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Wednesday, June 6, 2007

June 4th, 2007 Weary

I recall learning somewhere along the way that a soldier’s tour of duty in Iraq used to be three months and the current lack of soldiers has required that tour to be extended to nine months. We’re now a little more than three months into our tour of duty with cancer, and having had no break since February 26th when our tour began, I can now firmly say that any soldier in Iraq or Afghanistan or wherever they might be stationed needs a break after three months. Every aspect of your body - physical to mental - is tired after three months of being on nonstop ready alert. Actually, tired is too kind of a word. Sheer exhaustion would be a better way to describe it, coupled with difficult to reconcile feelings and emotions.

We wrapped up round five of chemo late on Friday. Now we wait to see if it has any impact on his hearing. The nausea that comes with this cycle made its first appearance on Thursday evening, but only made one visit that night. (It could have been much worse – it could have begun as soon as the chemo started and been nonstop, like it was for another little friend of Liam’s who was on anti-nausea medication via his tubie 24/7 after the first night.) After an 8-hour day in the hospital on Friday, we were given the OK to go home to NJ for the weekend with fluids (meaning via IV) to avoid dehydration from nausea. In case you’re not familiar with how much fluids are needed to keep a 3-year old hydrated for a weekend, the backpack that had the bag of fluids and the pump that would deliver them felt like it weighed about 20 pounds when it was given to us on Friday. What that meant was that Liam couldn’t go anywhere without someone with him to carry his backpack of fluids. It reminds me of being in a communist country before the end of the Cold War…you always had to have a minder with you. Liam is now comfortable with the concept of being attached to something. He reminds us all the time, “Don’t forget my backpack!” He has been on fluids every night since Tuesday. On the weeknights, his fluids and pump are much lighter and he likes to pull the backpack along by one of the straps or dramatically announce his arrival by pushing the backpack ahead of him into a room. It’s amazing how quickly we’ve all adapted and become used to things we never would have thought we’d grow accustomed to. When Liam had one of his giant pees associated with being on fluids that flooded over the banks of his diaper and literally soaked my pants, how things have changed. In my old world I probably would have been upset to have pee-soaked legs. In this world, I barely noticed. Liam continues to be an inpiration. He doesn’t seem the least bit bothered by the fact that he’s connected to a tube and a pump and can’t go anywhere without them. He just takes it all in stride. He doesn’t ask the question of why he has to have them, but does ask why they pump. He’s more concerned about how they work than why they’re working for him. I dread when his mind has developed enough to ask questions why about cancer.

Liam was extremely tuckered out over the weekend. He’d have bursts of energy, but then want to take a nap. He was clearly happy to be home, but took being at home at a slow pace. After throwing up on Thursday and Friday, he was leery of food and what would happen if he ate. We managed to get him interested in some watermelon after showing him the wonders of a melon baller, but a few balls of watermelon are hardly what one would consider a nutritious meal. He has a new creative excuse to avoid food. When we would offer him something, he would look at us and say in a very pathetic sounding voice, “I’m really tired,” to avoid having to eat. After a round of nausea on Sunday, we had a conversation with him about how one of the medicines that was given to him is making his tummy upset but that it would go away soon and we didn’t want him to think that every time he ate he would get sick. He seemed liked he comprehended what we were saying. He also barely seemed to mind when he got sick on Sunday evening. He looked at Larry, told him he was going to throw up, gave Larry enough time to get something to collect the deposit, and then threw up. When he’s super tired like he has been, it adds another layer of stress on our lives. Without acknowledging it, we both worry that he’s not going to come out of the tired zone. Seeing him so lethargic and listless is really hard. Of course we know why he’s tired and logically understand, but the emotional side has a hard time seeing him not outside playing.

Liam refused to take the anti-nausea pills, even though they dissolve on contact with his tongue. We tried them and they have a pretty nasty aftertaste, so we can’t blame him. At some point Larry had a stroke of genius to hide the pill inside one of the large Disney-character straws we picked up somewhere along the way. Liam sucked on the straw without realizing he was taking the pill. It worked beautifully all weekend and every time Liam unknowingly took his pill, I would tell Larry he was a genius.

It’s amazing to me the silent communication system Larry and I have developed while keeping our voices perfectly “normal” in front of our children in order to not give ourselves away. Often we find ourselves having a conversation with our eyes about getting Liam to eat or drink more without disturbing the flow of communication we’re having with him. It’s very funny some of the ways you wind up adapting to meet the needs of a situation. Raised eyebrows, furtive glances, and quick gestures are a part of our routine.

By the end of the weekend, Liam was ready to go back to his “city home.” He kept asking to go back “right now.” We’re not sure why. I think it’s because he likes to see everything that he sees when he’s in the city. Larry thinks it’s because he likes the couch that has become his favorite resting place.

