Nurse Maggie brought me this book today and said I should write in it. I don’t know what I’m supposed to write. I told her that. She said, “Just write what’s on your mind kid”. So I will. I like Nurse Maggie. I think she’s my favorite. A few weeks ago she snuck me an extra jello. I promised I wouldn’t tell nobody. Daddy came by today for a few hours. He said he misses me and that he can’t wait until I can come home for good. He told me that he keeps finding Max drinking out of the toilet. That made me laugh. Daddy looks sad whenever he comes. I wonder why.
A girl came today. She is in the room right across from me. Sometimes if both of our doors are open I can see her while I sit in my bed. She smiled and waved at me. I waved back. I like her. She’s a teenager I think. Her hair is always tied on top of her head. It looks silly like a bird made a nest on her head. Whenever she sees me look at her she smiles. But sometimes she doesn’t know I’m looking at her. She looks sad and tired at those times. I want to know why she’s here.
I woke up early this morning. My tummy felt bad. I threw up. Nurse Maggie says it’s because my medicine is higher so they can kill the sick bugs in me. I told her it’s not fun being sick. She said “I know, kiddo, I know.” I still don’t feel very good. My tummy hurts a lot. I couldn’t go to art today because I felt bad. Being sick is stupid. And it’s okay for me to write stupid because I’m not saying it out loud. The girl’s family came today. She had a older brother. I think it was her mom’s birthday because there was a cake. I wanted some cake. When they left she look really tired. I waved at her. She waved back. Then she put her headphones in and shut her eyes. I don’t think she was asleep though. Just resting. Family visits make me tired too. Nurse Maggie says I have to go to bed early tonight so bye.
I feel much better today. The nice breakfast lady brings me pancakes and they were very yummy. The girl’s door is open but it looks like her room is empty. When Nurse Maggie comes in to give me my morning meds I ask if she left. She says she’s in another part of the hospital getting tests done. I think I would have been sad if she had left and I didn’t get to say goodbye. The girl comes back after lunch. She’s talking to her computer. I think it’s a video call. She looks happy. She sees me watching her and smiles at me. She has a nice smile.
Mommy came this morning. She brought me a cool hat. She says now that I don’t got hair I need to keep my head warm. I like my hat because it makes me look cool. I want to show the girl my hat but her door was closed all day. I missed her. I hope she didn’t close her door because she didn’t like me.
In the middle of the night a boy down the hall was very sick and there were doctors running up and down the hall yelling. I was scared. This morning I asked Nurse Maggie what happened. She told me his breathing got bad while he was sleeping. I asked if he was okay. Nurse Maggie says we’ll see. I hope he is. The girl had her door open today. I put on my hat. She gave me two thumbs up. That made me happy. Sometimes I make goofy faces at her and she makes goofy faces back. We both laugh.
Christmas is coming soon! The craft lady brought paper and crayons to each room so we could make stockings. My stocking is blue and I colored black and green stars on it. I watched the girl color hers. When she looked up at me I held up my stocking she gave me two thumbs up and showed me hers. It’s red with green stripes. I like it a lot and give her two thumbs up also. Later the craft lady comes back to get our stockings and she hangs them up in the hall. I’m excited for Christmas. The girl has her headphones in for most of the afternoon. I wonder what she listens to.
Today was bad. Nurse Maggie woke me up early in the morning because I had to go to get tests done. They want to know if my sick bugs are dead yet. They took some of my blood and it hurt a lot. Then when I got back to the kid hall after lunch the girl was gone. I thought maybe she was getting tests like me. But I asked Nurse Maggie and she said that as far as she knew the girl’s parents had checked her out. I didn’t get to say goodbye. I’m very sad.
Today is Christmas Eve. I asked Nurse Maggie why it’s called Christmas Eve. She didn’t know! I thought old people knew everything. After lunch some of the boys and girls gathered in the tv room and we watched The Polar Express. I liked the movie a lot. I think the girl would have liked it. I miss her. It’s very lonely in my room by myself with no one in the room across the hallway.
