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Thursday, May 3, 2007

Wednesday May 2nd - Evening

We’re back on the inside. It’s very strange for me this time. I recognize where I am. It doesn’t look strange and frightening any more. I know the routine. I know what to ask. I know where to find things. I’m comfortable with the minute-by-minute life of the inpatient world and the energy it takes to be both caregiver and entertainer. Liam also recognizes where he is. He’s as equally comfortable with the routine and knows what to expect. It reminds me of the Sesame Street song, “Who are the people in your neighborhood.” This is one of his neighborhoods. He knows the people who are in it, the routine, where the really neat things are like the smoke detectors, strobe lights that would indicate a fire, and water fountains. He knows who is new and who isn’t. He’s happy to see the people he knows and happily greets them with a huge smile. He notices if something has changed - the dryers in the family laundry room now have signs on the front of them and a different venting system. He knows where the playroom is and how to get there from anywhere on the floor. He knows there’s a shortcut through the Family Pantry to the playroom. And he knows we can’t go home because he has a temperature. He keeps saying with frustration in his voice, “Temperature! Go Away!” He’s not happy, but he’s not sad. He’s accepting. He was fascinated with the x-ray machine that we had to visit in the morning. He helped clean the cheese puff crumbs off his face, normally a dreaded task, in preparation for getting his picture taken (what I call x-rays). He was happy to ride around in his red wagon and he was especially happy to play with glitter “sparkles” all day. For some strange reason I can still hear the Britney Spears song that was playing as we entered the X-ray room repeating itself in my head. Now that I think about it…maybe it’s not so strange I can’t get it out of my head since the song was “I did it again.” Here I am, doing it all over again…the hospital routine…but I feel much better at it than I did the first time.

Some Thoughts to Share:
Since Liam’s diagnosis, we’ve slept together every night. He panics when I’m not near him at night. And invariably several times throughout the night when we’re sleeping in the hospital, he wakes up and in a sleep-laden voice says, “Mommy – Rub Feet.” Last night he added a new twist, “Mommy – Rub Feet and Hold Hand.” I stretched as far as I could to do as he requested. He fell asleep with me hands massaging his tiny feet. His feet still amaze me like the first day I saw them and I couldn’t think of a greater pleasure then to rub them.

Some days I wake up and forget for a few seconds that I’m living in the world of cancer. And then I remember. When I’m sleeping in the hospital, I never wake up forgetting where I am.

Crying is a universal sound, no matter where a child is from. Our roommates are a little girl who looks to be about 7 and her father. Their accents make me think they’re from Russia. I don’t recognize the brand of shoe the father is wearing which I can see under the fabric screen dividing the space in the room. They’d definitely not from here. The sounds of her cries are the same as every other child on the floor. I wonder if they’re here for 3F8 treatments which aren’t available anywhere else.

Another little boy who is not much older than Liam and also a stage IV neuroblastoma case is also inpatient. He was diagnosed a few weeks after Liam. He’s only one chemo treatment behind Liam. Mom is very pregnant – due in a few weeks. I really like her and under normal circumstances could see us being friends. It was nice to see her here and we greeted each other like old college friends, even though we barely know each other. We’re permanently bonded together and can look at each other and know how the other is doing.

Liam saw two women knitting in the family pantry. He looked at them and asked me what they were doing. I told him and then he asked them what they were making. When they held up their work, Liam looked at them and said in his sweet little voice, “Ohhh – Mommy – Look! Pretty!” The women laughed, Liam smiled, and for a moment all was well. But that’s what life is like when you have a child with cancer…picking out the good moments and savoring them.

Two patients who were here before on the floor are no longer here. They didn’t win their battles and both passed away within days of each other late last week. Their rooms were next to each other. Both of them seemed very, very sick but I never knew what kind of cancer they had, their condition and certainly never would ask. How sick someone is is irrelevant when you’re on this floor. Whenever Liam would see either of them outside their rooms, he would stop and say hi or wave from his wagon. He didn’t see their cancer….he just saw two people with smiles. He even serenaded them with “Twinkle Twinkle Little Star” one night. He told both of the boys that he loved them. One of the boys gave Liam two Pez dispensers during our initial stay. I will keep those Pez dispensers in a safe place for Liam until the day years from now when he’s old enough to want to know about all the people who helped make him well. I’ll tell him about the boys from “The Hot Spot”, the place they named the corner of the floor where their rooms were located and marked with a sign, who were his friends. The other boy would give Liam lollipops every time he saw him and Liam would eagerly look for him to be sitting outside his room in hopes of a fresh lollipop. I can’t walk by their rooms. It hurts too much to acknowledge they’re not there and if I don’t see their rooms, I can pretend they’re still here.

