Friday, September 29, 2006
Thursday, September 28, 2006
Like my vest?
Home
Dina took him to music class this morning; I am curious to see how that went since I can't imagine he sat still for one moment.
I just spoke with Sloan in New York and I am going to go down next Thursday and meet with the oncologist there to discuss Will. I have not yet heard back from CHOP so I will follow up with them tomorrow.
Tuesday, September 26, 2006
Peaks and Valleys
On Monday Will is going to get a hearing test first thing in the morning and then it's off the clinic to start chemo again. This time we are going back to the intermediate dose outpatient regimen that is five days of chemo every 21 days. Day 1 is done in clinic and the remaining days are administered at home by VNA. I always feared that we would have to use the infusion pump/IV pole again that has been sitting in the corner of our spare bedroom all summer. I knew that if we ever used it again it would mean that the high dose chemo didn’t work and that would be bad news for everyone.
Although Will is going to once again become "chemo boy" he will at least avoid the debilitating side effects from the high dose chemo that have been tough to deal with. He is just so full of life right now you hate to start chemo again or even believe the doctors could possibly know what they are talking about.
Will and Dina will be coming home from Rhode Island tomorrow so I am really looking forward to seeing them both. It has been a long couple of days as I've been waiting for the return. I know that Dina and Will needed an extended stay with her family since they are so few and far between due to chemo, and I am so happy he is having a ton of fun with everybody but I am very excited to give him a hug.
I was looking at some old pictures today and came across this one, this was after we thought he was cured and shortly before we found out he was not. He has hair and eyebrows in this picture and it is hard to remember what hair was like on our son.
It is also difficult in that right now is most likely the last time our son will EVER be 'off-treatment' for the rest of his life. This is a hard reality to deal with but it makes these next few days seem so important where you can just let him be himself, do what he wants, play with whomever, touch anything without cringing, and not feeling compelled to give him a Purell bath every three seconds he is outside the home. I've found my post diagnosis ‘germaphobic’ tendencies have actually dissipated and I feel an odd sense of normalcy in spite of what's next.
I found the house to be extraordinarily quiet and empty last night. There were no toys strewn about the house, not pajamas to put on, no books to read, songs to sing, and no worry about waking a sleeping child. It was an uncomfortable silence and forced me out of the house to get a bite to eat even though I was not hungry. I got in the car and headed over the bridge considering what life may be like in the near future. The house may be much like it was tonight but with added benefit of constant grief and heartache.
It was at this time that I noticed the moon in the sky.
For what seems like forever I haven't seen the moon since Will and I look for it nightly and was oddly excited to see it. There it was, just a tiny crescent moon and low on the horizon so we wouldn't have seen it had I been on the front porch with Will, but it helped me shake off the sadness that was attempting to wrap itself around me. By the time I sat down to eat I was wondering what I was doing there at all and quickly headed back home. Our life for the past 18 months has been a constant roller coaster ride and you get used to, or at least expect, the ups and downs but lately the peaks are higher and valleys lower so it is going to take some time to get acclimated to the new ride.
Monday, September 25, 2006
Three days in Rhody
I am now able to start this week as strong as I need to be for my wife and son after having a weekend alone to acquaint myself with our new reality.
This picture was taken of Will at my in-laws after he ran himself ragged. He fell asleep at 6:30 on an ottoman and didn't wake up after getting changed and put into his crib until 7 the next day. It has been an incredible time for Will and Dina tells me that he had more fun yesterday than he has probably ever had in his life as his cousins Emily, Michael, Frankie, and Alex all were down there playing. He has had a lot of visitors from Dina's relatives which is really great since we, at times, feel trapped in Boston/Braintree. Between all the visiting nurse visits, hospital visits, and shots, it seems like we can never get away for an extended period of time
This has been great for Will.