All weekend Liam kept talking about how he’s a big boy now and can do big boy things. On Sunday he decided he wanted to drink milk…plain milk…not chocolate milk…out of a cup without a top or a straw. He kept telling his daddy, “I’m a big boy now” to explain why he was drinking out of cup. We just smiled at him and agreed that he’s a big boy, a very big boy.

Monday was another all-day event at the hospital. It was supposed to be a short day: an echocardiogram at 10 followed by a CBC for blood counts and quick check up. I should have known it wasn’t going to be an easy day when I saw it was pouring outside. We had a cab driver who didn’t want to get out of his cab to help with the stroller and instead watched from the front seat as I struggled to get Liam, his backpack of fluids and pump, and his bag of puppies and pillow in the cab. Liam was crying by the time I got in the cab because he was covered in rain. He is paranoid about getting wet because he knows if the dressing covering his line gets wet he’ll need a dreaded dressing change. I calmed him down on the way to the hospital by pointing out all the colorful umbrellas we saw along the way.

I’ve been through a few echocardiograms with Liam and thought I knew what to expect. I hadn’t been through an echo at Sloan yet. I thought it would take about 10 minutes, like the ones in the past. This one took about 30 minutes and included 37 pictures of various aspects of Liam’s heart. I had to work very hard to keep the alarm out of my voice as I lied next to Liam in the bed trying to keep him calm and comforted. He just lied there with tears streaming down his face asking, “All done?” over and over. He has a new quirk – whenever he cries, he says, “My tears! My tears!” which is the que to wipe the tears away from his face. He hates the feeling of tears streaming down his face. I don’t know why, it’s just a new thing for him. So I used his puppies to wipe his tears away as he lied there watching Dora the Explorer on the TV in the room. I’ve learned to not ask a technician if there’s anything wrong. They’re not going to tell you, so why bother. I also kept trying to put my mind in the right place, “she’s taking a lot of pictures to be extra thorough…which is a good thing.” But I was having a hard time convincing myself. I wanted to grab Liam from the bed and say, “OK – We’re finished for now - thanks” and run away as fast as I could. Tests are opportunities to get news you might not want to hear so if you don’t get one, that means you can’t get bad news…right? (I never claimed to be completely rational these days.)

We finished with his echo test and then went to the IV room for his CBC test. We were directed to the bed area for the CBC – not a good thing. After an hour wait, we finally got the CBC test (this is the short one that takes three minutes), and then were directed to room five beyond the orange door to see Ursula. After the typical round of questions, we got the news he needed blood which, since it was now after noon, dashed away any hopes of a quick day at the hospital. We didn’t have a room or a bed, so we camped on one of the loveseat-size couches in the waiting area. When a little boy became upset near us, Liam whispered to me, “Mommy – does he have a stinky diaper?” I told him yes. After a long wait for blood, and then pre-meds, and then the transfusion, and then the flush, we were finally done. But not before a dreaded dressing change. I’m not quite sure why, but for the very first time, Liam barely cried during the dressing change. Maybe it was three times we did a dressing change on Chester, the life-size mannequin equipped with broviac, insuflon, and medport that is there for parents and patients to practice that made Liam more comfortable. Liam guided me through every step of the dressing change as we did it over and over again on Chester. I don’t know what it was, but it was so nice to not have Liam screaming, kicking and crying when we changed his dressing. Our short day at the hospital wound up being an eight hour day. But, at least at the end of it we weren’t coming home with fluids and were coming home.

We’re back on Wednesday for a CBC and possible blood transfusion.

Three quick sidebar stories:

Liam is so inquisitive about every thing, is fully engrossed in the word why. His passion is anything mechanical and he shows equal interest in all…from the sophisticated piece of medical equipment that evaluates his blood to the trash compactor that makes large bags very small. Gabriel continues to be an angel every time we see him and spent a considerable amount of time explaining every feature of the trash compactor during our last in patient visit. Liam hung on Gabriel’s every word and now recites all the features of the trash compactor like a dissertation, except in a sweet sing-song voice.

Last week Liam started saying to us very emphatically, “No – I’m not fine!” or, “No – I’m not OK.” when we would ask him how he was. It’s the first time he’s used those phrases.

The support we continue to receive is a huge boost to us. This is a long journey and while it’s a very personal battle for us, we’re amazed that so many others have become a part of the team and continue to be involved. We thought that by now people would have grown weary of keeping us going and that our plight would be forgotten. Every time we see a new message on Liam’s blog, receive a card or package, enjoy a meal lovingly prepared and delivered to us, we know that’s not the case. Cancer at this stage, with the risk of infections, is a very lonely time. It’s easy to feel like you’re fighting a battle by yourself. We’re so appreciative of the support we’ve had.