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Sunday, May 27, 2007

Sunday May 27th Update

As of Monday's CBC test, Liam is still neutropenic but we've so far managed to avoid a hospital stay. Rounds 1, 2 and 4 of chemo are the same chemical cocktail which results in almost a 100% admission rate during neutropenia for a fever of some sort. During Liam's check up on Friday which included a blood and platelet transfusion, both of which were direct to donor (thank you donors), the doctor looking at him said to me to be prepared to be admitted at some time over the weekend. (Once you're admitted with a fever and you're neutropenic, you don't get discharged until your ANC's - a specific type of white blood cell - is over .5.) It's difficult because the fever could be gone (the last time we were admitted during neutropenia, his fever was gone after one dose of Tylenol), but until you're in the clear and have enough white blood cells to fight off infections…you have to be carefully watched. Since Friday when his counts bottomed, we've been giving him shots of GCSF, the medicine created at Sloan-Kettering by Liam's team of doctors that stimulates white blood cell production which will, in turn, generate ANCs. We have a small box of it in our refrigerator…on the top shelf next to Ella's yogurt. The box, which is about the size of a Pop-Tart, contains 10 small vials of medicine. I've been told that each of the vials costs $1,000. Apparently some families draw more than one shot from each vial. One of our nurse practioners has said that we shouldn't which makes each shot a fairly pricey one. And there the box innocently sits next to the baby yogurt fortified with extra vitamins and minerals that Ella devours. Knowing that Liam's day will be ended with a shot that he hates weighs heavily on both me and Larry. Recently, Liam has begun recounting things that have happened to him that have made him cry. He talks about the NG tube that had to be put down his nose pre-surgery to get the bowel preparation medicine in him (it took me, two nurses, and a doctor to restrain him to get the tube down and even then it was challenging). For several days, he has told me about the experience and how he cried. He also talks about "the last time he went to the hospital" and how he cried when his dressing was changed. It's this new thing he has been doing that makes me realize how much he is taking in despite our best efforts to minimize the impact on him. So to now be someone giving him a daily dose of pain is just plain lousy. Larry and I have to psych ourselves up to do it. My mantra is "short term pain….long term gain….short term pain…long term gain." The other thing that runs through my head every time I'm giving the shot is a line from an animated movie where an animal character keeps saying, "find a happy place, find a happy place" as he's going through a difficult experience. As soon as the shot is done and Liam kicks Larry out of the room for restraining him (Larry is always the bad guy in the process even though I'm the one administering the shot), I try to sooth Liam by talking about happy things as he screams that it hurts. And yes, it does hurt. As the medicine is going in, I've been told it feels like a continual bee sting. I recently read something about memory that said the earliest children have true life-long memories is age four. I so hope that's the case…but even if he doesn't remember exactly what has been happening to him the past few months, and I'm not so sure he won't, does all of this "stuff" we're going through have a lasting impact on his character and personality? Will it make him less trusting? Will he be shy? Or will he be more inquisitive having been exposed to all kinds of things from a floor polisher to stem cell collection machine. All we can do is treat him as normally as possible and answer his questions as he has them.

So at this moment we're still in this mini drama within a drama of avoiding doing time back on the 9th floor. Every hour that goes by that he stays fever-free, we're an hour closer to him not being neutropenic. We have no idea when his counts will recover…could be tomorrow, the day after, or two weeks from now. It could be that we'll go to the hospital tomorrow and find out they've already recovered. You just never know. But the sooner we can stop the shots of "G," the better.

Eating still continues to be a daily challenge but we're keeping up our roles as the witch in Hansel and Gretel in an effort to get him to eat. One day he likes one food and eats it voraciously (10 slices of bread on Saturday….yes, 10), the next day he refuses to even look at it. It has been particularly challenging since his surgery with entire days going by without him eating more than a bite of something. Last night he was resting on the couch when Lidia Bastianich's cooking show came on. Assuming he would have no interest in wanting to watch a cooking show, I picked up the remote control to change the channel. As soon as he saw the remote in my head, he loudly proclaimed that he wanted to watch the cooking show. So, we did. Together. He asked me what Lidia was doing every step of the way. He was especially fascinated with the curly pasta going in the boiling water. I told him that mommy and daddy know Lidia. When he heard this, he wanted to know if we could go see Lidia "right now." When I told him Lidia wasn't at home, he wanted to know if he could see her tomorrow. He then said that he liked Lidia and that she looked "nice." He hung on her every word and movement. She would make a point, he would nod his head in acknowledgement. After the show ended, he wanted to know if he too could have macaroni and cheese (what he calls all pasta). I made him promise me that if I went into the kitchen to make him macaroni and cheese, he would eat it. He promised. I didn't have high hopes. We have a refrigerator that houses multiple attempts of meals that Liam requested but refused to eat. I took him to the kitchen, made some macaroni and cheese, and to my surprise he ate three platefuls…by himself…one spoonful after another. So, it wasn't quite the macaroni and cheese that Lidia would likely serve. What I made came out of a box, but it was the organic kind and at least wasn't the one with powdered cheese but the "deluxe" version with the Velveeta-like cheese. What amazes me is the power of role models. Today he wouldn't eat macaroni and cheese, but he did eat almost two entire grilled cheese sandwiches in one sitting while watching videos of him and Ella, carried around a box of graham crackers all day that he snacked on, and drank his "magic juice" (the blueberry/apple/pear/blackberry/etc juice that he drinks a ton of that is loaded with calories). If only we knew what tomorrow's food of choice will be.

A few days ago Liam started using the word, "why," for the first time. I find it hilarious as we do these rounds of questions that always wind up in the same place…"just because." Right now he's very much into the fact that he was told that the butt paste container we're currently on was personally made by Ursula, the nurse practioner he is the most familiar with and, therefore, the most comfortable with. (Today he was having an imaginary phone conversation with Ursula and telling her he would see her soon.) As the butt past is being liberally applied during each diaper change, and we're going through close to 10 a day, he asks a series of questions about why Ursula made butt paste for him. What I love is that I tell Liam that Ursula made the butt paste for him because she loves him, and he wants to know "why."

Every day we take steps forward in regaining the personality he had pre-surgery. He's still very delicate both emotionally and physically, but he's starting to joke around which is an indicator that he's feeling better. This morning he surprised me and I literally jumped. He loved it and spent the day "surprising" me. Tonight as he was resting on the couch, he was tickling Larry's head and laughing. He's coming around. We just need to be patient.