**Conditioning**

Day 1-Day after transplant ( 1st August 2002) The conditioning process has some horrific side effects. I have not slept for two nights and the vomiting and nausea is constant.

Day 3- It has been almost unbearable. Four infusion pumps and seven drips connected to my central line.The central line is a twin tube line that is fed into one of the major veins in the left side of my neck and run under the skin to a point below my left breast. From this point the twin line comes out of my skin and splits into two looms. This was where all the chemotherapy and intravenous drugs were administered, and where blood samples are taken. Although not in a good position it provides quick access and I much rather it than being poked and prodded with canulars. This is used instead of having to access different veins each time blood must be taken or drugs administered. The medications that are given to assist with minimizing the discomfort caused by nausea are vast. One very unpleasant side effect of the conditioning is mucositis - the inflammation and ulceration of the digestive tract (from the mouth to the other end). Nausea, a byproduct of the conditioning process also causes vomiting accompanied by stomach spasms, due to diarrhea. Another medication, given to counteract fluid build up, is lasex. It is given to get rid of excess fluid to prevent damageto your heart and other organs. You are given drugs to relax you and let you sleep.You can imagine what that mixture causes. Every ten to fifteen minutes in the night, get up and use the pan. I cannot and do not feel like eating so I am given food supplements and electrolytes through a drip.

Day 4- Guess what, another infusion pump. Now we are up to six. The new pump is a minimal volume unit. This allows medications to be infused without the big build up of fluids. Normally drugs are infused when mixed with a saline drip. I still do not feel well at all. Still have diarrhea, still doing lots wees and still vomiting - all the time. I am not used to vomiting so this is stressing me out alot. I needed more potassium and albumin and I also had one unit of packed cells (irradiated whole blood) last night. I will probably need some platelets early next week. Vomiting and diarrhea seems to be quite normal following TBI and the bone marrow transplant and leading up to engraftment. Engraftment is the process where the donated bone marrow finds its way to to the old area where bone marrow used to grow. This is where the new cells begin to grow.

Day 5- I ended up on morphine tonight because the pain caused by mucositis became too unbearable.

Day 6 Still on morphine and slept most of the day away. Hey I have six pumps on my mega pole now. I can not eat or drink because I can not swallow too well. My throat has been overrun by phlegm and saliva. The only way I am able to get rid of the saliva is letting it dribble out onto a towel covering my pillow and spitting the pheglm into a vomit bucket. When I vomit my throat gets cleared a little. I can not keep anything down anyway - when any food or drink hits the stomach I just vomit it back up anyway. It is just all yuck and gross.

Day 7- Managing the morphine a little better - not asleep as much. The pains in my stomach, as a result of the ulceration has improved a little, but my throat is really not good. The morphine is causing a bit of a react with my body - it is causing me to itch really badly. I had a little hair when I came to transplant however it is starting to fall out again. The hair on my arms have also fallen out as have my eyebrows. My potassium levels are still playing up a bit but they are keeping their eye on everything. Doctors are very pleased with my general progress.

Day 8- IIt has been decided to change the pain killers I am on - from Morphine to Fentanyl. The fentanyl will cause less irritation. I have also been put onto a PCA style pump so I can give myself adose of pain killer. I need it when I vomit, my stomach is quite raw which causes pain. Starting to bring up some blood in my vomit - that scared me. The team have decided to remove the potassium supplements from the TPN mix because they are trying to stabilise my levels. The pump method of potassium infusion a bit much as well. My throat is really starting to give me trouble.

Day 9 - (9/8/02) I am now really sick of the throat and spitting up of phlegm. It was a bit of a saga this morning. I had my first major nose bleed this blood just poured out. I got really scared, mum was vomiting from the sight of the blood then because I was so worked up I heaved really badly I ended up with blood out my nose and mouth. Not a good morning at all. The nurses were really good though. Calmed mum and I both down. I ended up being that my platelets were really low, so I had a transfusion. The nurses have now started mixing some potassium in with a drip solution (the doctors are happy that the levels are now stable). I will probably go back onto the premixed potassium with the TPN on Monday. WBC - 0.7.

Day 10- Today has been much the same as yesterday. Still not feeling great at all. The transplant team seem to be pleased with my progress. My temperature went up 38.1 tonight. Blood was taken to be cultured. I was put on broad spectrum antibiotics as a precaution. Get on top of anything nasty briskly. WBC - 0.12 this may not indicate engraftment just yet.

Day 11- My temperature has gone back down below 37 today. The doctors this morning said there are some new cells showing that are not mine.These cells may, just may indicate the beginning of engraftment. I have had some ice, water and green cordial to drink today. Still vomiting most of it up. The cold was nice on my throat which is still really sore. The nurses have made a special gargle mix (mucaine and xylocaine) for me, which does help a bit. I am still spending a lot of time asleep. Thats the only time really that I am actually comfortable. I had another nose bleed this afternoon.

Day 12- Much the same as yesterday. WBC - .17 They have risen today.

Day 13- Today is my sixteenth birthday. Plenty of cards and balloons from friends and relatives. Plenty of great presents too. My Aunt and Dads brother came to visit. My friend and her mum and sister also came to visit me for my birthday,and one of my good friends from school also called to wish me a happy birthday. One of mums friends and our neighbour called in to drop off a card and present. Friends of ours who run a restaurant in our local town called in after dinner for a couple of hours. It was a great idea of dads to buy two walkie talkies so I can talk to people. White cell count today was .22

Day 14- WBC - .29. I felt like crap today . My neck and back and arms really were really painful. My temperature is slowly going up - 37.7 at midday. Temp. was 38.15 at 12:30 so doctors called for blood samples for cultures and at 1:15pm intravenous antibiotics were started. One antibiotic caused an almost instant reaction. I started to scratch and my whole body went red. Apparently I have to receive it more slowly than normal.

Day 15- My white cell count has gone up to .88 today and the doctors are really pleased with my general progress. My temperature has come down to almost normal again. No cultures have grown so far from yesterdays blood tests. I am stiff and still have the pains in my neck and back. The cyclosporan which has to be given to me to counter the possible effects of Graft Versus Host Disease (GVHD), a by product of BMT causes the shakes, boy do I have them bad tonight.

