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.
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.
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