, 2006

Surgery was quick...Will is home and happy

We left the house at 5:15am and arrived in plenty of time for his appointment. We then went in to Day Surgery where I'm sure Auntie Gail made sure everything would run smoothly. Before we could even finish our coffee Dr. Shamberger came out and told us he was done, there was nothing to it. We went to recovery where Will slept peacefully for an hour before we woke him up, gave him some water, and then we were on our way. He hasn't napped, is full of energy, and seems fascinated witb his belly, I don't know if it is numb and feels funny, or it just feel different without that hose but he keeps rubbing it and smiling.

It went as well as could be hoped and we have to keep it bandaged for two days, and then we can get it wet. However, we need to prevent it from being submerged for ten days so we'll have to wait little bit before his first proper bath in weeeks.

Thursday, July 27, 2006

Rocker


Rocker
Originally uploaded by Will's_Dad.
Will is heading home this afternoon and I am looking forward to having Will and Dina back home. It is nice to have a few days to catch up on small errands and tasks (cutting the lawn, returning a cable box, weeding the front walk, sitting on the couch and reading a book) but I'm ready for them to be home. For most people, tonight would be a night of anxiety and worry about their child having to be given anesthesia and then undergoing a surgical procedure. However, given how many countless times Will has been knocked out for scans and surgery this is like a monthly check up at the pediatrician.

It is funny how quickly you become acclimated to certain aspects of an unfortunate reality. We will never look at chemo as a non-event due to the acute side effects as well as the potential long term ones; however, the surrounding peripheral medical experience is no longer the least bit of concern. The fact that I mentally feel about as much anxiety about tomorrow for surgery as I would if Will was getting a haircut (if he had hair) is something I'm not sure how to feel about.

GOOD because I don't want to live in a permanent state of anxiety that would turn my hair white; BAD because in the span of 16 months the idea of my son being knocked unconscious and cut open is not the least bit disconcerting.


Due to the fact that I can not ship these bracelets in an envelope I've decided to collect all of the requests from everyone and then go to the post office about once a week to mail them out....so expect them early next week.

Wednesday, July 26, 2006

Driving Miss Emily


Driving Miss Emily
Originally uploaded by Will's_Dad.
I just got this picture and it cracked me up so I had to post it. I'm getting the impression that Will has spent the past 48 hours behind the wheel of some form of Automobile. If he isn't driving Murray around or driving Grandpa Mike's car he apprently is giving his cousin Emily a ride as pictured here.

We received a cryptic voice mail at home today from our health insurance company to call them about Will. I immediately thought that this is when they inform me of some unknown clause in this health care plan where we maxed out coverage and I will need to start ponying up big money. I called the woman back and my fears where unfounded, they simply wanted to let me know that they have a case management group that I could use to help us to understand and maximize our coverage options if we had any questions. I explained that I did not....... but I was very relieved. It was an irrational thought, but it occured to me nonetheless.

It looks like Will is going to get to meet Wally next week on one of the days he is getting chemo, I will be sure and document the experience with plenty of pictures. Also, from what I understand the tickets we are getting for the Wiggles are in the front row so I have a feeling that I will be struggling to keep Will off the stage

Surgery is on Friday


black_car
Originally uploaded by Will's_Dad.
I called the office of Will's surgeon this morning to confirm what time his procedure was scheduled for tomorrow. She stated that his schedule was full for tomorrow but that they could take us at 7:30am on Friday morning so I let Dina know and the Gammino's are happy to hear that Will is going to spend another night in Rhody. Will is having a great time and when I spoke with Dina she was watching Will driving Grandpa Mike's car and tooting the horn non-stop while sitting in Mike's lap. As you can see in this pirture, he is driving Murray around in his own little car as well.

My house seems extemely large and empty with just myself and Molly but I know it is difficult for Dina to be so far away from her family and I am very happy that she is able to spend time with them this week without worry, it's almost like being normal parents.

There is a good story on the Panaro family on NECN's website regarding the Pan Mass challenge and fundraising for the Jimmy Fund. Kevin Panaro is the nephew of Mark and Kim Taylor and this story is a happy one to watch. They are a very nice family with great kids and it is good to see him doing well. Visit :
http://www.boston.com/news/necn/Features/
And then look for the story
"Boy inspires NECN to ride in PMC"

Tuesday, July 25, 2006

The Ocean State


Lying on the floor
Originally uploaded by Will's_Dad.
Dina's father Mike was able to get us three tickets to the Wiggles show in Worcester on August 18th so we will be able to take Will to see them. That is great news as we can not wait to see his reaction and we were dissapointed that he was going to miss it. The down side is that in order to go we have had to bump his last round of chemo back two days. Medically this is perfectly fine, but as Will's 2nd birthday is August 24th the bump will still have him home from the hospital, but most likely he will not be feeling well. It is a worthwhile trade off as we can always delay his celebrating his birthday a few days until he is up for it.

Will is having a good time down in RI and may be going to the Aquarium in Bristol CT today as Dina's parents are not far from there. It is quiet at the house, too quiet, but Molly is doing a good job of keeping me company and I've golfed a few times so that has kept me out of the house, although I'm still tiptoeing around the upstairs as if I'm going to wake everyone up in the morning.

Dina and Will had a little excitement yesterday when heading to her parents. Dina was on Rte. 4 South down by "Fiddlesticks" when a car with RI plates changed lanes on the highway without signaling and smacked into the side of her car. Luckily, Dina was able to control her vehicle and not swerve off the road (she was in the right lane) and both her and Will were not injured. However, the other car (a new blue VW beetle) didn't pull over when Dina did and they sped off like nothing happened. Dina's car was a little scratched up/dented but nothing to dramatic, and other than a good scare everyone was ok.

Monday, July 24, 2006

Oh No!!!!!!!!!


Oh No
Originally uploaded by Will's_Dad.
A few years back I dropped off some Wiggles stuff as a get well present for Mikey Cosgrave. One of the items was a Wiggles doll that he apparently still has to this day that I know his dad ABSOLUTELY HATES. He was not happy with me for buying it.