Friday, September 22, 2006
Life under the umbrella
As I had mentioned previously, having a child with cancer can cause you to view all things in life differently, as if everything is somehow stacked against you. Any time something goes wrong, a dead light bulb, a long wait for an appointment, a bad back, or any other everyday misfortune that occurs is somehow magnified under the umbrella of cancer. Anything that falls within the shadow of that umbrella is tainted and turned into something malignant simply by association. I try desperately not to think this way but it is difficult at times when you keep saying 'we never catch a break'.
The reality of the situation is that by definition in order to have a child get cancer and eventually die it would be impossible for you to have ever caught a break. If you did, you wouldn't be in this spot. Even knowing this reality still does not change your attitude or outlook at times because it is simply SO stifling.
Todays installment of life under the umbrella stars the family dog Molly. Molly was walking with 6 of her friends today along with their walker/friend Denise when Molly, being the modest dog that she is, walked off the path and into the woods to take care of business in private. When she emerged, she had apparently upset a bee hive and soon her and her 6 friends were swarmed with bees as poor Denise did her best to protect them all from harm.
I gave Molly some of Will's benadryl (on vet orders) and proceeded to watch her to make sure she was ok. She, of course, is fine (dogs are a lot tougher than people) and none the worse for wear. But when Denise told me, the first thing I thought to myself was, even our poor bastard of a dog can't escape this funk we are in.
This is patently absurd, however, I have to make an effort to remind myself this because that is how you can feel. It is like our family has been attached to an anchor that was then tossed into a bottomless abyss and, try as we might, we are powerless to stop its descent. Pretty cheery stuff for a Friday afternoon.
Will is with his cousins again today and Will is going to get a chance to spend some time with his relatives in RI at my in-laws. As for me, I'm going to lie on the floor and stare at the ceiling all weekend in an attempt to get my mind right.
Thank you to everyone who has take the time to email us with your thoughts and prayers it is a great help emotionally.
Why more chemo?
Someone had asked me if chemo wasn't working why was he going back on it. Therefore, I just wanted to clarify why he is going back on chemo since I didn't make myself clear. Even though the chemo did not cure him of his disease, these particular drugs did manage to keep his tumor stable with the added bonus of being given at home and without a lot difficult side effects found with the other regimens. Since the goal a this point is to keep Will around for as long as possible while still having a high quality of life, this drug combination seems the best bet.
For the sake of clarity, the way that this disease is mostly likely going to kill Will is by the tumor growing and crushing his airway. The longer we prevent the kind of exponential growth that will do that, the longer he will be here with us. And by 'with us' I don't mean in the hospital for five days every three weeks, then getting sick, having mouth sores and terribly low blood counts. I mean living as normal a life as possible, playing with other kids, going to the park, and being himelf, not the shell of a person that he would be for a week or longer after getting a regimen of inpatient high dose chemo.
Our goal at this point is to create the longest amount of time, with the highest quality of life, so we can enjoy our son. Obviously if we are told something different from another hospital then that plan may change but at this point in time, this seems the most likely path.
Thursday, September 21, 2006
Isn't irony ironic?
Does that qualify as funny, ironic, or both? I’m thinking it’s ironic. I've already started mentally and verbally referring to the room as 'part of the kitchen' as opposed to the play room for obvious reasons.
Regardless, Will could not be happier at this development. Not at the concept of a playroom, which he would not grasp, but the fact that he has a front row seat (as pictured here) to some good old fashioned construction. The window he is seated in front of is in our back hall and looks directly onto the screen porch...you can see some of the extension cords out the window. He has a bag of popcorn, his frog chair, and the best seat in the house. The only thing that could be better is if the Wiggles performed an impromptu concert out there.
I think I'll end up going bankrupt in an effort to keep him entertained by construction...perhaps I'll hire an excavator to repeatedly dig, and then fill in, a giant hole in my back yard.
