Thursday, 31 December - Farewell 2009!

Another rainy day, although it did clear up this afternoon. Drew stayed home whilst Dad and his brothers went shopping to spend their Christmas vouchers - still can't go to shopping centres or crowded places yet. Mariners went down, not a good way to end the year, although Drew spent New Years playing soccer on the playstation with his brothers, I think the Mariners won on the playstation :0). But it is a relief to say goodbye to 2010, it hasn't been all bad though, we have met some really lovely people and dedicated caring professionals and Drew has had some experiences which have brightened what has been a truly difficult year. Best of all my truly remarkable, inspirational, brave boy is in remission. Fingers crossed that next year is better.

Wednesday, 30 December 2009

Drew enjoyed the day at home with his brothers, riding the scooter around the garage and finally in the early evening a session down the nets - he was a happy boy!!

Tuesday, 29 December 2009

Back to John Hunter today for Drew's blood test. Being Christmas time their isn't a lot of staff on, so we went around to the Pathology department to have Drew's bloods done. That was my first mistake - unfamiliar surroundings. Unfortunately, virtually no blood came out of his finger, which meant we had to get it out of his vein. Drew was none to happy about that, the good thing about having it done in pathology is thats what they do all day, stick needles in people, so they're very good at it, it was just convincing Drew of that! We went outside and I had a chat to him and he let me put the cream on his arm (which numbs it so he doesn't feel the needle), we then went for a walk and he was full of beans and ready to go back to pathology. I'd asked for the best person to do it and they said that was Lilly. So attempt number 2, I was taking off the plastic covering and the last little bit pulled the hair on his arm, mistake no. 2. The tourniquet was on, cream off, we were doing the breathing and then the wheels came off, Drew started to resist and get cranky and then so did Mum. Back to the Day Unit we went, with Kurt in tow. Drew and I had words and I left to have a coffee and regain some composure and let Drew come around as well. When I came back he was happily playing with Kurt, I was still upset wondering how we were going to get this done and how long was it going to take. Around 12pm (we have now been here 3 hours and seen others have blood, see the Dr and go home) I put it to Drew again about having Lilly come around to the Day Unit for another attempt and he agreed, to my relief, but would he go through with it. Within 15 minutes Lilly was there, Drew co-operated, the needle was in and the syringe was full of blood before Drew could blink, I think even he was surprised. By the time the results came back and we saw the Dr, it was now about 1.30pm - a very long day. You can see the weight lift of his shoulders (mine too) and then he gets disappointed with himself that he couldn't do it earlier. Drew and I spoke about it at home and have decided we need to 'practice' every day at home and maybe have some more sessions with Jodie.

Monday, 28 December 2009

Rain again - where has summer gone? The boys are all getting on pretty well for being cooped up inside together for the last couple of days. Drew is still hankering to go outside and play cricket and I've told him I'm sure Dr Frank wouldn't be too happy with me if he slipped over and broke a bone - Um he huffs off back to the WII.

Sunday, 27 December 2009

Rainy again so no outdoor cricket for Drew, which miffed him a bit, but at least the Wii is getting a good work out.

Saturday, 26 December 2009

Dad, Kyle and Dane went and spent Boxing Day with family down near Camden, as there would be too many people for Drew, he, Kurt and I stayed home. The boys played the WII all day, and Drew is wondering why he is sore! Kurt is still waiting for his Christmas presents and Drew is very happy that he didn't go to hospital for Christmas.

Merry Christmas to our Sydney Carers

Friday, 25 December 2009 - Merry Christmas

Kurt was very sheepish and Mum and Dad withheld his Christmas presents today, with the danger he put himself in, we really had to do something that had a major impact, along with a few other punishments. We did have a big family discussion and the boys told Kurt how it made them feel, when he was missing - I really don't think he'll do it again. He did start to complain about his aching legs and feet and we told him not to even think about going there. On a brighter note the boys enjoyed their presents, we were home and not in hospital and had a nice pleasant day at home. To everyone who has supported us and read Drew's blog over the past 12 months, thank you and we hope you had a really great Christmas. We also thought about those kids and families that weren't as fortunate as us and didn't get to spend Christmas at home this year, which made us appreciate it all the more. Kristin if you're reading this Merry Christmas, we have been following the temperature in Skedsmo, and no doubt it will be a very white Christmas.

Thursday, 24 December 2009

Drew and his brothers very excited today. Last minute cooking stuff. Although the night did prove 'interesting'. We were over our neighbours in the evening when Drew's brother Kurt got the poops and was sent home. He decided to storm off, barefooted instead. When 15 minutes later we realised he wasn't at home - we, several neighbours, and Kurt's best friend's parents, set off in cars and on foot to look for him. After 90 minutes without finding him, I rang the Police, 60 minutes later they rang back to apologise for not getting there yet and they too assumed Kurt would be somewhere pretty close and would come as soon as possible. A car pulled up 30 minutes later and out hopped Kurt, who was promptly sent straight to bed, as relieved as I was too see him, I could of killed him. A very kind mother and her daughter had seen Kurt walking on the side of the road, at Lake Haven, which is nearly 12kms away and had stopped to ask if he was OK, they thankfully drove him home at 11.30pm. Even the Police said they wouldn't have looked that far for him. For a couple of hours it looked like our world was going to turn upside down all over again, fortunately it all worked out.

Wednesday, 23 December 2009

Two sleeps to go. Morning cricket has been cancelled by the Chief Umpire (Mum) due to Drew getting a severe case of the poops when he gets out, comforting to know some things never change.

Tuesday, 22 December 2009

Drew and all his brothers are up early for the 'big' cricket series. Drew is counting down the days to Christmas and hoping that his GVHD stays under control for Christmas at home.

Monday, 21 December 2009

Up to the hospital this morning with Kurt in support. Drew needed 2 fingerpricks to get the required amount of blood. His results were good and after spreading a bit of Christmas cheer and getting a ribbing from Di and Captain Loopy about the Mariners and the Jets, we were out of there pretty early. It is a year since Drew was diagnosed as being in remission - time does go fast. The rest of the day was spent playing with his brothers.

Christmas Pantomime

 

Sunday, 20 December 2009

Well I'm sure all our surrounding neighbours love us - Drew and Kurt were up playing cricket at 6.00am on a Sunday morning, Drew with his yellow and blue zinc cream on screaming out HOWZAT! Drew spent the rest of the day at home with Dad and two of his brothers, whilst I took Dane down to Sydney to play soccer. When we came home it was down to the cricket nets for all the boys, where by whatever rules they were playing Drew won - which made him extremely happy. I'm sure the neighbours will be hoping for a sleep in tomorrow morning from Drew. I too will try not to get so far behind in his blog and apologise to those who have visited in the last week and a half to find nothing there, it is that time of year and I'm still trying to catch up, unsuccessfully, on work stuff from my 3 months away.

Saturday, 19 December 2009

Back up to Ronald McDonald House today for a portrait of the boys. A local company had generously donated their time to do family portraits for free, the boys quite enjoyed the attention and hopefully took a nice photo all at the same time.

Friday, 18 December 2009

Drew has decided that now that all the boys are on holidays and as he can't go out in the sun, he and Kurt will get up and play cricket in the backyard at 6.00am. Although this morning he was up at 5.15am watching Air Craft Investigation, his favourite show. The weather was the total opposite of yesterday with rain as well, so Drew wasn't too happy when I told him cricket was washed out and he couldn't play in the afternoon, the playstation would have to do.

Thursday, 17 December 2009

Today was a busy day. We went up to Drew's school this morning, where Drew and Logan (the other boy from school with cancer) were presented with a gift for them and their families from the school's teachers. Once Drew is allowed prawns again we will put this gift to good use with a special celebratory dinner. We then went up to RM House for Drew to have his assessment for the Learning Links Program. Drew was very nervous, even though I explained there was no need to be, and had to take his own pencil, just in case they didn't have one up there. Barb the Psychologist/Teacher who assessed him, was very impressed with the amount of work Drew had completed throughout the year and with his assessment results. We were all very pleased. It was then over to the hospital to see the Christmas pantomime, starring a couple of our favourite Doctors and nurses and then the rounds wishing everyone Merry Christmas. Drew and Dane also ran into Santa and Mrs Claus and put their orders in for Christmas. When we came out of the hospital it was like a furnace, the temperature was so hot!!! Drew has now started his school holidays too.

Wednesday, 16 December 2009

All going well and to plan, today should be the last day that Drew and I are home together, with the boys starting holidays tomorrow and Drew returning to school next year. To mark the occasion we went and had lunch at a restaurant on the water at Swansea. We also had morning tea with Paula and a quiet afternoon.

Tuesday, 15 December 2009

Steroids down to 10mg today for the next week. Drew did some school work and had a quiet day at home.

Monday, 14 December 2009

Back up to John Hunter early today. Drew was having finger pricks instead of peripheral (cannula) blood taken so he wasn't too nervous. Although it did take 3 finger pricks and there were clots in it, but they got the cyclosporin level which is the important one at this time. Even though Drew was coming back up on Thursday for his learning assessment Dr Frank didn't want to see him until next Monday. Dr Frank is going on holidays next week and hopefully when he comes back in 3 weeks, Drew will be on fortnightly visits. We popped into school as it was class party day. Drew wasn't allowed to eat anything, or get too close to anybody, but he got to see his class mates and some of his teachers and wished them a Merry Christmas.

