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Thursday, April 26, 2007

Friday April 20th Update

Today is Friday, April 20th. It's the end of another week. By Friday, we are a jumble of raw news. Liam is edgy. We're edgy. We're all on sensory overload. Only Ella, our dear sweet Ella, is happy. Tonight Liam he had three meltdowns. The first one happened when Larry ate one of the cheese puffs* Liam was methodically eating. With Larry's innocent act, Liam was reduced to tears that seemed to come from deep within his soul. We felt completely helpless and nothing we said could calm him. (If hearing that our son with cancer is eating cheese puffs makes you cringe, you have to understand that Pirate Booty Organic Cheese Puffs is the o-n-l-y food we could get Liam to eat this week. The o-n-l-y food. Literally. I'm not joking. He didn't want anything for several days as he dealt with the nausea associated with the third round of chemo and avoided eating any solid foods for days. Around the middle of the week, he finally expressed an interest in eating and cheese puffs became the food he chose as the one he would eat. Can you imagine the absurdity of the conversation we have with our son trying to find something he will eat that is loaded with calories? I feel like Willy Wonka trying to entice Liam with any sweet I can think of…but everything is met with an adamant no.)

The second meltdown occurred a few minutes later when he was trying to tell us something that we just couldn't seem to understand through his pacifier. He kept saying three words over and over and over again and we desperately tired to understand him. It was like playing a game of charades with a person who speaks a different language. "Liam – Show Mommy and Daddy what you want." (Crying.) "Liam p-l-e-a-s-e show us what you want." (Sobbing.) Finally, finally we figured it out. He was saying "George the Monkey," to tell us he wanted to watch Curious George the movie. By then, it took me holding Liam in the new comfort position he has adopted since being diagnosed which basically is him in a fetal position with his belly against me, knees up, head on my shoulder and me trying to figure out how to hold him without dropping him. When he's really upset or feeling insecure…it's the only way he wants to be held. It's as if he's turning his back on the world and escaping into his protective cocoon with my arms wrapped around him.

The third meltdown took place a few minutes later when he decided, after calming down from meltdown #2 that he wanted to rest on the kitchen floor on a bean bag chair. He wanted to be able to watch Larry put together the doll house that had just arrived and watch Curious George at the same time. We have two bean bag chairs: a red one and a blue one. I brought the blue one into the kitchen. He said he wanted the green one. I carried him into the room with the bean bags…showed him the red one and asked him if that was the one he wanted. "Yes," he said. I brought the red one to the kitchen which was greeted with another meltdown with tears and plaintiff wails for the other bean bag chair. I took the red one back, returned with the blue one, asked him if that was the one he wanted, through his tears he said yes, and then proceeded to tell me how he wanted it positioned on the floor. Liam has so little control over his life right now…so little…that we forgive his rare meltdowns as his release valve. But I'd be lying if I said they weren't frustratingly painful to live through. But then as soon as the dark cloud passed over head, it left and Liam was completely fascinated watching Larry put together the doll house. Watching the two of them do something as innocent as playing with a miniature house with miniature people and putting them through the paces of everyday life (Liam thought it was hilarious to have them go potty), is nothing less than magical. It's a beautiful and difficult scene for me to watch. On the one hand I'm so happy to see how happy Liam is playing make believe. On the other hand, I fear that he won't be able to experience the same joy with his own children.

It has been difficult to this week. It was rainy and cloudy most of the week which mirrored Liam's mood. I don't do well when Liam is listless, sluggish and needy because it makes me worry that the cancer is winning. And while logically I know why he's listless, who wouldn't be after going through three rounds of high-dose chemo in seven weeks, it's still hard. Liam and I were at the hospital every day with the shortest visit being around five hours. We were on pins and needles waiting for blood counts to improve post round three of chemo as we did our neutropenic "don't anyone get near us, touch us, breath on us" dance. We were completely anticipating a hospital stay but also equally hopeful at avoiding one. On a bright note for both me and Liam, because of his nausea from the last round of chemo, we were able to get him switched from Bactrim (an antibiotic commonly used with people with compromised immune systems to stave off a certain type of pneumonia which can be particularly nasty) to "Pentamadine" which can be given to him via IV. No more forcing, cajoling, convincing, pleading, begging, bribing, or reasoning with him as we tried to get him to choke down 5.5 ml's of the "yucky" tasting medicine. Every one of the six weekly doses of Bactrim (twice/day for three days in a row) was a struggle to give him. But the pressure to get him to take it is incredibly intense because you know how important a weapon it is in the arsenal to keep some particularly nasty germs at bay. But after he threw up two of his doses and basically refused to take any more because he associated it with vomiting, I pleaded with the doctor from Rome about alternative options. The beauty is once he has his initial "loading doses," he won't need to receive it again for a few weeks. How great is that? (And oh how my life has changed to be thrilled by this kind of thing.)

