Wednesday, 29 April 2009

Drew got stuck into his school work, after a couple of weeks break. He even had a school lunch order today, which we picked up from school. One of the Doctors forewarned me that this treatment would make Drew as sick as a dog, but they got on top of the nausea and vomiting on the first afternoon and apart from being a bit emotional,(who can blame him) Drew has been great. The worst part was the first couple of days of eye drops which will end tonight - Drew has come so far I even had him trying to put them in himself - tad difficult with your eyes shut, but he tried.

Tuesday, 28 April 2009

Drew spent the day with Kyle who doesn't return to school until tomorrow. They played footy outside and of course the playstation. Drew was hanging to go for a bike ride, but it was so windy and cold - the answer was no much to his disappointment. Drew received a Northern Territory flag, a crocodile tooth and shark's tooth in the mail, from his Auntie Di, who lives in Darwin. Anyone who knows Drew knows he loves sharks and flags - so he was rapt. Unfortunately, 24 hours after Drew's chemotherapy ended he needed to have his injection. A friend who lives nearby and is a nurse came over after work to do it, even though it is just into his skin and not into his muscle, I can't bring myself to do it and thank goodness she came. It took 50 minutes of coaxing and reasoning and finally threatening (a bit like Friday night) and in the end Peter and I had to hold him down whilst Robyn injected him - it wasn't pleasant for anyone, but 10 minutes later he had calmed himself down and was back to his happy self. Thanks Robyn, I don't know what we would have done without you.

Monday, 27 April 2009

Last day of chemotherapy today and when it finished at around 6.30pm, we didn't waste any time getting out of there. Drew will have to have an injection tomorrow night, which helps his cells recover faster and continue to have eye drops and anti nausea medication for 2 more days. He was very happy to get home and the eye drops aren't a drama now.

Sunday, 26 April 2009

Today the eye drops weren't a problem at all - Drew has developed a pretty unique technique, he tilts his head back and we put them in the corner, he rolls his head to the side and then massages his eyelid and it is over and down with in about 5 minutes. The boys came up after soccer and we had a nice chicken dinner together, one more day and he'll be home.

Saturday, 25 April 2009

Friday night wasn't over when I posted. Drew's afternoon eyedrops took 20minutes and the later night ones took 80minutes. Daddy and Nurse Alex coaxed and cajoled to no avail, I was still in the hospital with Kurt and after an hour came back down. It still took another 20 minutes. After wrestling on the bed with no success, he finally allowed Alex to put them in peacefully, he was so upset afterwards because he thought he had been silly and not brave, it was heartbreaking. Today unfortunately wasn't much better, he had to be held down a couple of times and Dr Frank had to administer one dose. On the good news front, his nausea and vomiting are under control.

Friday, 24 April 2009

A long chat this morning with Drew about why he had to have the eyedrops, didn't receive much response but when the time came around he was pretty good. Unfortunately, later in the morning just before his chemo was going to be hung for the day, he had a complete meltdown, I think 4.5 half months of treatment and not living his normal life, the thought of being vomiting and yet more eyedrops just caught up with and he lost it completely for about 10 minutes, then he jumped into bed and had a sleep. When he woke up he was fantastic, had his eyedrops no problem, and was actually worried about how he carried on, I just told him sometimes you just have to let it out. Nurse Jody awarded him a Bravery Award for how well he handled his eyedrops. Drew's brothers are coming up tonight and Dad and I will tag team for the weekend. Hopefully we are on top of the nausea and vomiting.

Thursday, 23 April 2009

Back to hospital at 8.30am today for 5 days of intensive chemotherapy. It was hectic and there was no bed for Drew, so we went to the Day Stay Unit, where Drew was accessed and his chemo started. He is having Cytarbine, over 3 hours, then Dexaroxane (Dexy) to protect his heart from his next drug Mitozantrone (Blue Loo)which starts 6 hours after the commencement of the Cytarbine. Unfortunately one of the side effects of intravenous cytarabine, apart from nausea and vomiting, is a chemotherapy conjunctivitis, to avoid this Drew has to have 4 eye drops every 4 hours. Guess who hates eye drops, so after an initial drama, Drew finally let the nurses put them in, the next couple of doses weren't too bad, but Drew wasn't keen when we had to wake him at 12.00am and 4.00am. He was also very sick in the afternoon, but they tweaked his anti nausea drugs around and he had a peaceful night, except for the eye drops.

