Normal November

We still have a few days to go until the end of the month so hopefully I'm not jinxing us but this is the first November in 2 years that he hasn't been in hospital. Drew celebrated his 11th birthday swinging from the trees at Treetops. He did 1 more course than his mother and younger brother and with a lot more ease. He celebrated McHappy Day for lunch (he loves it when it falls on his birthday and it has extra special meaning now) and a BBQ with friends for dinner. The next day was his 2 year anniversary since diagnosis and he actually managed to get through this weekend without being admitted to hospital. Two weeks after coming home from Sydney last year he got an infection and was back in hospital for a week. He restarted his immunisations after having his immune system checked, they hurt and he cried but he didn't struggle just let the Doctor do what he had to do - unfortunately he has to go back in 4 weeks and then 4 weeks after that again for another 2 each time - after that they are a bit more spaced out, but will take 12 months to complete the whole schedule. The last piece of exciting news - Drew stood for school captain and was named as one of the 4 boys who will be named as Captain, Vice Captain and 2 prefects on the 9 December at Presentation Day. He was pretty excited and Mum had tears in her eyes, so until then......

Ordinary October 2010

On the 24th of October it was our 12 month anniversary coming home from Drew's transplant in Sydney. The last 12 months have gone incredibly fast. Drew has come a long way in that time. It took 3 goes to get his blood on our hospital visit this month, but there were no tears, he just sat back and let them do it, unlike last year when we had to hold him down and coax him to get it done on the first time. He said "It was just like I was my old normal self Mum". He also tried out for representative soccer and made the U13's side as a goalkeeper. He was very excited and despite Mum's reservations we went ahead, because he has always wanted to play rep soccer and who knows what life holds in store. (Mum is quietly hoping for a growth spurt soon).

September 2010

Sorry its been a while coming, I've been waiting for bits and pieces to happen to Drew and they've just taken a while. He had his last bone marrow aspirant in September and the results were all good. He survived Mum being in China for 10 days with his 2 older brothers and Mum survived without Drew too. We were only home 1 day before Drew was off for 5 days with Camp Quality - where he had an absolute ball.

Anniversary August

Drew achieved a few milestones this month. The first being his 1 Year Bone Marrow Transplant Anniversary. It is hard to believe how fast that 12 months has gone and how well Drew has been!!! Touch wood! A whole season of soccer, where he didn't miss a game unless he was galavanting around the world. Drew also had his 'first temperature' and cold since he was diagnosed where we didn't have to do anything - no rushing off to John Hunter - just a panadol and two days off school (his first all year due to illness). He was due to have his last bone marrow aspirant since his transplant, but this had to be postponed due to his cold. Another huge milestone was Dr Frank finished Drew's last 2 medications on 30, so Tuesday 31 August 2010, was Drew's first day without any medication since 14 November 2008. He went off on school camp the next day, for 2 nights and 3 days - he had a great time, and Mum survived too. The further we go in this journey and the more people we meet, the more I realise how 'fortunate' we are, there are so many complications during treatment, that can happen which Drew didn't experience, and Drew and I have had the opportunity to go overseas and with the rest of the family, as well as just spending time at home, that many others don't get. Drew isn't classed as a survivor until he has been in remission for 5 years, so we still have a long way to go and then they start to look at late effects of the treatment. It can be depressing in some ways, because you start to realise that although the treatment has finished there really is never a 'finish line', it is never really over, but the either side of the coin is that to suffer late effects you have to be a survivor - to be a survivor you have to be living and that is worth everything.

Just July

July was a lot quieter than the previous 2 months. Drew and his brothers enjoyed the wet school holidays and another rest from school. The last 2 weeks of the month threw up a few challenges, we lost our cockatiel, our dog got attacked by an American Pit Bull who dragged him out of my arms, sadly Paddy passed away, my accelerator pedal broke (on the way to Paddy's funeral) and Peter has a pinched nerve in his back. The dog surprisingly survived, with relatively few injuries, the cockatiel was returned the day after the dog attack (11 days missing), I arrived at the funeral on time (thanks to a friend) and well Peter has still got a pinched nerve. At the end of the day, or rather month, the important thing is, Drew and the rest of us are all healthy (touch wood) and appreciating what we have.

