Monday, 30 March 2009

. Drew was still on morphine today. He managed a bit of school work and had a visit from the Newcastle Knights in the morning, he had a bit of a chat with Kurt Gidley through the open door. Drew's temperature spiked up to 39 again in the evening although his spirits stayed high, with Nurse France getting a bit of an unexpected cold water squirt in the back

Sunday, 29 March 2009

Drew's leg was extremely painful today, so the Doctors scheduled an ultrasound and an x-ray. This was no mean feat to accomplish, as Drew was in so much pain, he refused to move his leg and again got quite upset - morphine was ordered and did the trick. There doesn't appear to be any infection in his bone and it could possibly be a reaction to the Asparaginese injection, he also has a red rash on the other leg's injection site. It is all a bit of a mystery - Drew is also on phernergan at night and some other drug during the day so he doesn't get itchy from the morphine - needless to say there is no departure time in sight.

Saturday 28 March 2009

Drew's leg was still aching today and I think he is well and truly sick of being poked and prodded and feeling yucky. Unfortunately, he has a very long hard road to go until this is over. Dr Frank came around this afternoon and said Drew needed to stay in for another 24 hours on antibiotics, but it was possibly the Asparaginase injection that had caused his temperature, as he has to go back on Monday he will probably stay until then. Drew watched the Grand Prix practice with his Daddy and had a bought roast chicken for his dinner, which made him happy.

Friday 27 March 2009

Back to the hospital this morning for a blood count and his last Asparaguts injection for this block. Drew's bloods were good and he actually has 1.1 of a neutrophil, which means he isn't neutropenic and has a tiny bit of resistance. Nurse Alex did the injection today, and had a big syringe of water filled up for Drew to squirt at one of the other nurses. Unfortunately for Alex, Drew's injection hurt today so when she gave Drew the syringe, he squirted it all over her instead of Nurse Trish. The nurses could see the difference in Drew's hair from yesterday till today. Drew's bones were hurting this afternoon, so he laid down to watch a quiet movie. Unfortunately for Drew at 6.30pm his temperature hit 39.35 which meant he had to go back to hospital.

Thursday 26 March 2009

Unexpectedly Dr Frank let Drew go home for the night today. Unfortunately we didn't get to school in time to see the Camp Quality puppets, but Drew's brothers told us about them. Drew got to see a few teachers from school and have a bag of pop corn whilst he was there. Drew enjoyed being at home and was very excited to see Quincy his dog. The boys had to make sure there was no wrestling going on as Drew was still accessed with a bit of a line hanging down, which didn't stop him doing 'The Commando' from the Biggest Loser push ups. Drew's hair is falling out at a rapid rate now.

Wednesday 25 March - Bad Day in the Office

Well the day started OK and then went down hill before coming back up at the end. Drew seemed to hit the wall mid morning, this sadness just crept over him and there was no shaking it. His port had to be deaccessed because it had been in for a week. This set off one of the biggest traumas, since he was diagnosed. Getting the tape off, particularly after a week is painful and there is a bit of discomfort when the clip of the port is removed, but Drew worked himself right up, there was no comforting, co-operating, deep breathing or having a bar of it. Finally Nurse Jade and I forced the issue and it was over in 2 minutes or less - it was pretty upsetting for all concerned. Once Drew would let me touch him again, we had a cry together, not long after Dr Frank came in and you can tell when the news isn't good. None of the boys, nor Peter or I are a match for Drew's bone marrow transplant, we will now go to our siblings to see if they have the necessary tissue type to then test their children. Drew cheered as the day went on. Sean came in and played some music with him and then he watched Milo and Otis which he loves. His brothers arrived and he was positively jumping and a visit from Miss Cinitis topped off the day.

Tuesday, 24 March 2009

Drew woke up to a mouthful of hair today. His face was in the pillow and it seems his hair is beginning to fall out. He was in good spirits, with Dr Frank even saying did Drew forget that he isn't supposed to feel so well at this stage, unfortunately still no neutrophils. Drew had his vincristine (chemotherapy) and his asparaguts (Asparaginase) injection, with Ronnie in attendance again and again no tears, he is a legend. Uncle Phil visited this morning and left in a lovely green wig. Whilst Drew donned a golden one and I had my favourite colours sprayed on.