Day 16- Things are starting to move today. My white cell count was 1.06 (the normal range is 1 to 14 where 10 is a good figure) this morning and the doctors are happy now that the engrafting process is underway. My Fentanyl has been reduced because the mucositis seems to have settled down in my mouth, throat and stomach. The food supplement drips (TPN,lipids,electrolytes) are going to be halved as from today to see if they can stimulate my system into wanting food by mouth ( I haven't eaten in three weeks) The nutritionist has suggested flat lemonade and dry crackers to start with. I was given some exercises by the Physiotherapists yesterday to try and counteract the stiffness in my neck, shoulders and back. I needed some albumen by infusion. I am still feeling nauseous. The nurses are changing the times I get the anti fluid retention drug lasex so that I get it at 6:00 a.m. and 6:00 p.m. so I can get some sleep at night.

Day 17- Feeling much better today. My overall pain is down to about 2 out of 10 at the moment. I actually had something to eat today for lunch, only some pineapple pieces. My white cell count today is 1.08 (weekend readings are not all that accurate).

Day 18 I slept pretty well last night. My base line pain killer (Fentanyl) was reduced to 25micro grams per mil from 50 micro grams per mil on Friday, where it was reduced from 65micro grams per mil. My PCA level was reduced from 65 micro grams to 50 today. I ate about two tablespoons of jelly for lunch today,what a shock to the system. I have this mysterious rash on my right shoulder blade and right chest which was diagnosed, and is being treated as probable shingles. Where did I get that from you ask, so do I. The doctors say because my immune system is still low I can easily come down with things like this. My white cell count this morning has gone up to 1.1 and my nutrifils are .4 at the moment. My platelets have gone up from 48 to 79 also. The Doctors are delighted with my progress, pity I wasn't as convinced.

Day 19 The doctors are convinced that I do have shingles. Apparently, and due to my immune system the team say that I may have come down with shingles a few months after transplant because I had Chicken pox when I was little. But being me I have to get it sooner than later. I am receiving drugs to counter act the shingles. The pain people have decided to leave my Fentanyl alone at the moment. Hey I actually ate some Water melon today. I have been drinking lemonade as well as water. My white cell count was 1.22 this morning. All my specialists are very happy with my progress, even with some of the setbacks.

Day 20 My white cell count today was 1.45 and increasing nicely. I have had my lipids and TPN removed because my fluid intake is still higher than my output. That takes my pump count to only four now. My renal function is not playing the game properly at the moment so the team is playing with fluid input to output ratios. I have been moving around my room today, even with my friendly pole and it's companions.

Day 21 The white cell count is the same as yesterday, but don't despair this is to be expected. My renal functions are behaving normally today. I had an ordinary day today. I slept a lot but that isn't such a bad thing when you have an uneasy night, the night before. I had a sweet biscuit and some leek and potato soup for dinner this evening. This is the first real solid food I have consumed in three weeks.

Day 22 White cell count was 1.86 and going well. The doctors are pleased with my general progress, and on paper all my results are very pleasing. My body is retaining a bit of excess fluid at the moment so I look a bit puffy in the cheeks and feet, they say just one of those side effects of the transplant process. The doctors have indicated that over a period of days my levels should return to normal. I tried some chicken nuggets for lunch today, what a mistake, straight back up. I had half a cup of chicken noodle soup for dinner tonight and so far so good. I still get sick at the drop of a hat but that my be because I still spend quite a bit of time in bed, so when I do get up I feel really nauseous. The only problem is that the medication which helps with nausea the best also makes me very drowsy. My shingles are improving so here's hoping that I can come off the medication over the weekend.

Day 23 White cell count today was 2.23 and rising. My appetite is slowly returning. I had some water crackers and soup for dinner and water crackers and sweet biscuits during the day. My Fentanyl baseline was dropped to zero today and PCA level was left alone. Tomorrow the doctors are going to trial removing the Fentanyl completely and just use panadol tablets for pain control. Tonight I started having my cyclosporin in tablet form. Tomorrow I will only have two pumps on a single pole. I will be allowed out of my room for a short time on Sunday to the outside verandah, weather permitting. If I do get out I must still observe isolation procedures and wear a mask out of the room, and only have contact with those allowed into my isolation room.

Day 24 White cell count today was 2.5 approx., the weekend readings are not as accurate as weekdays and my nutrifils were 1. I had Patsy's barbecued sausages for lunch and dinner, they were great. I am still retaining some fluid but my weight is not changing enough to indicate what I am showing physically with puffy face, hands and feet. Lasex is the answer once again to try and reduce the fluid. I needed two units of blood today because my level was 74 this morning. My morning dose of eight cyclosporin tablets didn't stay down, boy is it frustrating in the mornings. I vomit nearly every morning and must get it over and done with before I take my tablets tomorrow morning. My evening dose of cyclosporin stayed down. My Fentanyl wasn't taken off today like I thought, because my stomach is still causing me some pain when I vomit.

Day 25 White cell count today was 4.0 and platelets were 110. I had my first outside airing today. I was allowed out of my room and into the lounge room because my levels were looking pretty good. We observed the isolation rules and only had the designated family , contacts and staff with us. I wore a mask as usual when I left my room and until I was settled in the lounge room. I was very apprehensive about being out of my protective cocoon, it took ages before I could accept my change of scenery. I spent about an hour and a half before I had to go to the bathroom and back to my "palace" of protective confinement. Boy did that outing knock me up physically. I had to have a snooze when I settled back down. We are trying a slightly different approach to my evening dose of twelve cyclosporin tablets tonight. I am going to have a dose of lorasipam (anti nausea and calmative) first and about an hour later I will slowly start taking the cyclosporin. I tend to get very seedy about an hour after I take the tablets, morning and evening, and vomit. There should be enough time within the hour for the tablets to dissolve into my system, but it is a scary thought that I am not getting enough effect of the anti donor versus host disease drug. I know that the vomiting bouts I get is typical with transplant kids but boy oh boy it is a cruel feeling.

Day 26 My white cell count this morning was 5.03 and my nutrifils were an amazing 3.6. I managed to not vomit today which meant that I could safely say that all my oral medications which included my twice daily dose of cyclosporin has stayed down, yehah. My appetite is slowly returning and due to my ability to not vomit has meant that I can keep some basic food stuffs down as well.