Sunday, 13 December 2009

Drew set off with big brother Kyle today for a walk to the paper shop to get his paper. I was fully expecting a phone call to come and pick him but he made it there and back. Kyle also thought it was a good idea to go the hilly way rather than along the flat bike track, so it was a double achievement on Drew's part - his leg muscles did pay for it later in the day. Drew was very impressed with the story and his photo in the paper, although Dad was a bit miffed that the dog got a mention and he didn't. http://www.smh.com.au/national/call-for-donors-as-christmas-blood-supply-drops-20091212-kpkd.html

Saturday, 12 December 2009

Today was quite a warm day - Drew got to stay home with 3 of his brothers as Mum rushed up to Newcastle to take Kurt to a Canteen Christmas party, down to the Central Coast to register the older boys for soccer, back up the Central Coast to pick up new glasses so she can see (multifocals - yuck), bit of Christmas shopping, 6 phonecalls in between from the kids, ranging from where was I, when will I be home to do you put a lid on the noodles when you're cooking them, then back up to Newcastle to pick up Kurt. I think life is back to normal, being down in Sydney for 3 months is starting to look like a 'holiday'.

Friday, 11 December 2009

Drew was home again today, as it was Year 6 Graduation Day and Drew's brother Kurt was graduating. Drew is now on 12.5mg of Prednislone (steriods) and touch wood all is going well. He is getting very excited about the World Cup now that the draw has been completed, but as yet he hasn't heard anything from the Make A Wish Foundation, so it is a matter of trying to keep a lid on that with him.

Thursday, 10 December 2009

Drew stayed home while I went to his brothers' Presentation Day at school. Afterwards I went into his class and we 'skyped' back to Drew, he 'handed' his classmates the Rein deers he had been busily working on - and they loved them. In the afternoon, the photographer came to take our picture for Drew's article on Sunday. He was a really nice person and chatted away while he snapped his photos - Drew quite enjoyed the moment and is looking forward to seeing Sunday's paper.

Wednesday, 9 December 2009

Drew was busy making Christmas craft for his classmates today and fitted in a bit of schoolwork in between, but no playstation - that must be a first. Backyard cricket was the go with his brothers late in the afternoon. Drew also spoke with a journalist from the Herald, who is doing a story on blood donations, which Drew will feature in, it will appear in this Sundays Sun Herald - he was quite excited about that.

Tuesday, 8 December 2009

Drew's steriods have been reduced this week to the dose where his GVHD flared up last time, so hopefully the time period in between has allowed the GVHD to peter out, the last thing we want is to be in hospital at Christmas time. Drew has been into his school work and going through the teams in the World Cup, he is very excited about the prospect of going - so fingers crossed - and still going on about Dr Frank having no faith in Australia - I think he is emotionally scarred :o).

Monday, 7 December 2009

Back to John Hunter today for Drew's blood level to be taken. It was a mixed bag, Drew was in a really good mood, but when Dr Jess came in to take his blood, he got really upset and didn't want it done. He calmed himself down and Jess stuck in the cannula, only for his vein not to want to give up any blood :o(. Drew was really angry. Dr Frank came in and said he was happy for Drew to have a finger prick and that he didn't have to come back until next Monday, this cheered him up and he happily had the finger prick. Drew and Dr Frank got into a discussion about the weekend football and the World Cup. Dr Frank told Drew that if he gets his wish to go to the World Cup (through the Make A Wish Foundation) that he better go early as he doesn't think Australia will make it to the second round - Drew told him in his forthright manner what he thought about that!

Sunday, 6 December 2009

Aunty Trish & Aunty Bev visited today, bringing a signed Brett Emerton polo shirt and Socceroos cap for Drew - he was very excited about that. Playing cricket once the sun had lost its heat, playing the playstation and watching Australia in the hockey filled the rest of Drew's day today.

Saturday, 5 December 2009

Yes we got out of bed at 4.00am to see the World Cup Draw (which they didn't draw to 5.00am). Drew was kept busy throughout the day writing down each teams schedule, even though it will be printed in tomorrow's paper, he is definitely into stats. We watched the A-League in the evening, but unfortunately the Mariners didn't win tonight, but the Jets did, so Drew is going to cop it from Dr Frank on Monday.

Friday, 4 December 2009

Drew did some school work and Christmas craft today - he is making some special things for his classmates. He is also counting down the hours to the World Cup draw, we are getting up at 4.00am tomorrow morning to watch it. I think I am mad. Drew was excited to see Kurt when he returned from his 3 day excursion to Canberra tonight - Kurt was in bed within the hour of returning home - obviously had a good time.

Thursday, 3 December 2009

Drew's bloods were good today and there weren't any dramas getting the blood - Drew was relieved and proud of himself. We went for a short jaunt to Newcastle to get a couple of things and you would think that a boy who has spent so much time in hospital would be eager to get out and about, but no he just wants to get home (and have lunch).

Wednesday, 2 December 2009

Drew and I were very excited to receive a wedding invitation in the mail today - in Norway next May. Hopefully Drew will be in good health and we will be able to attend, although the temperature today was -12C, so we will definitely be rugging up. Drew is powering away at his school work and thinks if he's not a sports 'star' he'll be a sports statistician.

Tuesday, 1 December 2009

Today was one of the first steps in Drew going back to school next year, with an assessment arranged with the Ronald McDonald Learning Program in two weeks. This will show where he is up to and what extra assistance he will require next year. We also lowered his steriods down to 15mg today, we are now getting to the dodgy dose said Dr Frank - meaning it was around this dosage that Drew's GVHD flared up before, so fingers crossed.

Monday, 30 November 2009

Back up to hospital this morning for blood tests - all went well with no dramas at all. We had a nice hot chocolate with Dr Kristin today, but it was sad as well as Kristin is returning to live in Norway and it will be a very long time before we get to see her again. Kristin has been there from day 1 with Drew and made him a beautiful book of Norwegian Fairytales when he went to Sydney - we shall miss you very much Kristin and wish you and Damian all the very best in your new life in Norway.

Sunday, 29 November 2009

Bit of early morning cricket, playstation and then a trip down to the cricket nets with Daddy and all his brothers this afternoon. The Jets had a good win Joey and Jacob if your reading this, which helped the Mariners be 1 point away from 2nd spot, pity we drew on Friday night. Drew didn't have any bone pain after his big day of exercise which was good for him.

Saturday, 28 November 2009

Hot quiet day, watched Harry Potter's Chamber of Secrets and a bit of afternoon cricket after it had cooled down.

Friday, 27 November 2009

Drew got stuck into his school work today whilst Mum was up at the high school. We went to see Dr Warner, Drew's Cardiologist this afternoon, who was very pleased with Drew's heart and is happy for Drew to resume soccer next year, all else being well - that brought a smile to Drew's face. Drew was excited all day as we were going to see the Mariners tonight. We had to arrive early, after dropping big brother off to soccer training, leave late to avoid the crowds and were lucky enough to have an air conditioned box to sit in. When the players came out on the field to warm up, Lawrie came and got Drew and took him on to the field. He high fived Danny, went and sat on the bench, had a little kick with Ahmed and Matt Simon and got to meet the Perth Glory coach Dave Mitchell, Jacob Burns a Perth Glory player and the referee - he was even more excited when he came back off. The Mariners had a draw against the Glory so Drew reckons he is still lucky and went to sleep pooped but happy.

Thursday, 26 November 2009

Back to John Hunter today, for a blood test. On the way up in the car Drew was telling me he wasn't worried about having his blood taken today, in fact he felt over confident - well famous last words. When we got there, Dr Sarah told us that Drew might be having a bone scan, which is time consuming but painless, the only difference being they leave the cannula in until they have injected the radioactive dye and then remove it. That was enough for his mood to swing and when we tried to take his blood Drew was very unco-operative and totally shut down, I thought we had got past all this and had to leave the room before I 'lost' it. I rearranged the bone scan, which Dr Frank wants to do because of the pain Drew had (apparently a rare complication can be osteonecrosis)to next week. When I went back in Drew came around and we talked about it and put some more cream on and when Dr Sarah came back he did it first time no problems and no problem with the blood coming out. Whew! The good news about today was Drew's BMA came back negative, although Frank said it was very good news "you're not out of the woods yet". He went down to Dane's training this afternoon, and saw his Chris, his soccer coach from last year and his Football NSW Coaches, Tony, Steve and Mario, who are now with the Mariners. They were all happy to see him looking so well.

Wednesday, 25 November 2009

Drew woke up today pain free, so hopefully it was only the medication he is on to treat last week's infection that caused last night's pain. I went up to school today and all Drew's teachers were asking after him and glad to hear that all going well he will return to school next year. Tristan and his mum Donna, dropped around to see Drew the first time they have been able to see him in the flesh for a few months. Drew wasn't going to play cricket today after last nights pain, but couldn't help himself, with a surprise visit from Lawrie and his wife Christine. Lawrie had a bit of a hit and Drew reckoned he wasn't too bad a cricket player for a Scotsman. No pain tonight although I was prepared with Panadeine Extra ready to go.

Tuesday, 24 November 2009

Drew had a visit from Uncle Phil today and enjoyed the passion fruit cake. He did some school work for the rest of the day and played cricket with his brothers this afternoon. When Drew went to bed tonight his ankles started to hurt and an hour later he was in agony. At 1.00am I rang the hospital and Drew was in tears not only from the pain, but also because he didn't want to go to hospital. We decided to give it another hour and if the pain didn't subside I would have to take him in, fortunately it did go away and only flared up for a brief period after that.

Monday, 23 November 2009

Today was always going to be a difficult day. Drew was nil by mouth as he was going to theatre to have a bone marrow aspirant, and he is still on steroids, which makes him incredibly hungry, so to say he wasn't in the best of moods was probably an understatement. All this didn't bode well for having his blood taken. As his cyclosporin level needs to be taken as close as possible to when he takes it and not knowing when he would go to theatre, the Drs didn't want to wait until he went to theatre so we gave it a shot. Drew wasn't co-operative the first time around and we gave it a break for a while. He came around only for us not to be able to get blood out of his arm, and that was his final straw he wouldn't let us have a second go and I couldn't ask him to be brave again. Luckily theatre called down at that moment and it was decided just to take it in theatre. Drew woke up happy from the anaesthetic and was even happier once he had something to eat. We were home by 2.00pm and the rest of the day was without incident.

