Monday, September 26, 2011

Last night there was a hockey game at home, in Cape Breton. The game was in memory of a special man and his family decided to donate money to a child in need every year. This year they picked me! There were lots of people at the game. Nan and papa, aunt Lisa, Madi and Ali were there. Mommy said there was a group of cheerleaders there helping out too. They made lots of money to help mommy, daddy and me while we are in Montreal. Oh, and I should mention that I am eating real food now! Well, I guess you can call it real food, its really just a bunch of mush that mommy shoves in my mouth. She says its called cereal and she feeds it to me in the morning when I wake up. At least its a change from the milk, it really doesnt taste too bad. Mommy and daddy say its made my diapers stinkier! Glad I dont have to change them!

Saturday, September 24, 2011

I'm still not eating. The nurses and doctors gave me a few chances to start eating more but said that they could not wait any longer. So, today I got my feeding tube put in. The nurse put it in in the afternoon and they were going to start feeding me through the night. When the night time came it turned out that my feeding tube was not in the right place so they had to remove it and start all over again. Of course it wouldnt be right. Mommy says if anything could happen it would happen to me. Tomorrow at home they are having a special hockey game and all of the proceeds are being donated to me! Mommy and Daddy say there are these nice people who decided to help me for a very special cause. I'm such a very lucky boy to have so many people who care about me!

Friday September 23, 2011

Today is day 2 of my transplant. I did not have the greatest day today. I still wont eat and I still have lots of fluid but they finally got my pressure under control. Because today is Friday that means its antibody day. I'll have to get antibodies every Friday, even when I go home to Halifax. Not much really happened today now all we do is wait. Mommy asks for my lab work everyday and we are all waiting patiently to watch my good cells rise.

Thursday, September 22, 2011

This morning started off with me being cranky so they gave me some medicine that was supposed to help with my of pain from everything. Mommy said it is called morphine. Today I got the second half of my transplant. everything went much better today than yesterday! I cried a little bit but the taste in my mouth wasnt as bad. I spent most of the aftenoon sleeping. I'm still not eating much but at least I wasnt as cranky as yesterday. Right after the transplant the nurse gave me some medicine to help me pee again and I peed a lot! It went right through my diaper, then through my pajamas and all over mommy. Daddy laughed and took pictures of it! We were soaked in pee! Later in the day I needed more of that morphine stuff because I started to feel a little sore again. Tomorrow they are supposed to give me some cereal. Yayyy!! Solid food! Maybe I will like it better than my milk and actually want to eat something.

Wednesday, September 21, 2011

September 21st, the big day! It finally came! It started this morning with giving me some medicine and then it was on to the transplant. It was all the red stuff they collected from Gabby. There was a special nurse who came to help put the red stuff into me. As soon as it went inside of me, I got this funny taste in my mouth! It was so yucky! Mommy and daddy could smell it, they say it smelled like metal and ketchup. The doctors told us that I was going to smell like that for a few days. After all the red stuff went inside of me, they gave me some more medicine. I had a reaction to one of the medicines and it made me have muscle spasms. My eyes rolled back in my head and got stuck there and my neck went sideways and got stuck like that!! It was awful, it was so painful! It happened on and off for almost six hours. Needless to say mommy told them not to give me that medicine anymore. Because of my reaction, they couldnt do the second half of my transplant today, so the doctor decided to wait until tomorrow. After a while I felt a little better but I still didnt feel like eating at all today. Something funny is happening when I pee. The doctors say its normal but all this red stuff is coming out of me! I was really cranky all day today but what else is new?!

Tuesday, September 20, 2011

Yesterday and today were supposed to be rest days but I didnt do much resting. Yesterday they adjusted my blood pressure medicines and today it finally seemed to be a little better. My breathing is still very fast but tomorrow mommy is going to ask the doctor for some extra medicine to make me pee. Tomorrow is the big day finally. I'm a little nervous but at least tomorrow is day 1 and I can start counting to day 100. Hopefully then I can go back to the IWK. My doctor told me, mommy and daddy today that tomorrow is the day they cure me. I really, really hope he is right.

