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.