Sunday, 22 November 2009

Drew coped well with the 41C heat today. As he can't go out in the sun with the medicine he is on, besides the fact that he would have cooked like a fried egg, he waited till the evening and went for a little dip in our neighbours pool, he felt really refreshed and was excited about doing something normal. Back to hospital early tomorrow morning (when its only supposed to be 20C) for a bone marrow aspirant.

Saturday, 21 November 2009

Another hot day today. Drew's brothers all went their separate ways and Drew played the playstation and drank a lot. The Mariners had an almighty 5 - 1 win and Drew helped his Daddy cook dinner and enjoyed being at home.

Friday, 23 November 2009

Drew had a special visitor last night after I had posted his blog. A Man in a red suit with a big white beard dropped in with a bag of goodies. That put Drew in a good mood. Drew had his blood taken this morning and provided his results came back ok, we could go home. Dr Frank came in around 11.30am and gave Drew the good news, mind you it was that hot I think it might have been nicer to stay in. Tonight to celebrate Drew's 100 days we went out and had chinese at a little local restaurant, that didn't have too many people. Drew really enjoyed it, but was a bit peeved that whilst he is still on steroids he cant' have prawns.

Thursday, 19 November 2009 - Day 101

All things going well Drew was supposed to be going to the Governor General's Christmas Party today - but all things aren't well so unfortunately he missed out. They changed his intravenous drugs to a different antibiotic in tablet form tonight, which may have some affect on one of the other drugs he is still taking, but will hopefully make going home earlier an option - he will need to take this antibiotic for another 10 days. Drew is well, but sick of being in hospital and just wants to go home.

Wednesday, 18 November 2009 - DAY 100

YEE HAA Day 100 - even if we are in hospital. I took Drew in a wheelchair, as it is still too uncomfortable for him to walk, for a celebratory hot chocolate and cappucino in the hospital grounds. Dr Liz told Drew that all the Dr's thought he had a very impressive ultrasound and that the male Dr's all winced. Drew hasn't had a temperature since his high 39s on Monday night and the Dr's have also identified the bug that has caused Drew's infection. Drew had another visitor today.

Tuesday, 17 November 2009 - Day +99

Drew slept through most of today. His canula in his hand is working well. Drew enjoyed a visit from his brothers tonight.

Double Digit Birthday Boy

Monday, 16 November 2009 - Day +98

Drew had a cast of thousands on the morning rounds today, and it was decided to do a scan with pain relief and sedation if he could tolerate the pain. His cannula stopped working and he was upset about that and the Drs wanted to do a finger prick, but Drew didn't want a bar of it, so they ended up putting a cannula in his hand, which again he was really brave for. The scan went ahead in the afternoon with morphine and medasalam (sedative)and it appears Drew has an infection in the epididymitis (I'll let you look that up on the internet) he is on antibiotics and slept for the rest of the afternoon.

Sunday, 15 November 2009 - Day +97

I was only thinking this morning that we were nearly to the 100 day mark, without too many hiccups, but we weren't quite there yet. Drew woke up and said it hurt his balls when he walked, I didn't think too much more about it, until in the afternoon he felt a bit warm and he was walking like he'd just gotten off a horse and when he showed me they looked the size of a horse (he gave me permission to write all this). Off to John Hunter we went again - he was examined by 2 surgeons, who thought he may have had torsion, twisting of the testicles. After examining Drew they thought it was unlikely as it normally only happens on one side, not both, and isn't accompanied by a temperature. Drew was in a fair amount of pain, particularly when he was examined. He had a cannula put in and blood taken and we finally got to bed at 12.45am, only for his pump to beep all night long - which wasn't a good sign for the cannula.

Saturday, 14 November 2009 - Day +96 - 1 Year Anniversary

Today marks Drew's one year anniversary from diagnosis - little did we know when we woke up on the 14 November 2008 what the next 12 months had in store, but we made it and can only hope the next 12 months are better. We had lunch at McDonalds to celebrate McHappy Day which raises funds for Ronald McDonald House Charities and went to Caves Beach to eat it. Drew enjoyed a spot of cricket with his brothers in the afternoon, although his knees and ankles are still a bit sore from the other day. We spent the evening watching Drew's transplant and half of his last radiotherapy session to give Daddy and the boys an idea of a little bit of what he went through. It was another mixed emotion day.

Friday, 13 November 2009 - Day +95 - BIRTHDAY

Drew woke up early to open his presents, he got lots of phonecalls, but was disappointed when the postman didn't leave any cards. He was excited to talk via Skype to his classmates at school and 'share' chocolate crackles with them. He also had a surprise visit from Miss McGeachie bearing a lovely chocolate cake. We also spent the day reflecting on the past 12 months and particularly this Friday last year, at least we didn't have to go to hospital today, I think that was his best present. Sounds like you are enjoying your overseas holiday Joey & Jacob.

Thursday, 12 November 2009 - Day +93

Today we had a short walk along the lake and then went and had chocolate crackles with Lawrie and the Mariners, before heading up to see Dr Frank. Dr Frank was busy today and Drew got cranky with him because he had to wait 45 minutes to see him. Frank walked in and Drew said "Here's your chocolate crackle Frank and your lucky to get it because I'm starving". Lucky Frank has been seeing him for 12 months and knows how 'straight forward' he can be. Drew had a bounce on the trampoline this afternoon and with the walking we had down today, he paid for it tonight with sore knees, but the excitement of tomorrow got him through it.

Wednesday, 11 November 2009 - Day + 93

Another day of wearing his fingers away to the bones doing school work - he really gets stuck in to when his well. Not much else happened today.

Tuesday, 10 November 2009 - Day +92

It is hard to believe that 13 weeks have passed since Drew's transplant. He went for a little walk tonight just down to the lake and back. Drew did yesterday and today's school work and is looking forward to going back to school next year. On Friday he will hopefully be able to skype his classmates, but due to be on steroids probably won't be able to visit them in person before the year ends.

Monday, 9 November 2009 - Day +91

Today was a hospital day which was a challenging one. Drew's vein in his right arm, despite TWO tries wouldn't give up the blood, and silly Mummy had only put cream on one arm, as we'd never had trouble before. Drew, of course was upset that we were going to have a third go in his other arm and wasn't too keen on having the cream on. Again to his credit, I am so proud of him, he let me put it on and then we went and had hot chocolate and raisin toast (I'm sure that was an incentive too) while the cream numbed his arm. When it was time to do it, he did his breathing, didn't struggle and although Dr Sarah still had some difficulty finding his vein, he still let us do it. Dr Frank gave him the good news when his results came back that he wouldn't need blood taken on Thursday (I did an inward dance too), and hopefully next Monday his veins will be more co-operative and Mum will put cream on both arms. He wanted a bigger book for his 'cricket stats' so that was his reward for being such a brave boy and he carries it everywhere with him, his pretty easily pleased.

Sunday, 8 November 2009 - Day +90

Nice quiet family day at home. Drew umpired 'Backyard Cricket' and took his job very seriously, not sure if he was Dickie Bird or Billy Bowden, but he had all the scores and stats in his 'little book'.

Saturday, 7 November 2009 - Day + 89

The two older boys went to a Canteen day at the beach - they had a great time, but unfortunately got their legs got eaten alive by sand flies - they look like they have chickenpox, thank goodness they don't. Dane and I went off to another little boy's fundraiser, Logan also attends their school and was diagnosed with neuroblastoma in August 2008 and is also nearing the end of his treatment. Drew unfortunately couldn't go as he isn't allowed near that many people yet, but Dane and I had a good time, Dane the daredevil passed up a ride on a trike and went on the train ride instead, but Mum went on the trike with "Animal" from the Kings Cross Bikers Charity - it was great.

Friday, 6 November 2009 - Day +88

Drew enjoyed fish & chips for lunch today, school work and no hospital. Counting down to his birthday - 7 days to go. Without jinxing ourselves we are slowly getting back to 'normal'.

Thursday, 5 November 2009 - Day +87

Drew enjoyed a quiet day at home, Lawrie dropped in with a little something for Dr Frank. Drew doesn't have to go back to hospital until next Monday, so he is pretty happy about that. School work was on the 'menu' today.

Wednesday, 4 November 2009 - Day +86

Drew just had to have another blood test, his 5th needle in 7 days, all being well today, we could go home. We didn't get the results until 2.00pm so he was getting pretty antsy, but we could go. He received his 'Needle Certificate' from Jodie, I can't believe its the same child from 6 weeks ago. Drew received some lovely cards from his 4G classmates, wishing him an early happy birthday and a speedy recovery from hospital, so that obviously worked. Still over a week until his birthday, so fingers crossed he doesn't have any more hospital stays before then.

Tuesday, 2 November 2009 - Day +85

Melbourne Cup Day today - so different from last year. The morning was busy with Drew having more blood taken, an ECG as he had a pain in his chest yesterday afternoon and a CT scan, just to make sure his chest is totally clear. All were good, although one of his kidney levels is high due to the cyclosporin. Drew's doctor in Sydney said to put his steroids back up to 50mg per day, which means he will be incredibly hungry, and they will be reduced slower. The side affects of the steroids include high blood pressure and blood sugars and thinning of the bones to name a few, but unfortunately it is necessary to keep the GVHD at bay. It is definitely a roller coaster ride. I have met another Mum whose son is in here at the moment, he finished his 2 years of treatment in September and relapsed 3 weeks later and they are facing it all over again - you feel so sad for them and at the same time hope that we won't be in the same situation.