I did not know then why I should not have bought his son a talking doll. Now I know, and I am sorry.

Payback has arrived today, and his name is Murray.

I don't want to refurnish my house


Toys
Originally uploaded by Will's_Dad.
There are so many great things about being able to share pictures and stories with everyone about Will and how he is doing each day. One decidedly unexpected part of this process is that I am getting a more objective and frightening look at some parts of my house. For example, we have a rug under our dining room table that Dina picked out and I always thought was nice. We haven't had it that long but it is the kind of thing you stop noticing after a while. And then you post a picture with the rug in it and it sort of jumps out at you and says "I'm a red floral rug, it is 2006, you need to replace me or start dressing in Victorian era clothes and having tea parties".
I'm going to have to start posting pictures from outside in the yard, or at someone else's house. I think this is a great picture of Will, and I still like this rug, it just kind of makes me nauseous in this picture and I'm compelled to drag it out in the street when I get home and light it on fire.

I'm going to order some more Will-Power wristbands as the amount of people requesting them has been surprising, just let me know if you want one and we'll do our best to get them to you. Also, a hearty thank you to everyone who has been generous enough to donate money to Tara Shea as she prepares to walk 26.2 miles to raise money for the Jimmy Fund (and more specifically, for Neuroblastoma at the Jimmy Fund). I checked today and she is nearly at $6,000 and is 4th on the Top Fundraising list!!! Great work Tara, we appreciate your efforts greatly. Anyone wishing to support Tara can find the link to her fundraising site on the upper right hand side of this page under links.

Will and Charlie


Will and Charlie
Originally uploaded by Will's_Dad.
On Friday Dina took Will to the mall to meet her friend Danae Foley and her son Charlie. They had a great time playing together and eagerly mirrored each others actions for hours on end at the mall. They shared lunch and overall had a great time so Dina and Danae made plans for us to get together again on Sunday. We went to the Foley's on Sunday afternoon with Danae, her husband John, Charlie, Danae's mom, her sister Daria and her husband Chris. Once again the kids had a great time and it was nice to see Will playing with another kid and having a great time without worrying about germs, going home to meet the visiting nurse, or worrying if he had a fever. Sunday was a day that allowed us to feel like normal people visiting friends and having kids that play. It was a nice break from the usual stress since Will is feeling well and his chemo was delayed until next Monday since he needs to get his port removed this week. This gives us a window of high counts, no shots, and the ability to have some fun without worry. Dina is going to take Will down to her parents for a few days while she can since his next scheduled visit is with the surgeon on Thursday. In the meantime, it is a great opportunity to live like regular people and take advantage of the fact that we do not have any appointments.

Friday, July 21, 2006

Will-Power


boots in the kitchen
Originally uploaded by Will's_Dad.
Life follows your lead....that is what I believe. I am an optimist in how I view the world and am always convinced that things are going to work out. I firmly believe that your mind set and outlook on life are intrinsically related to the path your life takes. If you believe it, and live it, other people can't help but feel it, and live it. Thus life and the path you are on become a self fulfilling prophecy. By believing that things will be OK, things will be OK.

Of course, I've been forced to question this outlook after Will's recurrence and treatment failures. It has made me question my world view, and second guess my every thought. One way I tried to work through this was by wearing a reminder to help keep me on track, I could call it a good luck charm, but that really is not what it is.

Basically, it is a reminder that throughout the day I become aware of, and when I do, I refocus my mind on being positive and hoping for the best. When Will was first diagnosed I was given a "Livestrong" bracelet at the hospital and I put it on, never taking it off for well over a year. It had some mystical lock on me….if I took it off; somehow, Will's cancer would come back. When his cancer did come back, I took it off

I then decided to shake up my 'luck' by wearing a bead necklace. Hopefully it would help me to remain positive by reminding me throughout the day to not get down. I want to be positive in reality, not just in words, in the hope that my attitude would help buoy the spirits of my family. When the second surgery was followed by two rounds of chemo that failed I tossed that bead necklace in the drawer and decided to give it up with reminders.

Yesterday, we received a package in the mail from Caroline Bridge who works at Thomson. She was an invaluable resource at work when I needed guidance on HR issues. In the package she sent was a large number of red wristbands. When I picked one up to read what was imprinted on the band it said "Will-Power".

I put one on my wrist last night and hope that this time I will remain positive no matter what, I will be strong, I will weather any storms, I will not have doubts, I will not be inpatient, and most importantly I will be the best father I can be for Will.

Hopefully that will be enough.

Thanks to Caroline for the timely gift that gave me a much needed kick in the rear, as I think I was starting to feel sorry for myself.

Thursday, July 20, 2006

Murray has moved in


Murray has moved int
Originally uploaded by Will's_Dad.
Dina sent this picture today, for those of you who are unfamiliar with the Wiggles I apologize if you do not understand. However, Will is a huge Wiggles fan and in case you did not know, the Wiggles are four Australian guys who sing songs and act like big kids. All of their songs are hypnotically catchcy, to the point that they are in my head all day long and I actually find myself singing the words to myself.

One of the guys is named Murray and he has a red shirt and plays the guitar. The have a 'big red car' that the drive around in from time to time so as you can probably tell, Will thinks he is Murray. He watches the Wiggles while wearing his Red Shirt, playing his guitar, and sitting in HIS big red car.

Will is doing OK today, his face around the eyes is a little puffy from yesterday but the doctor said a little benadryl should take care of it.

They got enough.....


Build a Will
Originally uploaded by Will's_Dad.
We received a phone call last night telling us that the first day of pheresis was able to collect enough stem cells so that a second visit was not necessary. This was a very liberating call since we also learned that due to the double dose of his daily shot his ANC had exceeded 10,000 so Will does not need a shot today. Also, the antibiotics Will had been taking to make sure his line was not infected is finished as well. This was 1.5 teaspoons four times a day so Will is happy not to take that anymore.This means that we can enjoy a few days withouot scheduling a nursing visit, giving Will a shot, or going to the hospital. It feels like we have been paroled...
As of now, his next scheduled procedure is next Thursday when Will is supposed to go in and get his port removed.
Someone gave Will a Red Sox "Build a Bear" and it came in a really cool box that you coud see into through holes in the side. Will loved to put his blankets in the box and then carry them around the house like it was his briefcase. As you can see in this picture Will climbed into the box, sat down, and was watching TV so we had to take a picture.