Monday, 23 March 2009

Drew was a bit down today, his neutriphil count is 0, his platelets are also low and he will probably need a platelet transfusion tomorrow. Dr Frank came around this afternoon and said he would be in at least for another 5 days. Drew's appetite wasn't that good today and when he did finally eat, he revisited pretty quickly. For Harmony Day last week the children in the hospital each did a square, which was sewn into a quilt and is displayed in the corridor at John Hunter, along with Drew's picture completing the his square.

Sunday, 22 March 2009

Drew played the computer today and was disconnected today to give him a bit of freedom in his room. He was a bit disappointed that he wasn't allowed out, so he was given a one off special visit to the Parents room by Nurse Jody. We had Pizza and cream cake for tea to celebrate my birthday, Drew enjoyed his brother's company again.

Saturday, 21 March 2009

Drew and Daddy watched TV, Home Alone 2 tickling Drew's fancy. They played noughts and crosses, which was a draw (according to Drew)? They got cricket updates from big brother Kyle's semi final (which they lost) and generally enjoyed each other's company.

Friday, 20 March 2009

Drew woke feeling a bit sick, but managed 2 bowls of cornflakes after a while. He got stuck into his school work today, whilst having 2 units of blood. Ronnie, the play therapist came in whilst Drew had his asparaguts injection today and did a breathing exercise with him. He was very proud of himself because he didn't cry for what is a very painful injection. Drew was very excited to be seeing his Daddy and brothers this afternoon and he had a very special trophy to show them - the footy tipping competition that he had won this week.

Thursday 19 March 2009

Drew woke up flat today and feeling pretty ordinary. He needed a platelet transfusion, as his platelets were only 7, even after his platelet transfusion on Tuesday. He didn't eat breakfast and after a vomit he decided a chocolate was what he needed, he managed to get half the picnic down. Drew started to pick up half way through the afternoon and a visit from Dayle McGeachie really sparked him up. Drew will be here till at least Saturday, maybe a week, maybe more depending on how long it takes for his count to recover.

Wednesday 18 March 2009

Drew was a bit off colour today. Just a bit quiet and pale. He still got stuck into some school work and of course the playstation. Drew got his Mariners jersey back today with his favourite player's name and no. on it Caceres No. 10, just in time for the Mariners match tonight. Post Script: Just after publishing this post Drew came over for a cuddle and felt rather warm. Two takes of his temperature showed it was over 38 so off to hospital we went. Drew was very upset and crying and didn't want to go. Once we arrived and Drew saw Alex and Scott, his mood soon changed. His port was accessed, bloods were taken and antibotics administered, although his temperature on arrival was back down to 37.

Tuesday 17 March 2009

Back to John Hunter today, we got the worry box out of the wardrobe (this is an imaginary box that I tell Drew to put his worries in and we'll get them out on the day). Drew had his blood taken and the results showed he had a whole white count of .2, 0 neutriphils and 5 platelets, his haemoglobin was good at 85, these results were expected with his intensive chemo, but leave him very vulnerable to infections. Drew had a platelet transfusion before getting reacquainted with his old friend Chrissy (vincristine). The worst part of the day was his Asparaguts (Asparaginase) injection. This is an injection into his thigh muscle, which he HATES, with good reason. The worries were let out of the worry box in a flood and it took a lot of talking to calm him down enough to have the injection. Once it was over we both had a good cry, 10 minutes later he was fine. Unfortunately he has to have another one on Friday.

Monday 16 March 2009

Drew really got stuck into his school work today, bit of reading, spelling and maths, before he settled into the afternoon on the playstation. No nausea or vomiting, so it seems Drew is over the worst of last week, before he begins again tomorrow.

Sunday 15 March 2009

Quiet morning spent at home, with Drew playing the playstation, before we headed up to Newcastle (the car knows the way by itself) to watch Kyle make his Thunder debut. It wasn't one of his better games, but we all have bad days in the office - Drew was very encouraging when Kyle finished the game.

Saturday 14 March 2009

Off to cricket this morning. Drew is full of energy and people find it hard to believe he is sick. After cricket we were off to watch Dane play soccer. Although Drew enjoyed watching Dane, it really gets to him that he can't play. The 10As and 10Cs both won and Dane's team also won with Dane scoring 2 goals. We had a visit from Aunty Tricia and Aunty Pam this afternoon, who stayed for dinner.

