Thursday, 30 July 2009

Today was a busy day. We went back to the Cardiologist, whose machine was working today and Drew had an Echo and a ECG, both were good. We then went to Radiation Oncology so Drew could have a practice run, Heather the Play Therapist came with us. Next it was an appointment with Liane and Heather, Liane is the Psychologist down here, who will help Drew with his fear of needles, etc. After that we went to see the Opthamologist and Drew's proudest moment of the week, the girl who examined Drew before the Doctor, whipped the eye drops in 2 seconds flat, Drew was bursting with pride at how well he had done. Back to Ronnie Macs, where dinner was once again provided for us (I could get used to this). Brett White from the Storm was also in the house visiting another little boy, who took him to meet Drew, who was very excited. Drew thinks today was the best day so far.

Wednesday, 29 July 2009

Drew greeted Lucy with a big smile this morning, so no grudges from yesterday. He was back to have another swab, just to make sure all is good with the swine flu. Drew was already to go, and then shutdown. As we had a 10.30am appointment with the Cardiologist we ran out of time for the swab and went down for that appointment. Unfortunately the cardiac machine wasn't working so we struck out there too. In the 15 mins we were down there Drew came good and told me he was ready to do the swab (fingers crossed, you just never know). We went back in the room with Lucy and bingo within 5 minutes it was all done, without any further drama. However, now the Drs have concerns whether Drew will sit still and handle the radiation, so tomorrow we are going for a 'practice' run, where they will put the padding on him and see how he goes. If he doesn't handle it, he will have to have it done under general anaesthetic. I don't think he will have a problem as there is no 'pain' involved, but I'm just not sure anymore. In the afternoon we went to Bondi Beach and then we went up to The Gap, trying to enjoy some outdoor time. We had chips for lunch, saw Maxie from Bondi Rescue and Drew had fun playing on the beach. He was very proud of himself for getting his swab done. Lawrie from the Mariners rang too, so all up it was a pretty good day!

Tuesday, 28 July 2009

The happy gas went extremely well (there wasn't any spare for me)Drew didn't even know the cannula had been inserted. We then went down for the heart test. This particular test hadn't been done here for a couple of years, so that was reassuring - not. Drew had a drug administered and had to wait 20 minutes. They did 4 pictures of Drew's heart each taking 5 minutes, then a Dr and a Professor were in for the second part of the test. Drew was given a drug to increase his heartbeat, it got to 154 at one point. This test was to see how his heart coped under stress, it passed with flying colours. We then went to Radiation Oncology and they measured him up for his radiation. It was amazing, Mum now knows what the inside of his body looks like too. We went and saw Dr Sue, Dr Paddy and Lucy later in the afternoon. Drew is scheduled to be admitted to hospital on Sunday and will start his radiation on Monday, 2 sessions a day for three days. Whilst there Lucy went to change Drew's dressing - not good, Drew got very anxious and unco-operative and what should have taken 5 minutes took 30 minutes. We finally went back to RMH where we had a lovely dinner provided by the Balmain Inner Wheel and met some lovely people.

Monday, 27 July 2009

We found where we had to go today without any problems, until they said Drew needed a cannula inserted (we had been told they would use his central line). The needle fear resurfaced and Drew started to struggle and fight so he wasn't able to get the test done. Mum was cranky because Drew wouldn't try any of the relaxation techniques we had been practising. Tomorrow we will go to the ward and they will give him happy gas (I wonder if they'll have any spare for me :o)!!!) whilst they insert the cannula and then we'll go for the heart test. Will meet with the Dr in the afternoon and then will know when Drew will start his conditioning. Tried our first video call tonight, but unfortunately it kept dropping out :o(.

Sunday, 26 July 2009

Frantic day, last minute rush to get things done, broken up by a game of soccer half an hour away. Call from Dr Liz to say Drew's swine flu test was negative, so he is fully recovered. We waited for the boys to return before heading off to Sydney in the dark and rain. We arrived at Ronald McDonald house at 8.15pm and settled into our room - Drew was very excited, Mum was very tired. Bye Tristan, thanks for your good wishes, sorry we didn't get to see you before we left.

Saturday, 25 July 2009

Off to watch Dane play soccer and then 1 last lunch altogether at home, before Dad, Kyle and Dane went off to Port Macquarie for Kyle's soccer.

Friday, 24 July 2009

We spoke to Sydney today to confirm the details for next week, soon after we received a call from John Hunter, asking us to bring Drew back for another swine flu test :o(. He was up and back within two hours. At this stage, Drew is having his heart test on Monday, measuring up for his radiation on Tuesday and may not start his conditioning until the following Monday to ensure he is fully recovered. Drew had a productive day, cooking profiteroles in the morning with Dad, which were scrumptious and a surprise visit from his friend Joseph in the afternoon. Drew and Joseph are very special little friends and it is always a joy to see them together.

Thursday, 23 July 2009

Drew played the playstation, we had a 'party' for lunch, with pizza and mixed lollies, with Nathan and Dean from across the road. Drew is enjoying his last days at home.