Wednesday, July 19, 2006

Pheresis Machine


Pheresis Machine
Originally uploaded by Will's_Dad.
Here is a close up of the machine....all those lines are filled with Will's blood...it is Frankensteinian

Pheresis


Pheresis
Originally uploaded by Will's_Dad.
That machine you see in the background is the pheresis machine that Will is hooked up to. It is collecting his stem cells as we speak and I am happy to report that the double dose of G-CSF Will has been getting has skyrocketed his ANC up to 16,000 from 198 two days ago. The pheresis people are checking with Will's doctor to see if we can stop giving him his daily shot. If this goes well then they are going to remove his port next week, most likely next Thursday.

Last night Will and I took Molly for a walk around the neighborhood and then Will helped me to finish cutting our lawn. He really enjoys a good grass cutting. Nana Daryl and Dina took Will to the hospital again today and Papa Ed took Molly out so she wasn't stuck in the house alone while I was at work.

Tuesday, July 18, 2006

Stem Cell collection to begin

Dina called me at 3:30 from the Jimmy Fund to tell me that she got a call from the stem cell team at Children's. They have been getting copies of Will's labs and apparently his counts are high enough today that they will begin the stem cell collection tomorrow. The nurses came and checked out Will in the clinic to make sure he was 'healthy' enough to undergo the process and they gave him the OK.

What this means is that Will has to be back in Boston at Children's hospital by 9am again tomorrow morning. They will then hook him up to a machine that will take his blood out of his body, remove his stem cells, and then return the blood back into his body over a few hour period. This will take place until about 1pm and then he will have to go back and repeat that process again on Thursday. Hopefully they will have collected enough at that point, otherwise, Will is going to have to go back again at 9am on Friday.

Based on what we heard today we did not expect this to happen until Friday or next Monday so the call caught us a little off guard. As Dina, Will, and my mom are still at the clinic and won't get home until later I'm sure Dina is tickled pink at the prospect of heading into the hospital all week. On the bright side, the sooner they get his stem cells, the sooner we can yank this line out of his body.

If you are curious why Will is getting this done you can read about Autologous Stem Cell Transplants on the web but I'll give you my murky understanding. Autologous indicates that you are collecting and being given your own stem cells as opposed to an Allogenic stem cell transplant which (like receiving bone marrow) you get the stem cells from someone else. I think there is some debate on what type of transplant works best for kids with neuroblastoma but I think allogenic is not used frequently or in many places.

The concept behind why we are doing this for Will is that by collecting and freezing some of his stem cells allows a new treatment to be given. What would happen is after Will's fifth round of chemo he would be given chemotherapy that would technically kill him. The dose that they would give would obliterate his immune system and he would be unable to recover. Someone got the bright idea that since kids can't recover from this, why don't we take some of their life sustaing stem cells, freeze them, and after we wipe out their immune system we'll give them some of their own cells back.

This would act like jumper cables on your immune system, allowing it to get started again before your body gives out. This process involves a prolonged hospital stay in a secluded room on the stem cell transplant floor where a sterile environment is key to preventing infection. After 2-4 weeks your immune system hopefully recovers enough for you to leave the hospital.

This is something that most high risk NB kids will get during their treatment. The difference is that at DFCI/Children's they do a double autologous transplant so that once you are recovered they whack you with another lethal dose of chemo and then give you some more stem cells. When Will finishes the remaining two rounds of chemo they will do scans again. Since this treatment does not appear to have worked, that would mean that his tumor is chemo resisitant and there would therefore be no reason for him to get the stem cell transplants since they are only used along with giving more chemo (something that he will not need since it does not work).

Since there is a very small chance that he would be eligible for these transplants we took the step of collecting stem cells just in case. Even if Will does not get this treatment, there may be some radiation treatment options (MIBG therapy) down the road that would require Will having some frozen stem cells in order to participate in that program.

Getting Blood


At Dana Farber
Originally uploaded by Will's_Dad.
Will went to the Jimmy Fund Clinic today with Nana Daryl and Dina at about 8 am to get there before 9. They drew his blood to run labs and he just finished getting his platelets. They are waiting on the red blood cells now and they should be started soon. His crit went down since yesterday and his platlets went up but his ANC is still very low.
Dina took this picture of Will today as it looks like he made his way over to the crayons.

Molly seems to be doing a little bit better and I now have a lawnmower to cut my grass. A funny side note to Molly and her vet visit is that in the past 16 months Will has exceeded 600K in medical expenses. However, the total out of pocket I have had to spend, thanks to insuance, is less than what I just paid to have a vet pump a few bags of saline and antibiotics into my dog.

What a strange world we live in sometimes.


I am at work and a few miles away from where I am sitting my son is lying on a bed with an iv line attached to the port hanging out of his belly. He is patiently waiting for a nurse to come in and to pump some strangers blood inside of his body so that he can go home.

Monday, July 17, 2006

I'm free!!!!!


I'm free!!!!!
Originally uploaded by Will's_Dad.
The roller coaster ride continues today as the Vet called at 4pm to say Molly could go home. Dina sent this picture from her camera phone and you can see how shell shocked Molly looks. As I got this picture in my email and was happy that our family was going to be back together I got a phone call from Will's nurse at the Jimmy Fund.
Will's ANC is 98 and he needs to go in to clinic to get platelets and blood. He just got blood a week ago so I was shocked that his crit dropped down to 21.9 and this will be the first time that Will has ever gotten platelets.
We get Molly home and now we have to bring Will back in first thing tomorrow. He will first get checked in, have his blood taken, be given his GCSF shot and then will get platelets. Once that is done he will get blood which takes a 3 hours transfusion. It is going to be another FULL day at the clinic for all this work (with the normal delays) while worrying that my child is going to get sick since his counts are below 100.

