Lots of things can happen in a week, well, eleven days if you want to be technical(I have been slacking again on my Blog.) Or nothing can happen. I moved from the hospital to my Great Aunts house for the week. It was a change of scenery, home cooked meals, the way ma used to make. I am thinking(even though the scales had changed), from what it told me I had again gained 10 lbs., not from fluid, thankfully. Of course the weight I gained is pure muscle... I am back to my ripped self. No, I believe my belly stretched just a touch, but my walking is normal now, I am just still really inflexible, and my back is quite tight... I guess I have to start practicing Yoga. I am still doing my physio-stretchy-band-exercises, they seem to be helping. So the past week was filled with a lot of cards ( I was living with my grandma, and her sister...Not a lot to do, but we had fun.) Not to mention, I ate a lot of food!!

I was not totally out of the hospital the whole time. Tuesday I had to get my blood drawn, as well as get a whole bunch of X-rays done, pulmonary function test, and see the dentist. Wednesday I had a delightful Lumbar puncture, and then laid on my back for three hours. But my friend Maureen came and kept me company for a bit, then it was off to my psychologist. She was pretty nice, I didn't feel like I was being analyzed or anything, I was fairly comfortable actually. Luckily I haven't had any major headaches from my lumbar punctures, so that made this time off easier. Thursday I only spoke with the research nurse, and Dr. Jeje, who will be looking after me throughout transplant. Friday I was scanned to find my bone density, and injected with a nuclear agent for my MUGA scan, which takes pictures of my heart beating. Ad that was it for that week.

I have been feeling well, however I have been nauseated every morning and had to take Zofran(twenty bucks a shot). As well I am having more trouble swallowing my pills, and have come to the conclusion that it will be extremely difficult to go back to hospital food. I am almost sick just thinking about it. But we are heading closer to transplant, my donor was changed, but the new one is just as good.

Justin:)

Balloon

My life has become a hot air balloon,
dropping slowly towards the ground,
dodging trees and power lines.
With short bursts of warm air,
along the horizon I drift,
bobbing unsteadily, up and down.

A day soon I will drift gracefully towards the sun, obstacles behind.

Leavin' for a bit

Just Droppin' a short line. The lumbar puncture went good today, took a little longer than it should have, but the fluid just wasn't flowin' very good, so I had to be rolled over to get it to come out(with the needle in my back.) I am always a little paranoid that the needle might snap off, but I think that is fairly improbable, but still someting that you can think about when you have tons of needles. I listened to Elton John's Crocodile Rock on the radio as the procedure went on, it was a little distracting, but of course nothing really distracts when a nerve id accidentally hit by the needle. I layed in bed for four hours, I just got up practically, so far so good...No headaches, but my head dos feel not quite right, hopefully it is just from laying down for so long. But I am heading out of the hospital, I am happy, although I will be in the scenery on Tuesday and practically all week, so I am not really leaving. But I will finally get a more relaxing sleep, in a bigger bed. Hasta Pronto Hosptal Room!
Justin:)

Me, on the operating table, and Louise, the helper nurse! 

Getting the fuid out, the needles tere but not quite as big as the other operation, and no close ups this time. 

From Forty To Point Something in Thirty Days

Of course I was not worried, I knew everything was going to be alright! I had quite a few doctor visits today. This morning as I woke up I got the news, although not official, it was quickly pronounced as "good news". It was only a tease though. Dr. Robbins had not fully looked at the report, but from what she saw it was "good". I was a little annoyed with the limbo stage and large range "good" can be. But in a few hours Dr. Syanni came in to see us(mom and me). I was sweating profusely, and I think that instead of urine, the fluid is draining through my sweat glands now(Great...Sweaty soaked arm pit stains.)So as she began talking mom was holding her breath and I was dripping sweat. She assured us good news, and this time there was an official report to back her. Less than 1%. That is a thirty-nine point something improvement from a months ago today when I started this last bit of chemo. This is extremely good news, although not complete remission which would be ultimate, it is the next best thing. Dr. Savoie(my oncologist who took my case) called it Remission with Minimal Residual Disease, but whatever, I can now say I have 0.32%(something like that) Leukemia.

Dates were mentioned for transplant, it looks like a month will see me back in hospital, oh yeah and I can be discharged tomorrow!! March Ninth is the proposed date, but along with that it needs to satisfy the donor(who I found out is from North America if that narrows it down any for you). I may or may not be able to contact him afterwards, I guess I have a bit more information: he is a twenty-five year old and matches very good, they just have to do more tests for hepatitis, HIV, and other possible diseases, but so far it looks very promising especially with back-ups.

