CONNOR'S UPDATE PAGE Connor and new brother Harry July 2006 Picture Page 1  2  3  4           Connor's Make A Wish Article Updates July 2006 Hi just a quick update on Connor. To start Connors MRI was all clear and he had his six years since diagnosis in April. Connor is now in grade 3 and doing really well at school, he has no troubles with any of the work. He is playing soccer which he loves and swimming training 3 nights a week and races 1 night. He loves the racing because he is so competitive. Connor and Riley became brothers again in May to Harry which they love. Its abit of a culture shock to us being a 6 year gap, but it is good to have the time to enjoy Harry after kind of not having the time with Riley because Connor was sick. have included some photos of the boys with Harry. When he was born he was exactly like Riley,but now at 8 weeks he looks more like Connor just fair like Riley. bye for now JoI Aug 2005    Just returned from Brisbane with yet another clear MRI, thank goodness. Having his tonsils out made a big difference to him coming out of his anesthetic, he didnt cough and have a sore throat like he used to which was good. Connor is doing really well at school, he is quite the whiz at maths even though he is only 6. Some sums we throw at him he can work out faster than we can.    He is really active and loves soccor. Moving out to the land was the best thing for him I think with his balance, because he is out side running around or riding his bike or climbing something his balance seems to have really improved. June 06, 2005 Hi sorry its taken me so long to update, our computer broke and we only just bought a new one.     Well a lot has happened in the last few months. We went to Brisbane in February for Connors MRI which was all clear, but while under he obstructed because his tonsils were so big, his airway blocked and he stopped breathing. When they were bringing him out of the GA they couldnt get his saturation levels above 88. We had to see an ENT before we could go home and his tonsils had to come out before he had another MRI. We always knew his tonsils would have to come out at some stage because they were so big and he had really bad sleep apnia, were he would stop breathing through the night and would wake himself up and start breathing, but he was never getting a good night sleep because he would never get in to a deep sleep because of the apnia and as a result was always quite tired even after sleeping 14 hours.    We came home to Bowen and three weeks later went back to Brisbane and Connor had his tonsils taken out with out any dramas. He no longer snores and wakes up so much more refreshed because he is having deep sleep without interuption. The only drama was while we were in Brisbane we were staying at Angela and Davids and we were going back over to Sharyn and Brendans and for some reason Connor wanted to stay at Angelas and come over the next day so Paul, Riley and I headed over to Sharyns and we were driving along the Motor way which is four lanes and we were in the left lane when a semi truck in the lane beside us cut over and crashed into the back passenger side of our car, because he was so high up he didnt even see us and when he hit us he thought the bang was a blow out and kept coming across and sent us into a spin we spun a few times and actually ended up infront of the truck side ways he hit the drivers side and pushed us along then we flew across two more lanes crashing into the guard rails and spinning finally coming to a stand still facing the way we were going just 4 lanes over. Luckily no other car got tangled up in it, how I dont know because it was really busy. Luckily we were all fine, I got whiplashed quite badly, but compared to what could have happened we were so lucky. Our poor car didnt come of quite so lucky it was a total write off. But luckily it was fully insured. The driver that was infront off us just happened to look in his mirror just as it happened and witnessed the whole thing. He couldnt believe we all walked away he thought he had just witnessed a fatality. Our car which was a mazda 626 held together so well and we believed saved our lives. So we went in 2 days later and brought a brand new mazda 6. As for the truck driver he said we were in his blind spot and he didnt even see us and when he hit thought the bang was a blow out. Im never driving deside a truck again. Very scarey experience to think you are going to die. Its always been my worst nightmare to be in a car crash and at the time all I could think off was we are going to die and Rileys in the car. On a happier note Connor is doing really well at school one of the top of his class in reading and maths. It is marble season at school so he takes his mables to school each day and comes home with considerably less but each day is sure today is the day hes going to win heaps he makes me laugh, he is so confident at everything he does. Our next MRI is in August. Aug 2004 Hi everyone, a quick update to let you all know that Connors MRI came back clear yet again. He had his eyes and ears tested and they are both fine. Connor is in grade 1 and enjoying school he doesnt get as tired anymore. He is doing really well and his teacher said he is excelling in his maths and reading. Being left handed his writing isnt the neatest and he occasionally writes from right to left but that is common in left handers apparently. He had his school sports day the other week and was very proud of himself when he beat 3 boys in the 80mts. He thought he would come last, he then was very disappointed when they werent doing more races only ball games. This time down to Brisbane Connor played with his new cousin Hannah for the first time. He now has 7 girl cousins he wants some boys. bye for now Jo Jan 2004 Its been a long time since I last updated Connor's site, in that time we have been to Brisbane twice for MRI'S and both times they have come back with the all clear. Connor started school about a month ago and is really enjoying himself, he says he really misses us and it's a long time but he has some really good little mates and loves playing. He continues to grow about 2cms each time we go down. He had his kidneys, heart, hearing tested this time down. Every thing came back fine except his hearing, it showed that his right ear was slightly down. They said that it didn't matter to much at the moment as his left ear was fine, but we are seeing an ENT specialist in April to get it checked out.Thats about all for now will update again in April bye for now jo 07/31/03 Just a quick update to let everyone know that Connors MRI came back with the all clear which was great. We have our next MRI in October and if that comes back clear we go out to every 6 months then, which will be better as he goes of to school next year and we will be able to arrannge them in school holidays so he doesnt miss to much school. Connor continues to grow he is 115cms tall now and 23.5 kg heavy. Which puts him in the top 90 percentile for his age not bad for someone who has been radiated twice. As for his weight he is very heavy for someone that is as fussy as he is when it comes to eating, will only eat certain things. bye for now Jo 06/15/03 Hi thought I would update connors site with a little more detail. Connor started preschool this year and is handling it really well. I was a little hesitant to send him this year, but he loves it. He goes 5 half days a week. He is still doing little athletics and as he gets older the balance issue seems to get more evident, in that he is very noticably slower than kids his age, there are a few that are slow but most are alot faster. Every day at preschool they do an activity course and Connor is alot slower getting through the activities that require alot of balance. We work on these things and although it is only a miner thing in the big scheme of things it will