We are going to go to the Memorial Sloan-Kettering Cancer Center to meet with Dr. Kushner after he gets a chance to review the file he is being sent on Will. We are also going to Children's in Philly (CHOP) to meet with Dr. Maris after he reviews Will's file in order to discuss MIBG radiation therapy. If Will does get this therapy it will not be for 2 or 3 months as there is apparently a supply shortage of MIBG that would cause the delay (why am I not surprised by this news?). In the meantime, we'll most likely revert back to the TOPO-CYCLO regime Will was on when his disease first came back that consists of Five days of chemo every 21 days. The first day is done in the clinic and the next 4 are done at home. Will tolerated this treatment well, and barring some unexpected news from NYC or Philly, he will begin this treatment in a week or two.
I’m not sure what you are supposed to do when you are told, in no uncertain terms, that there is no cure for your child and that he is going to die. I’ll get the other opinions and see what they have to say, but at this point you don’t really have a choice. You can’t quit so you just have to suck it up. If you asked me before I had a child I would have guessed that eventually you have to run out of resolve or energy, or both. But apparently, love for you children can make you inexhaustible (although reliant on ibuprofen, coffee, and antacids).
Wednesday, September 20, 2006
The meeting you never want to have
Not the best meeting I have ever been involved with, certainly the most surreal, and without a doubt one I'll never forget. I happen to believe the person stating this was wrong, but what else am I supposed to believe as the parent of a seemingly perfect (although bald) 2 year old work of art? I thought I would be ready to give up hope but with roughly 28 hours under my belt I actually feel more resolve to help Will beat this than I did BEFORE that meeting. I am completely irrational at this point so I'll refrain from making any definitive statement at this point other than to say I love my son, he is perfect, and whatever shall pass I resolve to do what is necessary to make the best of whatever is to take place.
We are going to get second opinions from Sloan in NYC and Children's in Philadelphia. For now I need to figure out how to deal with the aftershock of yesterday's unexpectedly blunt meeting.
Monday, September 18, 2006
Will Lacey, his heroes, and your help
They both walked the ENTIRE 26.2 mile route yesterday in honor of Will. Making the decision to raise funds is a generous, choosing to do it in support of a 2 year old boy and the disease he is fighting is selfless, and walking the full 26.2 miles vs. the half marathon is heroic (or insane). Tara and Caitlin took a Sunday out of their lives and walked from 7am until 4pm from Hopkinton to Boston; words can not describe the gratitude we feel.
It has always been very difficult, if not impossible, for me to accept help or even acts of kindness from people as I spend too much of my life worrying about 'inconveniencing' others and Dina is the same way. For the past 18 months it has been a constant way of life and I still have a hard time with it. For someone to give up their time, energy, and to expend so much effort is beyond my ability to handle. I'm not accustomed to allowing people to help so I feel so incapable of expressing my thanks.
Since I do not know how it would even be possible to thank such a kind gesture, the best I can manage is to simply say Thank You from our family for your selfless act and for raising money to help Will and kids like him.
This picture was taken on Rt 16 in Wellesley just past the 14 mile mark. Dina, Will, and I were sitting right on the walk route at a park bench and Will was applauding as people walked by. He had a wonderful surprise as we were waiting for Tara and Caitlin as his favorite person who works at the Jimmy Fund clinic walked by. Her name is Jackie and she was also walking the 26 mile course and Will was very happy to see her.
As we sat there cheering for people going by a lot of the people noticed Will's bald head when he took his hat off and some began clapping for him while others starting receiving high fives from Will. For a good half hour he gave nearly everyone who walked by a high five, and once a group passed he would squeal "MORE!" while excitedly pointing at his hand. I truly think we could have sat there all day and he would have enjoyed the 7,000th high five as much as the first.
Hopefully Tara and Caitlin are doing well today as they both seemed in great shape when we saw them after 14 miles. Tara has asked me to pass along a note of thanks to each and every one of you who was kind enough to support her with her fundraising efforts and to also thank those of you that sent along notes of encouragement, thanks, and well wishes along with your checks to her home address. With the checks she has mailed in that are yet to be posted it looks like Tara is going to end up having raised over $14,000 for the Friends for Life team!
