Friday, 29 May 2009

Drew woke up early, being sick - not a good start to the day. Back to John Hunter today and we were on a different ward, as it was only a day procedure - Drew wasn't overly impressed to start with. He went to theatre to have his portocath removed and a central line inserted. (the difference is a port is totally enclosed under his skin and a central line has two lines dangling down his belly). The procedure took twice as long as they said, due to difficulties getting the line in the right spot, I must admit to being worried. Drew spent over an hour in recovery and had quite a funny taste in his mouth, he also had a cut where they had taken out the port, a cut in his neck where the new line was inserted plus the incision where the line comes out, his stomach was quite a sight. Once back on the ward he brightened up pretty quick and demolished some Jatz and was allowed to go home at 3.15pm. He was quite happy and hungry at home and hasn't been in any pain - so far.

Thursday, 28 May 2009

The boys' school held their 'Biggest Morning Tea' today. Drew came up and apart from going home with a feast of goodies, spent some time with Logan, who is a little boy who goes to Drew's school, who also has cancer (neuroblastoma). Logan underwent a stem cell transplant in March and is going well, he will soon return to Sydney for 6 months treatment. Drew saw Logan's central line, which is what Drew will be having tomorrow, and Drew showed off his port bump, for the last time.

Wednesday, 27 May 2009

Today was Education Day at school, so Drew went over the road to Ken and Ruth's, armed with some school work. Drew's classroom has a special corner set aside as 'Drew's Corner', where they put his newsletters that he sends to the class. Drew was in good spirits and well for most of the day, with a bit of vomiting just before bed, set off by who knows what.

Tuesday, 26 May 2009

Drew had a little nausea today, but it passed quickly, with an Ondansetron tablet to help keep it at bay. School work, which he is going great guns at the moment, playing with his brothers and taking chocolate crackles up to school for his brother Dane's birthday, filled Drew's day today.

Monday, 25 May 2009

Drew got stuck in to his school work today, he is enjoying working out of his own workbooks. He did his class newsletter as well as some spelling and maths online. He has a little bit of nausea on and off, but is full of beans otherwise. We have let Dane out of the toy room, as his chickenpox seem to be all dried out , much to his relief.

Sunday, 24 May 2009

No soccer today so Drew enjoyed a bacon and egg breakfast, scallops and chips for lunch and muffins for dinner, plus snacks in between - making up for his lack of food intake yesterday. Peter's Aunties came up to visit and we all had a nice day.

Saturday, 23 May 2009

Today was a waiting day - we couldn't go home before Drew's methatrexate levels dropped to below .25, which they did on his third test and dose of folinic acid. So at 8.30pm we set off much to Drew's delight. Drew enjoyed playing with Henry again today on the computer and the Starlight machine.

Friday, 22 May 2009

Today was a good hospital day, the weather was hideous outside, cold, very windy and raining. Drew's chemo finished at 12.30pm and by any luck we will be able to go home tomorrow, if his methatrexate levels have fallen to below .25. At the first test when the chemo finished it was 25. Drew avoided another finger prick test (thank goodness) and they will test the blood when they take it from his line. Drew's friend Henry, whose baby sister Abbie is in hospital, came and spent the afternoon with Drew, playing computer games. I think they both had a pretty good time.

Thursday, 21 May 2009

Drew had his heart scan early this morning which showed no changes to his heart. He went up to theatre early today for his bone marrow and triple intrethecal methatrexate, and was his usual chirpy self, its like he has happy gas before he goes up there, he's bouncing off the walls that much. Drew woke up nicely as well, but was a bit sick from the anaesthetic today, only the second time that has happened, but today was the worst. Chemotherapy (high dose methatrexate) started at 12.30pm and by mid afternoon Drew's nausea had gone and his appetite was returning. He managed a bit of school work tonight at his own request. Unfortunately, Drew's blood sugar levels were high and he had to have a finger prick test and another during the night - his aversion to needles now extends to all of them, so again it was another two battles, but it was done and over with relatively quickly. The only other 'exciting' thing to happen tonight, was my mobile phone falling in the toilet when I flushed and it is now 'flushed away'.