matter to him when he gets a little older and at school, no body wants there kids to be teased and given a hard time at school. Kids can be pretty cruel. Connor does swimming lessons which he is really good at and really enjoys. One thing about starting preschool is he has caught every bug that goes around he has had the cold 4 times this year already. To help with Connors balance he went to a pediatrist because his feet are very flat, they made him up some orthodics to go in his shoes which put him in a better position. Last time down Connors dr said his results were great and very incouraging that if the tumour was going to come back it normally comes back quickly so the longer it stays away the better his chances look of it not coming back. I probably shouldnt say this incase i jinx him. We recently sold our house, Just before Connor relapsed we brought a new place on 5 acres but decided to stay in the old house when he relapsed then when he was fine we just never got round to putting our house on the market finally we did and 2 weeks later it sold for what we wanted so we had to pack up 9 years worth of junk and 2 kids and shift wasnt that fun. The move has been great the kids ride there bikes all day every day, run around play football it is probably really good for Connor. Riley has a pony he drove me made annoying me every time I went riding on my Horses that finally i got him a pony. A few more months and Connor will be 5. will update again when we come back from Brisbane his MRI is due on the 16th July April 30th 2003 Quick update to let every one know that Connor just had another MRI and the results came back clear. It has been 3 years now since he was diagnosed. This day 3 years ago he started his first day of chemo. Boy time has flown. Connors doctors are really happy with his progress and they are talking of pushing his scans out to 6 monthly now which will be good now that he is going to pre school as he misses a week every time we fly down. He also had 5 teeth capped because he grinds his teeth so badly. Feb 1 2003 Sorry I haven't written an update for so long. I will fill every one in on what has happened in the last 6 months. Connor had a MRI back in October which came back clear. Then just before christmas he got a cold and was a little lousy for about 2 weeks. The day before christmas he was sick and wasn't eating. Then the day before new year he said he had a sore neck and when I felt his neck he had a great big lump in the gland, I rang the doctor straight away and he said to come straight in and he had a look at him. He rang Helen his oncologist and told her that he had a lump 5cms by 2cms that no other gland was up it wasn't tender to touch and that it didn't feel like a normal infection lump to him. Helen said not to panic and to treat it as a infection at this stage. So he had antibiotics and the lump went away thank god we were panicking. Dr Mallett said he had never seen any thing like it and he would have bet his house it wasn't just a swollen gland from infection. So with that little scare over we headed back to Brisbane for our next MRI and dentist appointment Connor grinds his teeth he must do it in his sleep because ive never heard him do it, he did it all the time after he had his operation and when he had his chemo but I haven't heard him do it since, but obviously he does. He has ground his molars back so much he has worn the enamel off them and they have to get crowns put on them because they have to last till he is 12. So that will be done next time down in April. Connor had his MRI and that came back clear again. Connor weighed 21.5kg and was 109cms He continues to grow about 2cms each trip down. If his growing slows or stops they will do blood tests and we will see a endocrinologist. But for now he is going well. Connor starts preschool on Monday and is looking forward to that. 08/01/2002 Hi! We have just come back from Brisbane after Connors 3 monthly MRI, and every thing is clear. Helen, Connors' oncologist, said that there is no sign of anything on the brain, and the only sign on the spine is that you can see he has had radiation on it - but no sign of any tumours. I try not to get to carried away about the results, but at the same time it is really amazing. Connor started Little Athletics and loves it although he doesn't like to get beaten. He came second in the long jump and I asked him to guess what he came. I said second, and he got this excited look, I said again second and half way through saying it, I frowned and Connor said not first. I said no second and all the other kids were behind you. Then he was ok with the fact that he hadn't won, because he had beaten the rest of them. I don't know how he will go when he starts running and gets beaten, he probably wont want to do it anymore - he loves to win. Mum came along with us, and Connor was saying to her how he was going to beat all the other kids, and do you think I will be the fastest nana, and mum was saying, it doesn't matter as long as you have fun. Connor would say, but do you think I will be the fastest? I think I will be the fastest! Connor is right into super heroes at the moment and lives in his superman suit. He wears it night and day - lucky he has two, so I get a chance to wash them. He loves Superman, Batman, Spiderman and Wonderwomen - who he sometimes call wonderful girl. This time down he weighed 20.5 kg's and was 105 cm's tall Our next trip down is in October a week before his 4th birthday. Time is going so fast! I have decided not to send him to preschool next year, but in 2004 when he is 5. We will be out to 6 monthly scans then, which will be less distraction and I don't think he would handle 5 full days a week. He still needs sleeps through the day, and he sleeps for at least 2 hours. Well bye for now JO 04/27/02 Hi everyone, We headed down to Brisbane again on the 8th of May for another MRI and the results were good. Dr Irving said there was no sign of tumour new or residual which is really pleasing. We stayed for a week and then headed home. Connor and Riley meet there new cousin for the first time, Emily, who was 5 days old when we got there. They were a little scared by the size of her at first, but then Riley did his usual I want to nurse her act. They enjoyed staying with Jessica their other cousin who is 7 months old now and crawling everywhere. Riley celebrated his 2nd birthday while we were there. It is hard to believe 2 years ago this nightmare just started. Connor had his nose out of joint a little by the fact that Riley was getting all the presents and he wasn't getting any. Connor knew I had brought Riley the Bob the builder figurines, which he decided he wanted the night before Riley's birthday. I heard them in the room playing and Connor asked Riley "can I share your presents?" and Riley said "yeh", then he said "can I help you open your presents?" and Riley said "yeh", then he pushed a little further and said "can I have spud and Wendy?" and Riley having no idea what he was talking about said "yeh". Connor is to smart for his own good and poor Riley is to naive for his own good. That is about all that is going on Connor had put on 2 kg and grown 3cms since the last trip down which is good. We caught up with a few friends while we were down. One young boy that we shared a room with when Connor was in for cycle 3, Harrison. He had finished his 2 years of chemo which is standard for leukaemia kids, he had a blood test on the Wednesday before Easter and everything was clear, then Easter weekend they had gone in to get antibiotics and came home with the news that the leukaemia was back in the eye, testes, marrow and blood - the four places you can get in apparently. They now face the prospect of more chemo and a bone marrow transplant. Shirley was saying how they now go from a 75% survival rate to 50%, she said I know that's alot better than