A milestone I forgot to mention


Pizza
Originally uploaded by Will's_Dad.
Uncle David stopped by on Saturday and dropped off some home made pizza that we could cook up and enjoy. When it was cooling after coming out of the oven Will very much wanted to try some and ended up getting a little worked up. Eventually he sat in his chair and demanded the entire pizza be put in front of him and he proceeded to eat, lick, or chew on every piece before then moving on to stealing the meatballs I was about to eat. This picture captures his nap deprived mood perfectly.

As I had mentioned before, Will is in love with the Wiggles. He dances and sings and plays his guitar along with the band and he really enjoys Murray. Murray is the guitar playing member of the band who wears a red shirt and is quite tall. This weekend, Will was playing his guitar and dancing when Dina pointed out that he looked like Murray because he was wearing a red shirt. Will thought this was a fantastic devlopment and he continued to show everyone his shirt all day long.

This was funny until this morning when we learned that it may end up being a slight problem. Will was demanding that he wear his Murray shirt again and refused to take of his Red pajama top until he had the red Murray shirt to take it's place. Dina was doing a quick load of laundry to get it ready. I think you should all be prepared to see Will wearing a red tshirt in every picture from now on.

Molly and Will are both feeling better

We had the visiting nurse look in Will's mouth yesterday for mouth sores since he was asking for butter on Saturday night. She seemed to think it looked like he was developing a few sores so we have been watching Will closely. He finally took a good nap yesterday in his crib at the usual time, and then last night he actually went to bed in his crib before 9pm and proceeded to spend the entire night without waking up so we are very excited that he managed to get some sleep.

Dina called the vet this morning and they said Molly seems ok so they gave her some water and will give her some food in a few hours. If all goes well they said that they will let us know if she can come home at around 4pm today.

Sunday, July 16, 2006

Umbrella's, Lawnmower's, and a sick dog


Molly & Will
Originally uploaded by Will's_Dad.
Living your life under the umbrella that is Will's disease makes everything that goes wrong in your life seem like another lost battle against some diabolical foe out to destroy our lives. If you try, and are able to do so, sometimes you can peek your head out from that umbrella and look at each incident on its own merits and see that sometimes things go wrong in life, and that is just the way it is.
These events, taking place in a world without that umbrella are just the usual speedbumps that we encounter in our day to day lives.

On Saturday I finally had an opportunity to do some yard work so I grabbed my lawnmower and set out in the noon day sun to tackle the monumental task of mowing my postage stamp sized lawn. I know it doesn't seem like much, but doing something as mundane as cutting the grass is a difficult thing to get accomplished at times, and when I do get it cut it makes me feel that I have gotten something done. I was about halfway finished with my back yard when my lawnmower engine seized up and died on me. It kind of made me chuckle and say to my self 'typical'. This is what I mean when I talk of the umbrella of Will's disease. I bought a crappy lawnmower five years ago for cheap money that I rarely service....it is no wonder that it broke, I'm shocked it lasted this long. However, given the past year + of our lives it seems like some malignant cosmic force is out to get us.

This, of course, is silly.

But then my phone rang on Sunday morning and it was my mom calling. We had not been getting much sleep and when Molly came home the other night she kept me up most of the night having to go outside to go the bathroom. She vomited a few times and was eating a lot of grass (like dogs are sometimes prone to do). We did the usual task of giving her rice and boiled meat and keeping an eye on her. My parents took her back to their house (she stays there during chemo to avoid any toxicity) Friday night so that Molly would not interupt our sleep and she seemed to be doing better.

When my mom called she stated that Molly was not only vomiting again she was also attempting to go the bathroom. Sometimes she did and sometimes she didn't but it appeard that she was not going the bathroom but was dropping blood on the ground.

Daryl and Ed took her to South Shore VCA as our vet is closed on Sunday and does not have 'emergency' care. They checked her out and she has blood in her lower GI tract and her blood tests indicated dehydration. They said it was either a blockage due to something she ate or it was some GI Hemmorage that dogs sometimes develop. Therefore, they needed to do an xray to make sure there was not a blockage. They woulud then give tons of IV fluids and antibiotics overnight while observing her.

We cancelled our plans to go to the Red Sox game (and gave the tix to uncle Carl) and just went to get some lunch while waiting on the call. Of course, I was expecting the xrays to show that my 4 year old dog was filled with cancerous tumors and then learn that something we did gave both our dog and child cancer. The phone rang on our way back from lunch and the xray did not show anything obvious. They are going to keep her overnight as planned with the hope that she will be better in the morning. Some dogs recover very well with this treatment in one night, others need further extended treatment.

I dont' know how many of you have ever been to VCA but I'm pretty sure they are a publicly traded company on the stock exchange, and therfore every bill you get from them is terrifying. When this visit is finished it will end up costing us the same as a 42" Plasma and most likely was easily addressed by a $25 solution.

For most people, an unexpected weekend of suprise expenses like a new lawnmower and a crippling vet bill would seem like just a lousy weekend. To our family, it seems another brick on the impenetrable wall between us and happiness.


Molly is such an important part of our family, and I know that any dog person will understand what I mean when I say that. It is hard to have her sitting in a cage in a stragne place and we hope that she is doing ok. We are not ready to have anything happen to her as she brings so much joy to us and to Will. Will has been asking where she is when pointing at her empty beds around the house.

Saturday, July 15, 2006

Bone Marrow

Will's bone marrow test that was drawn last week during his surgery showed no sign of disease. It has not in the past and we did not expect to see it this time either. Apparently while in the hospital Will has forgotten how to nap. He used to be good for 2-3 hours of sleep mid day but he has stopped doing that and is also staying up until 10pm or later as opposed to 8:30pm.

He still gets up at the same time so it is just a matter of time before he gets tired and gets back on schedule (WE HOPE). He got his shot today and then helped me to do some yard work. He has been having some stomach discomfort but otherwise he is doing well.