Monday, 2 November 2009 - Day +84

Drew's temperature hit 39.7 in the early hours of this morning and they were going to take blood at 4.30am, thankfully they changed their minds and put it off until later in the morning. He wasn't happy about it and I thought it was going to be a drama, but to his credit, once again he did it with no problems. Dr Janis ordered a chest x-ray as he still has this cough from about 4-5 weeks ago. If his bloods don't reveal any infection, she will speak to Dr Sue in Sydney about putting his steriods up a bit and reducing them a bit slower. We managed to avoid a NPA this afternoon (that is the mucus sucking out of the nose) that he hates so much

Sunday, 1 November 2009 - Day +83

No blood today, just antibiotics in his cannula. Drew's temperature behaved most of the day around the 38C, but went over 39 tonight - UGH! He is not happy about being in hospital and thought he might get out today - that was definitely wishful thinking. Although its not great being here it is nice to catch up with all the Nurses and Doctors that we haven't seen in a while.

Saturday, 31 October 2009 - Day +82

Today didn't start off to flash. Drew woke up and vomited and had a pain in his head. He ate a little bit of breakfast but not a lot, his temperature was still OK. Around late afternoon he cracked the 38C mark, which meant we had to go to hospital, we worked out it had been nearly 4 weeks since we had spent a night in hospital, it had gone pretty fast. He had to have a cannula put in, and again he was EXCEPTIONAL and was started on antibiotics. He went to sleep pretty early and didn't see the Mariners play. As Dad and the two older boys were in Sydney at the State Futsal championships, Dane stayed with me in the hospital bed and although they are 100 times more comfortable than the beds at Sydney Children's hospital, they are definitely not meant for 2 people.

Friday, 30 October 2009 - Day +81

Just another home day. Drew's temperature is still hovering around the mid to high 37s, but he seems to be ok, his appetite has dropped with the reduction in steroids, but he is full of energy during the day.

Thursday, 29 October 2009 - Day +80

Another hospital free day and school day at home. Drew is enjoying being home and is definitely back to his old self, giving his brothers heaps, getting stuck into his school work and working out which brother's bedroom he'll sleep in.

Wednesday, 28 October 2009 - Day +79 - AWESOME ACHIEVEMENT

Back to John Hunter today and Drew had to have his blood taken. He was absolutely fantastic, it wasn't a problem at all. Drew did some school work whilst we were there and a bit more when we got home. His temperature has crept up a little bit, but hasn't hit 38C yet. Drew was disappointed he didn't get to see Dr Frank today, as he wanted to ask him about jumping on the trampoline like a 'goalkeeper' and his brother having shots at him (not on the trampoline), so he is obviously feeling well.

Tuesday, 27 October 2009 - Day +78

Home day today. Drew got stuck in and did his schoolwork, played with Quincy and of course the playstation.

Monday, 26 October 2009 - Day +77

Today was our first day back to John Hunter in over 3 months. It was nice to catch up and everyone was happy to see Drew and how well he looked. Dr Frank of course mentioned the Jets win over the Mariners and how fitting it was that they were playing each other on Drew's return home. Drew managed to escape having blood today, which made him very happy.

Sunday, 25 October 2009 - Day +76

Drew was up at the crack of dawn today in his long pants and long sleeved shirt, to play cricket with Kurt. We enjoyed a family game of monopoly and then Drew was back out playing cricket in the afternoon. He pooped fairly early tonight with a great big smile on his face.

Saturday, 24 October 2009 - Day +75 - HOME DAY

After 13 weeks in Sydney, 67 of those days in hospital, it is time to go home. Dr Sue surprised us last Monday by telling us that Drew was doing so well there was no reason for him to stay and we could go home at the end of the week. We have kept it a surprise from everyone and now the day is here. Before the transplant and you're given all the statistics of complications and survival just from the actual transplant you never know if you will bring your child home - so today was an emotional day. As exciting as it was to come home it was also sad to say goodbye to all Drew's carers and the other families we have met along the way. It was amazing how much stuff we had accumulated and we only just fitted it all in the car, with Drew in the front seat, which was an added bonus. Quincy was very excited to see us, as were the boys when they came home from the school fete. Drew will go to see Dr Frank on Monday, and he will have bragging rights since the Jets beat the Mariners on Friday night. We told Lawrie he had to answer for that!

Friday, 23 October 2009 - Day +74

Quick visit to the hospital this morning for Drew to have his cyclosporin level done. Not his favourite fingerpricker but one he had had before, Drew told him he did a better job this time - he is definitely getting back to his old self. We had fish & chips tonight from Hunky Dory, the best fish and chip shop ever.We went to eat at the 'dog' park at Coogee, of course Drew had dog attractant on because all the dogs wanted to come near him and I had to keep shooing them away. This was to be our last night in Randwick before we finally went home!!!

Thursday, 22 October 2009 - Day +73

No hospital today, Drew did some school work and played his new Fifa 10 on his DS. We drove down to La Perouse this afternoon, it was too hot for Drew to get out of the car, but he enjoyed the drive. We had a nice dinner with Maria, Angie and Coop, we were in the courtyard and Drew was inside.

Wednesday, 21 October 2009 - Day +72

Up to the hospital for his blood count today. Drew had the same 'blood sister' today as Monday, but she took 2 pricks today to get the required blood and then it clotted, as it sometimes does, so they didn't get his full blood count - Drew still thought she was the best. We then had a marathon wait for Dr Sue, who had a really busy day, but she had some good news for Drew. Drew also had a special surprise last night with Mike & Susie from the Make-A-Wish Foundation came to see him about his wish, which is to go to the World Cup next June and see the Socceroos play - he aims high my boy. They were both lovely and Drew enjoyed their visit. The house had a Halloween Dinner and I took Drew out the back to eat so he didn't miss out.

Tuesday, 20 October 2009 - Day +71

Off to Palm Beach today, that was a bit of a drive and a half. We had lunch in a cafe, making sure we sat well away from everybody else. For the first time in a couple of weeks, Drew was beaten by a meal, he couldn't finish his egg and bacon roll or all his chips - maybe the reduced dose of steriods is starting to slow his appetite down. As Drew isn't allowed out in the sun for any length of time, particularly in the middle of the day, we grabbed a quick photo, drove around and saw how the other half lives and then drove back.

Monday, 19 October 2009 - Day +70

Drew had his best 'fingerpricker' ever he said today, not sure on what basis he made his decision. His bloods were 'good' and everything is going well. He managed to start back on his school work today as well.

Sunday, 18 October 2009 - Day +69

Drew had two lots of visitors today, Uncle Bones and Lucy and Leanne and Terry, which made his day go quicker. Drew started a Formula 1 jigsaw puzzle and tried to speak to his brothers and Tristan on skype, but it was one of those nights, where it just didn't want to work. Drew is looking forward to starting school work tomorrow - not.

Saturday, 17 October 2009

We all went for a drive today, before coming back and cooking hamburgers for lunch. The boys left not long after as Kyle had his soccer presentation this afternoon. Drew and I did a jigsaw puzzle of the world and Drew had his favourite meal of the moment, scrambled eggs, for dinner.

Friday, 16 October 2009 - Day +67

Early morning visit to the hospital today for Drew's bloods, the blood sister (who was actually a blood brother) thought he was going to take Drew's blood from his arm, but we soon corrected his wayward thoughts. Although I think he had to squeeze that much blood out of Drew's finger that one in the arm would be quicker and less painful - I just have to convince Drew of that. Drew also had his nasal gastric tube removed today, the hardest part of that was getting all the tape off his face and walked back to RMDH, so he was quite pleased with himself and says he is starting to feel normal. He even has a six o'clock shadow on his head, so no doubt he will soon have a head of hair. The other boys and Dad arrived tonight and they were all pleased to see each other.

Thursday, 15 October 2009 - Day +66

Indoor day - windy yet again. Drew 'polished' his trophy this morning (wonder how long that will last :0). Boys played well and we made rocky road, I'm sure we will miss Dane's company next week.

Wednesday, 14 October 2009 - Day +65

It was quite an interesting day today. In the middle of breakfast the fire alarm went off yet again, so out the front we went until the fire brigade rolled up again to turn it off - glad its not winter. After that excitement we went up to the hospital for Drew's blood test and on the way back we got stuck in the lift for 10-15minutes. Apart from that something really special happened to Drew today. At the beginning of his time in Sydney, Liane (Psychologist) & Heather (play therapist) encouraged Drew that if he could earn a 100 stickers, for his co-operation with procedures that he would be rewarded with a trophy. Drew earned his 100 stickers last week and was presented with his trophy today. He was so proud of himself, as was I and his little face lit up. He has his name engraved on it, with BMT and the date and the word Leadership, which he chose, as he said it meant he was in control.

Tuesday, 13 October 2009 - Day +64

Another one of those beautiful hospital free days. Unfortunately the weather has been a bit unpredictable and really windy so we haven't been able to get out and about much. Today Uncle Darren came to visit which was nice for the boys. Drew and Dane are enjoying playing and spending time together (most of the time). The pendulum has truly swung, two weeks ago Drew was hardly eating anything and now he's thinking about what's for lunch before he's finished breakfast. Tonight McDonalds volunteers prepared a dinner at the house, which was really nice, both the boys thought so too, sending me back for seconds.