Dina and I would also like to thank you on behalf of Will, every other child with Neuroblastoma being treated at the Jimmy Fund, and for every unfortunate child yet to be diagnosed. Unfortunately, 100% survival rates are not going to be possible in our lifetimes with government funding alone so it comes down to people like you, events like this, and volunteers like Tara and Caitlin to raise the needed funds to get to that goal. Thanks again.
Cousins in Cranston
Friday, September 15, 2006
Sounds like Radiation
Neuroblastoma is a tumor that does show response to radiation and since his tumor no longer shows any response to chemotherapy it looks like this is the next item on the checklist of "Things to do". I'm not against radiation if it will cure Will, but I'm not sure I agree with the logic behind the assumptions of using external beam radiation vs. MIBG therapy.
When I asked why I could not have the remaining tumor simply removed I was told it would damage the brachial plexus and Will would lose the use of his left arm. I said I did not really care since I'd rather have a living son with one good arm than a dead son with an intact brachial plexus. I was then told that the reasoning behind this was that just because the primary tumor was removed did not mean he was cured. Since he did not respond to chemo, any other unseen areas of cancer would grow back and there would be no way to remove it all.
I thought ‘fair enough’...since it seems to make sense.
Now it appears I am being told that they will shoot radiation at the tumor site in the hope that radiation will kill the tumor and he can survive. That sounds great but what about the aforementioned areas that we 'can't see'. Since we can not fire radiation at those unknown areas, won't they grow back as you had mentioned when you ruled out a total resection as an option? What is the difference?
I'm guessing they are hoping that radiation will kill the tumor, and any area on the periphery of the tumor that is unseen on can't be removed by surgery. We have not really discussed radiation in any real detail other than having it mentioned as a potential future option so I'll have to educate myself this weekend in advance of our meeting.
I have asked the doctors to prepare Will's charts in order to send them to another hospital to get a second opinion at this time. I'm not sure what to do at this point and I think I'd like to hear another voice to help us in the decision making process.
In the meantime Will is on about day 13 of his runny nose, but other than that, his counts are such that he can do anything we'd like. He is hanging out with his cousins today and we are going to try and cross a bunch of things of the "You can only do this when you counts are high" list while we can. He is fantastic.
He was up until 11 last night and up at 6:45 this morning as a result of his sedation/late nap yesterday. So Dina got him dressed while I showered and then I took him to get Waffles again. We sat down and I ordered them only to hear that they only make them on weekends!!! Uh-oh...Will had been saying "waff" for about 30 minutes at this point and was very excited so I knew I was in BIG trouble. I had to order French toast and told the waitress to make it to go, so he just had some Milk and I had some coffee while we waited. He saw me make my coffee with sugar and proceeded to pull his straw out of the milk cup, pick up the sugar, and try to pour some into his milk cup...it was hysterical. We left with our food (he still thought it was waffles), went to D&D, grabbed coffee, milk, and 4 munchkins and made it home while avoiding a potential "no waff" meltdown. Once we were home he was happy with milk, munchkins and French toast.
Thursday, September 14, 2006
CT scan is done
We are scheduled to meet with the Doctors next Tuesday afternoon to get their suggestions.
Wednesday, September 13, 2006
MIBG results...no change
I spoke with Will's oncologist and was not the least bit surprised to hear that the tumor appears unchanged. As I mentioned, you do not have fine detail in order to measure on an MIBG but any drastic increase, or decrease, in tumor size would be apparent along with any new lesions.
The "good news" is that nothing new appeared. The bad news is that after 15 rounds of chemo, two partial resections, and countless months of worry and heartache we still have a golf ball sized tumor in my son's chest.
We go in tomorrow for the obligatory CT scan, but I could have already given you the results of this scan back in June. No change. Stable disease. I knew the last three rounds of high dose chemo were going to be a waste of time but I could not have lived with the guilt of not trying so it had to be done.