World's Greatest Shave

Tonight was the night. We had plenty of kids wanting to get their heads coloured which was great. We had 6 shavers as well, Kurt was first off the block, then Peter, Brett (I think) who had a very unruly mop and we thought the clippers had overheated, but no the cord had just come unplugged. Followed by Steve, myself and last but not least Dave. Drew was too nervous to shave any one's head, so he turned the clippers on instead. Thanks to Charmy Indoor, for their support in allowing us to hold it there and throughout Drew's illness. We raised $625 on the night. Thanks also to our friends, family and complete strangers who sponsored and supported us. If we could, Peter and I would change places with Drew in an instant, but as we can't this was our way of showing our support to our brave little boy.

Friday 13 March 2009

Drew woke up fine today, no nausea, vomiting or cramps and is looking forward to going home around lunch time. Tonight I have to give him an injection just below his skin, to help his white cells recover quicker. We have a friend who is a nurse and lives close by, I ask her to do this as I don't think I could inject it straight into Drew's skin. We head home around lunch time and as soon as we get home Drew asks can he go on the trampoline, he wasn't too happy when I said he could go and lay on it and do little bounces - that didn't excite the "action man" in him. The older boys unfortunately lost their grand final 1-0, but we all had fun at the World's Greatest Shave.

Thursday 12 March 2009

Drew had a good night's sleep, but unfortunately woke up screaming at 7.00am with a cramp in his leg. A good stretch by Scott and massage and ice by Jaime, soon fixed his cramp, but it seemed to knock the stuffing out of him a bit. His mouth is sore and is making it difficult for him to eat and the hospital food doesn't really help. Dr Frank popped in to see how Drew was going and of course give it to him about the Mariners only managing a draw at home. Drew spent the day doing some school work and painting a Chinese Flag for the John Hunter School's Harmony Day celebrations next week.

Wednesday 11 March 2009

Well a new day dawned and Drew woke up fine. Dr Frank came in to see Drew, who was feeling well enough to tease Frank about the Jets losing. Dr Frank altered Drew's anti nausea medication and he got through the day unscathed. Scott also changed Drew's port and it did appear that the needle was bent. Dr Kristin visited him today and Dr Kahn also came down with some best wishes for the Mariners match. Drew had a nice sleep in the afternoon which recharged his batteries for the night. Drew had a good night's sleep.

Tuesday 10 March 2009

We made our way back to hospital today. Drew was in high spirits once we got there and everybody asked about his weekend at Camp Quality. The chemo (cyclophosphamide)was hung at 12.30pm and ran through for 6 hours before the next chemotherapy drug (Etoposide) was administered after another hour. The vomiting started around 5.00pm, Drew's anti nausea medication was increased and several new ones added. Drew eventually went to sleep around 10.00pm, but what a night. He had to be woken up to pee, his volume and ph need to be measured, then the pump wouldn't stop beeping, and it appeared there was a problem with his port, that solved. Dr Frank had to be woken up at 1.30am as Drew wasn't producing enough fluids, so he had to have extra fluids pushed through to stop him dehydrating. He also has obs taken at intervals throughout the night. At 4.30am the anti nausea medication had worn off and the poor thing had another vomit, this time the bed needed to be changed as well. After that we settled back to sleep until his blood was taken at 5.30, when there again seemed to be a problem with his port. The good thing Drew seemed to be oblivious to most of what had happened through the night.

Monday 9 March 2009

The boys went back to school and Drew did a bit of school work at home. He had a good round on the playstation, as his theory was he wasn't going to be able to play it for the rest of the week. We bought chips and took Quincy to the beach and sat on the stairs and had lunch. Drew also went down to Football NSW and had a run around, since he's going to be cooped up all week and who knows how he will feel from here on in - he has now started to get some mouth ulcers, which don't seem to be bothering him too much at this stage.

Saturday & Sunday, 7 & 8 March 2009 - Camp Quality

Both Drew and Dane went off to Camp Quality. By all accounts they both had a great time. Drew went on the giant swing and went one metre from the top, they played battlezone with laser guns and went sailing. The weather was absolutely beautiful and it was hard to get the boys out of the swimming pool went I went to pick them up. Both boys also had a blister, as they had a challenge on the monkey bars and neither would give in - as Kip said to Drew, winning comes at a price - matching blisters. After camp we went to watch the older boys in their indoor semi, with more success this time - they made the grand final, which will be held after we shave and color our heads next Friday night. Thanks to all of Camp Quality, especially Simon and Kip, it was just what the boys needed.