Connor but she has just been in a complete daze. She said you think when you are first diagnosed it's the worst thing in the world but she said when you relapse its 10 times worse. Jo 22nd of January Hi its been a while since I updated Connors page. We have just returned from Brisbane Connor had his routine MRI and it has come with no trace of tumour in his spine. The doctors can not believe and neither can we. They did the radiation as purely palative and not to cure. They made that very clear that it was to buy a little time, because the tumours were in the base of his spine on the nerves, which control the use of the legs, bowel and bladder. Connor had his MRI on wednesday the 16th and they wanted to have an xray meeting with all the oncologist and radiologist to really study the scans and compare them to the October ones so they could see if there was progression. I didnt see the oncologist till Monday the 21st to get the results. When I went in she said your not going to believe it but they are clear she said they pushed the radiologist to find something and he couldnt she said they cant believe it. She said she doesnt know of a case were there has been relapse in the spine and the tumour completely going. They made it quite clear that the tumour wouldnt go away with radiation because they were radiating bulk tumour not resected. Connor has been taken of the palative list. Its hard to believe that we were told he was terminal 3 months ago and they didnt know how long he had to live and now they say he is tumour free. No sign of tumour in the brain or spine. I still cant believe it, its like im dreaming. The doctor said its very incouraging that it has responded because of any new spots appear they can also be radiated because be only opted for localised. well i will go and play with the boys now we go for and other MRI in 3 months they changed that back to 3 months instead of 2 so next trip down is Rileys 2nd Birthday its hard to believe we have been living this nightmare for two years now, at least it will be sweet dreams tonight bye for now Jo 11/20/01 HI EVERY ONE Connor is going really well now with radiation. After speaking to the doctor the other week the horrible technician was taken of the machine and we havent seen her since. They put a really nice fellow on it, his name is Eugene he's really nice and talks to connor about cars and trucks. Connor now walks in the room climbs on the bed himself he then cries when i walk out of the room, but by the time i get out the door he has stopped,then he lays there for the 30 secs and then its over. They give him stickers and talk to him which makes it alot more pleasant. Only 6 to go now then we go home. We have been invited to the Brisbane make a wish christmas party so we will stay the extra 3 days and go to that. Connor cant wait to get home and see dad. 11/10/01 Hi all Thought I would update you on how Connor is going. He has recieved 6 doses of radiation so far. He is handling it okay, other than the fact that he cries the whole time, which i am working on. I have tried rewards, bribes everything I can think of. He is laying still and doesn't move his hips which is were the beems are going in, but he is moving his upper body a bit because he is crying out to me. He hasn't had any side effects, and I have not been gving him any anti nausea medicine. Today was the first day that he has had a soft pooh. The doc said it would give him diarrhoea, because of the spray going to the bowel. Paul has returned to Bowen, to go back to work, and we will fly home in 3 weeks when his treatment finishes. It is amazing that no matter where you go, there is always one horrible person that you have to deal with. Ours is at radiation and she is a cow. She insists that she knows best when it comes to Connor laying still. I was taking him in and putting him on the table, holding his hand and just keeping him calm, by explaining things to him - he was fine for the first treatment. When he had his second treatment she said "I think you should stay out, he will get used to it." Well he sceamed and screamed and it took 15 mins to do the treatment as apposed to 5 mins, and he has cried for each treatment since. He sees her coming up the hall and he hides. He calls her the horrible nurse that grumps at me. She says "Come on don't be stupid!" to him. As if a 3 year old that has gone through what he has, is going to respond to being bullied. The other day she made this big fuss about a surprise she had for him and how he had to be a good boy. Then he cried and she started saying "come on you won't get your surprise." Then she turned around and said "You are being silly you are not getting your surprise now." I was furious. When we got in the car to come home Connor said "Why didn't I get my present?" and I told him "don't worry it was just a stupid teddy bear, you wouldn't have liked it anyway". Which is not the best motherly thing to say, and under normal circumstances I wouldn't, but when you are dealing with kids like this you just don't do that. Friday when I saw the doctor I complained about her and told them I don't want her working on Connor. I honestly feel like telling her to get lost every time I see her. She keeps insisting he will get used to it. Big deal I don't care if he gets used to it or not. I would stand in there with him if they would let me. People like that they have no idea. We have 14 treatments left which will take us up to the start of December, then we will go home. We will come back down in January for an MRI, if there is progression then we stop all scans. If there is no evidence of growth they will keep scanning to keep an eye on it and wait for it to pop up again. Once it makes its way back to the brain, they will also stop scanning. We are just hoping we get at least another year. While we were in outpatient the other day, Stephanie a little girl with a brain tumour, that was on the same protocol as Connor (she was a week behind Connor with her treatment), was there. I was talking to her mother and her tumour had re-occured in her spine back in July, and they had had the radiation and gone home. This time down it was all through her brain. They were taking her home to die, her mother was so distressed she said to me that she could'nt bare to look at her. It is just our worst nightmare to here those words. It is worse than when you are first diagnosed because at least then there is hope. Once they say re-occurance there is not much hope. You just hope for as much time as you can. It is also so easy to talk about quality not quantity, but when you are told there is nothing we can do, you keep thinking of different things, then have to stop yourself and say quality quality. When really all you want is quantity quantity! Bye for now Jo 10/26/01 Hello eveyone, We saw our oncologist yesterday and the news is that there is no sign of malignant cells in his spinal fluid. Which is a good thing. After he had the spinal tap on Tuesday he was fine, then on Wednesday he kept complaining of a bad headache. Then on Thursday morning he woke up and complained of a head ache, and started vomiting everywhere. We were over at Angela and Davids', as Angie was going to look after the kids while we went to the doctors. We decided we had better take him with us, so we drove back to Sharyn and Brendans'. Connor vomited the whole way over in the car. When we got there we put him to bed and he went straight to sleep, so Paul ended up staying home with him and I went and visited the doctor. She said the vomiting and headache are from the spinal tap and that he may have to come in and spend the night in hospital, which we didn't end up doing. We gave him pain stop and lots of fluids which helped him. Anyway on the the news from the Doctor, finally we saw our regular doctor Helen and the news is that this tumour will not kill him, as down in