Wednesday, 20 May 2009

Back to hospital today for a blood test and a visit to the Psychologist for both Drew and I. Jodie was lovely and both Drew and I feltcomfortable talking to her. Drew's bloods were good, HB 96, Platelets 166 and neutrophils 2.5, so we were soon on our way home. Unfortunately we got a call at 4.00pm, telling us that we actually had to come back at 8.00pm tonight, so Drew could be prehydrated in readiness for tomorrow's chemotherapy. When we got to hospital I also had to tell them there is a good chance Dane has a mild dose of chicken pox. Although Drew is vaccinated the chemotherapy wipes all his immunisations out, and having chicken pox and being immune suppressed is not a good place to be, so poor Drew had to have an injection in each thigh to counteract the possibility of him getting chicken pox. As Drew now has a high aversion to needles in his thighs, you can imagine the scene that followed, once it was over he came good pretty quickly.

Tuesday, 19 May 2009

Drew again did a fair chunk of school work and was counting down the hours till tonight. We were lucky to have VIP parking arranged for us which meant we could just about walk straight into the gate. Drew and Daddy were given their 'official passes' to enable them into the dressing room. Drew was his 'usual shy self', telling the Mariner boys they had to score and that Danny had to keep a clean sheet. Lawrie presented him with a No. 14 Mariners Asian Jersey, Drew was rapt and slept in it tonight as well, it is fairly large on him, so I'm sure he will wear it out before he grows out of it. Drew was on cloud nine when he came back to the box, which had also been arranged for us - the only down part of the night was the fact the Mariners didn't win and the disgraceful display by the opposition in the last 10 minutes of the match.

Monday, 18 May 2009

Drew was very enthusiastic about his school work today and got stuck in and did quite a bit, no visits to hospital today and Drew is feeling well and looking forward to tomorrow night.

Sunday, 17 May 2009

Drew enjoyed bacon and eggs for breaky, a leisurely morning at home, a bike ride in the afternoon which pooped him out a bit, and a surprise visit from a certain Scottish Football Coach, which was the highlight of his week. He did have an aching leg, which panadol fixed, hopefully just caused by all his activity after 9 days in bed, not doing anything.

Saturday, 16 May 2009

Today Drew ventured out to watch Dane and Kurt play soccer, for a win and a draw. He got to see some of his mates from the 10A's and 10C's which made him happy, he did say at one point during the game, that he really wishes he could play soccer - hopefully, everything crossed, this time next year he will be.

Friday, 15 May 2009

Drew didn't get any temperature spikes overnight, his neutrophils had jumped to 1, he was making his own platelets and his haemoglobin level was good, so Dr Frank let us go HOME!!!!! Drew was very happy.

Thursday, 14 May 2009

Drew woke up well, and he has .3 of a neutrophil - Dr Liz said he may be able to go home soon, as long as he doesn't spike any more temperatures. Block 3 of his intensive chemotherapy will start Thursday of next week, when apart from having his bone marrow aspirant and lumbar puncture Drew will have his portacath changed to a central line. A bonus of this in one way is the lines are outside his body, so he won't have to have a needle to access his port, the bad thing is because there are external bits (I'm sure there is a proper name for the bits) there is more chance of infection. Drew did some school work and had another visit from two of the Newcastle Knights.

Wednesday,13 May 2009

Drew was good today, his haemoglobin was low so he had a blood transfusion in the afternoon and only had 1 slight temperature all day. He is still on two antibiotics and an anti fungal once a day. Drew did some school work in the morning, getting 100% in his spelling test and spent the afternoon with Kate and Yvette cooking pizza, which we had for dinner - old Ready Steady Drew did well (he loves that show). Dr Frank was back from holidays today and stopped to pop his head in.