Wednesday, 22 April 2009

Kurt and I woke to the beautiful sight of Sydney Harbour, we watched the Mariners match on the TV, which they unfortunately lost, before checking out and going on a ferry ride around Sydney Harbour. It was nice spending some time together, which may not happen again this year. The trip home was much quicker, than the trip down. Drew and his brothers have spent the last 10 days together and has in any school holidays it was starting to show with tempers flaring. By the end of the day all was forgotten and every one was back on good terms.

Tuesday, 21 April 2009

Drew was home again today with his 3 brothers. Kurt and I left in the afternoon to spend the night in Sydney. We had been invited to the Leukaemia Foundation's World's Greatest Shave thank you party, at the Sydney Hilton, for raising over $1000so thank you to those who sponsored us again. The trip down took over 2.5 hours, as the F3 had been shut due to a truck accident, but we made it on time. We met a lovely lady Joanne and her daughter Emily and had a good time. After catching a taxi over, we caught the train back to North Sydney where we were staying and watched the ferries on the harbour and Luna Park spinning around.

Monday, 20 April 2009

Another cold inside day. The boys played the playstation and watched the Formula 1 race. Drew was quite happy that Mark Webber came second. He is so full of energy it is incredible - pity he can't go outside now because of the weather, when in a couple of days he has to return to hospital.

Sunday, 19 April 2009

Rainy and cold today. Drew and Dane didn't venture outside for too long before the rain came tumbling down again. The boys spent the day on the playstation and doing indoor stuff, and of course the odd brotherly tiff.

Saturday, 18 April 2009

Drew enjoyed watching 2 of his brothers play soccer today, with a 10-2 win and a 2-2 draw and we managed to avoid the rain. He misses playing terribly and sometimes I think it is hard for him to go and watch. On the way home we popped into the local shops and the owners of the Mini Mart and Liquor Shop, were having a fundraiser for Drew and another local boy, the same age as Drew, who also has leukaemia. Adam was diagnosed 2 years ago and has had a very torrid time, he is obviously one very determined boy, who fills your heart with hope and looked a picture of health today. It was nice to meet Adam's Mum and Dad as well, who are still smiling, despite what they've been through. Thanks to all involved for organising the afternoon, and to the local community for supporting us. Lastly in the evening a friend dropped in bearing chocolates, with her young son to catch up. Nathan had made us a special card and saved up his pocket money to give to Drew. It's days like today that fuel your spirit and help you get through the tougher days.

Friday, 17 April 2009

The boys spent the morning watching Inspector Rex and then we went and had fish and chips at the beach. The boys enjoyed a game of beach soccer, with all the skullduggery, tripping, pushing caught on Mumcam. We went home and the boys spent the afternoon playing the playstation before having home made pizza for dinner and settling down to watch the footy on tv.

Thursday, 16 April 2009

Quiet day at home today. Kurt has been released from quarantine, only to rip a huge gouge of skin off his big toe whilst the boys were playing soccer on the concrete with no shoes on - as you do - and in the nicest way possible, at least it wasn't Drew. We didn't have any soccer training or Dr's appointments today, so it was nice just to spend the day at home.

Wednesday, 15 April 2009

Drew had an early morning appointment with his Cardiologist to have his heart checked before his next lot of chemo next week (which includes a drug which can damage his heart). All was good, everything was how it should be, his heart is pumping normally and the vein where his line is looking good, so no damage has occurred so far. The other boys and myself had our flu vaccinations today, which ended up taking forever, but the shots themselves were less than a mosquito bite, which made for 3 relieved boys. Drew enjoyed another day at home with his brothers, just being a normal nine year old boy today.

Tuesday, 14 April 2009

Drew had a great day at home with Kyle and Dane, poor Kurt is still banished to his room for another 2 days. Drew played the playstation of course, wrestled with his brothers and fell off the lounge and hurt his head (boys!!!) and played with Quincy. He is disappointed he can't bounce on the trampoline, but Dr Liz said that is a no no. Drew did go for on a gentle bike ride yesterday.

Monday, 13 April 2009

Drew enjoyed playing on the playstation with his Daddy, Kyle, Dane and some friends. Unfortunately, Kurt came out in a rash this morning and was well and truly quarantined in his room. I managed to get a Doctor's appointment, on Easter Monday, and it turns out he doesn't have tonsillitis as we had suspected, he has a viral infection - he is a no go zone for 3 days. Drew just really enjoyed being home, and told me so when he went to bed.