the base of the spine it does not impede any vital organs, like it does if the tumour is in the brain. The tumour has to go back to the brain first. They are not going to do chemo, as they do not feel that it would be in Connors best interest to do so. He recieved the strongest dose of chemo that he could, and it has still come back. We know from other kids sites, that the kids that opt for chemo only that the tumour is back within months. We knew all along the key to beating this was radiation, and it worked on his brain, as the surgeon was sure he left a little tumour and now there is no sign of tumour. They think doing localised radiation is the best thing to do, as if it works they will radiate again when a new tumour appears - which they have assured us it will. If they do full spine now there are no options left when another one pops up. Seeing that there are no malignant cells floating in his csf, we feel this is the best option. The doctor has made it very clear this is not a cure. If the tumour responds to the radiation it will only prolong it growing or seeding, not get rid of it. Unlike the tumour in his brain, where it had been resected, this is a bulk tumour and they know that this sort of tumour does not really respond. They want to slow down or temporarily stop this tumour growing, as it is in the nerves that go to his legs and bowel. So when the tumour gets bigger he will loose use of his legs bowel and bladder. We talked about pain management and all the things that will happen. I did not realise that being in the spine where it is would not kill him, and we saw two doctors and neither of them mentioned that to us. We thought he only had a few months and he would die. We did not realise the tumour has to get back up to the brain first. Today is Friday 26th October, they are going to do the planning for radiation next Wednesday then start radition Thursday. They think he will have between 20-25 treatments. Enough doom and gloom. Last weekend we went a meet Jake Hendrix and his family - mum Leanne, dad John and brother Luke, his nana Di, aunty Lisa and cousin Taylor. It was great! Connor took his Thomas train set and they all sat and played with that. It is funny how no matter how many toys they have of their own, someone elses is always better - Connor trashed Jakes room playing with all of his toys. Connor and Jake played cricket in the backyard with John and Paul while we talked. It was great to be able to sit and talk to people that know exactly what you are and have gone through, and Jake is the most gorgeous little boy you have ever seen. We will definitly visit again and stay in touch. Jo. 10/22/01 A quick update. We saw the oncologist today and he said the marks are definitely tumours. They are doing a lumbar puncture tomorrow to determine if the cells are all through the spine, or just in the bottom, as they are talking about maybe radiating the spine and this will determine how much they will radiate. The dr said chemo is out as they couldn't give any stronger than he already had, and it has still came back. So we will talk with the radiologist and the oncologist on Thursday and decide if he has more radiation or if we just bring him home. They have said the radiation will only prolong it from getting to the spinal cord not get rid of it. I will update again Thursday after we know what we are doing. We are still shocked that it has come back so quickly. We always thought it probably would, but hoped of course that it wouldn't. I didn't think it would come back this year. After our visit with the doctor on Thursday she led us to believe that it may just be a false reading and that the lumbar puncture would determine it. But the specialist today said the lumbar puncture will not determine anything - it is definitely tumours. He said there is a hand fall in the nerves at the base of the spine. Thursday I will talk to the oncologist about what will happen when we go home and how long he has, even though I have a pretty good idea from reading the angels page. bye for now JO 10/20/01 Hi! Just a quick update to let you know that yesterday we received Connors MRI results and they were not good. Our regular Oncologist is away and the registrar we were seeing came out and looked at Connors chart, when we were sitting in the waiting room, and pulled a funny face. Straight away, I thought that is not a very good face. It was the sort of face that she was saying to herself "Oh no, I have to give these people bad news." I didn't say anything to Paul at that stage. When we went in the room she asked "So how is Connor?" and we said "great,"and she said "so you haven't noticed any signs of tumour?" and we said "no." Straight away I knew it was back! She then said "I will just have a look at Connor" and I asked "What did the MRI show?" and she said "I will talk about it after I look at Connor." I looked at Paul and said "it is back". She left us sitting there while she checked Connor, which I thought was wrong and inconsiderate. Then she explained to us that the MRI showed there were signs of tumor down in the bottom of his spine in the nerves. So today I have to take Connor in and get a blood test done, then on Tuesday they will do a spinal tap to check his fluid, to see if there are any signs in there. If there is then who knows what happens? If there is not he will have another MRI to see if it is just a mark on the MRI. We are hoping it is the same as what Sean had the other week. I will keep you updated on what is happening. 09/25/01 Hello, It has been a while since I last updated on Connor, but as they say, no news is good news. Connor had his port removed Thursday 20th September. We went to Townsville and saw the surgeon in the morning, then we went to the hospital and he had the operation. He came out really well, and we went home two hours later. We have kept his port, and I will store it away with everything else. I am sure in 10 or 15 years he will be very interested in everything he went through. I wonder if he will remember it? He was re-immunised the other day, so finally life seems a little bit normal. We go to Brisbane in 3 weeks for his next MRI, we leave the day after his 3rd birthday. He is running around alot, and climbing up on everything, which he has never done before, because of his balance and never feeling secure enough. Connor is very excited about meeting his new cousin Jessica Grace. Sharyn, my sister who we stayed with in Brisbane last year, had a baby girl on the 17th September, so Connor and Riley cannot wait to meet her. Riley is now the exact age Connor was when he went through his operation, it is hard to believe he went through what he did at that age. I cannot imagine having to go through it with Riley. Connor is quite excited about his 3rd birthday and has already put his order in. He wants a tip truck, tow truck and a Thomas the tank train set. Well bye for now, and will update again after his MRI Jo 07/15/01 Hello We have just returned from Brisbane were Connor had his regular MRI. It came back with no sign of regrowth, which was great! We flew down on Tuesday the 10th July, Dad came with me to help look after Riley, while I was busy with Connor. Riley is quite the little hand full now he is on the go the whole time. We went into the hospital Wednesday about midday and waited around till 2:30pm, then went down to where they do the MRI. On the way Connor started to get upset, which was the first time he has ever done this. Normally as soon as we go in the room he knows what's going on and gets upset, so I carried him down, which is hard to do these days as he has grown so much and now weighs 18.5 kgs. He kept saying "what they going to do to me" and I told him. When we got down to the room a nurse brought in a bed and he got really upset saying he didn't want to get on it, I told him he didn't have to and that it was for someone