Monday, 15 February - Sunday, 28 February 2010

Drew has had a pretty good 2 weeks. Monday we were off to see Dr Frank and all went well and then Tuesday we went to see the Opthamologist and Drew thought he'd won the lottery. Normally he would have eye drops put in which help the Dr look at Drew's eyes and they sting quite a bit, but the Dr was happy not to put them in today and Drew was ecstatic. The rest of the week was spent at school. On the weekend we had a great weekend away with Camp Quality at Riverwood Downs, Monkerai Valley. All the boys had a great time in the river on the rapids and in the great hall playing tennis and other ball games, the food was great and it was very relaxing. Sunday was Kurt's birthday and he was presented with a birthday cake at breakfast as he and Kyle were leaving early for the start of their football season. They had mixed success, the birthday boy didn't get a win, going down 5-2, but Kyle's team came from 2 nil down to win 3-2. Monday we were back at John Hunter for Drew to have his 6 monthly bone marrow aspirant on a different ward to usual. It was a marathon day, arriving at 7.15am, Drew wasn't called to theatre until 12.20pm, we still didn't go up to theatre for another 30 minutes. Once we arrived up there an emergency caesarian had to be done (on someone else, not Drew), so we were told it would be another hour, which turned into 2 hours. Drew finally went to sleep at 3.00pm, to his credit he handled it well, Mum on the other hand wasn't impressed. We returned to the old familiar ward as the one we were originally admitted to had shut for the day, if that doesn't say something I don't know what does. Finally at 7pm that night,for what is less than a 30 minute procedure, we left for home. Fingers crossed the results come back negative. Drew wasn't able to compete at his swimming carnival the next day, but went to cheer his brother Dane along. Wednesday afternoon was Drew's football grading, he was very excited about that. The weekend came around again and this week the results were reversed with Kurt having a 4-0 win and Kyle a 5-2 loss. It was a very hot day and although being a reluctant spectator, Drew handled it very well. Back to hospital for blood tests tomorrow.

Monday, 8 February - Sunday, 13 February 2010

Off to school on Monday and then off to the Mariners postponed game on Monday night. They beat the Jets YEAH, Drew was impressed. Back to hospital on Tuesday for bloods. His kidney function was about the same as Thursday but as Drew was finishing the acyclovir today, the Dr's were hoping it would return to normal - he just has to drink and I have to watch him, but he has been fine. Off to school for the rest of the week without any hitches. On Friday the dog must of decided it had been a bit of a quiet week for me and he would liven it up - he had a seizure only I didn't know that at the time, he was just shaking and then went limp and I thought he had died. I rushed him to the vet and kept thinking on the way how am I going to tell the boys, their dog who was perfectly normal this morning had died. Thankfully he was fine and came home later that afternoon and was running around the backyard. Drew's Make-A-Wish hasn't come through yet, but they are trying really hard and there are a few other kids who have also asked to go to the World Cup. The Make-A-Wish Foundation gave Drew 2 tickets to see the stage show of Top Gear, which he really enjoyed and thought was the best show ever - he couldn't of done that a few months ago. Back to hospital for bloods tomorrow and to see Dr Frank, hopefully all will be well and we won't have to go back this week.

Monday 1 February - Sunday 7 February 2010

It has been a bit of a mixed bag this week. Drew went off to school on Monday and Tuesday but has been quite grumpy. I'm sure it's taking it out of him but he refuses to admit he is tired. He definitely wasn't 100% because we had prawns for his brother's birthday, the first time in over 6 months for him and he had 1 and put them in the fridge for the next day. He got one of the Library Monitors positions so he was quite chuffed about that. On Tuesday a little sore which looked suspiciously like a cold sore appeared at the side of his mouth, so it was off to the local Dr on Wednesday morning, who conferred with Dr Frank and Drew was placed on acyclovir and then off to school. Thursday was back for bloods, which went without a hitch, and then to see Dr Frank. All was good and Dr Frank stopped his steroids and didn't want to see Drew until Monday week. Drew and the boys went for a swim in an indoor pool that afternoon and then on the way home we got a call from Dr Frank that Drew's electrolytes and kidney function were a bit dodgy and he would have to go back the next day for another blood test. The next day we had a blood collector who we hadn't had before and she used the arm which can be a bit hard, well she couldn't get blood, Drew was screaming as she dug around and I was just knotting up inside. I took him out and let him calm down and after a while, to his credit, he was ready to go back and have another go, we then got the collector who did it the day before and he doesn't even feel it go in and it is done and dusted in 30 seconds. His kidney function his slightly better than yesterday but still not great, so now we will come back on Tuesday for more bloods. All his brothers soccer games and the Mariners were cancelled on the weekend due to the rain and he couldn't go to the cricket nets so he was a bit disappointed about that, but glad he wasn't in hospital.