Friday, July 14, 2006

Good News


Guitar
Originally uploaded by Will's_Dad.
Will had a hearing test today to verify if the drug Cisplatin damaged his hearing. Dina just called and he did not have any problems!
His next round of chemo contains carboplatin, another drug that can impact his hearing so they wanted to get the test done before that started to make sure he was still doing ok.

As you can tell by looking at the picture Will likes to play the guitar, and he has developed quite the technique by watching Murray of the Wiggles. Notice his slight squat position to really let him feel the music.

Will woke up last night and was excited to find Molly sleeping in his room for the first time....I put her bed in Will's room because I was hoping that he would stay in his room if he had company. Every time we leave the hospital we spend two + weeks getting him back on schedule but we hope Molly will help this time.

A while back I decided to register willlacey.com so that in the future, Will could have the domain name to set up a website devoted to his success as a doctor, a ballplayer, a musician, or whatever else he wanted to do. The website simply points to the blog, but I booked it for Ten years in the hope that when Will is almost 12 years old he will be harrasing me for a credit card number so he can renew his own domain name...I know it is silly but I felt it would have been bad luck to select any option other than the highest one for "number of years' when I was signing out.

Thursday, July 13, 2006

Taken this morning


feeling Fine
Originally uploaded by Will's_Dad.
Will tolerated this last treatment a lot better than the first two. We will see how the week goes, but for now (as you can see in this picture) he is eating and feeling well. They doubled his dose on the daily shots (to help with the stem cell collection in a week or so) which will lead to increased bone pain. We have a narcotic to give him to help with the pain that won't mask a fever...we are waiting to see when the pain starts.
The antibiotic is 1.5 teaspoons four times a day...on top of his zofran, ativan, benadryl, and bactrum it seems like we are constantly pouring medicine down his throat. Also, we flush his line twice a day so it can be a struggle at times if he doesn't cooperate, but for the most part he is a champ.
You just can't keep this kid down, he is relentless and people always say "kids are resilient" but honestly I can't imagine there are too many people like Will. As Caroline Bridge at Thomson stated...'there is a reson he is named 'Will'
It makes me so proud to see how stong he is.

Grand Prize


Grand Prize
Originally uploaded by Will's_Dad.
I found this picture in my pc and it reminded me that there was a time in Will's life where this storm of uncertainty did not rule our lives. This was just after Will came home and Mike Cosgrave came by to collect his prize for coming closest to guessing Will's birth weight (10lbs 4oz).
It reminded me that even though 95% of the days in the past 17 months have been tainted by this struggle, that it is still possible to be unconditionally happy.

In the fall of 2000 Dina and I were living in South Boston in a condo owned by my brother Carl and we were engaged to be married the following October. We had both had enough of living in South Boston's parking and traffic situation, especially after totaling Dina's car at the intersection of L and Broadway. Therefore, we took the money from the car being totaled, pooled it with all the savings that we had, and started looking for a house. Just before Christmas we put an offer on a house in Braintree and it was accepted. We moved in at the end of February 2001 and started fixing it up.
It had everything we thought we would need for the next 10 years or so, a good yard, three bedrooms, 1.5 baths and a walk up attic and an elementary school right across the street. We knew that we could spend a lifetime in the house if we had to, therefore we had the safety of not having to move if we started a family.

However, as I have a tendency to spend too much time imagining 'what could be' instead of focusing on 'what is' I ended up creating a problem. For some reason I was convinced we needed an addition on the house, and became so consumed by it that eventually I convinced myself and Dina that we could not raise a family here. This was reinforced after Dina's baby shower when the house was full of gifts and I instantly became convinced that the house was too small.

We had a great street, a great house, great neighbors (with a baby just a few months older than Will next door), and we were happy. Then we decided in the fall of 2004 that perhaps it would make sense to pack up a newborn, sell our house, and move.

My parents had finally decided to sell their house. They bought their house in May of 1972 and luckily for my Dad and for us, my mother was willing to move once she learned that we had expressed interest in buying the house. It had the exact same number of rooms as our current house, but every room was a lot bigger.
A small kitchen suddenly became a large eat in kitchen. All three bedrooms where bigger, the ceilings higher, the shed became a garage, and the street became a dead end. Our claustrophobic feelings where suddenly addressed without the pain of living through construction. All seemed well in the world.

And then we moved.

And suddenly, less than 60 days later, Will was diagnosed with cancer and nothing has been the same since.

Recently, I drove past our old house, a place where we lived when the world seemed full of limitless joy and opportunity. When your dreams started becoming reality, and all that you hoped for was starting to come within your reach. I have such fond memories of living there.

I drove by and the house looked horrible. The lawn looked like it had not been cut once this summer (literally, it was a foot high). The shades were all drawn and it looked like the house on the block where the crazy old lady with ribbon candy and 75 cats and every newspaper for the pasts three decades stacked in the living room lives.

Suddenly, it dawned on me that ever since we moved we have had a horrible string of luck. It looked like the house had been under the same relentless pounding that we had been taking since we had moved.

I immediately felt horrible about what I had done to my neighbors. Each family that bordered our house, or was across the street, had great people that were easy to talk to and the kind of people you HOPE you get as neighbors. The kind of people you want around when raising a family. And I did THIS to them?

It then occurred to me that perhaps our string of bad luck started when one of my neighbors bought a voodoo doll and cursed us for selling to some nut.

I think maybe I'll go cut the lawn over there this weekend and see if it breaks the curse....if nothing else it would be good for a laugh when/if the owners came outside and I flew off the handle on them, telling them to shut up and get back inside.