Wednesday, 22 July 2009

Today it was up to John Hunter for what will be our last time for a while. Drew had to go into the isolation room in the day unit in case he still had swine flu, which surprisingly he was re tested for. He had a good session with Jodie and we were out of there by lunch time. We went to say goodbye to Dr Kristin, who had a lovely present for Drew. Kristin had handwritten a book of Norwegian fairytales which she had told to Drew in his first days at hospital. It was complete with pictures, drawings and a quiz - a lot of love had gone into it and Drew loved it.

Tuesday, 21 July 2009

Drew's hair is growing back at a great rate of knots, pardon the pun. Unfortunately he won't get the chance to get knots because it will all fall out with his conditioning treatment before his transplant. He is enjoying himself at home, having all his brothers around and planning what we are going to eat before we go to Sydney.

Monday, 20 July 2009

All well, stay at home day, playing playstation and watching the telly. I'm not game to let him outside other than to throw the ball to Quincy.

Sunday, 19 July 2009

Peter, Kyle and I have managed to escape the flu, and Kyle was off to soccer today, where he had a run on the field. All the other boys were well enough to help clean up the house, they were overjoyed :o).

Saturday, 18 July 2009

All soccer except Daddy's was cancelled today, so again the boys didn't miss out on anything. Each day the boys are getting better and even Dane had quite a spark about him today.

Friday, 17 July 2009

Drew and Kurt are getting better each day. Dane went to the Doctors, they don't test for swine flu unless you are admitted to hospital, but he received medication as though he had it. So of course we will just be staying home for the next couple of days.

Thursday, 16 July 2009

Results came back this morning and Drew tested positive for Swine flu (which is a sub-type of flu A) Wonderful! Dane has also come down sick and the news reports are full of people and children dying from it - I think I live under a worry cloud these days. Drew however, has not had a temperature and Dr Frank is happy for him to go home and continue his Tamiflu. The transplant has been put back a week and we will now go to Sydney on Monday 27/7/09. The results of Drew's last MRD, which shows how many leukaemic cells are left was very good, so there are some bright spots. Dane is quite sick.

Wednesday, 15 July 2009

Drew's results came back positive to influenza A today and the results for swine flu won't be back until tomorrow. Drew had his appointment with Jodie in his room and poor Jodie had apron, gloves, mask and goggles on - she felt like she was going to melt and the masks can be quite claustrophobic. Drew volunteered this week to show Jodie how he had been practicing putting his eye drops in at home - Jodie awarded Drew his BAM badge, the first one she has ever given out. Drew was very proud of himself. Kyle and Dane spent the day at hospital, but Kurt had to stay at home as he too is sick. Drew was moved to another room where the air conditioning vents outside to stop him infecting anybody else. He has started on Tamiflu and apart from his cough and sore throat, he is bright and bubbly.

Tuesday, 14 July 2009

Drew woke up feeling a bit off this morning and his temperature was 38.4, which meant off to hospital we went. Drew had a sore throat and was coughing so was placed in a room away from the other oncology patients and the Nurses had to get all dressed up in aprons and masks. Drew had to have a nasal and throat swab done. Once all that was over and done with and the panadol started to take effect he had a huge sleep for 4 hours and was quite chirpy when he woke up, but wasn't interested in eating.

Monday, 13 July 2009

Drew had a nearly perfect day today. No school work, no doctors appointments, got to watch Spongebob Squarepants, play the playstation and last but definitely not least, Mark Webber won his first Formula 1 Grand Prix (except his brother didn't get the taping right, so he didn't actually get to see it). A bit of sport thrown in would have just topped it off, but after hurting his ankle yesterday and the days to we go to Sydney counting down, I'm treating him with kid gloves at the moment.

Sunday, 12 July 2009

Drew is enjoying his extended time out of hospital. Since the beginning of March this is the longest stretch he has been out, that of course will draw to a shuddering halt soon, when he will then have his longest and probably most horrendous stretch in. He was playing cricket out in the backyard when he let out a blood curdling scream, I had images of him pulling his central line, but he had rolled his ankle. He milked it for a while, but made an amazing recovery after Dane set the table for him, and was perfectly OK by bedtime.

Saturday, 11 July 2009

Despite the rain and lots of grounds being closed everyone got to play soccer except Kyle. Drew's old team beat his old club again, 2-0. Dane won 9-0, Kurt's team lost 3-0 and Daddy won 5-4. We spent the afternoon at home tidying garages and the house - yuk!

Friday, 10 July 2009

Stay home day, Drew's last day of school work before the 'school holidays'. Hello Joey & Jacob, thank you for your lovely comments. Drew actually had his Jets jersey on today, but he is definitely staying as a Mariners supporter, he did want to know if you knew the score of the Jets last game in the Asian Champions League :0).

Thursday, 9 July 2009

Stay at home day today, we are nearly through all the tests, with only the Opthalmologist (which we all can't wait for), 1 more trip to John Hunter and a heart test in Sydney to go before Drew begins. The computer is fixed, the garage door is fixed, the car is fixed and hopefully in a few months Drew will be fixed too.