Sunday, September 18, 2011

Yayyyy!! Today is my last day of chemo!! I cant wait to be done. I'm still pretty cranky, the nurses say its because of the Ativan but that will be over tomorrow. I'm doing okay with the eating but I seem to be having a lot of gas. I spent a lot more time with just daddy this morning because mommy was really tired so she didnt get to the hospital until after lunch. I think I'm giving mommy and daddy a hard time with my crankiness, but only a few more months and then hopefully all of this will be behind us.

Saturday, September 17, 2011

I've been pretty cranky the last few days. Nurses say its from the Ativan but I dont know, I think its from ALL of this medicine that they have been pumping into me! I spent most of the last few days screaming. I'm not giving mommy and daddy a break at all! Of course they wouldnt have volunteers available to give mommy and daddy some alone time. My blood pressure is still way up, they keep increasing my medicine to help with that. All of these fluids dont help much with keeping it down. If anything, they are making me puffy and making it harder for me to breath and that sucks! Daddy was on the phone with someone yesterday talking about me and telling him our story so far. I guess its for some kind of paper so that everyone can read about me and my sickness. I think I heard daddy say its called the Halifax Herald and it should be out mid next week. Why someone would write about me, I dont know. I guess I'm just that special.

Wednesday, September 14, 2011

I am not feeling like myself. The nurse gave me the medicine that made me sleepy and cranky. It was to make sure I didnt seizure from the side effects of the chemo I guess. I did manage to eat today and everyone is still very impressed by that! They only had to give me one chemo today and they didnt have to take as much red stuff as they did yesterday. But, my red stuff in my body is very low so I had to get some and mommy and daddy were told that wont be the last time that happens. I might have to get red stuff put in me 10-15 times during my stay here! I have been having a lot of problems with my pressure and with being puffy. The nurse gave me some medication for both and it seems to work for a little while. Daddy said the chemo seems to give me more of a personality. I have been very demanding lately and they say there doesnt seem to be much they can do to please me. Oh well, Im just a baby, I can get away with acting like that!

Tuesday, September 13, 2011

My chemo started today. My favorite nurse was here today and when she came in my room she noticed that I was all puffy. It was from all that fluid that I got the night before! I knew that was going to happen! I got two different kinds of chemo today and after the nurse gave it to me she took a bunch of red stuff. The nurse said I would probably need to get a bunch of red stuff because she was taking so much of it from me to get tested. Day one of chemo wasnt so bad, I actually felt like eating today and everyone seemed very impressed by that. It wasnt until the night time that the problems started. They gave me some medication to help me pee out all the extra fluid that was making me so puffy. My pressure went up really high and the nurse had to call the doctor to get some more medicine to give me. Eventually it went down and I felt a little better. My cousin Gabby came to the hospital today and I got to see her through the window. She is sleeping here tonight in a room just like mine! Gabby is very special, she has magic in her bones! Tomorrow the doctors are going to take some of Gabby's magic and save it for me because I have no magic in my bones. My cousin is so brave to give me her magic like that! I love her very much!

Monday, September 12, 2011

Today was supposed to be a rest day. I didnt do much eating but mommy and daddy tried to force me to eat. I just dont feel like eating. The nurse came and took more red stuff from my big line, atleast it doesnt hurt now like it used to, but they take lots of blood. My chemo starts tomorrow and they gave me a bunch of medication before it starts. They hooked me up to a big pump and put a bunch of stuff into my big line. They told mommy and daddy it was fluid to flush out my kidneys so the chemo wouldnt be so hard on them. I just hope I dont have trouble breathing like I did the last time when they gave me all the fluids in the IWK.