Day 27 My white cell count was 5.37 this morning and my nutrifils were the same. The pain specialists have reduced the Fentanyl PCA to 30 micrograms per mil, because my stomach pain has lessened and now I have been given an oral pain killer to reduce the pain caused by the shingles. There is a difference in the types of pain, my stomach pain caused by the TBI ulcerations requires an opiate based pain killer(Fentanyl) and shingles which is a neurologically caused pain requires a different type of pain killer. I am starting to eat a little better now and am drinking more fluids, which pleases all the staff looking after me. Dad took a few web cam pictures of my room today so soon you will see where I have been living for the past month.

Day 28 My white cell count was 5.36 this morning and nutrifils were unchanged. The fentanyl was reduced again this morning to 20 micrograms. If my pain level remains at what it is, and does not get worse, the Fentanyl pump will be stopped tomorrow. My right elbow was sore yesterday afternoon, this really freaked me out, however I was assured it was nothing to be concerned about. I am back on the three day, routine course of the antibiotic bactrim (a big horse tablet), which is for the lungs. My shingles has spread a little and I am still taking the pain killer gabapentin tablets three times a day. My appetite is slowly improving but I am still feeling nauseous and still vomiting quite frequently. I was given some potassium and magnesium supplements this morning slso - my levels were a little low.

Day 29 My white cell count was 4.63, dropping a little from yesterday, however this is nothing to worry about. Platelets are a huge 162 and Haemaglobin is 101and going up. I have had all but one pump removed. My shingles treatment is still being administered intravenously and is to continue until Sunday. If I don't develop any more shingles spots for the next three days I will be given day release on Sunday to go home for a couple of hours. Then if I continue to go well I will be given full release on Tuesday to complete my forty two day isolation at home.

Day 30 My white cell count this morning was up again at 5.56, my red cells were at 101 and my platelets were at 182, what a score(150 to 450 is the normal range). My specialist said this morning that I may be able to have day release tomorrow and overnight release on Sunday. The plan so far is still to be released from hospital on Tuesday. I had my first full style of meal for dinner last night (frozen meal - beef tortelini) and for lunch yesterday and today it was pasta. I still can't take to orange juice because it is still too acid but the apple juice frozen or cold goes down well. I find that I can tolerate water crackers or rice crackers with vegemite for snacks.

Day 31 I didn't get any blood info today, but then again they are not all that accurate on weekends as I have said before. I was given a few hours release from hospital today, from about 1pm until 5pm. I went home for a couple of hours. It was good to be home again after such a long time away. But I was relieved to be back up at the ward for the night.

Day 32 (September 1st) My white cell count this morning was 4.90, nutrifils were 2.9 and platelets were 200. I was allowed home again today. I had to return to the ward by 7pm for my aciclovir dose.

Day 33 White cell count was 5.32, haemaglobin was 105 and platelets were 226. I was released from hospital this morning but I could not leave until the afternoon because it took the hospital pharmacy all day to gather the drugs required for my treatment at home. I have to take 2 gabapentin tablets, a pain killer for shingles three times a day. 1nifedipine in the mornings to prevent high blood pressure caused by the cyclosporin. 8 cyclosporin tablets twice a day to stop graft versus host disease(rejection). 1 bactrim tablet on Mondays, Wednesdays and Fridays, an antibiotic for the lungs. 2 valaciclovir an antibiotic for the shingles three times a day, and 2 magnesium tablets three times a day. I will be required to go back to hospital clinic every Wednesday for a while, for blood tests to check my cyclosporan levels and general progress of the bone marrow transplant. One thing that will be tested this Wednesday will be a DNA test to make sure my bone marrow is XY chromosome. My marrow should show XY which is male because my marrow transplant came from my brother. From now on my marrow will always, if tested show XY not XX which is female type. My blood when tested will always be mine, which is typed as female. It is confusing.

Day 34 My first day at home in isolation. Tablets, tablets and more tablets, my own bed and and my own bathroom. We spent the day washing and sorting out the clothes I wore in hospital. I was told before I left hospital yesterday that at about six weeks after transplant I will feel very tired for a few weeks and sleep a lot. This is a residual side effect of the Total Body Irradiation I had as preparation for the Bone Marrow Transplant. I have been told that this is one reason why I will probably only make one period per day per week at school in fourth term.

Day 35 (4/9/02) WBC - 7.7
Hb - 120
Platelets - 350
Nutrifils - 5.9 . I had my first visit to day clinic today at 9:00am. I had blood taken, prior to taking the cyclosporin, to check the levels of the drug in my blood were were acceptable - not too high and not too low. The cyclosporin levels were good, however my creatinine levels were too high. The levels were 113 where 110 is the upper limit. I had to be drinking plenty of water in excess of 2 litres, if possible, to keep the creatinine levels down - I did not do this. I had to stay overnight and be hooked back up to the drip to flush my kidneys and to correct the creatinine levels. If I had taken more notice of the fluid intake I may have not had to stay in. It amount of fluid I had to have was not something that I was well aware of.. I have to fill in nutritional charts for all food and liquid intakes for the next seven days and to give to the nutritionists next week.

Day 36 I was released about 10:30 this morning. My creatinin level was 80 and my cyclosporin tablets were reduced to 200mgms per dose. I had been hydrated by drip all night.

Day 37 I had to go back to SCH this morning to have blood taken to check my creatinine and cyclosporin levels.The hospital rang us with the results of my blood test at 1:30 and all is OK. They have reduced my cyclosporin tablet dose to 180mgms. We were informed today by the hospital that the WebCam programme they were trying to set up between my school (so I could join in with one class per day while at home) and home fell throught. There were some problems with Privacy Laws such as other children appearing on the webcam connection, as a result the Catholic Education Office had to reject the inititative. The school, my principal and the hospital staff have been wonderful in their efforts to try and develop a new form of contact for ill children. This program was not just for my benefit it was a pilot to help develop software and a means to make life a little more tolerable for sick kids. Hopefully an alternate method can be devised.

Day 38- 41 . My Aunt and Uncle came on Sunday. It was the first real visit outside the hosptial setting. I had my first baked dinner - I had missed mum's cooking. It was hard eating though - a bit painful - all the food bounced off the walls of my oesophagus - which still is raw from the TBI. Unfortunately I did not keep much of the dinner down. My school is still trying to get some sort of internet contact hooked up for me. I have caught up with a few friends on the phone and have looked at a few things to do with subject choices next year for Year 11. I have a lot to catch up on. I am still spending most of my time just resting on the lounge. I still do not feel fantastic. Tomorrow is clinic for standard check up and bloods. I will find out the results of the chromosome tests as well.