Today is Christmas! Mommy and Daddy were there when I woke up. After I ate breakfast Nurse Maggie brought my stocking in from the hall and guess what?! Santa came during the night and put a candy bar in it! I didn’t even know Santa came to hospitals! Mommy and Daddy got me Legos and a few books. I’m very excited to play with the Legos. It has been a very good Christmas. I wonder if the girl’s green and red striped stocking is still hanging in the hallway. It makes me sad to think of it all by itself.
I feel yuck today. Nurse Maggie says I’m probably tired from all the fun yesterday. She also said I might also be feeling sick because of my medicine. I really don’t like being sick. I wish I was at home feeling good and playing with me friends. It’s not fair if you ask me.
I laid in bed most of today. Nurse Maggie tried to make me eat. I said I’m not hungry. I’m sad. I don’t like being alone. And I’m scared. I don’t want to die by myself. I don’t want to tell Nurse Maggie this though. I don’t even want to write anything more. Nurse Maggie said I have to turn the tv off until I write something. She says my brain will rot if all I do is watch tv. I don’t care.
Nurse Maggie says the doctor said I can start going on walks up and down the hallway. I’m very excited. He said there has to be someone with me when I do though. Nurse Maggie was very busy today with other kids so she couldn’t take me on a walk. I’ve been very bored today. I played with my Lego set that I got for Christmas which was fun.
Guess what?! The girl is back! Nurse Maggie woke me up this morning and when I looked out my door across the hallway she was sitting on her bed. I waved and she waved back at me. I’m very happy to see her again! I’m also kind of sad though because if she’s back here it must mean she’s really sick. I really want to talk to her and ask her what’s wrong with her. There’s a doctor in her room right now so her door is shut. I’m going to bed now.
This morning after I ate breakfast Nurse Maggie took me on a walk down the hallway. She pushed my medicine tree thing. There was a doctor in the girl’s room when we walked past but she still waved to me. I asked Nurse Maggie if the girl could go on a walk with me one time. She said she’ll ask her. I hope she says yes. I liked walking. I liked getting to look in all of the rooms. Nurse Maggie said it’s not polite to do that so I did it when she wasn’t looking. There’s a little baby a few doors down from mine. She was very cute and little.
Nurse Maggie took more of my blood for tests this morning before breakfast. I got a Batman band aid. Batman is my favorite. The girl’s door was shut most of the morning. Then she opened the door and her hair was wet. I think she took a shower. Then guess what?! She came across the hall! She asked if I wanted to go for a walk. I put on my hat so she would think I was cool. We started walking down the hallway and she pushed my medicine tree. I told her my name and asked what hers is. She said that it’s Nikki. I like that name. She told me she really liked my hat. That made me happy. I asked her why she left for a few days. She said her parents wanted her home for Christmas. That makes sense. Then I asked her why she’s here even though Nurse Maggie told me not to because it’s not good etta kit (I don’t know how to spell that). She said that the doctors don’t know. I asked if she was sick like me. She said maybe. I said if her hair fell out she could borrow my hat. She said thanks but looked very sad. I hope she’s not mad at me because I was just trying to be nice. She asked me if Batman was my favorite because that’s what was on my t-shirt. I said yes and she said same! Then we talked about how bad the food here is most of the time. I told her that my favorite food is pizza. She said that one day we will break out of the hospital and go to the pizza restaurant across the street. I think she was joking but I would like that a lot. We had to go back to our rooms for lunch. After lunch I took a nap because I was very tired from walking with Nikki. She took a nap too. When I woke up I read a book. After dinner we all went to the tv room to watch some of the New Year’s Eve show in New York. I sat next to Nikki. Then Nurse Maggie came to tell all the younger kids to go to bed and that the older kids could stay and watch for a while longer. I said bye to Nikki. I’ve written a lot and I’m very tired because it’s late so I’m going to bed.