Sunday, 12 April 2009

Well the Easter Bunny found our house and the boys did the egg hunt and were happy with the results. We convinced Drew to come and watch Kyle play soccer and they won 5-2. Drew got to have a run around and a bit of a kick during the breaks, he never ceases to amaze and even now undergoing intensive chemotherapy, apart from his hair loss, you still wouldn't know he was sick. We came home and played a game of Monopoly World Edition, which Drew had asked for and seemed a nice way to celebrate Easter together. Kyle trounced us all. It was a great day, except for finding the work van's windscreen smashed with what looked like a baseball bat, top marks to O'Brien's windscreens who were rang at 4.00pm and had it fixed by 7.30pm on Easter Sunday - he also had another one to fix in Lake Munmorah, who had also apparently been hit by a baseball bat - I suppose at least we know it wasn't personal, just a mindless moron. Anyway, it didn't spoil our day.

Saturday, 11 April 2009

Drew didn't have a very good night, with a bit of vomiting, whether it was the drugs or the cucumber and brown vinegar he was munching on when we left who knows? Drew had his first dose of Folinic Acid (Rescue drug)at 10.00am and his levels of methatrexate had already dropped to .29, they have to be at .25 to be able to come home so things were looking good. He needs to have 3 doses of the Folinci acid, 6 hours apart, as his levels were so low already, the Doctor was pretty confident he would be below .25 at the next dose and if so was happy for him to come home and take the 3rd dose at home. At 6.00pm the results were OK and Drew was able to come home, Dane was disappointed he wasn't going to sleep in Ronald McDonald house, but I think the rest of us were happy to be spending Easter together at home. Drew came home with a cache of Easter eggs he had received from the Captain Starlight's and others at the hospital. It has been a week of constant changes, but it has all turned out all right in the end.

Friday, 10 April 2009

During the night, Drew had some glucose in his blood, which after 2 positive results meant he had to have his finger pricked in the middle of the night to see his sugar levels - he was none to happy about that and it was a bit of a struggle to get that tiny drop of blood off his finger. In the morning Drew finished off a birthday card for 'Dad', with a bruised finger he said and did some Easter painting as well, we wont mention the paint water that ended up all over the bed :o). The anti-nausea medication controlled any nausea Drew had and he was looking forward to his Daddy and brothers coming up in the afternoon. When they arrived (all but Kurt, who was sick) we cooked some popcorn and settled down in a darkened room, just like the cinemas, to watch Milo and Otis (again) and Tom & Jerry. Drew's methatrexate finished at 4.00pm, he also had to have another drug to make him pee, as his input wasn't matching his output, with a deficient of 1.5 litres, the drug certainly did the trick and he was soon peeing like a trooper - all was going well.

Thursday, 9 April 2009

Drew went up to theatre a lot earlier today, 11.00am. He woke up grumpy, as I would if I'd been to theatre twice in two days and had only had 1 decent meal (if you call McDonalds decent) in 36 hours. Nurse Leonie cheered him up talking about her Cavalier King Charles puppy, Gus and the purple starlight machine topped it off. There was a further hiccup in the afternoon, Drew's chemotherapy hadn't arrived at the hospital and if it didn't arrive by 7.00pm, it wasn't going to arrive till after Easter, which meant Drew would have to have another lumbar puncture, as the treatment involves the methatrexate and other injected drugs being given in conjunction with the methatrexate being given intravenously. However, the chemotherapy arrived and was hung by 4.00pm, which meant the earliest he could be out was 10.00pm Saturday night. The wonderful nurses booked a room for the rest of us at Ronald McDonald house so we could spend Easter Sunday morning together, in case things didn't fall into place. Drew was a bit disappointed he didn't get to see his Daddy on his birthday, but we'll just postpone it to another day.