Day 42 I had a routine visit to hospital clinic this morning for full blood counts and general check up by my specialists. My blood counts were all normal and my white count is 7.8. My isolation ends tomorrow but I must only come into contact with small groups of people for the time being. Because my immune system is still low I must stay away from anyone who suspects they are getting sick. My shingles pain killers have been stopped and the shingles antibiotic has been halved. The cyclosporin dose has been reduced to 160mgms per morning and night. My next clinic visit will be next Wednesday morning. My specialist has indicated that I may be able to attend school in fourth term for maybe one period a day or a few half days a week.

Day 43 to Day 51 (September 12th to 20th) I have been plodding along for that passed seven days. I have had good days, bad days and really bad days. On Sunday I had my first outing to Cronulla Plaza to do some shopping. It really tired me out. but I had a great time just being out. Cronulla was a good idea because it is out in the open and there isn't the big crowds of people that you get at Westfield type complexes. I was to go to clinic again on Wednesday 18th but because there were so many patients booked in, my doctors moved my appointment to Thursday the 19th. I ended up going in to the Hospital on Wednesday anyway because my school was presenting the money my Year Ten raised at a School fundraiser. I was asked to go along to have photos taken with some of my friends and Year Ten Co-ordinator and a representative from the Prince of Wales Foundation. They are going to buy more Television and Playstation 2 units for the kids on C2West and more Electronic Ear Thermometers for the nursing staff. I went to clinic in C2North on Thursday 19th to have bloods taken to check all the usual things and creatinin and cyclosporin levels.

On Friday 20th (Day 51) I ended up back in hospital with a low grade temperature at 10:10p.m. The normal procedure is to ring my ward (C2West) and inform them that I had two temperatures of 38 degrees over an hour. The ward then notifies Childrens Casualty department that I am coming in. Dad and I left home at 9:30p.m. and got to casualty in forty minutes. As soon as we arrived I was taken to an isolation room because there is always kids coming in with gastro and other infectious problems. I was told that if I was ever to come in to casualty after transplant that I should wear a mask just incase of infection, because my immune system is still getting back to normal. I managed to get my old isolation room back even though I had been to visit the kids on the ward on Wednesday and Thursday just as a precaution. I was put on three types of antibiotics and bloods were taken for cultures.

Day 52 My Blood counts are all fine and my nutrifils are working on the infection. My specialist said this morning that if the blood cultures do grow they will probably remove my central line, because now that it is not being used can get bacteria in it, and could be the cause of my temperatures. Because I am not officially still in isolation the nurses on afternoon shift let me out of my room to visit with some of the kids I have become friendly with and are in, on treatment at the moment. I am still vomiting at the drop of a hat and this is baffling the doctors even though some of the drugs I am on can cause the vomits.

Day 53 (Sunday 22nd) Nothing has grown as yet from the bloods that were taken late Friday night. It can take up to forty eight hours for bacteria to grow on blood cultures, and that is up at about 11:35 tonight. My specialist wants more blood taken early tomorrow for more cultures because of the low grade temperature I had late on Saturday night. I am still vomiting but not as much today. I have taken a liking to black tea because it is easier to take my medications white sipping it. I wasn't allowed out today, and don't know why. Maybe the different staff on shift have differing ideas. I have to go atleast forty eight hours without a temperature before the doctors will consider releasing me.

Day 54 Much the same as yesterday. No cultures have grown, however my specialist still seems to think that my central line is the cause of infection. I have been scheduled to have it removed first thing Tuesday morning(tomorrow).

Day 55 The anesthetist came to see me at 7:15 this morning to talk about the surgical procedure for removal of the central line. I was due to be done at 9:00am, but just as my nurse was wheeling me out of the ward we were stopped by the chief anesthetist who said that I wasn't being done until after lunch. I was called to go to theatre at 2:00pm and was back from recovery and into my ward at 3:30pm, minus my central line and sporting a canular in my left wrist. How inconvenient compared to a central line. My temperature went up to 37.9 overnight. I am still vomiting up about an hour after I take my tablets.

Day 56 (Wednesday 25th) My temperature was hovering around the 38 mark all morning and then went up to 38.3 after lunch. I am not eating much. The doctors have called for more blood cultures, to try and track down the source of this temperature.

Day 57 Still the same last night and today. Temps of 38.4 at 8:00pm last night and back down during the day to 37.4. My blood cultures have grown nothing yet and my blood test results are all normal. The doctors are now checking for a possible bowel infection, but really don't know the reason behind the phantom low grade temperatures. I have been taken off antibiotics to see if they are causing the temp rise. At 7:00pm this evening my temperature went up to 38 again. Funny thing is I don't feel like I have a temp or feel unwell. Oh well I guess I will be staying in hospital longer than we all anticipated. I had a terrible nights sleep because I vomited a few times and my vitals were taken on the hour. The doctors have ordered stool, urine and more blood samples.

Day 58 I had my drip taken away today and the canular in my left wrist removed. My temperature is still hovering around the 38 mark so three more stool samples were asked for and I do have diarrhea now. I am getting stomach pains so just maybe this is the cause of my low grade temperatures. I really have had enough of this and want to go home.

Day 59 and Day 60 No cultures have grown as yet. My specialist thinks that may be I am suffering from GVHD but still can't rule out a viral infection. I will have visits from the Gastro team on Monday morning to discuss their findings and thoughts on my condition. My temperature hasn't been as high and my vomiting has got less.

Day 61 (Monday September 30th) I have had visits from the Gastro team twice today, to discuss my symptoms. They don't feel that it is necessary, at the moment to do an endoscopy and want to observe my progress over the next couple of days. My nausea, vomiting and diarrhea have all got much less. I had some lunch and a small amount for tea this evening. My valaciclovir was doubled to one gram this afternoon and my cyclosporan dose was increased from 160mgms per dose to 180mgms this evening. Heres hoping the doctors are getting close to an answer. All my blood tests etc are normal. I suppose that is some good news.