Tuesday, 12 May 2009

Drew had a huge sleep in today, not waking up till 11.00am. He was bright and chirpy when he woke up and his appetite was pretty good today - so hopefully he is on the mend, although still no neutrophils. Antibiotics still going through and will continue for a while yet. Drew was a 'mock' examination study for another Dr today, he managed to stay quiet for 10 minutes, as he wasn't allowed to give the Dr any clues, which was quite a feat for Drew.

Monday, 11 May 2009

Drew woke up pretty ordinary this morning, vomiting in fact. He didn't want breakfast and when I weighed him, he had lost 1.3kgs since last Tuesday. They gave him a pretty thorough going over, as his shoulder and elbow were aching. Kahn (Dr) came in to examine him and his mood perked up considerably. Dr Kristin came and visited him too and gave him some volcanic rocks she had brought back from Vanuatu for him. Drew also had a relaxation session with Ronnie, Lisa and Sean. Drew was up and down all day, feeling OK then pretty ordinary and he also had a platelet transfusion. Kahn came back with another Dr (Smith) who gave him another thorough neurological examination, with all seeming to be OK - he charmed the pants off them. Drew had to swallow 200mls of liquid, before going over to have a CT scan - this was a two part operation. The first part was to examine his head and neck area, which was all OK and the second part was to examine his stomach area to see if there was any area of infection, which was causing his temperature to keep spiking. The end of Drew's bowel was inflamed, which meant that is where the infection is, common in neutropenic children - so antibiotics and neutriphils, which he has 0 at the moment, will cure.

Sunday, 10 May 2009

The other boys and I spent the night at Ronald McDonald House so we could get up and have breakfast with Daddy and Drew in the morning. We had pancakes, with golden syrup and whipped cream and Drew got stuck in, which was good. The boys gave me some nice presents for Mother's Day and it was nice to be altogether, although I would do anything to turn back the clock 12 months. Kyle left to play soccer and he too won 3-2, so we had a clean sweep this weekend. Drew's temperature was spiking again, so they gave him some anti-fungal medicine. We had a nice dinner together, before the boys went home. Drew started to get some aches and pains and once he went to sleep, was very restless and talking in his sleep.

Saturday, 9 May 2009

Drew spent the morning watching TV with Daddy, whilst Dane and Kurt were off winning their soccer games 4-0. He spent a bit of time alone this afternoon when Dad went off to play soccer and he won 4-1, just Kyle to go. Unfortunately tonight, Drew's pump kept beeping and when they'd ruled out all possibilities it meant his port would have to be reaccessed. Our worst nightmare. When this happens, they are supposed to re access straight away, which means no anaesthetic cream - well he wasn't having a bar of it and was saying things about himself you never want to hear your child say. In the end we put the cream on but it still took a very long time for Drew to let the Nurse access him - thank heavens, it went in right the first time and worked. It was a very harrowing hour or so and the other boys could see how upset I was when I went into the Parents Room, which upset them too. The good thing was once it was over, Drew was back to his happy self.

Friday, 8 May 2009

Drew's temperature has been a bit all over the place, and he was a little down this morning, but picked up in the afternoon. We made some tissue flowers for Mother's Day and he needed a blood transfusion, which came in the afternoon. Just after the boys arrived and the transfusion was nearly finished, the line popped out of its connection and Drew has quick as a wink popped it back in, thank goodness he had just washed his hands with Aqium gel, with only a couple of drops of blood spilt. Daddy stayed with him tonight and the boys and I returned home.