RIP PADDY - 14.8.98 - 22.7.10

Sadly Paddy (the young boy who had relapsed in last post), lost his courageous battle against cancer last Thursday.

South African Photos

The World Cup

We set off from Sydney on Friday 11 June with Mike, Drew's Make-A-Wish volunteer coming to see us off and give Drew an Australian Jersey. We arrived in Perth in the afternoon. We met the other Make-A-Wish family who we would be travelling with. They also had 2 boys Jack and Harry and we hit it off straight away. All the boys had a photo shoot with the West Australian paper and afternoon tea. Our suite was huge and we all enjoyed the spa, except for Drew because of his dry skin. We left bright and early the next morning for our flight to Johannesburg and then on to Cape Town (arriving Sydney time 5.30am) so we were all pretty tired. Up early next morning for our flight to Durban, where it was much warmer than Cape Town. We all needed a bit of a rest in the afternoon, before getting ready for the big game. We were all decked out in our Socceroos gear and the boys were armed with their vevezulas. The crowd was huge but there were no dramas getting in and the stadium was magnificient. We were there 2.5 hours early but the time flew and the atmosphere was like nothing we had ever experienced before. Our seats were four rows from the front and behind the German bench. Although the result wasn't what we hoped for, it was an amazing experience. The next day up early again and off on a mini safari. We saw zebras, giraffes, blesboks, elans and wildebeest in their natural environment. The boys also got up close and personal with a baby crocodile and python, before we were back to the airport for our return flight to Durban. The next day we just chilled out around the hotel, sleeping in, watching football, although I did go shopping and we had a nice dinner at the hotel with Jen, John, Jack & Harry. We spent Wednesday on the City sightseeing bus. Cape Town has an amazing aquarium and we had a tour of the city and District 6, which was a contenious area in the apartheid era. We also went up to Tabletop Mountain in the cable car, it was a fantastic view, although foggy and very cold. The shark diving was cancelled due to a large swell :o), so we had our own tour guide and went down to Cape Point. We went and saw a seal and penguin colony along the way and baboons on the side of the road too. Friday again the boys hung around the hotel, anxiously waiting for Jack & Harry to return from their overnight safari for a game of football on the lawn, whilst Mum hit the markets for the last minute buys. Friday night were we fortunate to get tickets to the England vs Algeria game, again the atmosphere was incredible, although England didn't play particularly well. The next day it was time to go home - already. We had an amazing time and shared it with a wonderful family, which really made the trip. None of it would have been possible without the Make-A-Wish Foundation, so thanks to all involved in making Drew's wish happen. I was brought down to earth when we returned home and appreciated our trips and our good fortune, even more. A boy around Drew's age that we met on Drew's return from Sydney had his bone marrow transplant in April and all appeared to be going well before we left. When we returned I found out he had relapsed. Our thoughts are with him and his family in this distressing time.

NEWSFLASH - JABULANI JUNE

For those of you not as fanatical about football as we are and perhaps living in a cave this month is the Fifa World Cup and ..... DREW'S WISH TO GO HAS BEEN GRANTED BY THE MAKE-A-WISH FOUNDATION AND WE FLY OUT THIS FRIDAY FOR 8 NIGHTS. WE GET TO SEE THE AUSTRALIA VS GERMANY GAME!!! YES I AM SHOUTING BECAUSE WE ARE ALL SO VERY EXCITED. We shall have lots of photos!!!