else, then he was right again. When he came out of the anaesthetic they put him on the bed and he cried, so I picked him up and said I would carry him back. He said he wanted to go in the pram, so we took Riley out, and Connor layed down in the pram and hid. When we got back to the ward he didn't want to get out of the pram and onto the bed, so I walked around with him in the pram, and he was really good except when Riley took a fancy to the bung still in his hand and pulled it. Blood started pouring out of his hand everywhere, I don't think it hurt him, I think it just looked like it should hurt. An hour later we left for home, and when we got into the corridor he asked for chips and lemonade. We went back to the hospital to see the doctor at 4:00pm the next day. Our normal doctor was there, but another doctor saw us, which is really annoying because they know nothing about him and they have never seen him, and when you ask them a question they cannot answer it properly, because they have no idea of his history. The plan was if this scan came back clear he would have his port removed and be re-immunized, so when I asked about the port the doctor had to ring our normal doctor to ask her about it anyway. Connor will have his port removed in a few weeks, which will be done in Townsville, and he will be re-immunized. All little things that make things back to normal again When I said to Connor about getting his port out he said "in a few weeks mum, not today". We stayed with Angela and David while in Brisbane, and they really noticed the difference in Riley, as he wasn't walking last visit, and now he is running. Also Connor has grown 3cm's since March and has put on 2.5 kgs - none of the nurses recognised him. Brendan came over with his new Harley Davidson and gave the kids a ride. It was quite funny as when he pulled up in his leathers and helmet Connor was very stand offish. He just didn't quite look like the normal Brendan - that is work shirt and tie or t-shirt and shorts. Connor had a great time singing Baa baa black sheep, Twinkle twinkle little star, counting to 10 for everyone and the ABC's, even though he jumps around a little. Not bad for a two and a half year old, especially one that has gone through everything he has. We now see our oncologist in September, as she will be in Townsville, and then have our next MRI in October so hopefully life stays normal until then. Bye for now Joanne. 06/12/01 Hi Just a quick update to let everyone know about Connors make a wish. The make a wish foundation arranged for a fire truck to pick Connor up and take him to freckles fun parlour were there was a dune buggy waiting for him. When the fire truck turned up he had a play squirting the hose. They took Connor and I in the truck he sat up the front with the driver they put the sirens on he loved it. When he saw his dune buggy he said look at that and ran and jumped in it. He has hardly spent a waking moment out of it since Riley stands up in the back and Connor drives him around. The local paper was there and the TV camera for the news he was on the news for about 30 seconds it was really good. We were a bit worried he might be abit shy in front of all the people and cameras but not at all he shook hands and said bye and thankyou to all the fire men which was on the news and he gave Sue who was the lady that arranged it all a bit hug and kiss at the end. We go down to Brisbane in July for Connors next MRI so will update again then bye for now Joanne May 5th Hello everyone, Just a quick update to let every one know Connor is doing great. His balance is really good now and he has even had a hair cut, it had grown that long that I finally cut it. When they have been bald for so long you just let it go but it finally got the better of me and I cut it. The doctors said the hair wouldn't grow back were he recieved radiation or if it did it would be very thin well connor has really thick hair and the hair at the back looks no different. You would never be able to tell what he has been through. Riley had his first birthday 2 weeks ago and Connor quite graciously offered to open all his presents for him what are big brothers for. Riley is up and running around he chases connor every where Connor thinks it is great and when he has had enough he gives him a little nudge and knocks him over just to keep him in order I think. I don't know how they will go in a month of two as riley progresses he will catch connor up quite quickly that will be interesting to see how connor reacts to that. Since we have come home Connor has become quite clingy to Paul I think because he spent so much time away from him, but he hates it every time Paul goes to work. I tell him dad has to go to work and earn money so we can spend it and go on holidays. Then the other day he said "your bad don't spend money don't want dad to go to work" Paul and I looked at each other and laughed for ages he is so knowing and clever now. He has been spending a lot of time with his grand parents Faye and Arthur come and get them most afternoons and take them to the beach or the boat harbour which connor loves. Or they goes out to my parents and play in the cubby house or in the sand pit connor has become a very good kite flyer. Last week Connors great grandparents flew up and visited and mums sister who connor calls DI DI he had a great week playing with them. This week his Aunty Sharyn and uncle Brendan are coming up to collect some baby stuff as they are expecting a baby in September connor thinks its great that sharyn is having a baby and its in her stomach. Now that he has put on weight which he has gained another kilo he says "baby in here mum fat tummy" he thinks because his tummy is fat he's having a baby to. that's about all for now so bye for now Jo 31st of March Hi everyone, Have just returned from Brisbane were Connor had his next MRI and the results were good no sign of regrowth the oncologist said if anything the little mark that is there looks smaller than it did in January which was great news. Connor also had a hearing test which came back perfect, he even heard one that I couldn't hear maybe I should be going for a test. He had an echocardiogram which was perfect and a GFR to test his kidneys and they are fine.The dentist also checked his teeth and said they were fine and he will check them in 6 months. The only hiccup was he got a temp the night after his MRI which was still there the next day. He had his port flushed which hadn't been touched for 12 weeks which I didn't tell the doctor because it was supposed to be done every 6 weeks, but it flushed and drew blood with out a problem. His port will come out after we get the next lot of results. The doctor made me feel that she was surprised by the results and she wasnt as confident about the next one. It is a funny feeling walking back into the oncology unit after being away for a while there is so many new faces that just keep coming in and a few old familiar faces that you see and some that arnt going so well and you realise how lucky we are that Connor looks and feels so great. He was extremely funny and very knowing this time down when we said we were going to the hospital Connor said "what am I doing" so I just explained and he was really good he cried and got a little upset when I told him he had to get his port needled but other than that he was great. When we got back to Bowen and I took him to the doctors he said the same thing and I told him that the doctor will feel his forehead to feel how hot he was and give you some medicine and he said "so I don't have a sore ear" so it definitely is his ear. The doctor gave his some antibiotics I wonder if he is going to need grommets or something because his ears seem to be a constant problem. It has been a year now since Connor was diagnosed and in that time he has grown 9 centremetres he now weighs 16.5 kg he