So with having a month of nothing to do I am being put on some maintenance chemo drugs, I was given Vincristine today, and will have a couple of pills that I will need to take over the month. Unfortunately I will have to have a couple more Lumbar Punctures, one tomorrow, and maybe next week too. It may be back to the headaches again... I mean...No, I won't be having headaches this time. Next week will be busy. I have to see the Opthamologist, and get a whole bunch of other tests done to confirm my readiness for transplant, and compatibility with my donor, which is fairly certain. Before Transplant I will see the bone doctor, the heart doctor, the lung doctor, the eye doctor, the dentist, the radiologist, the pharmacist, the social worker, and the psychiatrist. Not all at once of course.

Like I said, it will be busy month, many preparations, and I will have to try very hard to increase my strength significantly otherwise the next phase will be slightly difficult, "slightly may be an understatement. I won't turn into a body builder in the next month but maybe tone up a bit, lots of protein, and carbs to get me a little more weight on before the long haul.

I forgot to say I lost another 3.7 kg from yesterday afternoon to 8:00 this morning... Incredible...I guess, I feel thinner, but I think my stomach really is a bit tubby now(too much ice cream.) Indulgence, if you like(or can stand) some kind of food in the hospital, it is a good idea to eat it!
Justin:)

Improvement...Good News

Well the past few days haven't been the greatest days being in the hospital, but they for sure have not been the worst. I am feeling a thousand, maybe not a million, times better that I could have said two weeks ago. The past few days have seen great improvement in my state of being, of course I never lost spirit, but I did lack movement. It was hard, at first, to stand up. I think it was an understatement to say I had only gained twenty pounds, a safer bet was in the twenty-five to thirty range. In just the past two-and-a-half days I have lost a whopping five kilograms, this translates to about eleven pounds, quite a sharp drop, and something to worry about if it were not water jiggling around my waist. Speaking of which my waist is shrinking, as well my lower extremities are about normal too, a little stretched, but I think it will be normal again. I still have about six kilograms that I should be losing, and it is showing in my excretions, I am voiding litres at a time. It is amazing that when you are full of fluid how far your bladder can stretch, I just hope along with the stretch marks I don't end up with loss of bladder control as well. I am not turning into a woman, and I refuse to wear Depends!

My walking is getting less wobbly and more controlled, I have been working with the physiotherapist who walks around with me checking my oxygen saturation while I walk. It was more difficult last week, but today I took my oxygen off. I still feel a bit light headed, but in conjunction with my hemoglobin being fairly low, this is something normal, my body just isn't getting as much blood circulation as it would normally. I am at 83 today where normal level is 137- 180, needless to say I am low. My white counts are lower too(2.6, normal 4-11) but everything climbed a few points today.

Things are happening really fast, I was just interrupted by my physiotherapist to go walking, without oxygen I was able to walk about four laps without my saturation going below 90%. Very good news, this may mean I am able to get out of the hospital for a little while, soon!! I seem to improving fairly rapidly.

On my walk I was interrupted by my Bone Marrow Transplant nurse. More exciting, but nerving wrenching news. I have a donor. Full matches, with a few back ups with full matches!!! I am shaking right now, I feel like screaming, crying, or laughing, I don't know what to feel. It will be soon, I think the donor may be from Calgary. I just have to wait for more good news, remission! It's very strange how things piece themselves together!

I had my fourth Bone Marrow Biopsy yesterday, I was given like five needles of anesthetic, she froze me good, way more than I have ever been. It went pretty good, hardly any pain, just the part where they wrench on it to get through the bone, the doctor was a little wimpy and had a little bit of a hard time. Eventually it got through and down into the marrow, but she did this twisting inside me because she said she had to make sure the marrow sample broke off, so she was twisting the needle, vibrating inside my bone....The weirdest feeling, could make you sick if you really thought of what was happening. Meanwhile I had the lab tech and the other doctor taking pictures of the procedure cause I hadn't seen it before. I'll post a few of them, I wish I could have got more close ups!!
Anyway, that's five days since I was here, I will try to be more consistent, but if not don't worry!! Justin:)

The aspirate, and the sample in the jar... 

The sample, my marrow... 