NORWAY

MAGIC MAY

Drew has had a really good time in May. He returned to school briefly and completed his NAPLAN tests, the last one on the day we flew out, and then went to Norway for 10 days. He was a very intrepid traveller, taking the long flights in his stride. We met Kristin, Damian and Damian's brother Chris and his Fiancee Narimon on our second day in Norway. We walked and walked and walked and Drew didn't complain once. We had a beautiful dinner at Kristin's Mum and Dad's and were introduced to some beautiful Norwegian cakes. We spent National Norwegian Day watching the parade and indulging in Hot dogs and ice cream - a Norwegian tradition. We travelled on the train and the famous Flam Railway - Drew loving trains, was in his element. We spent 3 days in Bergen, walking 1/2 way up the Floiboyen hill, because we missed the station at the bottom, despite the fact we were only about 10 metres away from it. It showed how far Drew has come and how fit he now is, 9 months after his transplant. The wedding was beautiful, Kristin and Damian both looked gorgeous and a lot of planning had gone into the day. Drew and I felt right at home and partied on until 2.00am in the morning. Our last day was spent having lunch with the Aussies at a farm in rural Norway, before flying out the next day. It was a fantastic trip and we both enjoyed all of it and every hot chocolate we had. We finished the month off with a visit to see Dr Frank and all was good.

AWESOME APRIL

Drew has had an awesome month. Finishing the school term with only 2 days off, due to medical appointments. Easter was spent at home and Drew is now on fortnightly visits to Dr Frank. He has finished on his immune suppressant drug and is only on 3 medications now. He does have a peculiar rash so we are off to a Dermatologist to see what that is about. In the school holidays we went gokarting (that was a scary look into their future driving skills) and went to Sydney and met the Sydney Swans (they were really nice guys) and saw How to Train your Dragon at the IMAX theatre. Back at school the cricket team made it through to the 3rd round before being defeated and Drew ran 3km in the school cross country and came in 16 out of 27 kids - Mum had a few tears in her eyes. The soccer season has kicked off and Drew is finding being in goals challenging when he gets chipped over his head, (he needs to grow a bit)- the rest of the family are just enjoying the fact he is back out there amongst it. Although I couldn't get medical insurance for Drew's leukaemia, as we have a medical agreement with Norway we have decided to go and will fly out on May 13 (lets hope thats not unlucky). Drew is very excited, hopefully that Icelandic volcano will behave itself and all will go well :o)  

Monday 15 March - Sunday 28 March

A HOSPITAL FREE ZONE WEEK - Dare I say these are becoming more frequent. I look back on this time last year when we were practically living at the hospital - it is SOOOO much nicer. Drew had a great week, he made his cricket debut of any kind on Friday in the school cricket team - taking 4 wickets, 5 runs not out and a win for the whole team - he was very happy. On Saturday he backed up for Football, playing half a game in goals and half a game on the field - that was a bit of a stretch for him, but to his credit he lasted the whole game. He is looking fantastic, but hating his curls, which of course everyone else thinks are beautiful. Dr Frank has given the tentative all clear for Drew to travel to Norway for Dr Kristin's wedding, we just need to be able to get travel insurance, so fingers crossed. Drew played cricket again last Friday, with another win and him bagging a wicket, although he didn't get to bat this week. He was a bit disappointed about not making the school soccer team, but that can be a goal for next year! He is slowly weaning off his cyclosporin. Drew was very excited to talk to Kristin and Damien and Kristin's Dad on Sunday night, with Kristin pointing the camera outside so he could see the snow.

Monday 1 March - Sunday 14 March 2010

Drew has had a good two weeks. We have been back to the Hospital twice for bloods and to see Dr Frank. All is good, Drew's MRD (Minimal Residual Disease), which is what they test when they take out his bone marrow is negative, for Leukaemic cells, so that was great news. We tried his 'dicky' right arm when we went for blood last time, it slowly gave blood but there was a big clot in it which meant we couldn't use that blood, so we've given up on that up for good. Drew got a bit upset, but within 15 seconds he put his other arm out and it was all over in another 20 seconds - he has come so far in the last 3 months. If I had a video of Sydney trying to get blood from him and now, you wouldn't think it is the same child, he has a huge amount of mental toughness. School has been good, and Drew is coping well. He has come early twice, once I'm sure he wasn't feeling 100%, but the next time a couple of days later I'm not so sure. He made the school cricket team which he was thrilled about. Last weekend was supposed to be his first game of football (soccer) since he was diagnosed, unfortunately on Friday afternoon the skies opened up and the game was cancelled, Drew was devastated. He didn't talk to anyone for 3 hours and refused to eat breakfast. This week however, the weather was great and the game was on. It was quite emotional to see him out there and think about the last 16 months. His team mates and their parents were all happy to have him back.

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.