Monday, 12 October 2009 - Day +63

Up to the hospital for a quick blood test (finger prick) this morning in the nice sunshine. We then put a soccer game together before popping back up to the hospital (no sunshine now) for Drew to see Dr Sue. Blood count is high but this has been put down to the steroids Drew is on. Back to the unit for the soccer face off between Drew and Dane, and a visit from Barbara Drew's ward granny. Quiet dinner before the boys hit the sack at 8.30pm.

Sunday, 11 October 2009 - Day +62

Drew's first day in 11 weeks that he hasn't had to go or been in hospital. We had a nice day together again, before Daddy, Kyle and Kurt went home in the afternoon. Dane is staying down for the week although he got cold feet after they left. We went for another drive today, with Drew recording what he saw, dogs, women, buses and people playing golf. He is definitely enjoying life out of hospital and all the little things we all take for granted. As I type this the Rescue helicopter is landing at the hospital, it makes you wonder whose life has been devastated tonight and how.

Saturday, 10 October 2009 - Day +61

Amazing what changes in a day. Arriving on the ward today, Drew's windows had all been cleaned and with nothing on the wall the room looked really bare and hard to believe we had spent so long there. Unbelievably we had to be readmitted for a blood test, yet after 67 days in hospital the woman at the front desk couldn't find any record of Drew and insisted I fill in all the forms, needless to say I wasn't impressed. On a brighter note today the old Drew was back, his energy levels are picking up, he was cracking jokes, being cheeky and giving his brothers stick, which was really good to hear and see. For the first time in a long time we all sat down and had dinner together as a family and not in hospital.

Friday, 9 October 2009 - Day +60 - DISCHARGE DAY

YIPPEE!!!! Drew was discharged from hospital today. He had his bloods taken by a finger prick from the 'Blood Sisters' (yes that's really what they call them) and it was actually a bloke, but he was very good at what he does, although on a pain scale of 1 - 10, Drew said it was 400, a massive exaggeration on his part as he barely flinched. His steroids were also reduced by 20mg a day for his GVHD. One of Drew's kidney function tests was a bit abnormal today, so he was a bit annoyed that he has to come back early tomorrow morning for a blood test, he was looking forward to a sleep in. Daddy and brothers arrived tonight, Drew had just gone to sleep, but toddled back out of bed to see them.

Thursday, 8 October 2009 - Day +59

Dr Sue back today and she too was happy with Drew. His blood clot is still there, but doesn't require any further action (such as twice daily injections for 3 - 6 months :O))) ), it may disappear of its own accord, or it may be there forever. Drew didn't need blood taken today so he was happy about that. More day and night release with all being well, tomorrow being the big day. The steroids have kicked in and Drew's appetite is flourishing, I don't know that he will need supplemented tube feeding for too long.

Wednesday, 7 October 2009 - Day +58

Doctors were happy with Drew again today and he was given day and night release again. He does have a bit of a 'fruity' cough, as they call it, so hopefully that doesn't amount to anything more. Drew had the ultrasound today, I could see the blood clot was still there, but we didn't get a call from the Doctors so hopefully that is good news. All his cannulas have been removed and his next blood test will be on Friday, as a finger prick, he should go OK with that and if all is well he will be discharged. As much as that is what we have been waiting and hoping for, it is still a bit scary now that it has arrived. Drew is enjoying being out of the hospital, as you would expect. He didn't nap during the day today, but did go to bed about 7.30pm tonight, his Doctor told me this morning that it is all pretty normal for this stage and that in the early stages when Drew had so much energy he was way beyond the curve , which is reassuring.

Tuesday, 6 October 2009 - Day +57

Very exciting day today!!!! Drew's Doctors came and looked at him this morning and were happy for him to have day and overnight leave at RMDH. We just had to wait for his ultrasound on his arm, which didn't end up happening. That is the only cloud hanging over at the moment, if the clot has moved or got bigger, Drew will have to have twice daily injections in his leg for 3 months, and we already know from last week that they sting, so everything is crossed that all is well. We wheel chaired down to the house and Drew had a little snooze. The nurses gave me good instruction on his feeding pump and there weren't any issues there and thank goodness I bought a daily pill organiser with me, he takes 4-5 tablets morning and night, plus his immune suppression drug, which he is now having in liquid form down his tube.

Monday, 5 October 2009 - Day +56

Eight weeks since transplant, nine weeks in hospital and 10 weeks from home - not that we are counting. Big surprise for Drew today, Daddy and his 2 well brothers came back down today with Quincy. Drew was really happy to see him and it lifted his spirits up - although when we got back to the room, just before the rain came tumbling down, it had exhausted him so much he slept for 3 hours. He did seem brighter when he woke up at 7.30pm than he had been for a few days. Temperatures still in the 36s, NG feeds going well, tube sticking to the side of his face is a problem though, sampling cannula (blood) on its last legs. Kyle ended up back in Emergency again tonight with stomach cramps, Mum not convinced with the eventual diagnosis, must have spent too much time around hospitals, think I'm a doctor now. Hello John Hunter thanks for checking up on Drew, hope Di's got those bravery beads well stocked for when he comes back.

Sunday, 4 October 2009 - Day +55

Another sleep in and weather still pretty ordinary. Drew's cannula in his hand that they are drawing blood from is starting to be a bit unco-operative, but the fluids one is still going strong. Drew's older brother Kyle lost his grand final in the Gold Coast Champions Cup and Kurt's beloved Eels couldn't come up with the goods today either, Drew on the other hand was going for the Storm as the Eels had knocked out the Titans. Drew didn't really have the energy or the interest to watch the grand final on the big screen and just played the playstation in his room. Big brother Kyle ended up in Emergency at Wyong tonight with severe stomach pains and vomiting - it never rains but it pours.

Saturday, 3 October 2009 - Day +54

Back on line after a little blogger issue. Drew had another sleep in today and woke up just before 3 of his brothers and Dad arrived. Unfortunately the weather was pretty dismal today, so Drew didn't get to go out of the hospital. We did watch a movie in the 'teens' room, before Drew wanted to head back - his energy levels are pretty low at the moment. I think Drew got his transplant back the front, out of bed playing the WII in week 2, and tired and sleepy in week 7. Temperatures below 37 now and blood count good.

Friday, 2 October 2009 - Day +53

Today was pretty uneventful after the last 2 weeks. Drew slept until 11.45am and then dosed on and off for another hour. The preliminary results from his endo/colonoscopy revealed he does have mild GVHD and inflammation, they started him on steroids and his temperature has already dropped under 38C - Yee Haa. They started the feeds on the NG tube and he ate a little bit as well. Apart from getting bloods out of his cannula which is already in his hand, there were no other tests, no jabs or anything so I guess Drew would class that as a good day or at least better than the previous 2 weeks. At 8.00pm he was ready to go back to sleep.

Thursday, 1 October 2009 - Day +52

Another horrible start for Drew, he awoke to Emla patches on his hands, so he knew he was in for more needles. Dr 'Gas' (Dave) came just after Drew opened his eyes and I really didn't think it was going to go well - but to Drew's magnificient credit yet again he let us do it without struggling, although under the mask he was saying "I'm not happy". The day before under the gas he was actually laughing as we were talking about 'wet willies', which is all to do with wet fingers in ears, not anything else and Dr Michelle and Lucy only came in on the tail end of the conversation, and Drew just looked at them and said "it's boys stuff". We went off to have an ultrasound on his arm, which showed that the blood clot was still there but was now non occlusive, meaning blood was getting through, so hopefully no more needles in the leg, they will recheck the clot on Tuesday. At 12.30pm we went over to the Prince of Wales Private hospital for Drew to have his endo/colonoscopy and NG tube inserted, he was starving. The procedure was very quick and everything looked 'beautiful' Dr Arvie said but to say Drew woke up less than happy would be an understatement. His NG tube had come out of his nose slightly and had to be pushed in, Drew was yelling very angrily that he wanted to go back to the ward and that he was starving and didn't want to eat their food and wouldn't let the nurse push the tube back in. Finally with the help of an orderly the three of us managed to push it back in and he went back to sleep until 8.00pm. He had a blood transfusion through the night, as his HB was a bit low and apparently it is also routine after the procedures he had undergone.

Wednesday, 30 September 2009 - Day +51

What could today bring - well at 10.30am Drew was still asleep and I had to wake him up, firstly for him to take his immunosuppressant drug which needs to be taken at the same time morning and night and secondly so I could inject the anti clotting drug. So the day didn't start overly well. The Drs needed to take blood 4-6 hours after the anti clotting drug had been given, by a different cannula. Drew was also supposed to be having a lumbar puncture, a bone marrow aspirant and an ng tube today to see if any infection can be found there, but these were postponed to next week due to the blood clot. A gastroenterologist came to see Drew as well, he thinks his tummy is OK but he is going to have an endoscopy and colonoscopy tomorrow. As Drew needed a different needle to get blood today he didn't think he had enough bravery to do it alone and wanted gas, which meant he couldn't eat, and this wasn't due to happen until 4.00pm, in between times the endoscopy had been decided upon which then meant he couldn't eat until tomorrow afternoon. He survived on 10 grapes today and was starving. Drew did go well under the gas today though and we didn't need to hold him down. One good thing about having the procedures tomorrow, meant I didn't have to inject the anti clotting medication again until Friday or Saturday, lets hope the clot just stays where it is or has already gone, he'll have a another scan to check that tomorrow too - so until then....