Jabbing for the sample.... 

The Samples they test...The slides are made by the lad tech, fresh outta me. 

Cleaning up the mess... 

Giving the Freezing!! 

The "Tool" they use for the Biopsy, the big blue one takes the sample. 

Summary...Three Months of Living

Time goes so slow in the hospital, at least I don't have a clock that stares at me across my bed in this room that I am in now, that's what I would spend a lot of time doing, staring at the clock. Something surely to make you crazy eventually. Today marks the third month of my becoming diagnosed, that fateful day in November, I still remember it perfectly, it wasn't very long ago, yet it seems so far away already.

So far I have been diagnosed with ALL, a form of Leukemia(the better kind to get I suppose). My initial state was not very good, I was a very sick kid. I was immediately put on antibiotics, and tests were done. My parents were given news, my life as I knew it had stopped dead in its tracks. Things were bad for the first few weeks, all the emotions and the sickness, I saw my body change, wither away it seemed, but eventually I was back on my feet with an appetite. The next four weeks were not very hard except for the waiting. It was made easier by the visitors I had been having, my friends that I had made through Katimavik. I actually met a girl that became more interested in me as she came to see me more and more, we kinda have something going now, even though she is working at Club Med in the Dominican Republic. I don't know why I have kept her a secret 'til now, but she was a big help in keeping me grounded in the hospital. As well as my mom who has stuck by me the whole time, at some points everyone in my family has been here, but life does not stop at home when you get sick, so life continues and we can't always be together but we can love, it's been hard on everyone. I miss home now.

December was kind of a jumbled mess at the start. Being tossed around whether or not I was going to get to go home for a week or two, if I was to stay in Montreal for more treatment, or transfer straight to Calgary to start. Eventually we were given the ok to get the heck out of Montreal, I was leary of leaving, the comfort of familiarity is easier on the mind than thinking about a new hospital, new doctors... We made it here and found the doctors just as good, and he nurses are good too. I continued my protocol through December as an out patient, and just to go into the Daycare center for the odd chemo, or LP. I was plagued with headaches though, so I spent a great deal of the month in pain, or laying on my back. Miraculously they subsided during Christmas, a few days of relief and I was able to enjoy it with my family that all came to Calgary to of course see me and my mom. It was really nice to be a family for a few days, even if it was only short.

The end of the holidays I was again not feeling really well, at the same time we received news that should have been known before Christmas that my Leukemia hadn't went into full remission meaning my chemo wasn't strong enough. I had to do more, a whole new protocol. I would start in a few days. It went fairly well, except that I was back in the hospital, the food, the uncomfortable beds, the middle of the night wake-ups, interrupted sleep, you understand. I did get a guitar for Christmas so I have been trying to teach myself. It's not going too bad, but I think I need some professional help, all I can play is Twinkle Twinkle, but I am getting 5 main chords down, just got to keep practicing. I missed two weeks of playing though; I got sick, very sick. Three Fridays ago I started that fever, ending up in ICU after almost a week and spending time there to get my lungs back so I could breath a little more normal again. During ICU I became swollen, still am, but slowly it is coming down, but my skin is stretched, I will likely look like a previously pregnant woman, stretchmarks and everything(no offense to all the mothers out there.)

So my lungs are on the mend, my body is on shrink mode, and I am learning how to walk again. It's going to take some time, but I will get back to what ever normal is again, before I get to go through it again, a longer process, the BMT. I have a list of matching donors already, so things are looking good in that direction. All I need now is my next bone marrow biopsy(next week) to tell me that I AM IN REMISSION, which I WILL BE!!!

Justin:)

Entry number ?....Lost count

Today...It was a hum drum day. I haven't been feeling very good today, my lungs...Breathing is somewhat difficult still, but it is improving and will continue if I am diligent with my exercises. Also the fact that I am now fat does not help my feeling any better. When I was put on so many antibiotics at once all the fluid started to become retained in my body, flowing out into my flesh. I have gained probably 20lbs. at least, in the past two weeks. Laying in bed, losing muscle, and gaining water weight doesn't help you to move around very easy. It is getting better but skin is sore because it has ecome stretched in awkward places like around my hips. Even areas "down below" have been affected...Have you ever tried walking around with a huge grape fruit between your legs? Well, the fluid start to leave soon, and then I'll be back to "skinny" me, well I know I will have very little muscle mass again, but I just got to keep on moving, stop laying in bed.