What's next?
They will do the CT scan and then meet with Will's surgeon next Tuesday morning to see if a biopsy is an option. We will then meet with Will's doctors Tuesday afternoon after they come up with some options for us to consider. As of today, they are holding a operating spot open with his surgeon for next Thursday to perform the biopsy but I'm not sure if that is needed, or even possible.
Best case scenario had us getting a call today saying "the tumor is smaller on the MIBG scan". Worst case would be it got larger on chemo. We, ONCE AGAIN, end up in the gray area that causes confusion, head scratching, and no clear answer from anyone on what the best thing to do really is.
MIBG Scan today
The MIBG scan shows any areas of Neuroblastoma in Will's entire body so today would indicate if there were any new areas along with showing the existing tumor. However, the scans do not allow you to do the proper measurement of the tumor itself (that is what the CT scan is for) so assuming there are no new areas we are still kind of in the dark about any changes until the CT scan on Thursday. I'm anxiously waiting to hear from Dina as she should be getting out of there soon.
I checked Tara's fundraising website and she has exceeded twelve thousand dollars! Congratulations Tara! Now the fun part begins on Sunday as Tara has 26.2 miles ahead of her to walk. Thanks again to Tara for walking in honor of Will and thanks to everyone who supported her in raising money for Neuroblastoma at Dana Farber!
Tuesday, September 12, 2006
The radiology department has dropped the ball AGAIN
Will’s oncologist understands what we go through so 6 weeks ago he scheduled all of Will's appointments for this week. They scheduled a 10 am CT scan, followed by and echocardiogram, followed by his MIBG injection for today. Then tomorrow he would go back in for his MIBG scan. The MIBG is delivered from an offsite location and does not get in the office until 3pm so that is why the echo was tossed in between the two appointments.
Since we have had so many issues in the past I called yesterday on my way home to confirm the arrival time for his CT scan and the person on the phone said "you don't have an appointment tomorrow". He said “I see that you have an echo, and then an appointment with Nuclear Medicine tomorrow and Wednesday but you do not have a CT scan scheduled.”
Once again, the radiology department at Children's has completely let us down. It has reached the point where I think we are going to have to go to another hospital (Mass General?) to get Will's scans done. They have rescheduled his CT scan for Thursday.
I wish I could find who was once again responsible for this mistake and have them come into the MIBG injection room and help hold down my son as he screams and cries in pain from being stuck repeatedly in an attempt to inject him. Perhaps this would help the radiology department to focus on their responsibilities and avoid yet another mistake with Will.
I will have to contact Mass General and the floating hospital today to see if they can handle Will’s scans and then send the CD with the results to Dana Farber.
Will is getting his echo at 1pm and then I am leaving work to meet Dina at 3pm since she will need my help to restrain my son while they stick him with a completely unnecessary needle thanks to the incompetence displayed, yet again, by the radiology department.
Monday, September 11, 2006
What you can learn from a bird
Dina and I packed up our car, said our goodbyes to Will, and went to the cape for the weekend on Friday night. My parents watched Will all weekend and he did all sorts of exciting things: he went to the beach, he rode on a carousel, and he had a ton of fun with Nana Daryl and Papa Ed.
Dina and I stayed at Carl & Bridget's cape house and did our best to do absolutely nothing. I bought coffee and two newspapers each morning, Dina poured through a book and started a second, we went out for casual meals and simply tried to do as little as possible. It was sorely needed and helped to take a little of the anxiety/exhaustion/stress off of us in anticipation of what will be next for Will.
On Saturday morning after breakfast Dina ran over to the Mashpee Commons to look around at some of the shops and I was blissfully relieved of accompanying her on this shopping excursion. I grabbed one of my newspapers, headed out to the deck with a coffee, and basked in the unadulterated joy of the moment. It was a beautiful day, the kind of day when Mother Nature is confused if she wants it to still be summer, of if fall is finally arriving. This is the time of year that I live for, those few precious short weeks where the heat and humidity of summer are saying goodbye, the snow and cold are yet to come and you have to think about where you favorite sweatshirt has been stored for the past six months.