One thing I've felt since Liam's diagnosis is that life feels like it's being viewed with a new set of eyes. Everything is more vibrant. Every experience - whether it's watching Liam discover the joy of something as every day as realizing there are smoke detectors in every building to becoming giddy with excitement at seeing a frog – becomes a memory that is just somehow sweeter. It feels to me that Liam has accelerated the pace of his development. He's using the hospital as a classroom to learn his letters, numbers and colors. He knows the letter B because it's the elevator bank we take to get to the Day Hospital. He recognizes the numbers nine and one because nine is the number we press every morning when we get on the elevator to go to the day hospital and one is the number we press when we're leaving. He has red and blue down pat because every day when we're at the Day Hospital he's asked if he wants blood drawn from his red tubie or blue tubie that are coming from his chest. He also is learning things about his body. He now knows that his body makes things like new skin, pee pee and, yes, #2s. He knows that all of those things are warm when they come out of your body. He laughs when he tells people that a body can make stinkies. Potty humor begins at a young age, I suppose. One of his nurses taught him about his blood being warm when it comes out of his body so now, whenever blood is drawn, he feels the test tube in his hand and comments on how warm it is. "Nice and warm." He also likes to share with others how warm it is. In my quest to keep Liam in the land of the living and not the sick, I'm constantly using every opportunity I see as one for learning in order to keep him engaged. Everything becomes a chance to learn and I hear myself doing a lot of talking and explaining to him which he soaks right up. There are times I feel like a complete idiot and I see other parents looking at me as they hear me talking about how a DVD player works or explaining what an IV pump does. It's a steady all-day babble of information that is exhausting. I'm always scanning rooms, hallways, and elevators for things to teach Liam. A week or so ago, time becomes somewhat blurred, a man came to the Day Hospital to clean the giant fish tank that is a source of peace and fascination that many kids and parents enjoy. I saw the man, took Liam over and started explaining as best as I could, everything the man was doing. For me it was one of those, "I feel a bit like an idiot to be explaining to Liam what the person in front of him is doing when the person in front of both of us can hear what I'm saying," but it didn't stop me. Eventually the man joined in and spared me from having to figure out exactly what he was doing to do a quick explanation for Liam and Liam was completely enthralled. He stood very quietly taking it all in. He even got to turn the light in the fish tank off and feed the fish which he thought was thrilling. And after the man was finished, we were off to a new activity. A week goes by and Liam doesn't mention anything about the fish tank. And then one day we arrive at the day hospital to check in and have to wait for another family to be checked in. Liam goes to the fish tank and starts reciting all the steps to cleaning the fish tank. He remembered everything. He looked at me and wanted to know if he could turn on the light. I tried to tell him that I didn't know where the light switch was, and he proceeded to show me exactly where it was…which is something hidden from view. Both Larry and I have noticed that since our sweet son was diagnosed…he has become the question man. "What's that" is his favorite question and one he asks all day. When he's visiting his beloved fire station, everything is a "what's that" from each dial, button and connection point on the fire truck to the walkie talkies. I realize the "what's that" question is a completely normal one, but it's not something he did until after his diagnosis. The funny times are when we hear him talking to himself going through the steps of something like drawing blood from his tubies. It reminds me of someone studying for a test – he goes through every step with color commentary – in his sweet sing song voice. It also is so sad to hear how much of what he's learning is focused on very serious medical themes. The question he asks me a lot is, "why is that baby crying?" (Every time Liam hears crying, he associates it with a baby.) We hear a lot of crying and screaming when we're in the bed area of the Day Hospital. A lot. It's this horrible crying and screaming of children in agonizing pain that even the strongest pain medications can't relieve. It's horrible, heart-wrenching, sobering, extremely frightening, and a sound I wish didn't have to be. It's also the sound I know I'm eventually going to hear when Liam goes through 3F8 treatments. Every time I ask quickly and quietly ask a nurse if the child I hear screaming is receiving 3F8, she nods yes. Last week was a week that was hard for me to not keep up the fa├žade of "everything is normal, everything is OK," I focus on for Liam. Every time I let the screams of a child break through, I couldn't stop the tears from flowing. I try very hard to not cry around Liam. He knows there's something wrong with his blood. He knows we're fixing it. But at his age he has no concept about the seriousness of the situation and, therefore, has no fear. He fears things about the process of getting better – like dressing changes and GCSF shots – but he doesn't know enough to be fearful of the outcome. So when Liam asks me why the baby is crying, I tell him the baby is crying because he has a stinky diaper and doesn't want to get it changed…something he can relate to.