It’s officially 2012! I went on another walk with Nikki this morning. I found out that she’s 14 and a freshman in high school. I asked if high school is scary but she said no and that I will like it a lot. I asked her if she had missed a lot of school because she was sick. She said yes and that she was worried about making up all of her homework. I told her not to worry because I think she’s very smart and maybe I could help her. She said she’d like that. She asked if I was in school. I told her how I had stopped until I got better. She asked how long I had been sick. I told her since last February. She asked if it was scary. I told her not really and that sometimes I get scared of dying but I try not to be. I ask if she’s scared. She said sometimes. She said she’s scared of the unknown because she does not know what is making her feel so sick. I asked if we could be friends. She said that she thought we already were.
Nikki came across the hall this morning but I was feeling too sick to go on a walk. She asked Nurse Maggie if she could stay in my room and talk. Nurse Maggie said yes if she sat in the doorway so we didn’t give each other germs. Nurse Maggie helped her get a chair and a blanket from my room and she sat in the doorway. We talked about a lot of things. We talked about how our friends and family treat us because we are sick. Nikki said that her friends talked to her a lot at first but the longer she was sick the less they texted her. She said she only has a few friends that text her kind of regularly. I said I know what she means because I do. I asked if she gets lonely. She said sometimes it gets really bad and she feels really sad because it feels like her friends forgot about her. I told her I understood. She said that now we don’t have to be lonely anymore because we have each other. That made me very happy. I like that Nikki talks to me like one of her friends and not just a little kid.
I felt better today so Nikki and I went on a walk. I decided to ask her what she’s always listening to in her headphones. She said it’s really cool music. I asked if I could listen and so after we finished our walk she went into her room, got her laptop, came across the hall and sat in her chair in my doorway. She played several songs that I really liked (I will ask her to write down the names later). She bobbed her head to the beat of the music and so did I. That made her laugh. Nikki went back to her for a while to rest because she said she was tired. After dinner we both went to art. I drew a picture of a dog for Nikki. She said she loved it. She drew a picture of us. I was even wearing my cool hat! I really really really love the picture. Nikki asked for 2 pieces of tape so we could each hang up our pictures on our wall. When I got back to my room I hung it up and I saw Nikki do the same. I’m going to bed now so bye.
Mommy and Daddy came today. My birthday is tomorrow but they won’t be able to come by because they are busy. That makes me sad. They brought me presents. I got a batman t-shirt and black sweatpants and furry slippers. Daddy gave me a candy bar too. It’s a Snickers which is my favorite. I waved for Nikki to come over and she put on her slippers and walked across the hall to my doorway. I introduced her to my parents. They asked her how old she was and how long she had been here. I think they wanted to know how sick she is. I told them that Nikki goes on walks with me. Daddy said that maybe one day he’ll join us because it sounds like fun. Nikki said that would be great. I think my parents like Nikki and that she likes my parents. That makes me happy. Nikki stayed for a little bit but she said she was going to go rest because she was tired. Daddy said “thanks for watching out for my little boy”. Nikki said it was her pleasure and that I watch out for her as well, then she went back to her room. I told them that Nikki and I are best friends. They said good and that she seems like a nice girl. They left after dinner. Today was a good day.
Today is my birthday!! This morning Nurse Maggie brought a balloon to my room. She tied it to my bed. I really wanted Nikki to come across but she was in her room whispering to Nurse Maggie. Then when Nurse Maggie left she was on the phone for a while. I thought she would come across after that but then she sat in her bed and started writing or drawing something. I wondered if she had forgotten it was my birthday. After lunch she finally came out of her room and across the hall. I had asked Nurse Maggie if she could help me put on my new sweatpants and batman shirt this morning. I put on my hat and slippers too and we went on a walk. Nikki said she really liked my new clothes. That made me happy. I asked why she was in her room all morning. She said it was a secret. After we went on our walk Nikki said she’d be right back. When she came and sat back at my door I asked where she went but she wouldn’t tell me. She sat in my doorway and we talked for a little bit. Then she went back to her room because she had something to do. I was getting upset at all her secrets. Then right before dinner time Nikki and Nurse Maggie came into my room and told me to come with them. They took me to the tv room and there were several other kids there! Nikki and I sat by the other kids and Nurse Maggie put in Batman. I love that movie. Then towards the end of the movie an older boy (who I found out was Nikki’s big brother) brought in pizza! Nikki said that since we couldn’t escape to go across the street she had her brother bring some to us! All the kids sang happy birthday to me and then we got to eat pizza. It was very very delicious. Nikki introduced me to her brother and I said thanks for the pizza. He said it was no problem. We all hung out in the tv room for a while and it was a lot of fun. Then all the kids went back to their rooms and Nikki, her brother and I went back to mine. She gave me a card that had a picture of batman on the front. That must have been what she was drawing earlier. Then Nikki and her brother said goodnight and went back across the hall. Nikki’s brother hung back and told me to take care of his little sister. I promised him I would. Right now I can see them on their computers. Today was my favorite birthday.