Day 62 (October 1st) I had another visit from the Gastro team this morning to check on my progress. The diarrhea has subsided and vomiting is lessening. I went to the Adult hospital to have my eyes checked this morning at the request of the Gastro team. All is OK with my eyes. The eye doctor believes I need glasses, but I already have a pair. I still need to drink atleast two litres of water/liquid a day to keep my kidneys flushed. This is because of the cyclosporin medication. I was adventurous with lunch today and had some herb and cheese pull apart bread, boy did it taste great. My temperature went up to 38.2 later in the evening.

Day 63 Another day in hospital. My temperature actually got down to 36.8 this morning, lets hope that the lower it gets it wont go over the "stay in hospital temps of the high 37's" in the night. I had a better day all round today. I have been up and around and had some more herb bread for lunch, and a first for me was a cappuccino for morning tea.

Day 64 I was released from hospital this morning on a 24 hour day release. My temperature had to be monitored by my parents and if at any time I had two temps of 38 over an hour or one temp of 38.5 I had to go back to my ward. I was to observe normal hospital condition at home and my medication was as per recommended doses by my Registrar. My parents have to report back by phone to the Registrar of my condition first thing Friday/Day 65. If my temps are low enough and my general progress is OK I will be discharged. Over night my temps were taken every four hours by mum or dad and were all between 36.6 and 37.1.

Day 65 My dad rang C2West this morning and gave the Registrar my temp ranges and general progress. I was officially discharged from hospital and don't have to go back until Wednesday next week for a regular Clinic visit. However if my temp does go up and I do have two 38's within an hour or one 38.5, I will have to go back to hospital via the routine channels, which is through Emergency.

Day 66,67,68 and 69 Just plodding along at home nothing to really talk about. Dad took us for a drive through the Royal National Park today. I got carsick - which I am not normally susceptible to. It was a welcome break from being at home. I am still drinking about 1500 to 2000ml. of water etc per day. I am due to clinic tomorrow for the regular check up, blood levels, renal function and cyclosporin levels. I am not eating normally yet. Due to the vomiting I have lost about 10 - 11kg.

Day 70 (October 9th) Clinic day today for the usual stuff. We were in at 08:45 for an 09:00am appointment, had the bloods taken and were driving home at 10:30am. Dad rang the ward at 4:30pm to check my levels just incase I am wanted back in hospital for rehydration. My renal (creatinin) level was 124 and a bit high so I have to drink heaps of water between now and Friday morning when I go back to POW to have my creatinin checked again. If they are not happy with then I might have to spend a few days in again. Here's hoping the water I drink will be sufficient to lower the level. Below 100 would be good.

Day 71Nothing really to talk about. I am drinking heaps of water to flush my kidneys. I actually drank 2600mls.

Day 72 Dad went back to work today after having most of the time off since diagnosis. Mum drove me into POW have blood tests done to check if my creatinin level had dropped. Bloods were all within the normal ranges and my creatinin level was down to 101. No stay in hospital.

Day 73 (October 12th) Doing pretty well today. My family and I were invited to the St George Crows (Sydney Football League) First Grade AFL team annual dinner and presentation evening tonight. I was nominated by the club to receive a memorial award. What a night, it was great. It was also my first big outing since I was released from hospital on the 2nd of September. By the time we left it was 11:30pm and I was stuffed, I really did enjoy myself.

Day 74 and 75 I am feeling a bit stronger and eating a little more each day. I am still drinking heaps of water and cups of tea to keep my kidneys clear. I am due back to clinic on Day 77 (Wednesday 16th of October) for the usual blood tests.

Day 76 and 77 I spent day 76 trying to drink as much water as possible to keep my kidneys working well so my creatinin level would be OK. Day 77 (Wednesday 16th October)clinic day. We were in early to have my blood tests done and were one of the first to see my doctors. All is going well at this stage and my weight was the same as last week. The nutritionists don't want me to lose any more weight. They want me to hold a few kilos in reserve. My doctor wanted me to stay until my levels were back to see what my renal function was like. In the mean time I was interviewed by the local paper because the hospital has just submitted studies and findings on their methods of doing bone marrow transplants. We finally received my blood results, all OK except for the creatinin level, it was 114 and on the high side. My specialist agreed to let me go home instead of perhaps having to have four hours or more of rehydration. Whew that was close. I will have to concentrate on my fluid intake for next week.

Day 78 thru 83 Drinking, drinking and more drinking. My appetite is slowly coming back atlast. Tomorrow, Day 84, Wednesday October 23rd is clinic day again.

Day 84 (Wednesday October 23 2002 - 3 months since transplant.) Clinic day once again. My weight has not varied by more than a few grams over the last three weeks, the doctors and nutritionists are pleased. My bloods are pretty good - Haemaglobin 128, Platelets 192, White cells 6.92 and Nutrifils 6.6 and my Creatinin level was 101. My cyclosporin is being reduced as from today by 20mgms every seven days. They drop from 180mgms to 160mgms today and then 140mgms next Wednesday, and so on. I am slowly gaining more energy but boy does it take a lot out of you doing normal every day things. I can see why my doctors have said that I might not see much of school this year. My specialist is so pleased with my progress that she has put my clinic visits to every two weeks.

Days 85 - 90 I am staying awake all day now and having good sleeps through the night. My energy levels are still pretty low. I was out most of Sunday with family friends. I had a great day but boy was I tired by 6:00pm. I am supposed to go into the POW on Wednesday for some more interviews about the Hospitals release of Bone Marrow Transplant Techniques. I will tell you more about it later. My nose has started to run this morning and we made contact with my District Nurse who recommended I try Dimetap to see if that would help dry it up. We had to report back later in the afternoon on my progress and then on Wednesday morning incase my specialist wanted to see me at clinic, seeing I was coming in for the press release interview.

Day 91 Wednesday October 30 2002) We rang the District Nurse at 8:00am to report on my progress and she had made an appointment to see my specialist while I was in the hospital. We ended up getting into the hospital early just incase the doctors wanted blood tests. Blood tests were ordered as per normal, and my specialist explained that it is important to review transplant patients who are on cyclosporan. This is because the cyclosporin affects the lungs and and I am on Bactrim for the lungs anyway. Swabs or something like that were taken from my nasal passages and the back of my throat to check for infections. If the samples grow cultures within twenty four hours I would be called into hospital immediately for treatment. What a day, I went in for interviews with ABC and Channel Nine Television and neither turned up. The publicity team were not impressed and neither was the Professor who had issued the press release on my type of treatment and condition. My blood results came back and were reasonable. Haemaglobin a bit low at 86, Platelets were over 200 good, White cells were about 3 and OK and my creatinin was 110 and just OK. My specialist said she would ring by 5:00pm if she heard from pathology and if there were any cultures, otherwise they would contact me in the morning if anything grew.