has put on 2 kg since January. Connor and Riley have started kindygym they go twice a week and Connor won gymnast of the week last week and won a drink bottle which he thought was pretty good. Time has gone so quick Riley will be one in 2 weeks and is almost walking now and getting into everything he can. He annoys Connor and steals what ever Connor has, they have great screaming matches at each other, they are both as stubborn as each other which Paul says they get from me. They are really funny together. The minute Riley cries connor is there to see if he is ok or they sit in the car holding hands, I can see they are going to have some great fights but be best of friends as well as they grow up. Well that is about all the news for now we have our next scan in 15 weeks which will be the start of July so bye till then Jo 4th January, 2001 A quick note to let everyone know Connors MRI came back clear, which we were expecting but never 100% certain. We won't be quite so relaxed for the next one. We flew down to Brisbane on the 2nd of January went to the hospital on the 3rd. I had to get his port heparinized, which stops his port from blocking, it hadn't been used for about 9 weeks. He had that done which he screamed and didn't particularly like, neither did I, I will be glad when I can finally stop holding him down while they jab him with needles. They took us down to the MRI department and while we were sitting waiting for Connors turn the child in front of us arrested, so we had to wait another 45 mins before Connor had his turn, that all went smoothly. We went back up to outpatients and waited half an hour before he could go. The next morning we flew home at 9.30 in the morning so it was short and sweet. The doctors then rang today to say the scans look good. He is suppose to get his port done every 6 weeks but I've decided to let it go the 12 weeks between scans because he hates it so much. They are going to take His port out 6 months after treatment finishes which is around May. Why they don't take it straight out I don't know because they have told us if it comes back within 6 months they wont do anything, yet it has to stay in 6 months, which means we have to travel 200kms every 6 weeks to get him needled. I would rather just leave him, he has been through enough. Bye for now and good luck to all the other rhabdoid kids. Joanne 28th December Hi everyone Connor arrived home safely with Paul and was extremely happy to be home. We have had a wonderful christmas, Connor and Riley recieved lots of presents. We recieved a letter in the mail to say his next MRI is on the 3rd of January so I had to organize the flight to Brisbane, which was a bit of a hassle because of the christmas- new year break. Mum is going to fly down and give me a hand as it is more than a hand full with the two of them. Riley is now eight months old and quite the little character, he loves and adores his older brother, he sits and laughs at every thing Connor does. This next MRI will be what they will use as his base to compare all his continuing MRIs to. We are quite relaxed about this one but at the same time there is always that inkling in the back of your mind "what if it has started to grow already". He will be alright I am convinced this is the last we will hear of the tumour and he will go on to bigger and better things. His walking has improved so much since he has come home, he is running, which he has not been able to do since the operation. Sharyn and Brendan who came up for christmas could notice a big improvement in him in just 2 weeks which is great. As for his talking he is like a parrot he repeats every thing you say so we have to be very careful. I swore at an old man while I was driving and Connor sat in the back repeating me. Well that is about all for now I will update next week after we have been to Brisbane and seen the Doctor bye for now Joanne 10th of December Hooray we are finally finished! We had number 28 radiation treatment on the 27th November, which was a great day. The radiation hasn't affected Connor at all, his hearing and balance seems to be fine. They said his balance would be affected and we were worried about his hearing. Connor's hair has grown back really quickly, he has a complete head of hair except at the back where the radiation beams went in. He has two bald squares just behind either ear.   We have to come back to Brisbane in six weeks for his first MRI, they will use this scan as his base to compare the rest. He will have one every three months or if we notice any signs of the tumor growing he has to have a scan in Townsville straight away. This may mean he has a few more than needed, but the doctor said better to be safe than sorry.   So our routine now is to see the pediatrician in Townsville every six weeks then to Brisbane six weeks later for a scan. He will have to travel to Mackay for physio once a month. Mackay and Townsville are 200km's away from home. So we will be clocking up a few kilometers over the next few years.   As I write this Connor is on his way home in the car with Paul, he decided he wanted to go home in the car instead of flying. The car was loaded up full, with Connor in the middle, bearly able to see out the side windows. It is amazing how much stuff we ended up with in Brisbane. Riley and I are staying in Brisbane a few more days as Riley had photo's taken and a modeling agency saw them and want to sign him to do commercials and magazines.   Now we have finished we can look back over his whole treatment and marvel at the way he handled his chemo and how brave he has been. Even during his last round of chemo when he was so sick that we almost lost him, he bounced back so quickly. Children are truly amazing with what they go through and stay so happy.   I'd like to thank the doctors and nurses at the Royal Children's Hospital in Brisbane & The Mater Private in Townsville for taking such good care of Connor. A special thanks to both our parents who flew and drove numerous times the 1400kms to help out. Megan and John who had us all in their house for the two weeks while Connor had his operation and Riley was born. To Angie, David, Sharyn & Brendan for putting up with us for the last nine months in their houses, which can be very hard then you don't have any kids of your own. Thank you to everyone for your prayers and love. 22nd of October A quick note, had a great two weeks at home and Connors confidence grew heaps, due to being away from the hospital and being at home with all familiar things around him. On the way back to Brisbane we were about to leave to the airport when the Bowen hospital rang to say our flight had been changed. We were flying with Ansett and they had changed us to a Qantas flight an hour later, which was fine, so we arrived at the airport and I went to book in and they asked "is it only you going?" and I said "No Connor and Riley too", they asked "would it be under any other name" and I said "Connors" and they said "Sorry we only have a booking for you." and I said "Well Connor is the patient, and his ticket should be booked first." I showed him the Ansett booking which had a ticket for both and they said "Ansett booked one ticket, so they rang Ansett and they said there was only one ticket and the Qantas man said "Sorry." I asked "Well what does that mean?" and he said "You will have to leave one of the kids behind" I just laughed and said "You know how dumb that sounds, I have a six month old and a 23 month old". I then raced up to Ansett and said "Whats going on?" and showed them the tickets, and they said "Sorry we only have a ticket for you." Meanwhile the plane had boarded, so I raced back to Qantas, paid for a ticket for Connor and ran out to the plane. Just the sort of hassles you need. When we got back to Brisbane, we went into radiation to finish the planning off, which took them all week because they