I woke up very late today. Nurse Maggie said that she wanted to let me sleep since I must have needed it. I look across the hall and see Nikki sitting on her bed brushing her hair. Her hair is wet and she’s in different clothes so I think she took a shower. Then she laid in her bead and watched tv. After lunch Nurse Maggie let me have a bit of the candy bar I got for my birthday. It was very yummy. I had wondered why Nikki never came over so we could go on a walk but then Nurse Maggie came in and said that Nikki wanted her to tell me that she wasn’t feeling very well today. Nurse Maggie says that her medicine could be making her very tired. I hope Nikki is okay.
When I woke up Nikki brought her breakfast tray over and sat in my doorway. She said that she feels a lot better. I asked if the doctors knew what was wrong with her yet. She said they had a few ideas but they weren’t sure yet. I then asked her if she was scared of dying. She didn’t say anything for a bit so i thought I made her mad. But then she said she’s only scared of dying without having an impact on the world. I think that makes sense. She asked if I was scared of dying also. I said sometimes. I said I don’t want to die by myself. She said that makes sense. I like Nikki because I think we understand each other a lot. After breakfast I had to get more tests in another part of the hospital. I felt sick so the man who always brings me to my tests got me a wheelchair. Sometimes if we were in an empty hallway he would push me fast. It was lots of fun. The tests took a long time and when I got back to my room it was already dinner time. Nikki waved at me and I waved back. I’m going to bed early because I’m exhausted.
Nurse Maggie came in this morning after I ate breakfast and she said that my tests showed that my sick bugs are spreading. She told me that the doctor said I shouldn’t go on walks for a while because it’s too much effort for my body. Nikki came over after Nurse Maggie left. I told her the news. She looked sad and worried. She asked me what I thought about it. I told her that I’m not too worried because I have no control over the sick bugs. She said I’m very brave. I asked if she would come sit with me every day since now I can’t go on walks. She said of course. That made me happy. She stayed until dinner time and we talked about all sorts of stuff. She went back to her room after dinner. She said she was going to draw me something pretty to put up on my wall in addition to her card and the picture of me she drew. I can see her drawing it right now. She always bites her lip when she’s concentrated which I think is funny.
Nikki brought over my picture this morning. It was a picture of me and her riding horses. There was a giant rainbow behind us. It was very colorful and I like it a lot. She sat in my doorway and we ate breakfast. I could only have jello and a piece of toast because my tummy keeps getting sick. I asked her what she wants to be when she grows up. She said she would like to make movies. I think that’s really cool. I think she’ll be very good at it. I said maybe I can be in one of her movies. She said of course and that it will be an oscar-winning film. Nikki stayed in my doorway for most of the afternoon. We talked about everything. I asked her what her biggest fear is and she said being forgotten after she dies. I said spiders. Nikki’s watching me write this. She just pulled a very funny face. I told her that I wrote that. She called me a punk. That made me laugh.