Day 92 No phone calls from the hospital so all must have been OK with the samples taken yesterday morning. Just a cold in the head? I went to school today to have lunch with my friends. It was very weird. I was swamped by everyone. My friends still treat me as normal but everyone else is a little overbearing. It was nice to see everyone, but good to go home.

Day 93 - 97 Nothing much to report. Just plodding along feeling a little better each day and doing a little more each day. I have been dress shopping for my end of year, Year 10 Formal. I have two complete outfits, two pairs of shoes and two hand bags to choose from.

Day 98 (Wednesday November 6 2002) Clinic Day again. The usual blood tests early then wait for my specialist to see me. I caught up with some of the friends I have made while on treatment. It was good to see them all. My levels were OK and my specialist has reduced my cyclosporin dose again. My dose for the next seven days to 120mgms twice a day. My clinic visits are every two weeks for now and next week my cyclosporin reduces to 100mgms twice a day, for the next seven days. Next clinic visit is scheduled for Wednesday November 20.

Day 99 - 105 Nothing much to report. I was not well enough to sit for my School Certificate Exams yesterday and today. I can be granted exemptions by the Board of Studies and my teachers have informed them that this is what I would like to apply for.

Day 106 (Wednesday November 13 2002) I managed to make it to school today to visit my friends at morning tea break and was asked if I was feeling well enough to stay for the two period lessons and for lunch. I enjoy catching up with my friends. I can understand why my doctors said I probably will not make it to school much for the rest of the year. I was exhausted after lunch. I spent the rest f the after noon at home resting.

Day 113 (Wednesday November 20 2002) Clinic visit time again. Over the last seven days I have been able to do a little more each day, but I still can overdo it quite easily. My blood levels were pretty good today. Haemaglobin has gone up a bit from last time and was 91, white cell count 4.3, platelets 292 and creatinin was a great low at 77. My specialist is really pleased with my progress and has put me on to three weekly visits. My cyclosporin has dropped to 80mgm doses for the next seven days and then down another twenty milligrams. My Formal is coming up on the 3rd of December and I have still to decide on what dress I will wear. I am not going in the usual limo, like most of my friends, I am going in one of my dads Bushfire Tankers. He's the Captain of Engadine Volunteer Bushfire Brigade.

Day 120 I went to my year 10 Graduation Mass last night at St John Bosco Church. What a night, it was great, we were all presented with our School Certificates by our Principal and Year 10 Co-ordinator. I have felt well enough over the last few days to attend dance tuition at my College. This is so we can be a little more prepared for the big night next Tuesday. My cyclosporin has dropped to 60mgms per dose twice a day for the next seven days.

Day 126 (Tuesday December 3rd 2002) My Year 10 High School Formal. What a night ! I had a fantastic time. My friend Narelle and me were picked up in one of Engadine's Rural Fire Service Trucks. We had to use a small step ladder to get in and out because it was so far off the ground. There were hundreds of people waiting at the entrance to the Sutherland Entertainment Centre waiting to see their daughters, sons, friends arrive. There were limo's and hot rods of all descriptions, but only the one fire truck. Everyone clapped when my dad opened the door for us, and as he got out the ladder for us to alight. We were both very nervous with all these onlookers. But what a thrill to make it to my Formal like this. I chose the black skirt and dark blue beaded top after many times of modelling the two outfits to friends neighbours and relatives. We had been out all morning shopping, when we arrived home, and to my surprise my Nan and Pa and aunt Veronica were sitting on the front verandah waiting for us. They had driven for three hours to see me off to my formal dinner and dance. There were twenty one people turn up to our house to watch the performance of the face make up (Sonya did a fantastic job) and the donning of the dress. Plenty of photos were taken and as soon as dad can scan them in you can see some on the link page. I went to an after party and didn't get home 'til 10:30 the next morning. I didn't over do it. I promise.

Day 141 (Wednesday December 18th 2002) It has been one month since my last clinic visit and all was OK. My Haemaglobin was 103, White Blood Count 5.65, Platelets 292 and Creatinin 60. I have been taken off Cyclosporin so the only medication I am on is Bactrim. I have a rash on my upper back which has puzzled the doctors and have to treat with a cream until next Monday when I have to go back to see if the cream helps (maybe just a fungal growth). If the cream does not help then the thoughts are that the rash might be a form of Graft Versus Host Disease. The treatment for that is steroid cream, but we will find out next week, so stay tuned.

Day 146 Back to clinic this afternoon to see what my specialist thinks of my rash. The rash has not spread and appears to be improving slightly. My doctor wants to see me again on January 7th to see how the rash is by then. If anything it may be a form of skin irritation, rather than GVHD. Check out the photos from my formal, on my link page.

Day 161 (Tuesday January 7th 2003) Back to clinic this afternoon. My rash is all but gone, and I will probably come off bactrim after my next visit on January 29th. My specialist and one of her fellows are very pleased with my progress. My blood tests were all normal, and very similar to my last results. I finally received my School Certificate results on New Years Eve, and took them with me to show my doctors,they were both impressed. My results were very pleasing( two band sixes, two band fives and a band 4). One of my Christmas presents (from my girlfriend ) was a 5 day course with the famous June Dally Watkins school. I started the course yesterday with two of my friends I have known all my life. Even though I missed half of todays lessons because of my clinic appointment, Miss Watkins has allowed me do a make up of this section of the course next Tuesday. I didn't mention this before because it was a secret but I am allowed to take short trips within Australia. We decided to go for a five day holiday and picked Tasmania.

Day 169 (Wednesday January 15th 2003) We flew to Hobart for a five day stay. Photos will be put on my link page when we get them developed. We went for a stroll down to the dock area this afternoon. We saw where the Sydney to Hobart Yachts moore at Constitution Dock and took and Old English Double decker bus tour of Hobart. What a place The houses are magnificent around Sandy Bay And Battery Point (thats where Wrest Point Casino is). After the bus trip we went a a harbour cruise. Later and just in time for the after lunch session we managed to get a couple of hours of the Pura Cup (cricket - Tasmania and Victoria) at Belerive Oval. Thursday we went to Richmond to see the oldest in use bridge ( built by convicts) in Australia. We also did a tour of the Cadbury chocolate factory. Friday we went to Port Authur. What a place!I loved it. All those convict buildings. Saturday morning the family went to the famous Salamanca Markets down near Pier One we had a ball. Sunday January 19th 2003 we flew home. But We WILL BE BACK.