Thursday, 7 May 2009

Drew woke a lot brighter this morning and even managed a little bit of breakfast, but not the bacon. By mid morning he was positively pumping and after watching Prehistoric Park even did some school work. Dr Liz came around and said Drew's blood culture had 'grown' a Gram Negative Rods - in layman's terms that is an infection, which will require 7 - 10 days antibiotics, not negotiable or possibly 14 days - basically till its gone. Drew has taken that news OK so far. Sean came around this afternoon and they played a bit of music together and Captain Starlight got Drew's footy picks for J1 Ward. Drew's temperature spiked up again to 38 and then up to 39.7, he was shivering and so cold, but by 9.00pm it came back down and he was his lively self again - although lately there has been a lot of sad talk and thinking about the worst that can happen - if only there was a switch that you could flick to turn his mind off.

Wednesday, 6 May 2009

Its coming!!! Drew didn't feel like breakfast today, and was feeling cold and went and laid on the lounge - his temperature was only 37.1, but you could tell he wasn't his normal self. He laid on the lounge till lunchtime, telling me and trying to convince himself he was OK, one look at him was enough to say otherwise - his temperature was now 39.92. By the time we got to hospital, I needed to get a wheelchair to get him from the car to the ward, and he even had difficulty getting from it to the bed, he was feeling that sick. We got his port accessed so they could get blood cultures and start antibiotics - he was feeling horrible and really cold, he slept most of the afternoon and into the night.

Tuesday, 5 May 2009

Drew was up and into his schoolwork early this morning, before the other boys even went to school. I think his theory was, if he got it done he would have all day to play the playstation. Unfortunately, when he got up his black spot on his lip was bigger and blacker, so when I rang the hospital they said to bring him up and he would probably need platelets, which he did. There was also a problem with his clotting factor in his blood, so they wanted to take more blood but from his arm so it was a clean sample with nothing else mixed in. When it came time to take the blood, Drew wasn't having a bar of it - they called Dr Frank, who agreed to take the blood from Drew's port, but if it was still high they would have to take it from his arm. It was still high, but lower than before, so they let us go home, as Drew's neutrophils are zero it won't be to long before we are back.

Monday, 4 May 2009

Drew seems to be going ok, although some bruises and purple spots are starting to appear on him and tonight when coming to bed he had this black spot, like a blood blister on his lip, which probably means that he will need some platelets. He got through some school work today, and was quite eager to do it.

Sunday, 3 May 2009

Another great day, again we went off to watch Kyle play soccer (they won 5-2). Drew got to see his Football NSW Coach Tony and had a kick around with Daddy, Kurt and Dane in the breaks. He is starting to get a few bruises, so maybe a platelet transfusion may be on the cards this week.

Saturday, 2 May 2009

It was a beautiful day, weather wise (to start with) and we went and watched Dane and Kurt play soccer for a win and a loss. Dad had a win too in the afternoon, scoring the winning goal, but we didn't watch that, a bit too late and cold by then. Drew spent the rest of the day playing around the house with Dane.

Friday, 1 May 2009

Today was one of those days, I changed Drew's hospital appointment from 8.00am to watch big brother play school soccer (they lost, we won't mention the score). We arrived at 11.30 and Drew didn't receive his injection until 1.40pm. Because he had a reaction to L-Asparaginase previously he now had to have P-Asparaginase which comes packaged totally differently, so while we were waiting for it to be brought down, it actually already had been, just nobody recognised it. Drew started off well with his breathing, but unfortunately when the time came to inject it he couldn't bring himself to allow it to be done, so it was another hold down, screaming effort. Drew did a nice relaxation session with Ronnie the Play Therapist afterwards. The good thing about P-Asparginase is he only has to have 1 injection per block, instead of 4. I think we are both relieved about that.

Thursday, 30 April 2009

Nice quick visit up to the hospital today, Drew's blood results, which were good, came back pretty quickly. The chemo he has today (Vincristin) only takes 15 minutes to run through followed by a 5 minute flush, so we were in and out in 1.5 hours. Dr Frank also had good news that the Red Cross have advised that there are 2 unconfirmed potential donors, so fingers crossed they both are OK and then they will pick the better match of the two.