Friday 6 March 2009

 

Indoor Grand Final Drew received a newsletter from his class today, which he was quite excited about, he did a response straight away. He also did a bit of schoolwork so he could play the playstation, amazing how enthusiastic he is when the playstation is involved. We went to watch White Lightening play against the Budgie Bullets in the indoor grand final tonight, unfortunately the boys went down 2-0, but it was a great game. Drew was the non playing Captain (you are a fantastic coach Cris). After the game we took Drew and Dane up to the Camp Quality camp, which is only 10 minutes from home. Drew was a bit sulky when we were leaving, I think we have spent so much time together in the past 4 months, that there was a bit of separation anxiety on both sides. He is in great hands in his companion Simon, and Dane's companion Kip was very nice too - I'm sure the boys will have a ball - and the beauty is it is only 10 minutes from home.

Fun Day at Hospital

Thursday 5 March

Kyle, Kurt, Dane, Mum and Dad had their blood taken today to see if any of us are a match for Drew's bone marrow transplant. The boys were all very brave. Today they all made chocolate muffins in Drew's room and iced them later in the day. There were a few lucky Nurses and one lucky Doctor, but unfortunately Dr Frank was too late and missed out. Dr Frank went into a little more detail about Drew today and his intensive chemo treatment, it sounds horrible but we are in good hands. Frank also told us he saw one of his patient's today who is 21 and who had 2 bone marrow transplants and his now going to TAFE, that will be my light at the end of the tunnel. The boys also got to play Shaun's electric keyboards and bongo drums today - it was so loud you could hear it at the desk and Drew was in the 2nd last room away from the desk. The boys all had a good time. We also saw the lovely Dr Helen, which is always a highlight of the day. Drew also had a visit from Vannessa, Spud, Ali & Todd this afternoon. His methotrexate levels had fallen sufficiently that we were allowed to go home at 5.30pm.

Wednesday 4 March 2009

Drew's methotrexate was stopped at 11 o'clock today. He still felt a little nauseous at times, but there was no vomiting today. Drew finished some book covers for school and competed on the World Maths Day website. He was looking forward to seeing his Daddy and brothers tonight. Mum gradually pulled herself together as the day wore on.

Tuesday, 3 March 2009 - Bad News

Today started off well - Drew went to theatre around 9 o'clock so he wasn't too hungry and had myself and all the theatre staff giggling at his antics. He was back in the room before 11.00am and his methatraxate was hung to be administered over the next 24 hours. He is required to pee at least every 4 hours to make sure his kidneys are functioning properly. Today Dr Frank came in around 3.30pm and with Jade (Nurse) took me to the room to tell me the results of Drew's bone marrow aspirant. The fact he took me away from Drew to tell me, I knew it wasn't going to be good news. Unfortunately, it was the worst result we wanted - Drew's results came back as Very High Risk. This means his chemotherapy treatment will be intensified, which at best will make him really sick and at worse...... In four to five months we will have to go to the Randwick Children's hospital in Sydney for Drew to have a bone marrow transplant. It came as a real shock as Drew seemed to be going so well - I think today was even worse than the very first day he was diagnosed.

Monday 2 March 2009

Drew spent most of the day playing on the playstation as he will be in hospital all week, so I relented and let him spend a bit of time on it today. We headed up to John Hunter about half past 2. Drew was accessed and his blood tested to make sure it was ok to go ahead with this stage of treatment. All was good. His fluids were hooked up about 8 o'clock with double maintenance (which I think means twice as much fluid) being started at midnight, when we were both asleep. This is done to flush his kidneys in preparation for the chemotherapy Drew will start to receive tomorrow. Drew is just happy to be able to watch the cricket against South Africa live.

Sunday, 1 March 2009

Drew played cricket, had a visit from Uncle Phil and of course played the playstation, which he will miss for the next week. Drew enjoyed the day with his brothers.

Saturday, 28 February 2009

Off to watch Kurt play cricket today. Kurt batted and bowled well and took out Man of the Match, his team won too. Drew played with Dane and friends Bailey and Connor and had a great day. We spent the night watching Milo and Otis.

Friday, 27 February 2009

Drew went up to school today to have his school photos taken. He looked pretty spiffy and got to spend some time in his classroom with his classmates and teacher. He was pretty pumped up when he came home, he obviously enjoyed his few hours at school. He also enjoyed his return to the playstation after his banning for a week. Drew's indoor soccer team won and have gone straight into the grand final against the team that Drew is going to be the Assistant Manager for this year in outdoor soccer.

Thursday 26 February 2009

Another quiet day at home, playing on the trampoline, roll call, spelling, maths, reading and not to forget Mathletics. Drew is making the most of his time at home this week before we head back to hospital all next week.