Wednesday, July 2009

Today was a great day, nearly! Besides the garage door breaking and the car door jumping out and hitting me in the face it was good. Drew had an appointment with Jodie, to work through his worries - today we worked on eye drops - that went well until I suggested we practice with saline or water - NO THANK YOU!!!! - next suggestion. After Drew came back to his happy self, we caught up with some nurses from J1 and Dr Kahn (a mad mariners supporter), before heading off to see our friend Sandy's Mum, Helen who was down from Queensland and who we hadn't seen for a very long time. We had a really enjoyable time before heading off to our next Helen (Dr) and had a really nice hot chocolate and wicked dessert with Doctors Chris and Kristin as well - we were in good hands if anything were to go unexpectantly wrong. It was a bit sad though because it was the last time we would get to see Helen & Chris before they headed home to England. We'll miss you!!!

Tuesday, 7 July 2009

We were off bright and early this morning to see our Dentist Patrick. Drew was so excited about seeing him, if only he was that excited to see the Opthalmologist next week. We also had an appointment with Drew's Cardiologist to make sure Drew's heart was OK after the last lot of chemotherapy - which it was. We are moving closer and closer to the day. Drew also received two pillowslips made to match his quilt and a bag to put his quilt in from another Helen in our lives.

Monday, 5 July 2009

No hospital or Doctor's appointments today, so Drew got stuck into his school work and had a school lunch order. The letterbox was safe today - its still in pieces from last week, but my computer screen decided it didn't want to play anymore and the car has got something stewing with it too. Hopefully we're getting all this bad luck out of the way and are going to have 100 years of good luck :0).

Sunday, 5 July 2009

Nice uneventful day at home, Drew played with his 'Formula 1 jaguar', Mummy went for coffee, Daddy played golf, Dane played next door and Kyle and Kurt watched Foxtel - gee we almost seem normal.

Saturday, 4 July 2009

Off to soccer today, Dane's team won today, but unfortunately Kurt and Daddy's team lost 4-1 and 5-1. Drew and I came home to the warmth and of course the playstation and the surprise installation of Foxtel.

Friday, 3 July 2009

Home today, it has been a big week. Drew did school work, I caught up with stuff in general. Drew's teacher from last year came to visit him later in the afternoon, which he was very excited about.

Thursday, 2 July 2009

The 5 of us left for Sydney around 9.00am (Kurt was sick and stayed home) and had a pretty uneventful ride down, arriving with plenty of time to spare. Drew was very excited and decided on arrival at the hospital, that he liked it because it didn't smell like a hospital. We met Dr Russell and Lucy, the nursing coordinator and had a quite in depth discussion, outlining Drew's medical history, the process and possible complications. There are many and some of them are very frightening. We are due to go back to Sydney in two weeks for a heart test which involves radioactive material, which means a needle - Drew has decided he is not looking forward to going now. We will then return on the 19 July ready to go into hospital on the Monday. Drew will have conditioning treatment, including radiotherapy leading up to the transplant on 30/07/09. This destroys his bone marrow and immune system, he will then receive a very well matched cord blood transplant. It is very confronting and there are a lot of risks,but without a crystal ball, you have to make the best decision based on the information you have and the confidence you have in the Doctors.

Wednesday, 1 July 2009

Off to hospital dark and early today. Drew was having a bone marrow aspirant, to test how his last chemo has worked, an appointment with Jodie, the psychologist to work through his anxieties about needles and his treatment and a GFR, which tests his kidney function (and involves a needle). He went up to theatre reasonably early and they put the cannula in for his GFR while he was asleep, he was back just in time for the GFR and Jodie came down later in the afternoon - a busy day, but it was better getting it all over and done with. Dr Frank came and saw Drew late in the afternoon and let us know that Drew's transplant Doctor in Sydney wanted to see us the next day.

Tuesday, 30 June 2009

Today was a home day, but not without its excitement (no we didn't win Oz Lotto). Drew had ordered a lunch order from school, so after getting stuck into some school work, at 1.00pm we set off to school to get it. The garbage truck was at the house next door and after reversing out of the garage I contemplated whether to wait or go, without checking where I was on the driveway I decided to go. Well, we now have no brick letterbox and a big gouge in the rear panel of the car. It never rains but it pours. Drew just sat very quietly in the back, whilst I cursed and worked out how I was going to get off the remaining bricks. We got off and Drew got his lunch order, which he enjoyed, I don't think he would have been game to say otherwise - maybe we should have been in hospital :0)

Monday, 29 June 2009

Our time at home came to an end today and we were back off to hospital. Drew had an appointment with Dr Frank first. He was very pleased with how well Drew has recovered from his last bout of chemo and his blood count was very good. Next Drew had an Audiometry test, which showed he has perfect hearing (that was noted in my memory) and then a Lung Clearance test. There was about a 90 minute wait to have this 10 minute test done, but once completed we were back off home again.