kept taking him of me saying it's better this way. Connor would just scream for an hour and they wouldn't get anything done. Then one day they came out and got me and we went in and while they were ringing the doctor to find out about some sedation I played with him on the table, and he just layed there. So the next day they let me wear a lead gown and come in and hold his hand. They got it done in two days - if only they had listened to the mum - in two days we got done what they had been trying to do in three weeks. I gave him choral hydrate which is an old fashion sleeping tablet and it puts him to sleep while he gets radiatied. He has two big squares behind either ear and a cross on the scare site in the middle of his head, which is where he is getting the beems. The doctor told us he was getting 1.5 grays (1500 rads) but I have actually found out that the tumor site will recieve 1.5 but the beems are actually set at 1.81grays, it's just that it decreses as it goes in. He has had his first week with no side affects yet other than vomiting once one night, but I just gave him ondansatron and he was right. I had a tube put down his nose, because the choral hydrate is horrible and he either spites it out or vomits it up if some goes down. By about day three it has made life a little easier. On the 13th of October, Connor turned 2. We had a small party with Sharyn, Brendan, Angie, David and Paul. Connor had a car birthday cake, and Connor blew the 2 candles, many times. Sunday 24th September 2000 Sorry it has taken so long to update Connors page but alot has happened and I've been extremely busy. Nana flew done to Brisbane to stay while Connor had his last cycle of chemo and for the two weeks after chemo, as we knew we would more than likely be back in hospital while he was neutropenic. Connor was really happy to see nana when we picked her up from the airport, but was looking around and asking for pop, who didn't come down this time. After opening his customary survival pack which consisted of cars, paper, pens lollies and games, he spent the night sitting in Angela and David's bed with nana, mum, Angela and David singing "little green frogs" making sure every one sang and did the hand movements. On the 13th of August we went in to the hospital to have a GFR and a hearing test done before starting our 5th and final cycle. This cycle consisted of carboplatin for 5 days infused over an hour each day. Next, melphalan was given, which was infused for 15 minutes then hydration for 24hours after. We started chemo on Thursday, Connor was really good because the chemo only went in for an hour and he could get up and play most of the day. So he went up and down the corridor with granddad pushing his robot, this is what Connor calls his imed. As soon as the chemo started on Saturday Connor vomited and wasn't his usual self, not wanting to get out of bed. Then when he had a sleep he felt really hot, so I got them to check his temp and it was 39.6 so he had to take some hour each day, then on day 5 another GFR to test that the kidneys were ok, before the panadol. His temp then went back down again, but he vomited again that night. The next morning they gave him his chemo before he woke up and he was fine. He didn't want to hop out of bed and walk at all. We went down to nuclear medicine had the GFR done, and the results came back fine, so the next day he had the melphalan. He wasn't sick at all, and because it is so toxic to the kidneys he had to receive hydration for 24hours after. Then we packed up and went home. On the drive home, which is only about 25mins from the hospital, we got to the bottom of our street when Connor said "mum" then vomited everywhere in the car. We went back to hospital the next day to get his infusion of stem cells back. As soon as they started to push them in, his eyes started to roll. Nana was cuddling Connor at the time and I suggested we get the bowel ready, luckily as Connor then vomited. He pretty much vomited every day up until Monday. He had vomited his nasal tube out a few weeks earlier and we decided not to put one back down until we needed to. He was swallowing his medicine without any trouble, which was the first time since he had his operation. I would tell him this is to stop you being sick and he would take it. Sometimes he would say no and I would tell him if you don't take your medicine you will have to get a tube and he would say "no mum" and take it. Monday we went back in for a blood test, as he was neutropenic, before the chemo finished. He started his GCSF needles on the Thursday and his platelets were down to 10 so we drove back to the hospital that night and had a platelet transfusion and drove home again. That night at about midnight he woke up crying and was really hot, I took his temp and he had a fever so we gave him some panadol and tried to cool him off. By morning he still had a fever and was not well. I said "where is it ouch?" and he said "in there" and pointed to his mouth. So off we went to the hospital, thinking he had mouth ulcers again, the doctor looked at him and admitted him to the ward. He had a few ulcers but the main problem was the lining of his mouth was just peeling of in big chunks. When we left home his face was normal with one cheek a bit red and by the time we got to the hospital and we were out of the car, one side of his face was huge and it looked like he had a tennis ball in his mouth. He spent the night at hospital, with his temp going up to 40, and the next day they put him in a room by himself and brought an intensive care nurse up to sit and watch him 24hours a day. They said what was happening to his mouth was also happening to his stomach and bowel. They put a tube down to his stomach because his stomach had stopped working. Nothing was getting away, so they had to drain everything out of his stomach. They were worried his bowel would perforate because his stomach blew right up full of gas. They were doing x-rays everyday to check his bowel, and it was quite scary when one of the doctors said "we should get him through this". He received platelets nearly every day and at one stage he had 2 platelets left, then finally on the following Tuesday he wanted to sit up and draw and started to drink a little bit. He was only allowed 20 mills per hour. Then Wednesday he was as bright as ever and out came the cars, which is a sure sign he is feeling good again. Grandma and Emma had sent him a parcel that he tore into and found heaps of cars and played with. When the doctors did their rounds they couldn't believe it was the same boy they had seen the days before. We packed up our stuff and went home, Nana flew back to Bowen and Paul flew down. We went to the airport to pick him up and Connor was really happy to see him. He had the biggest smile and wouldn't stop smiling, looking at Paul the whole time saying "dad". We spent the next five days going to the park, zoo and just playing. When we took Paul back to the airport and waved goodbye Connor kept touching his chest saying "me mum, me mum" wanting to go with dad. The next week was spent at the physiotherapist and occupational therapist. Connor also had to go to the dentist and get his teeth cleaned, a protective layer put on them and his front tooth capped, before starting radiation. They also fitted his mask for radiation while he was under getting his teeth done. We visited radiation to have a practice and to get him used to it, as he has to lie on his tummy with his head on his mask. He cried a bit, but they said he did put his head on the mask. They had to do some x-rays, but they couldn't get Connor to keep his head down when they moved away. So they said we could go home for 2 weeks and take the mask with us to practice laying still. If they can't get him to lie still, they will give him some sedation. So at the moment we are back in Bowen having a great time, it's like all his old toys are new again, he runs from one to the other. The first thing he did was ride on the mower with pop and play with pops golf balls. Then he went into nana and pops house and made sure all the familiar things were still in the same place. We are due back in Brisbane in two weeks time, to start the radiation. 