One thing that helped boost my spirits last weekend was coming home to a collection of cards, letters and notes from friends and strangers who have heard about our battle and decided to join the fight. I can’t tell you how much those communications mean to me…every card feels like a hug and I read and reread each card over and over again. All weekend when I was feeling like a hollow shell with not much left, I’d go to the place the cards were carefully arranged and read them all again. I can’t believe we’re still receiving cards. I truly thought that people would forget about our battle by now and have grown weary of sending cards to us. Now that I know how helpful it is to have a constant stream of communication from the outside world when you’re in the midst of fighting a war, I wish I knew a soldier in Iraq I could send cards to. What occurs to me is that by receiving so much goodness from others, I’m learning how to be a better person myself.

Liam’s birthday is coming up. He’ll be three on May 13th. Every year on his birthday I’m going to show him all the cards, letters, e-mails, t-shirts, special packages, mementos, blood counts, test results, pictures…etc to try to impress upon him the power of good and the huge support network of people who surrounded him to make him well. He needs to know that it took a huge city of people to make him well. He needs to carry that spirit with him throughout his life. I feel like I know my son so well and yet he isn’t even three. Liam keeps asking where his birthday is and to bring it to him. I wonder where we’ll be this May 13th. I wonder what will be happening in our lives that day.

He and Lee share the same birthday, something that doesn’t surprise me knowing how many other ways my life and Lee’s intertwine. Being able to ask her if she had the same feelings about certain events, scary thoughts, scary odds, etc while caring for Bob is so comforting. Lee and I have a permanent bond that is unbreakable – we both know what it’s like to have your life changed in an instant and be in a free-fall state while still needing to keep it together for your children. Lee always knows exactly what to say, what not to say, when to say something, and when not to.

Gabriel wasn’t here today which greatly disappointed Liam. He spent the day looking for him and the floor polisher. When Liam and I were in the Urgent Care Center last week, we ran into Gabriel. We hadn’t seen him in quite a while, at least five weeks, but Liam knew exactly who he was and happily called his name when he saw him. After a visit which included Liam asking him where the floor polisher was, Gabriel showed me something he has been keeping in his wallet since Liam’s initial visit….several lockets of Liam’s hair. Liam gave Gabriel some of his “magic hair” when he hair was falling out post chemo round 1. As he carefully took the locks of Liam’s blond hair out of his wallet that were carefully wrapped in a piece of paper, I smiled in amazement that my son who isn’t even three could make such an impact on someone.

Jessie and her parents came to see us today. Liam was the first one to see Jessie’s Dad and immediately yelled, “Jessie’s Daddy!” when he saw him. He was so happy to see the three of them. They were light rays of sunshine on what was a troubling day with the surgery postponed. Seeing them is like seeing family and Jessie and her family will always be a part of our family from now on. One thing that continues to amaze me about Liam is his memory. He hasn’t seen Jessie’s brother since early March but today he asked where Robert is. They came bearing gifts for Liam…early birthday presents. After they left, Liam opened the present. He stood over the gift bag, leaned over and pulled out a gift. “OH WOW! A raincoat! With Frogs!” The irony is the one thing I need for Liam is a raincoat. Several days we’ve been caught in the rain without a raincoat on the way to or from the hospital. How did they know he needed one? I couldn’t tell who was more excited – me or Liam. And then he pulled out a hangar with a frog on it and said, “Mommy – A Hangar! Look! A Hangar!” He was pretty darn impressed with the hangar….and insisted I hang up the raincoat on a cabinet door handle next to his bed so it could be an arm’s reach away. Again, I find myself so humbled by the outpouring of love and support for our little fighter.

It was 5 p.m. before I realized I hadn’t eaten today. Time means nothing when we’re inpatient and food, as Lee said, is just fuel. I’m fortunate that the past three weeks there has been a lot of delicious high-test fuel brought to us. I feel like I’m all tanked up and ready for a long hospital stay associated with Liam’s surgery.

Gretchen