I was so content and relaxed that what happened next startled me more than it probably should have. I heard a very loud "thud" followed by a 'plop' about three feet away from where I was sitting. A bird had flown full speed into the massive windows on the side of the house that are located above the slider, the impact obviously killing the small bird. I looked down and as the rudimentary brain sent out its last signals to 'fly' the poor thing only managed to twitch a few times before ending its movement.
I sat there with this bird between myself and the only entrance back into the house and said to myself "I really didn't need this". The tranquility and peacefulness I was feeling, the feeling that I was floating down a calm river, leaving my problems and stresses behind was suddenly ruined by this dead bird at my feet. I selfishly felt 'cheated' again as if that same malevolent force that has spent the past few years ambushing us at every turn decided to make it's presence know by dropping this at my feet as if to say "did you really think sitting here was going to solve your problems". I'm obviously over dramatizing the situation but it seemed in lock step with everything else in our lives as of late.
So I made my way inside, passing on a few words to the bird as I passed along the lines of 'sorry your flight path intersected with the dark cloud floating over my head' as I made me way to the garage for a shovel. I made me way back through the house from the attached garage with all intentions of scooping up the bird and launching him back into the woods he came from. As I entered the living room and looked out onto the porch to size up the best angle of approach I was stunned to see that the bird was sitting up.
He was stunned, breathing heavy, and barely moving, but he was up in a sitting position and I could not believe it. As I stood there with my mouth slightly ajar, a foolish sense of guilt crept upon me since the bird was eyeing me as if to say "What is it you plan on doing with that shovel?" I quickly put it aside and sprang into action. I went and grabbed a bottle of water and made my way back onto the porch, this time on a rescue mission. I put the cap next to the bird and filled it with water for him to drink and then went back into the house to look for something to eat. The only thing I could come up with was a bag of popcorn that was oddly enought named "Pirates Booty". I thought, what bird doesn't love popcorn, grabbed a few pieces, and headed back to the birds 'bedside'.
If someone took a picture it would have been pretty pathetic, a giant lumbering man placing popcorn next to a bird no bigger than my fist, right next to his own little trough of water. After keeping my eye on him for a while as I finished the paper I wished him luck and headed back inside to take a shower. It occurred to me that when we pulled up on Friday that a fox was in the front yard but I thought it would be okay to leave him alone. After getting dressed I walked back outside and he was gone! My first thought was that a fox or a hawk had scooped him and his popcorn up but then I looked and the little guy had managed to somehow make it about six feet over to the deck railing where he was perched. Progress!
I continued to watch him throughout the day until he was gone. I went to the edge of the railing to make sure he had not fallen and was glad to learn that he had finally regained his senses, got his bearings, and made it back into the air and hopefully back to his friends.
I found myself strangely captivated by the whole experience and really rooting for this bird to make it. Partly because I wasn't too thrilled with scooping up his corpse and firing it out into the woods, but the real reason was because I felt a kinship with his experience as a result of our own current situation. I was saying that if this tough little bird can make it, there is no reason not to have any hope for our own seemingly 'hopeless' situation.
I know it seems incredibly corny, extremely far fetched, and wholly unimaginable, but given the fact that this entire episode took place where it did, when it did, when no one else was there to see it or share the experience with me, it allowed me to make it into something it was not. The rooting I did for this bird was, I think, more tied to a way to re-energize my own hope and optimism and it worked. More than any other reason, I'm glad that we went down there for the weekend so that I could reaffirm my own gut feelings that things will be ok.
A bird taught me that is still ok to have hope.
Friday, September 08, 2006
Castle Island
Will had a great time with Mom last night as I did not get home until he was already in bed. There was a bright full moon and Will loves playing with a mini-pumpkin that my Aunt Ann and cousin Julie dropped off. His counts were reconfirmed so even though his nose is running like a faucet we do not need to be concerned unless he gets a fever.