Day 183 (Wednesday January 29th 2003) Dad flew out to America today. His work asked him to go to Santa Barbara and then Minneapolis to inspect some electronic kits that Qantas is buying to upgrade their 747-300 Jumbos. I was very apprehensive about clinic today. I am always aprehensive about clinic but I was moreso today because my right elbow was sore. This was one of my original symptoms of my illness so I freaked out. This is always in the back of my mind. What if? X-rays of my elbow were carried out and my specialist even had a look at my blood sample through a microscope. All was OK.

I went back to School (Year Eleven) today,Thursday 30th Janurary. It was good to get back to my friends but odd at the same time. Everyone had moved on and got on with their lives - there are new cliques, new people whreas I have stayed the same. Being back at school will have some getting used to. The subjects I am doing are Mathematics, English Advanced, English Extension 1,Studies of Religion, Chemistry, Biology, Modern History and Ancient History.

Dad's first port of call was Santa Barbara, which about a half hour flight north of Los Angeles. He said the weather there was perfect for winter. The temperature during the day was about 26 degrees Celsius and at night it got down to about 10 degrees. It was one of the warmest winters on record. Dad then flew to Minneapolis, Minnesota which borders onto Canada. It was snowing there and the temperature got as low as minus 18 Celsius and the max. was about minus 6. He was almost snowed in on the day he left to come home.

School is taking some getting used to. I am not used to full days and it is going to take some time to work my way back up.

Day 211or seven months since transplant (Wednesday February 26th 2003) I think I will just go by months from now on. My Clinic visit was a good one. My blood tests were all normal. My next clinic visit is scheduled for Wednesday March 26th 2003. I have an appointment to see an Eye Specialist at POW (his local offices) on Wednesday March 19th 2003. I have glasses and feel that my prescription may need to be altered. TBI (Total Body Irradiation) can affect your eyesight and can cause cataracts, (in a high percentage of cases) but historically only 10% of those affected require follow up treatment.

I am now on track with my subjects. I had a meeting with the school. I was able to drop a subject because I am doing Extension English. This gave me a total of 14 units instead of the required 12. I had a long think over the weekend and decided to drop Modern History. The workload is just too much, and I am not handling it as well as I thought would. I will probably do Pathways for Year 12 - do the HSC over 2 years.

Friday 14th March 2003 I have added a photo of my dad and one of his work colleagues (Gavin), check out the hair or lack there of. Gavin raised over $3250 for the Cancer Foundation and had his head shaved at work. Mum shaved dads head this morning at home. Look what both of them did after dinner at work.

Wednesday 19th March 2003 Eye check up day. My eyesight is pretty good at the moment and the specialist is happy with my eyes. He says that if I am going to get cataracts from the TBI he does not think it would occur any earlier than about ten years from when I had it. He seems to think that with my family background of glasses that I would probably need them anyway.

I had a bit of an upset at school this week because one of my friends brothers has been diagnosed with chicken pox. The school was notified straight away and my parents were contacted soon after. We made contact with my specialist on Thursday 20th to find out what I had to do, because my friend had not had it either. However she was vaccinated that afternoon. Just incase I was to break contact with her socially for five weeks and not to sit next to her at school for the same amount of time. This didn't seem to go over too well with some people and I tried to explain that it was up to me to keep my distance.

Wednesday 26th March 2003 (almost eight months since transplant) I went to clinic today for my monthly visit today and my bloods were normal. HB 125, Platelets 309 and White Cells 6.33. I managed to catch up with some of the nurses and staff who were around while I was on treatment, it is always great to catch up with them and have a chat. My next clinic visit isn't until April 30th.

Nothing seems to have come of the chicken pox in my school. No more cases seem to have been reported, so lets keep our fingers crossed.

Wednesday 30th April 2003 (nine months since transplant) Clinic. Blood tests were normal.
WBC- 6.09.
Hb- 132
Platelets- 310

I did not do much over the Easter Holidays - just the usual - the Easter Show, movies, catching up with family. I visited my grandparents in Queanbeyan. We took my car (1993 Ford Laser) which gave me a chance to have a go at 'freeway driving' - it is very nerve wracking driving with all the traffic. My aunt and uncle bought me personalized number plates for my car - now it really stands out - SHI 10H.

Wednesday 28th May 2003 (ten months since transplant) I have been off school since last Tuesday with an upper respiratory tract infection. Clinic day and I am feeling better but a bit concerned that things are not right.My blood counts were all good. White Blood Cells were below 6 - phew. I have missed some assessments at school due to my time off - hopefully I will catch up. The doctors were really pleased that I handled the upper respiratory tract infection without intervention. I don't have to go back to clinic until the end of July, which will be twelve months since transplant. Before then I have to have some tests to compare with the pre - transplant base lines. I will need an echocardiogram, a renal function check and lung functions.I have also been told it might be time to begin my revaccination.As a result of the treatment associated with the bone marrow transplant the inoculations I received as an infant were and destroyed resulting in no immunity to diseases such as measles, rubella and whooping cough. Then, if all goes well, I will be on three monthly visits. That is going to be really hard to get used to. It is difficult having the longer periods between visits to the hospital -you miss the sphere of safety.

Wednesday 18th June 2003 (ten and one half months since transplant) I had an appointment today for the first of my comparison tests, which was a heart ultra sound, to see if my heart was up to me doing a stress test. My heart is okay. The stress test is scheduled for the 9th July. Just as well the appointment was today because I have a bad cough and am a bit phlegmy. Dad went to clinic and my doctors wanted to review my condition. The cardiologist suggested that I have a chest X-Ray just to see what this cough was. My lungs were clear, however I was put on antibiotics and I have to go to my GP on Friday as a follow up. If I get worse I am to go back to my GP next Tuesday.

I got over the cold. I ended up having to have ten days off school to completely recover.

Wednesday 9th July 2003 (Eleven and a bit months since transplant) I had a stress test and an ECG done today. The energy definately has to be saved for it. The stress test was very much hard work. The cardiologist was happy with my performance.The results would be forwarded to the oncologist ready for my twelve month clinic visit in a few weeks. I am due back to have a major blood test to determine the extent of recovery of my immune system and a renal function and respiratory function next Wednesday.