Tuesday, 29 September 2009 - Day +50

Drew woke up today to see me sitting across from him in his room, which made him happy. Temperature still there, surprise surprise. The CT scan didn't reveal anything and they took some extra blood to run some different tests. Drew's arm where the PICC is was really hurting today so they organised an ultrasound of it which revealed a blood clot, which in turn meant the PICC had to come out. There went the access line, so he had to have a cannula put in, the PICC pulled out and a little cannula put in his leg to inject the anti clotting medicine - it's like OMG what else can we put this poor child through. Drew was eager to have pizza for dinner but due to the above procedures being done 6 hours after Drew had last eaten at 4.30pm, under 'happy gas' he wasn't able to eat. Drew asked wasn't there an easier way (he was desperate for that pizza) and when I explained to him that yes we just put on the patch and an hour later put in the cannula he said he'd do it. Dr Michelle and I had serious doubts it could go through with it, but he did without a drama, all three procedures. The last one hurt and then Drew wanted me to do the injection into the cannula, that stung too. I WAS SOOOOO PROUD OF HIM and so were all the nurses on the ward, Dr Michelle, Lucy and all the other people who heard about it. He had his pizza (which after all that was pretty ordinary) and banana, grapes, strawberries and cream for dessert and went to bed late but happy.

Monday, 28 September 2009 - Day +49

Poor Drew spent the day alone, I can return tomorrow morning. He is so brave, he had to have a cannula inserted for the CT Scan, which went marginally better than last Tuesday. He was very cranky afterwards and wouldn't talk to any of the Drs, Nurses or me, he probably wishes we'd all just pee off and leave him alone. Drew then wouldn't take his twice daily medicine, which needs to be taken 12 hours apart, nor the special liquid for the CT Scan. I was trying to persuade him over the telephone and finally he came around and did both. Nurse Katie took him down for the CT Scan and another Echo cardiogram, so hopefully one of these will give an answer to this mystery fever. To top off Drew's day his uncle who stayed with him last night was also sick today (different sickness to me) and couldn't stay, so he will spend the night alone too. Despite all that when I spoke to him at bed time he had had a little snooze in between the last time I spoke to him and he actually sounded much brighter.

Sunday, 27 September 2009 - Day +48

Continuing the week from hell, after Drew had gone to sleep last night I fell ill with a gastro bug, apart from feeling wretched I had to leave Drew alone and was driven down to Ronnie Macs by security. Nurse Katie took good care of him, we'll forgive her being a Jets supporter. There is a gastro bug on the ward and several of the nurses have fallen ill too, so the whole ward has been shut, no new patients, infectious patients moved out and no visitors. They made an exception in Drew's case and Daddy could go in today and his Uncle is sleeping there tonight. I'm not allowed to go back for 48 hours. Drew was quite fractious today, he didn't want to have a shower, nor get weighed in the evening - he is understandably well and truly over it, which should make tomorrow's cannula insertion interesting plus he has to have another NPA (snot sucking as he says). Temperature still in the high 38s, haven't been game to ask his blood count.

Saturday, 26 September 2009 - Day +47

Drew woke up quite chirpy today, temperature still sitting around mid to high 38's. He ate reasonably well today and didn't vomit at all. The Dietitian is concerned that he has lost 10% of his weight and wants to put an NG tube back in, we have until Tuesday to show that his weight is going in the right direction, funnily enough he didn't seem to concerned about it. Dr Drew and I practised putting cannulas into a mandarin today and trying to extract juice. The extraction part didn't work to well. We went through all the different equipment used and he seemed quite OK with all that, we taped the cannula into the mandarin and showed him that its not actually the needle that stays in your arm but a little soft plastic tube - I'll keep working on it. By the time the late afternoon came around Drew had no energy and his temperature was up around 39.3. Back on antibiotics from yesterday and an anti fungal medication in addition to the one he is already on. White cell count dipped again, I didn't find out the exact numbers to day.

Friday, 25 September 2009 - Day +46

As uneventful as yesterday was, today was the complete opposite. Drew's Doctor came in at 9.30am (Mum still in pjs - its amazing the first week or so everyone is here, you make sure you're dressed before the Drs come in and by about the 3rd week if they come and you're in your pjs you don't give a toss) and said she had booked him for an ultrasound for his abdomen, at 10.00am, a bone scan, a CT scan and an echocardiogram. Quick shower and off for the ultrasound all good there, Drew was injected with radioactive dye for the bone scan and then we went back to the room for 2 hours before having the scan - all good there. Late afternoon was the CT Scan and thats where the plan came unstuck. They couldn't use the PICC line to inject their contrast dye into (he had already swallowed 300mls of some foul tasting liquid) as it would blow the PICC line so they wanted to put in a cannula - ah sorry afraid not. We took the masked man back to his room and they rescheduled the CT Scan for Monday morning and we shall put the cannula in under gas - he seems OK about that at his stage, hopefully it will go better than Tuesday did for him. His temperature hit 39 today, although his white cell count and neutrophils were good. (Bad luck Joey and Jacob, you'll have to tell the Jets, the ball has to go between the posts to win).Hello 4G, thanks for your message, when I'm feeling better I shall drop you a line.

Thursday, 24 September 2009 - Day +45

Compared to the rest of the week today was uneventful, no procedures for Drew, his PICC line is working well. Temperature went down to 37.4 overnight, but back up to 38+ today. White cell count dipped slightly. Drew went to sleep between 4.30 - 5.30pm and slept to 8.45am the next morning.

Wednesday, 23 September 2009 - Day +44

Today Drew's Dr decided they would put a PICC line (Peripheral Intravenous Central Cannula) in to alleviate the trauma involved in getting blood from Drew. A PICC line is inserted on the inside of the elbow and fed up the arm and around the corner into a vein. It is temporary and can stop working at any time, but fingers crossed his lasts for a few weeks. A PICC line can be difficult to get in the right place but Drew's went in easily, that was the highlight of the week so far. Temperature up and down, white cell count good.

Tuesday, 22 September 2009 - Day +43

Today was worse than yesterday. Drew's cannula in his right hand needed to be replaced in his other hand so blood cultures could be done and antibiotics administered if needed. The antibiotics were going to be stopped but if his temperature rose they would need to be restarted. We wanted to use happy gas again and Drew was adamant after his experience yesterday that he wanted the other drug, medasalam. Poor Drew was so angry, but unfortunately it had to be done, so the Dr administered the gas, Drs Michelle and Antoinette did the cannula and Lucy and I held the protesting Drew down whilst they put the cannula in and drew the required blood, it was traumatic for everyone concerned. Later in the afternoon we gently removed the other cannula without too much difficulty for Drew. Despite the promise of a go of the playstation on the big screen out of the room, now that he had a free hand, he was too exhausted and went to sleep at 4.30pm. One good thing to the day, he got to have strawberries for the first time in at least 43 days (wasn't allowed to have them until Day +42) don't think they tasted that great the second time round at 8.00pm. Temperature holding steady at 38.5, got a blood count today which was on the way up again. Hope tomorrow is a better day.

Monday, 21 September 2009 - Day +42

Drew had temperatures today again of 38.5, he has been taken off the 2 antibiotics and put on a different one that he hasn't had before. To take blood today he was given 'happy gas', the first attempt to get blood went well and Drew was fine, but unfortunately enough blood wasn't taken and on the second attempt the needle didn't find the vein and caused him pain and tears. His appetite is still good, he's not sweating and he isn't unwell, so the source of the temperature is a mystery. In the afternoon when he was due to have his antibiotics his cannula in his hand blocked and a very patient Lucy perservered to unblock it, so it didn't have to be removed (yet). Drew was extremely brave throughout the whole time - I don't know where a 9 year old gets this much resilience.

Sunday, 20 September 2009 - Day +41

Drew got his finger pricks over and done with early this morning and then unfortunately got a temperature, so that meant he had to have blood taken out of his arm. After 1 attempt, where he got himself all ready and couldn't go through with it at the last minute, they then attempted to hold him down - not pleasant for anyone involved. That didn't happen, so it was decided to sedate him, it was now Sunday afternoon, and due to the time and a bit of confusion as to what dose they could use 5.5 hours later, they decided to wait until Monday. No other blood results as both of his morning and afternoon finger pricks clotted. Drew did get to go in the 'teenage room' with his brothers to watch the soccer.

Saturday, 19 September 2009 - Day +40

AAAAARRRGGGGHHH!!!! This morning we awoke to be told that the cannula inserted in Drew's arm was only to be used for his antibiotics and not to remove blood, so he would need fingerpricks or blood taken from his arm. My worst fears about having his line removed have come true only 12 hours after it being done. It took 2 hours of drama and frustration and then the promise from the Doctor that if Drew had the finger prick he could have some time out of the hospital for him to bring himself to have it done. We all had the Saturday BBQ at the hospital and then went down to the unit in Ronald McDonald House for a couple of hours. Drew was in his Mariners strip and was very happy when they won 3-0 against the Gold Coast.

Friday, 18 September 2009 - Day +39

Today was the waiting game - the getting the line removed in the morning, went to going down to theatre at 6.40pm that night - Drew was starving and I was over it. The removal is pretty straight forward, they just pull it out and let the hole heal itself. Hopefully there won't be any more temperatures and the 'D' word may be that little bit closer. They also took Drew's stitch out from his biopsy and inserted a cannula in his hand whilst he was asleep to avoid any potential dramas.

Thursday, 17 September 2009 - Day +38

Drew spiked a temperature last night, which took a while to subside. The nurses started the antibiotic at 1.30am and he slept in to 10.30am. He was pretty lacklustre all day and had a blood transfusion in the afternoon. Dr Sue has decided that his line has to go :0( and he will have it removed tomorrow morning. Drew also had another NPA (mucus sucking out of nose) done today and that came back negative so he won't have to have another one done and when he is feeling well he can get out of the room :o). White cell count dropped slightly, as expected, today WCC 4.66 and neutrophils 2.5

Wednesday, 16 September 2009 - Day Too Many

Drew was so so today, feeling ok but not really interested in doing anything. GCSF which increases his white cell production stopped today and one of the antibiotics has been dropped, so he has 1 antibiotic once a day and fluids intravenously and the other 2 medications which he will be on to at least Day + 100 orally. On Friday they will repeat his RSV test, which means more sucking out of his nose :O( and until this test comes back negative he is not allowed out of the room. We won't find out definitely, whether the alcohol locks on his line worked until next Monday, as the cultures can take 5 days to grow, if the bug is still there he will need to have his line removed. Engraftment test done yesterday, but results will take 2 weeks to return. Blood count today 6.56, neutrophils 3.7 but will probably dip a little bit now that GCSF has stopped.