Thursday, September 07, 2006
Counting dinosaurs
Although we are not going to be able to make it to the Vineyard this weekend we are going to attempt to go away for a night or maybe even two as my parents are going to watch Will this weekend. There is so much uncertainty right now about what next weeks scans will show and what the next course of action is going to be. We desperately need to get some rest and hopefully we will be able to do so this weekend. One of the hardest parts of this process is taking the time, energy, and simply making the effort to take care of your own needs. It just does not happen. This is a physically, emotionally, and spiritually draining battle and it is difficult at times to do what is necessary to keep going. I was on empty about 12 months ago; but each day when you get up what choice do you have? You aren’t going to give up so you just do what needs to be done and hope to make it through the day, ignoring things that need your attention that aren't related to Will for another day.
The best way I can think of describing our reality would be to imagine you are walking to an important destination that is a great distance away and that you simply have to get there. It is snowing, there are blizzard conditions, the wind is blowing right in your face, and you are trudging through two feet of snow. Anyone who lives in the northeast can think of at least one time where they found themselves trudging through a snowstorm such as this. You are freezing cold, your legs are exhausted from the deep snow, the snow stings your face, the wind deafens you, the whiteout conditions create zero visibility, turning your head or walking backward simply are not options, you are too far to turn back, and still too far from where you need to be. Your peripheral vision is gone, your focus is narrowed, and your whole body and mind are simply focused on taking that next step. As the wind tears at you, the cold seeps into your bones, your toes and fingers are nearly frozen, you wonder how you are going to make it. You have no choice but to dig a little deeper and continue onward. That sense of exhaustion, desperation, and focus on only the task at hand has been our all consuming reality during this fight and does not leave time for much else.
Getting through each day can be a struggle where things like paying the bills, doing laundry, going to work, and getting dressed are the most you can accomplish on a day to day basis. Things like exercise, rest, and joy are luxuries that we have neither the time nor energy to take part in and why each Wednesday night when we know we can go out for 2 hours is so important. It is like a brief respite from the storm, allowing just enough of a breather to continue on your journey. Sometimes Wednesday nights feel like you have finally reached the top of a giant hill, which is great, but some Thursday mornings feel like the next hill is longer and higher than the last.
When I discuss the uncertainty of our life I am talking specifically about the results of next weeks scans where the tumor will either be bigger, smaller, or the same size. We are going to have a meeting a week from today with two doctors who will have reviewed Will's scans. And then they will make a recommendation, so 11 days from now we will either be:
-Making preparations to go to Philadelphia for a week to live in a lead lined room where everything that enters the room, never leaves the room (clothes, toys, food, everything).
-Moving onto the 6th floor of Children's for the next month or so while Will recovers from a lethal dose of chemo with the help of some of his own stem cells that were harvested
-Going in for yet another thoracotomy with the hope that a large enough piece of tissue can be moved without damaging the brachial plexus and determining what the makeup is of Will's tumor to determine the next treatment option
-God knows what other options
We are anxious about the scans, about the results, and about what treatment options or decisions will be made concerning those results. Our lives are completely on hold until we find out what the next few months will bring sometime next week, it is tough to sleep with all these thoughts and the pressure to make sure we make the right decision weighing heavily on our minds.
The moon sleeps during the day
This was one of the few time since he was a newborn that he actually sat in my lap as I sang him a song about the moon until eventually I had to bring him in the house. He was very excited the next morning to see it again but we had to explain how the moon sleeps during the day and only comes out at night when it is dark.
This seemed to appease him.
About 10 hours later, as it was getting dark, Will began saying 'moon, moon' and then tilting his head and putting his hands folded under his head to signify that it was sleeping. I said that I would go look and see if it had awoken, but due to the clouds he was out of luck Tuesday night so I said he must have been really tired….