Wednesday 16th July 2003 ( Eleven and a half months since transplant) Renal and lung functions were carried out with no problems. However I have to come back next Monday, to do the blood tests. One of my family members will give blood and act as a control for my blood to be compared to. This will most likely be Dad. One of the samples will be forwarded to Westmead Hospital for testing, and this only done on Mondays, Wednesdays and Fridays. This sample has to be taken prior to 9am so it can make it to Westmead Hospital before midday.

Wednesday 30th July 2003 (one day short of twelve months since transplant) Clinic visit time again. It sure has been a lot of visits to hospital in the passed twelve months, but it has gone fast all the same. Most of the results of the recent tests had come back and most are pretty normal. My renal function flow rates were down, but not too bad and will be tested again later. My lung function was lower than the test done before transplant, but again will be tested again at a later date. My immune system tests were still a little low, which is to be expected and should come up with time, and again tests will be done at a later date to check the levels for normality. Once my immune system gets back to normal I will be immunized to give back all those anti-bodies destroyed by the chemotherapy and Total Body Irradiation. Overall my specialist was very pleased with my progress and the usual blood tests were all normal. My next clinic visit isn't for three months (October 29th).

Wednesday 29th October 2003 (455 days since transplant) Clinic visit time. I have had a bit of a cold but nothing to really talk about. My bloods were OK, White cell count 10.82, neutrophils 8.2, Platelets 394 and Red cells 141. I was a bit concerned about the white cells but my specialist and everyone else I spoke to said my counts were fine, they are still within the normal range. Next visit is at end of January 2004. I had to see a Gynecologist because my estrogen levels are pretty low, which is because of the TBI and Chemo treatment. Hopefully medication will sort that out. I don't have to go back to the gynecologist for another three months, so I hope we can organise the appointments to fall on the same day in January or early February.

I started year twelve this term and have started Pathways (I can do the HSC subjects over two years) which will be far less stressful for me. I am doing six units this time round, three subjects and will do the other three subjects next time round.

I went for my P plates (provisional drivers license) on Thursday 30th and YES, I am now one of those RED P plate drivers.

Wednesday 21st January 2004 (539 days, almost 18 months since transplant) Back to clinic. My bloods were all fine HB 138, White Blood Cells 7.4, Platelets 353 and Neutrophils 4.8. My Gynecologists visit was to be the 19th February but has peen put back to the 30th March. We spoke with a few of the nurses, hospital staff and other patients we haven't seen for many months, it is always good to catch up. My specialist is very happy with my progress and will organise a date at my next visit, the 14th of April, to retest my immune levels, because the end of July will be two years since transplant.

A new year, Christmas is over for another twelve months and back to school next week, for the second term of year twelve. The half yearly Exams are scheduled for the end of second term in late March. My class timetable for the three subjects I am taking allows me quite a bit of study time each day. I find I need to use all of this time because my concentration is still out whack. I also have more time now to go to my math tutor, which seems to be a must now, after the TBI.

The big head shavathon is coming up in March. I will be able to update the photos, in my gallery of dad and his work mates, who are doing fund raising for the Cancer Foundation.

The head shave went well - dad and three of his work mates had their heads shaved and two others coloured their hair. They managed to raise about $3500. The pictures are coming.

Wednesday 14th April 2004 (21 months since transplant) Clinic went well. White Blood Cells 9.00, Haemaglobin 137, Platelets 355 and Neutrophils 5.6. I will be having the Immune system blood tests around about the middle of June, which will hopefully have the results available at my July clinic visit. My specialists also want me to have my renal functions checked some time in July.

Dad went to New Zealand to work for all of May and the first two weeks of June. His company flew us over for a short stay with him in Auckland from June 3rd to June 7th. We all had a great time visiting Rotarua, Matamata (where Lord of The Rings was filmed) and Waitomo Glow Worm Caves.

Wednesday 7th July 2004 (3 weeks short of 2 years since transplant - July 31 2002) I couldn't have my bloods taken for the immune levels until 29th of June and then they have to go to Westmead Hospital for testing. My blood tests today were all OK, White Blood Cells 9.1, Haemaglobin 137, Platelets 412 and Neutrophils 6. Only some of the results from the tests on June 29th were back and some of the levels were back to normal. My renal function tests are booked for Monday July 12th.

Wednesday 9th February 2005 - I have not forgotten about the web site updates - I have been very much occupied by my school studies. I had clinic today which went well.
WBC - 9.1
Hb - 132
Platelets - 350
Neutraphils - 5.1

Last November it was decided for me to begin the process of being reimmunised. The effectiveness of the childhood vaccines I had when I was younger was destroyed during the process of the bone marrow transplant. I have since recieved inoculations for menigaccocal, diptheria/tetnus, HIB, Hepititis B and the inactivated poliomyelitis vaccine. More tests will be carried later on in the year to determine if my immune system is fully fit to recieve the remaining 'live virus' vaccines.

HSC RESULTS - At the end of last year I recieved the results of the first half of my Higher School Certificate Results. I did really well achieving in all four subjects.
Studies of Religion 1 - 46 - Band 6
English Advanced - 85 - Band 5
English Extension 1 - 40 - Band 5
Mathematics - 77 - Band 4
I am thrilled by these results. The Band 6 in Studies of Religion 1 earned me a place on the NSW HSC Merit List. An awards assembly was held to celebrate our a Year 12 students achievements, which was attended by the Honourable Marie Bashir . There are photos of the awards ceremony in the Gallery. This year I begin round two of the Higher School Certificate with Chemistry, Biology and Ancient History.

I also attended my Year 12 Formal which was held at Doltone House at Sylvania on the 26th November 2004.. It was a great night (even with our parents in attendance) - see Gallery

Sunday 1st January 2006 - A long time has lapsed since this web page was last updated. I am having an earned break after comleting the second and final half of my Higher School Certificate. I was originally reluctant to complete the HSC through the Pathways Scheme, however, I could not have done it any other way. The 2005 HSC results were recieved in mid - December, as were the UAI's. These results definately made the hard work over the two years worth it.
Ancient History - 95 - Band 6
Biology - 92 - Band 6
Chemistry - 84 - Band 5