5th of August In the week after having RSV Connor came home and recovered well, putting on the kilo that he had lost. He got the taste for devon meat eating 12 slices a day and also Dorito corn chips. My Mum and Dad (nanna and pop) came down from Bowen for Connors fourth cycle. Nanna stayed in the hospital with Connor at night and myself, Pop and Paul played with him during the day. He was really good and only vomited a few times. Connor was hooked up and received chemo from Monday through to Thursday, then we went home. We came in again on Friday and Connor had his stem cells reinfused, which was different than we had imagined. We thought it would be similar to a blood transfusion, however, it was a 70ml push. They also gave him Morphine as the cells were frozen, and this causes it to be very uncomfortable when they go in. He was a very brave boy and only cried a little bit. They also gave him Phenergen and a steroid to stop him having a reaction to the preservatives they put in the cells. The preservatives have a terrible smell and caused Connor's breath to smell terrible for about 24 hours. We then came home and Connor was really good. Then on Tuesday, he woke up a little cranky and wouldn't drink or eat, he then went to bed for his afternoon nap and when he woke up there was blood everywhere. So back to the hospital we went, Connor was hooked up and put on morphine to stop the pain of the ulcers. He was given 4 bags of platelets, because his platelets were 27. The next day he was given blood, as that had dropped as well. His platelets only jumped to 49, then the next day they were down to 14, so he was given another 4 bags. On top of all that he was getting a needle each day for his GCSF to get his white cells back, which were zero, and his neutrophils. We finally got out on Sunday as his white cells had come up to 1, although we continued with the GCSF for another 3 days. On Monday we started physio to try to help with his walking, as it is extremely wobbly, we will be doing this each day he is well enough. On Wednesday we were back at the hospital for the next MRI scan. Thursday was spent waiting for the results, which came back as good news. The doctor said the tumor looks to be shrinking. Connor starts his final round of chemo on the 14th of August. Nanna will be down again to stay in hospital with him, as Paul has gone home to go back to work, as he hasn't worked since March. 07/08/00 Hi again, Connor ended up going into hospital early because he had the flu really bad and was coughing and had a really high temperature. We took Connor in at about 7 o'clock at night and he was sent down to the infectious ward. His temperature kept going up all week and they couldn't get it below 38.5 degrees Celsius. On Saturday his hair finally started to drop out and it was everywhere. He was still receiving his GCSF needles and on Sunday his counts started to rise but he was too sick to go under anesthetic. If he wasn't well enough by Monday it was too late to harvest his stem cells, and he was going to have to repeat cycle 3 all over again, including the daily needles and the stem cell harvest. Monday morning came and he was a little bit better his temperature had come down and stayed down for almost 24 hours. The doctor came to see Connor and said if the anesthetist would put the line in they would go ahead and do the operation because his cd34 count was 7.5. Connor had his operation for the central line, and was in the ICU after it, because he had RSV (flu). When we came in after his operation we hardly recognised him, most of his hair had dropped out and he was as white as a ghost. They then hooked him up and harvested his cells. They need to retrieve six cells, and they managed to get 34 from Connor in one go! He was hooked up again the next day where they got 13 more. Connor was then given some morphine and medazlin to sedate him while they pulled his vascath out, which was in his groin, he also had a new nasal tube inserted. He then went back to the ward and received four bags of platelets and a bag of blood. We then went home after being in hospital for the week. When we got home the nasal tube had kinked in his stomach and would not work. Which meant we had to go back to the hospital the next morning and get a new tube put in. Because Connor has been lying in bed sick all week, he is very weak and cannot walk on his own. I think this may be due to him not eating for the week. He lost 1 kg and now weighs in at 12 kg. At the moment Connor is busy playing with his Grandparents, Faye and Arthur, who are down visiting for two weeks, as it is school holidays and Faye is a preschool aid. Connor starts his fourth cycle of chemo on the 17th July, and we are hoping we are not in hospital until then. 06/24/00 While we were at home in Bowen, Connor had a temperature one night, so we took him to the hospital. He had to be hooked up to antibiotics for the night, have a blood test that morning, and because we were in Bowen his results had to be sent away. The results showed that his ears were infected, and if they had had the results in Bowen, they would have known he wasn't neutropenic, his wcc was 13 and his neutrophils were 8. He went of the antibiotics and had oral antibiotics.Connor spent a total of two nights in hospital. Connor, Paul and myself came back to Brisbane on the 13th of June. Connor had another blood test that day which showed his bloods had dropped a bit but were still very good. On the 14th he had his MRI which came back that the tumor isn't growing, which is great. On the weekend we took Connor to a country market, where he went for a ride on a pony and a train. He thoroughly enjoyed it. Riley has spent his first 2 months following his brother in and out of hospital. Connor loves nursing and kissing Riley, and is very protective of him. Whenever he hears Riley crying, Connor says "Otay bub bub?" On the 19th we started chemo again, which was: vp16 for 72 hours vincristin on day 1,8and 15 and cpa on day 1,2 and 3 for an hour He handled the chemo well, only vomiting 3 times, when the nurses were a little late giving him his zofan. He played for four full days with all his cars and trucks (about 50), without grizzling or wanting to hope out of bed, which is the hardest thing to do while on chemo. He is home again now and is happy playing, the doctor said he will be neutropenic in a couple of days. We have to give him gcs-f needles each night, this makes the stem cells come out so that they can be harvested. Angie and David (my sister and brother in law)give him the needles, which is good as we don't have to go into the hospital all the time. Arthur Pauls dad came back down and stayed while Connor was in hospital. Paul stays with Connor at night and Arthur and I stay during the day. Mum and Dad ring evey night along with Pauls mum faye to see how he is, and my other sister Sharyn and her husband Brendan come over every night. They have a 4wd with a sun roof that Connor thinks is great and says the truck with the hole in the roof . Connor has never been able to say Sharyn and has started to call her Shaggie which she thinks is great. David also has a truck and Connor goes for a drive in it every day when David comes home from work. He mounts the gutters and Connor bounces around and thinks it is great. Connor is due to have a central line put in next week and have his stem cell harvest, I will update after that. bye for now Joanne p.s. i am in the middle of scanning some photo's of connor to put on the page. I will send them soon!