Pasta, Cookies, and Fancy Crab


Sink and Pasta
Originally uploaded by Will's_Dad.
From time to time Will walks over to our kitchen cabinets and asks to be put up on the counter. I stand behind him and we open the two cabinets that contain most of the food in our kitchen. He likes to perform a ritual that involves him pointing at items accompanied by me saying something silly. We have a can that looks like Tuna fish that has crab in it (Don't ask why). The label says "Fancy Crab" and I say it in a silly voice and he gets a real kick out of it for some reason. Luckily, no one will ever eat a can of Fancy Crab in our house so this game can continue for as long as Will finds it entertaining.
The reason I tell this story is to explain the picture above. Will and I were playing in the cabinet when he noticed a box of chocolate chip cookies that my Aunt Chris had dropped off. If you look closely you can see it in his left hand. He then noticed the pasta in the sink and we spent a good 15 minutes with Will playing with it as pictured here.
The way he was squatting reminded me of the Saturday Night Live character Mr. Peepers.....when my brother Carl walked in with my nephew about two minutes after this picture the first thing he said was..."will looks like a character from SNL..."
I eventually was able to get him off the counter by filling one of his bowls with Pasta and putting him in his booster seat where he ate some, fed some to Molly, and wolfed down three of Nana Ginny's meatballs. His uncle Michael and Nana Ginny came up yesterday and they played all day long. Uncle Michael also gave Dina and I two tickets to Sunday's baseball game so we are actually going to leave the house for a few hours on Sunday and not have it involve a hospital visit.

Wednesday, July 12, 2006

Dina and Will


Dina and Will
Originally uploaded by Will's_Dad.
I took this picture the night that Dina decided to stay in the hospital with Will. It has always been easier for me to leave Will since he loves his momma and he is used to seeing me leave for work. I give him a kiss on the forehead and he blows me a kiss goodbye whenever he sees me with my car keys.
Little boys always love their mom the most, and although it is never easy to leave your child in the hospital, it is especially difficult for Dina. Most nights she would have to stay with us until Will fell asleep to avoid having him get too upset and to spare her the torture of walking out of the room with him crying and screaming "momma". Sometimes I wish I got to spend as much time with Will as Dina does. I wish I had that strong of a bond with Will, but at other times I'm glad that he does not undergo any anxiety when I leave the house.
Also, I'm working on a plan where eventually I'll start spoiling him when no one is looking, I'll be sure to never discipline him, and I'll slowly work my way alongside Dina as Will's favorite person in the world.

Tuesday, July 11, 2006

I'm Home


I'm Home
Originally uploaded by Will's_Dad.
I got home at 6:30 tonight and I could not be happier about it! I have been dancing and jumping around (as seen here) the entire house and even after eating THREE hot dogs in the Hospital I sat down and ate a big dinner with mom and dad. Special thanks to Mrs. Lee Murphy for dropping of dinner for Dina and I that Will especially enjoyed. He ate a little of everything with much enthusiasm!

We gave him some medicine and hope that we can give him some more before bedtime in hopes that he sleeps comfortably in his own bed tonight.

It is difficult to articulate how impossibly good it feels to have him home.

Going home today


Dressing change
Originally uploaded by Will's_Dad.


Will finshed his chemo and is going home today with his mom and Nana Daryl. Dina stayed with Will last night and was relieved by Ed this morning. She came home, got a few hours of sleep and then took a shower and went back in with Nana Daryl this morning. Once Will eats, drinks, and goes the bathroom (he is getting medication to help this) he can go home today, hopefully before dinner time. He is going home with a prescription for antibiotics as the incision site for his new port has been bleeding and is a little red so they are being cautious. If it gets infected he will have to be admitted and they would have to pull the line before it could get used so we want to avoid that.
Will did not have a roomie again last night but we got a new next door neighbor who goes to the same pediatric office as we do. I think there are four patients at the Jimmy Fund right now who have the same pediatrician...I'm not a statistician but that has to be extraordinarly rare and I'm pretty sure they won't be putting that in their marketing material when attempting to get new clients...It is random and I know there are at least three different kinds of cancer but that is really strange.

Feel free to click on the photo to get a good look at how long that tube coming out of his belly is. It is curved in this photo so you can't appreciate it as much, but it is well over a foot and it really just goes into a hole in his stomach like that. It is sutured in place and a dressing is put over it...we have to pin it to his shirt to prevent it from getting tugged/pulled and causing it to bleed. There is no other way to say it nicely so I just have to say it...this thing SUCKS. He can't get it wet so he'll be Sponge Bath Will for the next two weeks until they yank it out. Assuming the collection goes well they will yank it sometime during the week of the 24th which may push his next chemo back a few days. His next round will likely start Monday the 31st and it is three days that can be done outpatient at the Jimmy Fund...so our sleepless nights will thankfully be done at home and not in a room with another heartbroken family. Currently he is still scheduled to finish his last round of chemo 4 days shy of his 2nd birthday.
Unfortunately this means he may not be able to attend the Wiggles concert.
They are playing in Rhode Island near Dina's parents house and we will have to see how his counts are doing that week, we are hoping he is doing well because he will absolutely lose his mind if he goes.

Monday, July 10, 2006

Day Five of chemo!


Nana's visor
Originally uploaded by Will's_Dad.
Will is getting his last dose of chemo for this course of treatment tonight at 7pm which will be followed by 12 hours of post-hydration. Once he can drink on his own and hopefully eat and go the bathroom we shoudl be able to go home tomorrow. His new port site looks a little red and has been bleeding so they are going to start him on some antibiotics to make sure the line is not infected.

Nana Ginny came by today and as you can see in the picture, she put her visor on his head. He was getting a blood transfusion today as his red blood cells dropped so hopefully this will perk him up a bit and maybe get him to eat. He has not gotten a new roomie yet, but it will be Dina's problem as she is spending the night tonight.

Sunday, July 09, 2006

Sunday Night Chemo

He has been getting two drugs a day until this point and today and Monday it will be just one drug. He has not bee eating or drinking but all the drugs seem to have kept the vomiting in check for the most part.

I will talk to the doctors tonight to see what his post hydration orders are since if he needs to get 24 hours of post hydration that would mean he could not leave before 8pm on Tuesday night. At that point, it would almost be better to just spend another night in the hospital getting iv medication for nausea as opposed to getting him home after 9pm and having to wake him in the night to take it orally which has made him vomit in the past.

I will find out tonight when I get back in the hospital. Dina and her sister Kim are there now, Jessica Cabral visited earlier today, and the nurses all set their watches upon Ed's arrival at 5:30am every morning.