I had a respiratory therapist come in and do some breathing exercises with me, very simple, but definitely will help get my lung capacity back up. I was sick to my stomach a few times today, actually only this morning, but it passed. I slept a lot today, I think I may be catching up on ten nights of barely sleeping at all. When I was in my "insomnia" stage I would drift in an out of consciousness and begin talking like I was awake, I was talking on the phone once, playing games with my mom at the side of my bed, I am sure she thought I was nuts, I even tried to explain how to play a game to one of the nurses in one of my stuppers. I am laughing right now thinking about how ridiculous it all sounds, I was aware of what I was saying, yet it really made no sense at all. I have no idea where all those things came from...I guess I was delirious from the constant fever. When I was five I had a bad fever, and I still remember seeing the alligators and scarecrows coming out of the walls, and the "bad nurse" trying to steal my baby brother away, that was a really crazy one, but I remember it just like it happened. Speaking of delirium, a few other times, although I didn't have a fever, I was in bed sleeping and then all of a sudden burst out into laughter, not just chuckles or giggles, but outright boisterous laughing, uncontrolled, stomach wrenching laughter. My mom came into to ask what was so funny and all I could say was "I don't know!!!" and continued, probably for twenty minutes. Anyway. Enough reminiscing for tonight, I kinda drifted there but whatever! Lata Justin:)

Breathing

Recently, I was forced to visit the Intensive Care Unit of the hospital... I was having trouble breathing, one of the worst feelings in the world. I couldn't imagine having asthma or another respiratory disease, in fact I don't know why anyone would smoke for that matter(just throwing that out there). Before I back to the ICU, lets go over how I got there....

Thursday night I was feeling pretty good, I ate some pizza for my second meal, as I was still starving and my aunt had graciously snuck it up for me(not that it was an illegal move or anything). Now I know it wasn't the pizza that made me sick, so don't put that in your head. Some freak bacteria-fungal-viral-parasitic something entered my body that night. By morning I was at a milder fever that would begin to get worse as the days progressed. My fever bounced around ranging from 39.0-42.0, hardly ever dipping to anywhere close to normal. I was sweltering all day, shaking at times, I didn't have hot and cold flashes, but the constant heat was good enough. Of course no one likes being sick, but over four days of having a steady fever you begin to worry.

I was/am still in good hands; as soon as the fever struck blood cultures were ordered, I was rushed to be put on antibiotics, since I was so low with neutrophils I was very prone to infection for a few more days. I had the Respiration Team checking in on me periodically. Then the had the Infectious Disease Team in my room also periodically checking... Let's see if my calculations are correct, I have had about 10,453 chest examinations since two Fridays ago. But who's counting?! I also had like five chest X-rays, one of which I was standing and then suddenly passed out luckily to have said "I am dizzy" and gave enough time for the technician to save my head from the floor. I actually felt a little better after the fainting incident, but it didn't last long. I kept on saying that I would like to faint again... But it probably wouldn't have been a good idea.

So, no eating, cause it was hard to get strength to handle...You know that crap they give you. So I haven't really been eating much until the past four days.

Friday night(almost a week ago) I was having breathing problems, about three days before I had been put on oxygen just to be safe, keep a steady flow. By very late Friday night I was on a steep downward slide, I could barely put out a sentence when the ICU doctor came to see me. He said I better get to the unit immediately...I was on my way.

The name Intensive Care Unit is scary enough, but when they mention tubes, lungs, risk, infection, it seems a lot more scary. It is definitely not a very great place to be, people look bad down there, laying around barely moving, tubes coming out of their bodies....Hospitals I guess are supposed to be like that. But when it might happen to you, you help but feel scared. If my lungs got bad, I would have to be put out and attached to the artificial lung system...That was scary enough, but relieved I "only" had to get a very uncomfortable mask strapped to my face that forced me to trace in oxygen. I didn't get any sleep that night, neither did my mom or dad, who had both been alternating shifts with me by my side.

I stayed in ICU for three nights, and then they figured I was ready to head back to Unit57, a lot less risky up here, since there are so many more infectious diseases down there. My neutrophils were high again, almost skyrocketed, so I had more of a defense against infection. Still what I have is not totally clear, but my blood culture have been coming back negative, so whatever it is, is either hiding, or no longer a threat.

As long as my lungs keep on improving I'll be laughing....You can't really laugh without your lungs!
Justin:)