Saturday September 10th 2011

I am so sleepy today because I was throwing up all night! I didnt really feel like eating all day today but at supper time I did pretty good! The nurse gave me some medicine and then I threw up all my milk.
I still didnt lose the fluid weight from yesterday's surgery. The doctor told mommy and daddy that I should lose that extra weight soon. Because my kidneys arent working 100%, it takes a little longer for me to pee everything out. I didnt give any smiles today because I just wasnt feeling like myself. The nurses told me today would be a quiet day and they wouldnt have to poke me and take any red stuff. They said I could spend the day relaxing, but instead I spent the day being cranky and sleepy. I am really sore under my arm where they put in my big IV line. It hurts when mommy and daddy pick me up under the arms and I cry! My big IV started bleeding today but they tell me that's normal we just have to keep an eye on it. Maybe tomorrow I will feel a bit better!

Friday September 9th 2011

I was so hungry this morning when I woke up it was awful. I didn`t eat since last night because they wanted my belly to be empty for surgery. I was supposed to be there at 9:45 but they were running late so I didn`t even get in until 11:00. They had to put that thing on my face again so I wouldn`t catch any bugs on my way to the operating room. There were so many little kiddies there that I didn`t feel so scared. They were all being so brave so I had to be brave too. The nurse wrapped me up and took me from mommy and daddy. Mommy was so sad she cried the whole time but I`ve been through so much that I was tough. They told mommy and daddy they would put me to sleep with a mask first then keep me asleep with some medication in an IV. Thank goodness I was asleep for that IV because I really didn`t want to get poked again. They told mom and dad to stay in the hospital just incase they got called back to the operating room and that it should only take two hours. I guess something went a little wrong during the surgery because I was there for an extra two hours. They told mommy they had to fix my central line after it was already done and they had trouble getting my bone marrow so they had to poke me four times. Twice in the back and twice in my shins. When I finally was done and came back to my room I was so sleepy because they gave me all kinds of medication. I had wires on me everywhere because they wanted to keep a very close eye on me. The last time I had my PICC line put in I stopped breathing so this time they hooked me all up to monitors and of course I had a terrible night. I needed a bit of oxygen to help me breath and I threw up all of my medication twice. I got some stuff to make me sleepy from a needle and so I wouldn`t feel so sick anymore. It worked for a little but I was cranky all night long. Mommy stayed up with me because she was so scared but I was just sore and hungry but sick to my belly. All I did was cough cough cough and my throat was so sore from the tube they had down there. I can`t wait until tomorrow comes so maybe I won`t feel so yucky. Ughhhh so exhausted...I hope this will all be over soon but I`m afraid its just begun.

Thursday September 8th 2011

Another horrible day today. Poke poke poke. I woke up this morning to some nasty lady poking at me and moving me around my bed. She didn`t even say hello to me, mommy, or daddy just walked right in the room and started. Mommy got really mad at her because she wanted mommy to keep my hospital bracelet on all the time but it cuts my leg so I don`t like to wear it. She wan`t very nice at all and I thought mommy was going to yell but she just left the room and daddy stayed with me again. No red stuff again that time so more nurses came to poke. Still no red stuff so another nurse. Still no red stuff and finally one last nurse came and mommy stayed this time. She was so nice to me and talked to me the whole time. She had to poke me in the head but it was so quick I didn`t cry that much. Mommy was so happy they got red stuff that she thanked the nurse over and over again. It was another bad day for me but the nurses tell me that I shouldn`t have to get poked anymore because tomorrow I will be getting my central line put in and they can take all the red stuff from there from now on. I`can`t wait for no more pokes but I`m kinda scared to get put to sleep for my surgery. They told mommy and daddy it should take two hours. I will get my central line and they will take some bone marrow. I really hope everything goes ok.