Tuesday, 15 September 2009 - Day +36

Today was great, Drew had a little sleep in, but was bright, happy and well when he woke up. Blood counts up to 4.59 and neutrophils 2.6. Drew is still on cyclosporin, an anti GVHD drug, fluconazole an anti fungal drug, and two antibiotics. His stitch for his biopsy (which of course isn't a dissolving one) is still in and will come out on Friday. Aunty Karen visited today and I had a nice lunch out and then tea at Ronald McDonald House too. Drew had fun playing the playstation and WII with Heather. We finished the night with me reading Harry Potter to Drew before lights out.

Monday, 14 September 2009 - Day + 35

Today marks 10 months to the day from when Drew was diagnosed with leukaemia, 7 weeks since we've been home and 6 weeks in hospital. On a brighter note, Drew's white blood count went up to 3.56 and neutrophils were 1.8. Drew had a massive sleep in today, through the Dr's visit, not waking up until 10.45am. He ate a reasonable amount for breakfast but not a lot for the rest of the day. It's a bit strange, his count his up, he is still on antibiotics and is not showing any new viruses in his blood cultures, but he doesn't really have an appetite and doesn't seem as peppy as he did 3 weeks ago - hopefully its just the whole process catching up with him and not something new brewing. Hello Nina - thanks for leaving a comment.

Sunday, 13 September 2009 - Day +34

Today was all good news and busy. Drew's white blood count jumped to 2.65 and his neutrophils jumped to 1.3, nearly tripling overnight. Dr Sue also thought she could hear less crackles in his lungs. Although his RSV results from Friday's bronchoscopy still came back as positive. Drew had visits today from Lawrie (Mariners) and his wife Christine, Uncle Bones and from Tristan and his Mum Donna and Aunty Tina. Although they weren't allowed inside they had a good chat on the phone and Drew loved the soccer ball pen Tristan gave him. Dad and the boys left in the afternoon and we had a quiet night after such a busy day. Pity about the Jets Joey & Jacob.

Saturday, 12 September 2009 - Day +33

Drew's rash is disappearing, his cough seems to be getting better, although there are still crackles on his chest and his temperature today was still a low grade fever. We have been blowing bubbles and party poppers to make him cough and clear his chest. His haemoglobin was a bit low today and he didn't have much of an appetite but still managed to play the WII with his brothers. His great Aunties came to visit this morning. White cell count dipped slightly, but neutrophils held at 0.5, which is 2 days in a row. Drew's 10Bs won their final today and will be appearing in the grand final next week.

Friday, 11 September 2009 - Day +32

We woke Drew at 8.00am this morning for his bronchoscopy, it was all rush rush, as he had to have antibiotics finish and platelets hung and be in theatre by 8.30am - we made it in perfect timing. The Drs were all nice and Drew was out by 9.30am and then he slept, and slept and slept and slept waking up at 5.20pm. Drew's white cell count was 1.94 and his neutrophils hit the magic 0.5. He spent the night playing the playstation and watching the Mariners unfortunately lose. Despite his big sleep he was ready for bed at 10.30pm.

Thursday, 10 September 2009 - Day +31

Drew had a CT scan on his chest today, which was clear. No NPA's today and Drew's rash is losing its brightness, most of the time. The Drs suspect that Drew has an infection in his central line, so he is having alcohol put into his lines for 4 hours a day, 'his own little party' for 5 days, this will hopefully kill any germs in them. Tomorrow he will have a bronchoscopy under general anaesthetic - this will get a sample of phlegm from the bottom of his lungs, which they will test for viruses, bacteria, fungi and TB (which is routine they don't think he has it). Drew was very bright and cheery today - I knew he was getting back to his normal self when one of the Respiratory Drs, who is Scottish, walked in, and without even saying good morning Drew told him Scotland had lost 1-0 in the World Cup qualifiers.

Wednesday, 9 September 2009 - Day +30

Drew woke happy until mid morning when he had to have yet another NPA, this was a 4 person hold down job - hopefully there will only be one more and that will be negative. He still had a low grade fever and hasn't seemed his usual self for the last week. As the Drs are concerned about chest, Drew had the Respiratory Team, Physiotherapist and the Infectious Disease Dr visit him today. His rash subsided slightly, and he needed platelets. Drew was pretty bright in the afternoon, but became really sad for no obvious reason, whilst talking to his brothers, he became happy just as quickly as he'd become sad, so at least he went to bed happy. His white cell count jumped up to 1.16.

Tuesday, 8 September 2009 - Day +29

Drew slept in until 9.45am this morning and woke up to another NPA, he wasn't thrilled in the slightest about that. Just after that was finished the Dermatologist Emma, arrived for Drew's skin biopsy. This involved a needle in his upper arm for local anaesthetic, then a thin cylindrical tube which bit a little chunk of skin out, and then a stitch. Fortunately, being well seasoned now, I asked them to sedate him, which they did and we all got through it fine, especially Drew, and the beauty of the sedation is that it is an amnesiac drug, so Drew doesn't remember a thing - maybe we could use that for the next NPA. His test results from the NPA and phlegm again tested positive for RSV, and his chest X-Ray yesterday also showed a little bit of cloudiness, which may be another infection or maybe just mucus. After the drug wore off today, Drew was really crabby and wasn't co-operative with the physiotherapist who came to see him, we also had a tiff, by afternoon he came good and was eating, drinking and his chirpy self. Two Respiratory Specialists came to see him and explained he needs to try and cough, so they are watching him very closely and he may need to have a 'lavage', where he will go under a general anaesthetic and they have a look in his lungs and flush them out with saline, so they can get a sample from the bottom of his lungs to check for other germs - lets hope we don't have to go there. He also tested positive for another bug, but the antibiotic he was put on yesterday should cover that one too. Shower today consisted of a bath in bed - that was fun for the back -not. White cell count dipped slightly as did his neutrophils to 0.3. We're still smiling (most of the time).

Monday, 7 September 2009 - Day +28

Drew had a bit of a sleep in until 9.00am this morning. The usual routine, weighing, morning drugs, he didn't make the shower today. He did have to have another NPA (Nasal passage aspiration), unfortunately there wasn't enough mucus (snot) sucked out so he will have to have another one tomorrow. His blood pressure was ok today after being a bit high early last night, and he was woken at 1.00am :O( to be given a blood pressure tablet. Drew's body is covered in a rash, which appears to be getting worse, he was taken off 1 antibiotic and put on another and will also have a skin biopsy tomorrow, which may or may not tell the Dr's what sort of rash it is. His white cell count went back up to 0.83 today, neutrophils still 0.4.

Sunday, 6 September 2009 - Fathers Day - Day +27

Drew woke up when the boys and I arrived at 8.00am with pancakes for breakfast. Dad had been up since 6.00am, so no Father's Day sleep in for him - must be that comfortable bed (I think I'm used to it now :O). Breakfast was eaten, presents given, a bit of WII before the boys headed off at 9.30am for Kyle's second leg of his semi-final, which they unfortunately lost 3 - 1. Drew's blood count dropped for the 2nd day in a row, this isn't the first time this has happened. The Drs believe because he had RSV (a cold), the medication to treat that and now another infection in his line, is why his count isn't rising. He does appear to have a GVHD (graft versus host disease) rash, which is a good sign - the Drs aren't worried about him so that's good. Drew also had a platelet and blood transfusion today. There is now a gastro infection on the ward, so Drew and I will be staying bunkered down in our room (no change for Drew) to try and avoid that one.

Saturday, 5 September 2009 - Day +26

Drew woke up happy this morning (the Mariners won!) and hungry, he had Rolled Oats, Froot Loops and Special K + 2 pikelets for breakfast, that kept him going until dinnertime and a vegemite sandwich. Uncle Bones and Lucy came to visit, whilst Mum went shopping for Father's Day at Bondi Junction and then the boys and Dad arrived in the afternoon. Drew spiked a bit of a temperature in the evening, but had a good night sleep. Drew was also very happy today because his soccer team won their semi-final and he got to speak to them on the telephone, Mum was a bit sad that he wasn't there - next year!

Friday, 4 September 2009 - Day +25

All of yesterdays kerfuffle (not sure if that's spelt right?) got sorted out first thing in the morning, so that was good. Today was a big day drug wise. Drew was taken off 2 antibiotics and put on another one, as he has tested positive to a staph bug. He had his final dose of the drug with no name, he became sleepy again and his blood pressure started to rise, so they wanted him to take a tablet, which was about 1/3 the size of my little finger nail . Well Drew decided he wasn't having it, so 45 minutes later after much unsuccessful reasoning (are you reading this Jodie) I held him down and held his nose, while Renee (nurse) got the tiny tablet in - and his blood pressure went down. He also had his other antiviral drug x 3 each day, which should end on Saturday. A blood transfusion and a platelet transfusion were also in order + his GCSF and by the time all that finished it was time for his antiviral drug again - lucky they are all intravenous otherwise he would rattle. By dinnertime he was back to his happy self and the playstation. A visit from Aunty Trish in the morning was nice for Drew, as he hasn't had many visitors lately. Good Luck to his Budgie team mates tomorrow - we hope you win boys.