Tara came to watch Will at around 6:30 last night and we told him that she would show him the moon while Momma and Dada went out to dinner. We met Mark & Kim Taylor as we usually try to do on Wednesdays and when we were in the parking lot on our way home Dina spotted the full moon and we laughed to ourselves wondering if Will got a chance to see it.
Tara took the photo that you see here with here camera phone. Apparently they were outside looking at the moon, inside looking at the moon, and as pictured here, in our bedroom looking out the window (and pointing) at the moon (you can see the streetlight to the left and the moon at the top of the picture). This picture cracks me up because I can only imagine how much moon talk, moon watching, and excited noises Tara got to experience last night.
Wednesday, September 06, 2006
Runny nose
He is feeling much better as he is now sleeping more comfortably and taking naps that are more like his 'normal' schedule. I'm not sure what happened but we never heard from the VNA today so I'm guessing my CBC request did not actually get passed along.
Will picked up a runny nose this weekend (probably when I brought him to a thousand restaurants) but other than that he seems to be doing ok. Hopefully he will continue to improve and have a good week leading up to his scans next week.
Tuesday, September 05, 2006
No more shots!
Will's ANC was over 25,000 yesterday and his other counts indicate he does not need a transfusion. I am in a state of disbelief and actually asked the doctor to check his counts again tomorrow. Will looks like an over-ripe banana so I'm shocked that his platelets could be as high as they were (135). Will's fellow is out, his attending is on maternity leave, and his nurse is out today so I think the fellow I spoke to that is covering today thinks I'm insane for asking to have a cbc run again but she was nice enough to not accuse me of being drunk or crazy.
His ANC is good news so we can stop the daily shots which is always a relief. Last night Dina and I brought Will to dinner after being invited by Carl. Uncle Carl and Aunty Bridget reserved a back room at their favorite restaurant (Alba in Quincy) and we joined them there along with Nana and Papa Ed. We had a great meal, the kids could run around and play without disturbing anyone and it was nice to get out.
Monday, September 04, 2006
Dining Out
He brought his picture album with him and we ordered Waffles and Milk. He really enjoyed himself and while we were eating he was treated to a big surpise, first my Uncle Kevin and Aunt Janet came in to eat and said hello. Next, Uncle Carl and cousin Tucker ambled in a few minutes later much to our surprise and Will's delight.
He had so much fun...we don't take him to restaurants too often lately because of his low counts and his distaste for sitting still. Since he did like it we took him out to dinner last night (as pictured)...he even sat in a booster seat for the first time!
When I got up with Will this morning he immediately let me know that he thought yesterday was fun and that we should go get Waffles again, so we did.
The restaurant was empty when we got there (it was early) and he seemed baffled that family members were not coming and going as we ate. We finished up and he was asking for Tucker but I explained that he isn't always going to see someone he knows. As we were getting into the car with our requisite 4 large coffees to get through the day, Will's wish was granted....a horn beeped and one of Will's nurses from the jimmy fund clinic who lives in Braintree waved and gave Will a big hello....this simpy convinced Will that I was wrong and he was right....he gave me a look as if to say "SEE...I told you someone was coming..." it was pretty funny.
Friday, September 01, 2006
Rasin on my head
M&M Cake
Dina and my mom took Will to clinic today and he is currently getting red blood cells. His platelets are 9 so he will also be needing a platelet transfusion after the red blood cell one is completed. His ANC was not back yet but his white count was .17 so he will need to continue getting his shots through the weekend.
Will had another good night of sleep last night. I put him up to bed at around 9:30 and he slept through the night again. It appears that the mixture of Mylanta and Benadryl is the cure for what has been ailing Will. We also give him some Oxycodone but the Mylanta Benadryl mixture eases his mucositis enough that he is comfortable and can sleep. THANK GOD. We are both still dragging but at least now there is some uninterupted sleep taking place in our house. Let's hope it continues.
Happy Labor day to everyone.






