Nikki was in other parts of the hospital all day seeing doctors and getting tests. She didn’t get back until a few minutes ago. I watched tv most of the day. The craft lady came by and brought crayons and paper. I drew a picture of Nikki with a camera and me dressed as Batman in front of the camera. At the top I wrote “Nikki and Liam in 2021″. I’m going to give her the picture tomorrow. I’ve been very tired lately. I don’t like it. Even getting out of bed to go to the bathroom makes me really tired. To be honest I’m a little scared. I feel like I’m getting sicker. I don’t want to die yet. I don’t think I’m scared of dying. I think I’m scared of leaving. I don’t want to leave Nikki or my family. I want to live to 2021 and make a movie with Nikki. I want to see Nikki get better and I want to see her be happy. I don’t want her to feel lonely ever again. I don’t know. I guess there’s not exactly much I can do about it. Nikki just smiled at me. I like it when she smiles. I told her that once and she said I was making her blush. That made me giggle.
Nurse Maggie did more tests on my blood last night. This morning she came in to change my medicine. I asked why. She said I need something more powerful to fight the sick bugs. I asked if I’m going to die. She said “I’m going to be honest kiddo I don’t know what you’re future is going to look like.” I’m glad she was honest. I hate when adults lie to me. I told Nikki this when she came over. She agreed and said that she hates when adults try to lie and say things aren’t as bad as they are. I like that Nikki understands what it’s like being a sick kid. I gave her my drawing and she said she “absolutely adores it”. Nikki said she made something last night. She opened her laptop and started playing music. She said she made a playlist called “Liam and Nikki’s Greatest Hits”. That made me feel special. After lunch my medicine machine started beeping. Nikki jumped up and ran to get Nurse Maggie. I felt very dizzy and it was really hard to breathe. I started to cry. But only a little bit. Nikki looked scared so I had to be brave. Nurse Maggie gave me medicine to make me “feel comfortable”. She said that my body was having too hard of a time fighting the sick bugs in me. Nikki stayed for a while but went back to her room because she was tired. I think running to get Nurse Maggie was hard for her. I’m glad she did. She’s a very good friend. She looks like she’s sleeping right now. I wonder if the doctors ever discovered what was wrong with her.
I woke up this morning and threw up. I really don’t like feeling this sick. Nikki came over with her laptop and started playing Liam and Nikki’s Greatest Hits. She sat on her computer and I laid in bed. We didn’t talk much because I felt too bad. I’m glad she kept me company. Before she went back to her room she said “Goodnight Best Friend.” I said “Sleep tight Best Friend.” I like that Nikki said I’m her best friend. Nikki is my best friend.
Liam died two nights ago. He passed away in his sleep after his tiny body couldn’t handle it any more. Nurse Maggie says he probably wasn’t in that much pain when he died. His parents found this journal and after reading it they decided to give it to me. One of the saddest things I’ve ever witnessed is two parents losing a child. I don’t think I’ll ever forget the looks on their faces as they gave me a hug and said goodbye. January 5, 2004-January 13, 2012. Much too short of a life. Yet Liam did not use his young age as an excuse not to change the world. He changed my life in ways he’ll never know. I was in a bad place when I came here. I didn’t know what was going to happen and I was terrified. I was also hopeless. I was in a dark place before I met Liam. But this sickly 50 pound 8 year old in Batman pajamas and the most ridiculous looking hat I’ve ever seen managed to open my eyes in ways I never thought possible. Liam taught me that there’s no use in feeling sorry for yourself. He never let his grim diagnosis affect his view on the world. He found joy in everything and saw the good in everyone. We can all learn something by the way Liam lived his life. He taught me the true meaning of a best friend. He knew how to ask tough questions and how to listen. At 8 years old he was wiser than any old philosopher. Liam understood things. He understood the inevitability of death and that there’s no use in being afraid. A few days ago I asked him what he thought his purpose was on this earth. He said that it was to help people and that he was afraid that he’d die before being able to help someone. He definitely helped me. I’m getting discharged this afternoon but I’ll never forget these past few weeks. Liam taught me to love unconditionally because the world is a beautiful place and you have to cherish it for whatever time you have. I know that Liam is up in heaven now eating pizza and playing with Legos. I guess I’m writing this just to say thank you. Thank you Liam for being my superhero. Thank you for being my Batman.