Monday 25 January - Sunday 31 January 2010

Drew had a huge week this week. Back to see Dr Frank on Monday & bloods, which were no problem. Dr Frank has reduced steroids to every 2nd day and doesn't want to see Drew until Thursday of next week. Yeah! Australia Day Drew wore himself out swimming in our neighbours pool for about 3 hours once the sun had petered out, he was exhausted but happy. Wednesday was a trip up to John Hunter to see Jodie and iron out any anxieties we may have about going back to school (Mum has plenty) tomorrow. Thursday the big day arrived, Drew was so excited, we walked to school, he was looking for me when they went off to class, gave me a big wave and off he went. The other Mum whose little boy returned to school after his treatment from cancer, had tears in her eyes as well, but we both held it together. I couldn't stand it any longer and 30 minutes before bell time I had to go up to school. Drew had a great day and was all ready for Friday. Today he walked there and back. He has now been at school longer than for the whole of last year. Saturday was another huge day with Drew registering for football (soccer), he's disappointed the season doesn't start until April. Sunday was out for dinner to celebrate big brother Kyle's 15th birthday tomorrow.

Drew's busy weekend

 

Sunday 17 January - Sunday 24 January 2010

No hospital this week, although we do go back tomorrow for bloods and on Wednesday to see Jodie. Drew had a good week and a very busy weekend, full of firsts. We went to see the Mariners for the first time this year on Friday night, and were lucky to have the comfort of an air conditioned corporate box, it was sooo hot. On Saturday night we took the boys to a Camp Quality event at the drive-in, the boys loved it and could finally get the concept of what a drive-in was. They thoroughly enjoyed pizza, ice cream, soft drink and chips and that was before the movie began. Today we went on a picnic, the boys played cricket and Drew had his first swim in the ocean in 12 months, even the dog came. The countdown for school is only 4 days away!

Sunday 10/01/10 - Saturday 16/01/10

It was so normal a week it was scary. Drew went up to John Hunter on Wednesday and had his blood taken, by Sandy again, without any drama. We still did breathing and he listened to his ipod and didn't look at the needle. He was so excited and proud of himself when it was done and I was relieved. We saw Dr Frank, who was back from holidays and he reduced Drew's steroids back to 5mg and we haven't had any problems so far. Frank asked Drew what he got for Christmas and Drew replied 'not prawns!' We don't go back to the hospital now for 12 days, our longest stint away in quite a while, at least 6 months - Drew was excited about that too. His learning assessment came back and he did very well, Drew has kept up with the kids in his year, although he is a bit apprehensive about returning to school, which is quickly approaching. It will be like sending him off to kindergarten all over again - hopefully I won't cry till I get home. Fingers crossed all stays well this week.

Sunday 3/01/10 - Saturday 9/01/10

Drew has enjoyed a bit of time at the cricket nets, cricket in the backyard, playing the play station this week. The hospital visit went pretty well on Wednesday, we'd been 'practising' all week and he was confident, but came unstuck just at the crucial moment. The blood collector was very good and told him she'd been doing this for 36 years, probably longer than Mummy had been alive (er not quite). She showed him the needles (which I wasn't sure was a good strategy at the time), but he pulled himself together and it was over and done with in 10 minutes. Drew was very relieved and proud of himself, and I was just glad it was over for another week. As Drew had been feeling a little sick in the mornings, the Doctors put his steroids back up to 7.5grams a day. All has been good since, so maybe he will be on them a bit longer than planned, which means he also has to wait for his prawns, much to his dismay. On Thursday one of Drew's good friends from kindergarten, Joseph came over to play, they always have a good time together. Friday night we went to the beach, Drew's first time since before his transplant, he just laid in the sand at first and splayed his arms and legs, before getting into 'World Cup Beach Soccer' with his brothers. All in all a good week, lets hope its topped off by the Mariners winning tomorrow night. Until next week :0).

Saturday, 2 January 2009

Drew piked out of going to the beach to go for a walk this morning - it was raining. The boys amused themselves today without any fighting. The cricket nets were thwarted by a downpour. Drew's appetite is very light, so hopefully his GVHD isn't going to rear its ugly head again, and hopefully I haven't jinxed us by typing that.

Friday, 1 January 2010 - HAPPY NEW YEAR

Happy New Year! Drew woke up at 6.00am, after going to bed at 12.45am, to go to the cricket nets - I told him to go back to sleep, which he did till about 8.00am. A lazy rainy day and the boys went down to the cricket nets in the afternoon for about 2 hours.

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.