Wednesday, 8 April 2008 - Change of Plans

Well today was one of the day's. We arrived at John Hunter Hospital at 7.15am for Drew's BMA, we arrived right behind one of the other kids who is also being treated for ALL (Acute Lymphoblastic Leukaemia). This child went for her procedure, the same as Drew's at 10.00am. Drew was still on the ward at 1.30pm, waiting and starving. At 2.00pm the wards woman came to collect him unannounced (they normally ring to let the nurses know their coming), we quickly packed up the bed ready to go, when she got a phone call and the OR said they didn't want him till 3.00pm - off she went. I thought I'd get Drew a Starlight machine for the hour to pass the time quicker and take his mind off his hunger, no sooner had I finished setting it up, when the wards woman was back, she had got back up there and they said sorry, our mistake we do want him now - so finally up we went. Meanwhile, the child we had came in at the same time was going home. The procedure was quick and Drew was back on the ward by 3.30pm. Around 4.00pm, one of the Doctors came in to break the news that what we'd been told first about treatment this week was correct, it wasn't a treatment free week and Drew would be staying in, going back to theatre tomorrow for a lumbar puncture, followed by the methatrexate chemotherapy and the earliest we would be home would be Saturday night. I just felt like crying and Drew did too. I left Drew with his Starlight machine and went back home for clothes and brought Drew some McDonalds for dinner. To top the day right off the Mariners lost 5 - 0 - it can only get better.

Tuesday, 7 April 2009

Quiet day at home today, playing with Quincy and the playstation of course, not to mention a round of cricket with Kurt. Back to hospital tomorrow.

Monday, 6 April 2009

Today Drew watched the replay of the Malaysian Grand Prix, which was a bit of a non event, did some school work, enjoyed reading his class's school newsletter, played with the dog, and went around a friend's place for an hour in the afternoon. There was also a change of plans in his treatment this week. It was meant to be a treatment free week, as I thought but they did keep his BMA (bone marrow aspirant) for Wednesday, so still no Easter hat parade, but at least Drew will only spend one day in hospital, as long as he remains well. Fingers crossed.

Sunday, 5 April 2009

Drew had a fantastic day at home with his brothers today. He played the playstation with his brother Kyle, motor racing with Kurt (that involves walking around the house with a plate in their hands as a steering wheel and making car noises) :), soccer with Dane and Yahtzee with two friends who came over. He enjoyed his dinner of chicken and vegies and just had a normal 9 year old day.

Saturday, 4 April 2009 - HOME!!!

Drew's neutrophils climbed to .3 and his monocytes (which I think are baby neutrophils) were increasing so we were allowed home till Tuesday. Drew starts his next block of treatment next week, which was a bit of a surprise and disappointment, as I didn't think it was until the week after and that we might actually get some decent time at home. Not to be, but we were going home today. The boys were surprised to see us when they got home from soccer. Drew's spirits are pretty good when he is in hospital, but the change in him when he gets home is amazing. We all watched Short Circuit (again) tonight, as a family, which was really nice.

Friday, 3 April 2009 - Still in hospital

No change in Drew's neutrophils, but his leg is all better which is good. Drew did some paper mache to make an Easter egg and is doing an Easter poster as well. He played a game of Monopoly with Ronnie (the Play Therapist) tonight, but went down. Drew was a bit upset that his Dad couldn't come up and stay as Dane had a stomach upset and we couldn't risk infecting Drew, I was upset about not going home to spend time with the other boys - but Drew's health comes first.

Thursday 2 April 2009

Drew had some surprise visitors from Taree today, Uncle Ross was in the hospital for a day procedure and Aunty Jenny and Sheridan popped in. We were lavished with chocolates, donuts, soft drink, devon and of course tomato sauce - Drew was ecstatic. Drew watched the replay of last nights game. Drew is still in hospital as he has very litte neutrophils (.2) and is still on antibotics and anti histamines. The Doctors think he had a reaction to the L-Asparaginase, which now means he can't have it any more and will have to have P-Asparaginase. The brothers returned tonight due to no soccer training with the rain, and the Potts' came back as well as they had to stay close to the hospital overnight. It was a lively room tonight.

Wednesday 1 April 2009

No April Fools Jokes today. Drew actually got up out of bed and stood on his leg, the swelling seemed to have subsided quite a bit as well. The morphine was halved in the morning and turned off in the afternoon. All Drew's brothers came up on Wednesday night and we had a nice family dinner, albeit spread over 2 rooms. Drew played some games with the boys and fell asleep just as the Socceroos kicked off - I couldn't believe it - he really must have been tired.

Tuesday 31 March 2009

Drew was whisked off for an ultrasound first thing this morning. It showed that there was still fluid between his tissues but it was improving, which was good. Drew was still on morphine but started moving his leg around in bed and putting a bit of pressure on it, the redness on both legs was subsiding as well. He managed a bit of school work today. The temperature the night before must have taken its toll, because Drew had a huge sleep this afternoon. We settled down to watch Short Circuit with a 'bag' of popcorn, just like the movies, except we were in bed.