Thursday, 3 September 2009 - Day +24

Well today was a day of miscommunications, assumptions and not writing things down, which ended up with Drew being examined by a Dr at 10.45pm, another one at 1.00am (Friday) and his Dr being rung at 1.30am. It is a too long and complicated story to relay, but it revolved around a cracked lip, which may have been a cold sore but wasn't, drugs being vomited up and given at the wrong time, blood samples taken at the wrong time and a chest x-ray, which was OK too. Drew also wasn't in a particularly good mood, but came OK by the night, until the Dr wanted to examine his mouth at 1.00am, who could blame him. White cell count dipped slightly, neutriphils dropped to 0.4 too. Thanks Jacob and Joey and hello to the Grahams in America.

Wednesday, 2 September 2009 - Day +23

Well considering he didn't go to bed until 11.30pm last night, Drew woke up in a reasonably good mood. Had bacon for breakfast, co-operated to have a shower and was generally happy. His white blood count jumped up to 0.87 and he had 0.5 neutrophils - Woo Hoo. Probably shouldn't get too excited because it may drop again tomorrow, but still :0). Drew had the immunoglobin drug today (the drug without a name), that was interesting, as the infusion rate increased and the more of the drug he had the more you could see him being affected, he went from being really chatty and about to do school work, to quietly watching Jurassic Park, to feeling sick and going to sleep for an hour or so. Drew woke just after the drug had finished and was back to his normal chirpy self, with a rash. Round 2 on Friday. I don't have a cold which was another positive for the day.

Tuesday, 1 September 2009 - Day +22

Today started off well, with Dr Frank down in Sydney dropping in to see Drew. Then Lawrie rang to tell Drew that Adrian Caceres had left the Mariners. Drew's blood count dropped slightly, but neutrophils stayed at 0.2 - Doctors are happy with that, only seems to be Mum who's worrying. I had a sore throat and elected to have a nose and throat swab to see if I have a cold, as I don't want to reinfect Drew. Unlike Drew I would rather have my nose swabbed than my throat any day. The day went downhill when it was shower time for Drew, he didn't want one, didn't have one and didn't talk to Laura (nurse) or myself for the best part of 5 hours. He also had a blood transfusion, which required 2 bags of blood, which came from 2 different donors. The first bag was fine, but Drew had a reaction to the second bag and came out in a rash, his blood pressure went up and his heart rate went down (apparently normally the opposite happens if you have a reaction) and his temperature went up. In himself he was fine, but he had all the Drs come around for the 2nd time today. Consequently, the new drug that he was due to have was put off until tomorrow. At least by the end of the day he was back to his happy self - we'll see what tomorrow brings.

Monday, 31 August 2009 - Day +21

Drew's temperature has been stable today, but his cough has continued and is pretty hacking. Drew has been taking an antiviral drug called ribaviran and the Drs have arranged for him to have an immunoglobin drug in conjunction with the ribaviran to hopefully prevent Drew getting pneumonia, which he has shown no signs of yet, but is susceptible to. The drug which doesn't even have a name at this stage, had to be signed off in America for Drew to be able to receive and as they were asleep, that won't happen until tomorrow. His white count went up slightly but not as high as it has previously been and the neutrophils are still sitting on 0.2. No bone pain as yet (I probably shouldn't have written that because now he'll no doubt get some), but he did need platelets today.

Sunday, 30 August 2009 - Day +20

Drew spent most of today alone, as his brothers headed back around 10.00am for Kyle's soccer final (which they won the first leg - must have been the song Drew wrote) and Mum was downstairs at a Children's Cancer Seminar (which was very interesting, but also very overwhelming in accepting that this is an ongoing lifelong experience). He did well and was even asleep when Mum came up to have lunch with him. Drew's chest x-ray from the previous day was clear, but the white count has stayed the same. No temperatures today, appetite has gone off a bit.

Saturday, 29 August 2009 - Day + 19

Drew had a restless night, with his temperature reaching 39.5 through the night. He wasn't very happy or well when he woke this morning. His white count had dropped slightly again, so the Drs are going to double the medication which increases the growth of white cells (and causes Drew bone pain, which has subsided over the past couple of days). The 'snot' test and swab as well, was on again today - Drew was over the moon - NOT. The results came back and he has a common cold, not swine flu - although even common colds aren't good when you've just had a bone marrow transplant and don't have very many white cells. He picked up when his brother's came and Kyle put his lego set together, which Drew received for doing excellent school work last week. Hopefully those white cells will show a nice little jump tomorrow.

Friday, 28 August 2009 - Day +18

Drew's cough that he has had since the beginning of the week, seems to be getting more phlegmy, rather than just a dry cough and his runny nose is back. hmm. He had to have a mucus (snot) sample taken (they stick a thin little tube up his nose and the other end is attached to suction, to suck it out - beautiful). Unfortunately, they didn't get enough to run the tests, so he'll have a rerun tomorrow. Mid morning he developed a temperature of 38.5, so antibiotics were started, and the other antibiotics he had been on in case he had a skin infection, which proved negative were stopped. He was also started on Tamiflu in case it was the dreaded swine flu returned. Despite the above Drew was in good spirits today, he beat me in bowling 3 games to nil, finishing off with 3 strikes just to rub it in. He did a fair bit of school work too. His white cell count dropped slightly again, but his neutrophils stayed steady at 0.2.

Thursday, 27 August 2009 - Day +17

Drew was low till about lunch time today. Barbara his ward nanny came, but Drew didn't want me to leave today. So we all played bowling on the WII, with Drew winning one and I won two, with Barbara missing the boat. We then watched Space Chimps and Drew was back to his normal self. His white count went back up to 0.52, with his neutrophils staying at 0.2 for the 5th day in a row - all perfectly normal apparently. Something exciting happened today, - he was allowed to leave his room with a mask on and do one lap of the ward. He got to see Cooper, a friend he made at Ronald McDonald house. Coop is recovering from a 5 1/2 hour operation he had on Wednesday.

Wednesday, 26 August 2009 - Day +16

Drew's white cell count dipped slightly today, but that is normal, his temperature was slowly going up, but stopped at 37.9 and went back down. His bone pain also didn't seem as intense today, but his spirits are a little low. He is missing soccer, cricket and just being a normal kid and doesn't know his place in the world, he told me. Drew's appetite on the other hand is still going strong. He has been making up songs with the music therapists and may be a budding rock star.

Tuesday, 25 August 2009 - Day +15

Drew's white cell count went up again today and he has .2 neutriphils, when they get to 0.5 for 3 days in a row that means he has engrafted (stage 2). Again apart from his bone pain, which is a side effect of one of the drugs he needs to take, to encourage his body to make white cells, he is in great spirits. Drew's food intake is awesome, even the Drs got a bit sidetracked this morning as they watched him devour, 2 fried eggs and 3 rashers bacon, after a bowl of coco rocks!!! Apparently this is quite rare at Day +15. We WIIed today, Drew winning 2 games of bowling to my 1. His record Aunty Donna was 232 pins. Any of Drew's friends or family reading this blog who have skype are more than welcome to ring him, just text me first so we can make sure we are ready. Thanks for the message Joey and Jacob, notice there was no mention of the Jets this week. :0)

Monday, 24 August 2009 - Day +14

The Doctors and Dietitian were so impressed with Drew's eating, that his intravenous food (TPN) was weaned down through the day and taken off tonight. Drew's white cell count is increasing and all is going well, with only his increasing bone pain bothering him. Drew did some schoolwork, played the playstation and the WII with Barbara.

Sunday, 23 August, 2009 - Day +13

Today I played the WII with my brothers, we played bowling and Kyle won. After the boys and Dad went home I played soccer on the playstation and watched the movie "Rainman" with my mum. I ate heaps today, no nose tube for me.

Fun on the WII

Saturday, 22 August 2009 - Day +12

Drew has needed a bit of pain relief as he has been suffering a fair bit of bone pain, particularly at night. This is due to one of the drugs he is receiving, which promotes white cell growth. He also had a dressing change today, which due to the sensitivity of his skin, took 90 mins to get the dressing off, I think everybody was relieved when it was off. Mind you, Drew ripped the last bit off and was no where near as gentle as Laura (the nurse) and I had been. Drew enjoyed a nice freshly cooked chicken for dinner (he can't have food that has been cooked for more than 30 mins), with his brothers and enjoyed beating the nurses (Laura and Katie) at bowling on the WII.

Friday, 21 August 2009 - Day +11

Drew spent the day with Aunty Trish, making music with Zerifa and of course playing the WII, whilst Mum went up to Newcastle to surprise Kurt at his regional public speaking final, picking Dane up along the way. Kurt spoke really well, he didn't win, but received a highly commended. Mum and his school teacher were both very proud.

Thursday, 20 August 2009 - Day +10

Drew's white blood count is on the upward trend, which is a good sign. He needed a platelet transfusion today, but is going well. The Dietitian said if Drew keeps eating the way he is, he may prove her wrong and be the first patient not to need a nasal gastro tube, and he is determined not to have one put back in. Heather (the play therapist) put a WII in Drew's room today and he had fun with both Heather and Barbara (Ward Nanny) playing bowling and baseball.

Wednesday, 19 August 2009 - Day +9

No sadness today. Rash still there, Doctors stopped one of the antibiotics Drew was on to see if the rash will go away. Tomorrow is day +10 so engraftment can happen any time from here on in, typically around Day 21 with a cord blood transplant. Drew did some music with one of the Music Therapists, some reading, maths and grammar today. We are also nearly at the end of Harry Potter's 'The Philosopher's Stone", which he is enjoying greatly. Watching RPA tonight (we can't get enough of hospitals), Drew even recognised one of the drugs they spoke about that he had had.