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!