Tuesday September 6th 2011

I went on another adventure this morning downstairs with mommy and daddy and the nurses put this thing over my face. Mommy says its to keep the bugs out but I don`t like wearing it at all. It gets way too hot under there and I can`t see anything. I got poked in the hand and they put this stuff in my veins so they could do a test on my kidneys. After it was over they sent me back to my room where I got to finish my breakfast. A little while later some nurses came in my room to poke me some more and try and take some red stuff. I hate being poked at it hurts me and I cry. Sometimes mommy cries too but most of the time she leaves the room and daddy stays with me. She used to stay with me all the time but she says it makes her sad to listen to me crying all the time. After they poked me a bunch of times they said they couldnt get any red stuff so I had to go back downstairs to be poked again down there. I got poked a bunch again and still no red stuff so that meant they had to hold me down under this light to take pictures of my blood instead. I had to do it every 30 minutes five times. It was the worst morning yet. They poked me nine times all together and still didn`t get any red stuff. I was so tired I slept for almost nine hours that night. Hopefully tomorrow is a better day.

Monday September 5th 2011

The nurse tried to take some red stuff from my IV today. Just my luck, nothing came out. My IV was broken so they had to take it out of my arm. I`ll have to get a new one tomorrow to last me until I get my big big one in my chest. Mommy put a bag in my diaper today to try and collect some pee for a test. She stuck it right to me. I`m sure you know where she put it. It wasn`t too bad going on but coming off was horrible. It was so sticky she nearly took my goods right off. I had to get a test done on my poop too but that wasn`t bad for me. Mommy just saved my diaper for the nurse and she had to scoop up my poo. Pretty gross if you ask me but pretty funny too.

Saturday September 3 2011

I have PERFECT hearing!!! One more thing to tick off the list. All my scans came back great too so I have strong lungs, good hearing, the pictures of my kidneys are great, no UTI, and my liver is holding its own. The only thing left is to have a kidney function test because the last one I had said my kidney`s weren`t passing enough blood through them to filter stuff out. That happens on Tuesday so we will see how that goes. Otherwise I am pretty healthy, except I have no immune system. But...that is coming soon.

Friday September 2nd 2011

Today I got my hearing tested. Since the doctor told mommy and daddy that I had a 50-60% chance of not being able to hear or having a hearing problem they were pretty nervous to get the results. This lady put these funny sticky things on my ears and daddy laughed at me and took pictures. He said I looked like a transformer. Optimus prime to be exact. I didn`t think I looked that bad. Mommy seemed to think I looked cute. I know the nurses think I`m cute for sure. They look at me through the big glass door and say I am "tré cute". One nurse even said I have an "amazing face". I`m not even sure if that is what he meant to say because sometimes they get confused with thier english. Everyone talks french around me, even daddy. Mommy doesn`t have a clue what people are saying. She refuses to even say please and thank you in french. I`m sure she will lighten up eventually. ha ha

Thursday September 1st 2011

I had quite the busy day today and I`m sure it isn`t going to be the last for a very long time. I woke up to more people in white coats taking red stuff from my foot. I thought that was over but I guess here in Montreal they have to do that too. After I ate my breakfast the nurse came to tell mommy and daddy I had to get some scans done and they might have to make me sleepy if I don`t cooperate. I plan on being a good boy because I dont like the idea of going to sleep with medication. The nurse had to put a big pokey thing in my arm then taped me all down with a board. She said it would only be in for the day but I still have it in now. Once she poked me then she said she might leave it in until I get my line for my chemo. Ughhh I wish they would stop poking. After the poke I went on an adventure outside of my room. Mommy tucked me in a blanket and put this funny thing over my face that everyone wears when they come to see me. Mom stayed while they put me in this big round machine and put stuff in my veins to take a picture of my lungs. I was so good they gave me some apple jelly MmMMm. After that they took me in another room where some man put cold gell all over my belly so he could take pictures of my insides. After all that I got to eat my lunch then got more red stuff taken but this time no poke. It came right out of the tube thats in my arm. The doctor then came and asked mommy and daddy`s permision to take some bone marrow from me as a back up just incase my transplant doesn`t work. Then they can put it back into me and send me to L.A. for gene therapy. I really really hope it works the first time. Another doctor came in after that and poked around at me. She was the 4th person today to look at my bum. Man my bum must be some cute. She gave me a new medication that tastes yummy. More tests in store for tomorrow and more doctors to see. Ohhh Joy!