Saturday, July 08, 2006

Nana Ginny's Sweet Corn


Sweet Corn
Originally uploaded by Will's_Dad.
I had meant to post this photo a while ago but I have been unable to upload pictures. I decided to set up an account on flickr so that I could post on Will's blog and be sure and access the photos on the flickr.com site.
It is 11pm on Saturday night and Will is resting comfortably as they bumped the start of his chemo to 5pm today. His roommate has been all alone for nearly 30 hours and I'm guessing he is going to go back to back nights with no one by his side. It is heartbreaking and I wish there was something I could for him as he is not feeling well on top of everything else.

Will and Wally on 7 West


Will and Wally on 7 West
Originally uploaded by Will's_Dad.
Here is a picture from yesterday.....featuring Will and Wally

Only child

Will got his chemo at nine last night and we should be able to take him home sometime during the middle of the day on Tuesday if everything goes well. He slept comfortably last night as it was quiet in his room. The poor young boy next to us had to spend the night alone and I felt so bad for him as you could tell he was scared. Most 8 year olds probably are scared to visit a hospital, nevermind having to sleep in one alone. I asked if he needed anything but I think he would prefer if I did not talk to him. I think he gets to go home today as long as someone comes to pick up him up.

I have not read, nor do I care to read, any studies on how people cope with losing a child. However, I am starting to get the impression that perhaps people with more than one child cope better, or at least that is what people in the medical field believe. It seems that everyone you encounter who works at the hospital asks this question. It seems innocent enough and you may think "of course they ask that, everyone does". However, this is where my newfound paranoia kicks in because it is not the question as much as it is the almost breathless anticipation for the answer and the partially deflated look when we say "nope, he's the only one".

I never understood what being a parent was all about until I thought about what would happen after learning that Will's treatment was not working. It was then that I realized that being a parent defines my current existence. It determines, among other things, the house you buy, the car you drive, the job you have (to some degree), the benefits you choose, the town you live in, how you budget your money, save for the future, and countless other things.

Somehow in the past 22 months Dina truly became a mother and I truly became a father. That is who we are and what we do. Truth be told we started on the path to parenthood before we were even married.
We bought a house together and picked the town based on the school system. We were a two income family but we bought a house with a budget planned for a one income family since Dina and I hoped that she could be a stay at home mom. Perhaps that is why everyone at the hospital seems to hope that we have a number of children at home so that the identity of "parent" is not taken away from us if Will ever is.

Given the highly unlikely statistics stacked against Will, I can't help but still be positive. There is so much that doctors do not know about this disease and it is unusual when compared to other cancers. Perhaps it is denial but I still feel like he is going to be ok in spite of the odds and although I am prepared mentally for either course I still have hope.

I find that I enjoy my identity, I am proud of my wife and her heroic parenting effort, and if it is ok with Will I would prefer that he stick around and live a full and happy life.

Friday, July 07, 2006

Will's current treatment

The third course of treatment will use the drugs Ifosfamide and Etoposide (VP-16). Ifosfamide will be given once a day on days 1-5 and Etoposide (VP-16) will be given IV once a day on days 1-3. Mesna will also be given to prevent bladder irritation

Etoposide (VP-16) - Commonly: nausea and vomiting, hair loss. Uncommonly: serious allergic reactions with chills, fever, low blood pressure and breathing difficulty, low blood pressure, swelling or itching of the face, hands and feet, a small risk of developing leukemia.
Ifosfamide - Commonly: hair loss, decreased resistance to infection. Uncommonly: bladder irritation, kidney damage, brain toxicity, heart and lung damage.

Will is fine

He started his chemo at 9:15 last night and has been getting medications for the chemo and for pain from surgery. He has been really sleepy from the pain meds as we try to prevent him from being too uncomfortable.

Trying to get through this...one day of chemo down, four to go. I did the night shift and managed not to kill anyone and Ed came in this AM. Dina is with her parents now and Will is doing ok.

Thursday, July 06, 2006

Need to vent

Try and remember the last time you ever shared a room with someone other than a family member? Maybe you were on a business trip and shared a hotel room with a colleague. Perhaps it was back when you were a kid and went away to camp or on some sort of church or youth group trip. For a lot of people, it may have been the first day you moved into your freshman dorm and met the person you were going to spend the rest of the year with in a jail cell sized room.

If you imagine being an 18 year old kid, moving away for the first time, and all of the anxiety and excitement that a moment like the brings you can also imagine the anxiety of what your room mate would be like. You have to live with a stranger? What if he/she is a jerk, a lunatic, snores, has pet snakes, likes to shoot up heroin, or any of the countless other things you may worry about. For the most part, you have a lot of things in common since you are both 18, the same sex, graduated high school, and have decided to pick the same school. It may not work out, but odds are that there is some common ground and you can do your best to work it out.

Before being admitted to the hospital with Will having cancer, the last time that happened to me was in June of 1992 when I went to orientation at UMass Amherst and was paired with a kid who had no miliatry affiliation but decided to wear fatigues in the middle of summer. Two of my friends were also going to UMass that fall and one of them, Mike Cosgrave, was at orientation with me. I quickly sought him out to see if we could be roommates in the fall. He agreed, although it later ended up costing him about 65 pairs of socks and I bet at times he wished he got paired with GI Joe instead of me.

Anyway, the point is that sharing a room with a stranger at 32 years of age is something I thought I was at least 14 years beyond ever doing again. And then Will was diagnosed with cancer. Imagine the horror of being in the ER and hearing that you son has a tumor that is most likely cancerous followed by testing and eventually late at night being put into a room, a small room. And upon entering you learn that on the other side of the curtain is another child, and another family, attempting to go through the same horrible ordeal that you are...all the while trying to be as quiet as possible not to disturb the tortured family five feet away.

Here we are at the hospital today and my son is having surgery and we are then being admitted for chemotherapy and the only thing that I am really anxious about is WHO we are going to be paired with in a room. The child and family you get paired with makes ALL the difference in your stay at the hospital. Our last roommate was in a ton of pain and was up all night crying, but she was a GREAT roommate because of her family. They were good loving people who were considerate of the fact that there was ANOTHER family in the room trying to cope. They did their best to be great roommates and we are still grateful.