Thursday, April 19th, was a very special day for us. It was a typical long-day-at-the-hospital day with more of the typical frustrations. I've noticed that Liam is aware of the tone of voice I'm using so if I'm anything less than my usual "mommy voice," he gets very upset. It can make it challenging to be his advocate when you can only use your "mommy" voice. When I'm getting frustrated with the usual run around at the Day Hospital of hurry up and wait; feeling like Liam has been forgotten because it has been an hour and a half since he arrived and no one has come to tell us his medication is up from pharmacy and they're ready to give it to him; the realization that his blood hasn't been drawn which only makes our wait longer because it takes time to process the blood and if we find out he needs a transfusion of blood or platelets we've tacked on another two hours to our visit; the angst of figuring out where I'm supposed to change a stinky diaper when we don't have a bed and there's no changing room…I want to pull out my "this is ridiculous" voice on behalf of Liam…but I have to very careful at how that voice sounds to him. He doesn't necessarily understand all the words, but he recognizes the feel. But a typical day of frustration ended on a high note. Marge came over to cook for us using the chicken that I fully intended to prepare but finally admitted would never happen unless someone else did. (Both Larry and I have been eating whatever is easiest to eat at 10:30 p.m., our typical dinner hour, and many times it has been potato chips, hummus dip or the ice cream Liam won't eat.) We were blessed to have Michelle drop off some meals for us that kept us from our usual fare and for which we were so appreciative, one of those random acts of kindness we didn't ask for…but just happened…and which made a huge difference for us. Speaking of food, there's a team from one magazine that has been nothing less than amazing. I don't know why they've taken us under their collective wings and made sure we have food to eat, but they have and we're grateful. We're now at the next phase of dealing with Liam's illness that comes after the initial shock of the diagnosis wears off and the reality of "this is going to be an all out battle that will be waged for a very long time" becomes clear. Marge is cooking, Ella is asleep, Liam is watching Caillou on the sofa, and I'm flitting between the room Liam is in to make sure he's OK while trying to visit with my friend. I notice that Caillou is learning his address. His house number is 17 which strikes me as a strange coincidence. The first apartment we stayed at was on the 17th floor, the current apartment is on the 17th floor, and in another Caillou episode he visits a little boy who lives in a high rise building on the 17th floor. As I'm walking to the room where Liam is resting, I notice through the front door monitor that a fire truck has pulled up in front of the building. I run to Liam to let him see the truck through the monitor's small black and white picture, he (not surprisingly) immediately wants to go downstairs to see the truck with its lights on. I, of course, oblige. (Anything to get my son out of his funk.) I'm so anxious to get to the fire truck before it goes away that I don't stop to put pants on Liam. We go out into the foyer and press the elevator button and wait. And wait. And wait. And wait. And then we hear very heavy sounding footsteps on the stairs. The door to the stairs opens. Two firemen, complete in their full gear, come through the door. I feel Liam's body tense with excitement at seeing his beloved firemen. They asked if we lived there. I said yes. They asked if they could come in our apartment to try and find the reported water leak. So in walks two firemen, Liam is completely in awe that his house is hosting firemen, to try and find the source of the water leak. They stand by the window shining flashlights. Liam stands at the windows with them to peer out with them. They see the leak – a water tower across the street is leaking. Liam sees the leak. They thank us and leave. And Liam's gray mood seemed to disappear. Marge notices the time – it's almost 10 p.m. which is when the garage closes. I decide to go to the police department to see if they'll let Marge park in one of their spaces for a bit. I walk into the police station. There are six officers around. The woman at the desk abruptly and without much kindness in her voice asks what the problem is. When someone has that tone of voice, you really don't want to explain the whole "my son has cancer" thing. It's too personal to share with someone who is being impersonal. So I take the approach of "we live next door – I've been in here with my son" in hopes that someone will recognize me as the mom whose son has cancer. Instead, an office I don't recognize comes from behind the desk to ask how he can help. I do a quick summation of his character to decide if I want to "tell" him. I cautiously go into my speech of "my son has cancer…a friend is over helping us out…could she possibly park in one of your spots for a bit?" I still find it hard to tell people that Liam has cancer. My Liam, my sweet Liam, can not have cancer. It's just not possible. The officer tells me that my friend can park in one of their spaces. No problem. And as he's walking me out, he tentatively says that his daughter was treated at Sloan. I even more tentatively ask how she's doing. He tells me she's in fourth grade and is doing great. I then ask what kind of cancer she had fully expecting him to say one of the other nine pediatric cancers that are treated at Sloan but not neuroblastoma. He tells me she had neuroblastoma. OK – this is just unbelievable. Statistically, I shouldn't randomly be meeting another neuroblastoma parent. It just doesn't happen. So then I reluctantly ask what stage she was. I'm reluctant because I want him to say stage four, but I'm sure he'll say stage one or maybe two. He says four. I felt my knees get a little unsteady. His daughter, who is now in fourth grade, is a stage four neuroblastoma survivor? The odds of me meeting Sgt. O'Grady are not ones any Las Vegas bettor would want to wage. But yet here in front of me was the father of a stage four neuroblastoma survivor. It is very comforting to me knowing Sgt. O'Grady is right there…right next to us…and that if we need him…he'll be there for us.