Even if you were up all night with Will crying because your neighbor was having problems, you don't care as long as you know that the other people are aware of it and you know that the feel as bad about it as you would.

Unfortunately, you have no control over your roommate. The hospital does not even have enough beds on most days for their oncology patients so you are actually relieved that you even get a bed. Since the majority of the rooms are common rooms the private rooms are used by kids who are sick and can not share a room.

I would have assumed that pediatric oncology patients have their own room due to the risk of infection and the nature of the disease. I guess that is the case for most major pediatric centers but unfortunately it is not the case for Will.

By now I'm guessing you realize that the reason for this post is because we do not have a considerate neighbor this time in the hospital. Normally you want to have kids within a similar age group in a room to reduce problems. Our roommate is 8 and he and his family really enjoy a loud tv until 12:30 am (and I mean LOUD) as well as talking on their cell phone OVER the loud tv until 12:30. Repeated requests of "turn the tv down" have led to the volume being down for 10 seconds and the child turning it up again. That is fine, but it is at this point when the family is important and unfortunately it is not happening.

Is it too much to ask with all we are going through as a family, with the run of bad luck we have had, to at least catch a break and get a decent roommate? Between the foot + long tube sticking out of my sons belly and this hosptial disaster I'm really upset we are in the hospital until Tue/Wed.

I could not be happier with the nurses that we have at the hospital, they are truly an unbelievable group of people that are great at their jobs and understanding of our plight. I know that they wish they could change it and have each kid get a little privacy but it is up to the administrators who are running a business, not a hospital.

I am officially sick of all the dealys, problems, issues at Children's Hospital Boston. It is a business that must make money, and empty beds and OR suites do not generate revenue.

That made me feel better, too bad it is not going to make the volume on our neighbors tv any lower.

Surgery & a bed

Will had a port implanted down near the top of his diaper (below and to the right of his belly button). This is so they can take out blood, remove stem cells, and put his blood back in about two weeks time. It was a success and they also removed some of his bone marrow to make sure the disease had not spread. The port is like his old picc line in that it needs to be flushed twice a day and it hangs out of his body...this is a Y cather with the long part in his stomach and up to his heart and the Y part sticking out a good 6-9 inches with two ends. It will be an interesting month watching him try and pull this thing out.

He was then moved up to 7 West and is currently waiting on chemo as of 6:30. His diaper needs to be tested for his urine to be diluted enough via fluids for them to start chemo and it has not reached that point yet. As soon as it does they will get started. If we start chemo today we should get out of the hospital sometime on Tuesday.

Wednesday, July 05, 2006

God Bless America

(Please ignore any logic or spelling errors as I typed this in two minutes and was on my way out but wanted to post it before it was another week before I got a chance)

Hope everyone had an enjoyable holiday...Will and I went in to Boston for the reading of the declaration of independence and the mini-parade that follows the reading. Will and I sat in the median of Congress Street 25 yards from State street and got a great view of the proceedings. First the horses came by, then the sailors, colonial soldiers playing drums and flutes, people shooting of muskets, and more marching. Will loved it and we had a good time. We then moved over to go into Fanueil Hall but we became sidetracked by the Jimmy Fund cows that are all over Boston.

We found one in particular that was of great interest...it was a cow that looked like Wally the green monster! What are the odds? I feel like we are now being stalked by Wally as he comes up everywhere we go and it only fuels Will's enjoyment of Wally. There are about 25 tourists who attempted to take pictures of their kids or another loved one with Wally who will have a keepsake of Will when the get home as he would not leave the cows side. He started posing for photos after a while...it was amusing.

We went home after I spend a good hour trying to get him inside and he took a nap....when he got up we went to the Cosgraves in Milton for a cookout and called it an early night as we had to be in the Hospital early today for a few appointments. Our first appointment was with pre-op since Will is going in for day surgery tomorrow to get a second port implanted. This port is so that they can collect his stem cells and then freeze them in the event that they need to use them for 'rescue' if we decide for a certain type of treatment in the future. We may not need them, but we need to have them if we decide on some treatment options.

Basically, this port allows his blood to flow out of his body, into a machine, and his stem cells are removed before pumping the blood back into his body. They will then freeze the cells for future use. After surgery is completed he will be moved up to 7 west for recovery and depending on what time he gets up there, they will begin his chemotherapy or wait until Friday.

After much discussion and deliberation it has been decided on the advice of Will's doctors as well as our own feelings that Will should finish out the remaining three rounds of high dose chemotherapy. What this means is that after this round of chemo, which is five days, they will double up his G-CSF dose and about 10-14 days after chemo is done we will collect his stem cells. Once they determine that the collection worked to get enough cells they will pull out the new port. This new port is more like a PICC line which requires twice a day maintenance and limits his exposure to water.

We would then begin his fourth round of chemo three weeks from tomorrow which can be done outpatient at the clinic. And finally finish his fifth round of chemo (which is the same as the last one he just had) sometime around his birthday in August.

At that point they will do scans again in the hope that maybe two rounds was not enough. I want to stress that the most likely outcome will be stable disease, meaning it will be the same as it is now. After the chemo and scans are done we will meet again with the doctors to discuss what to do at that point. After hearing input from his doctors and the feedback they received from NB specialists around the country (and globe) we think this is the best course of action.

The most likely result will be no change, but there is still the very unlikely chance that his tumor changes to non-cancerous tissue. It is not much, but it is something for us to hang our hat on since he is not yet classified as untreatable.

I have been too stressed out and worried to keep everyone updated on Will's progress and the flurry of recent activity but I hope that my mind slows down enough over the next few days to allow me to keep everyone up to date.

I'll turn into a vampire for the next week while we are in the hospital but I'll do my best to post updates when I wake and prepare to head back to the hospital.

Monday, July 03, 2006

Papa Ed's Dinosaur Pool




Papa Ed picked up a giant blow up Dinosaur pool that Will had a great time in on Thursday and Friday.

Pictures...sweet corn, stawberries, and sidewalk chalk