Monday, 31 August 2009 - Day +21

Drew's temperature has been stable today, but his cough has continued and is pretty hacking. Drew has been taking an antiviral drug called ribaviran and the Drs have arranged for him to have an immunoglobin drug in conjunction with the ribaviran to hopefully prevent Drew getting pneumonia, which he has shown no signs of yet, but is susceptible to. The drug which doesn't even have a name at this stage, had to be signed off in America for Drew to be able to receive and as they were asleep, that won't happen until tomorrow. His white count went up slightly but not as high as it has previously been and the neutrophils are still sitting on 0.2. No bone pain as yet (I probably shouldn't have written that because now he'll no doubt get some), but he did need platelets today.

Sunday, 30 August 2009 - Day +20

Drew spent most of today alone, as his brothers headed back around 10.00am for Kyle's soccer final (which they won the first leg - must have been the song Drew wrote) and Mum was downstairs at a Children's Cancer Seminar (which was very interesting, but also very overwhelming in accepting that this is an ongoing lifelong experience). He did well and was even asleep when Mum came up to have lunch with him. Drew's chest x-ray from the previous day was clear, but the white count has stayed the same. No temperatures today, appetite has gone off a bit.

Saturday, 29 August 2009 - Day + 19

Drew had a restless night, with his temperature reaching 39.5 through the night. He wasn't very happy or well when he woke this morning. His white count had dropped slightly again, so the Drs are going to double the medication which increases the growth of white cells (and causes Drew bone pain, which has subsided over the past couple of days). The 'snot' test and swab as well, was on again today - Drew was over the moon - NOT. The results came back and he has a common cold, not swine flu - although even common colds aren't good when you've just had a bone marrow transplant and don't have very many white cells. He picked up when his brother's came and Kyle put his lego set together, which Drew received for doing excellent school work last week. Hopefully those white cells will show a nice little jump tomorrow.

Friday, 28 August 2009 - Day +18

Drew's cough that he has had since the beginning of the week, seems to be getting more phlegmy, rather than just a dry cough and his runny nose is back. hmm. He had to have a mucus (snot) sample taken (they stick a thin little tube up his nose and the other end is attached to suction, to suck it out - beautiful). Unfortunately, they didn't get enough to run the tests, so he'll have a rerun tomorrow. Mid morning he developed a temperature of 38.5, so antibiotics were started, and the other antibiotics he had been on in case he had a skin infection, which proved negative were stopped. He was also started on Tamiflu in case it was the dreaded swine flu returned. Despite the above Drew was in good spirits today, he beat me in bowling 3 games to nil, finishing off with 3 strikes just to rub it in. He did a fair bit of school work too. His white cell count dropped slightly again, but his neutrophils stayed steady at 0.2.

Thursday, 27 August 2009 - Day +17

Drew was low till about lunch time today. Barbara his ward nanny came, but Drew didn't want me to leave today. So we all played bowling on the WII, with Drew winning one and I won two, with Barbara missing the boat. We then watched Space Chimps and Drew was back to his normal self. His white count went back up to 0.52, with his neutrophils staying at 0.2 for the 5th day in a row - all perfectly normal apparently. Something exciting happened today, - he was allowed to leave his room with a mask on and do one lap of the ward. He got to see Cooper, a friend he made at Ronald McDonald house. Coop is recovering from a 5 1/2 hour operation he had on Wednesday.

Wednesday, 26 August 2009 - Day +16

Drew's white cell count dipped slightly today, but that is normal, his temperature was slowly going up, but stopped at 37.9 and went back down. His bone pain also didn't seem as intense today, but his spirits are a little low. He is missing soccer, cricket and just being a normal kid and doesn't know his place in the world, he told me. Drew's appetite on the other hand is still going strong. He has been making up songs with the music therapists and may be a budding rock star.

Tuesday, 25 August 2009 - Day +15

Drew's white cell count went up again today and he has .2 neutriphils, when they get to 0.5 for 3 days in a row that means he has engrafted (stage 2). Again apart from his bone pain, which is a side effect of one of the drugs he needs to take, to encourage his body to make white cells, he is in great spirits. Drew's food intake is awesome, even the Drs got a bit sidetracked this morning as they watched him devour, 2 fried eggs and 3 rashers bacon, after a bowl of coco rocks!!! Apparently this is quite rare at Day +15. We WIIed today, Drew winning 2 games of bowling to my 1. His record Aunty Donna was 232 pins. Any of Drew's friends or family reading this blog who have skype are more than welcome to ring him, just text me first so we can make sure we are ready. Thanks for the message Joey and Jacob, notice there was no mention of the Jets this week. :0)

Monday, 24 August 2009 - Day +14

The Doctors and Dietitian were so impressed with Drew's eating, that his intravenous food (TPN) was weaned down through the day and taken off tonight. Drew's white cell count is increasing and all is going well, with only his increasing bone pain bothering him. Drew did some schoolwork, played the playstation and the WII with Barbara.

Sunday, 23 August, 2009 - Day +13

Today I played the WII with my brothers, we played bowling and Kyle won. After the boys and Dad went home I played soccer on the playstation and watched the movie "Rainman" with my mum. I ate heaps today, no nose tube for me.

Fun on the WII

Saturday, 22 August 2009 - Day +12

Drew has needed a bit of pain relief as he has been suffering a fair bit of bone pain, particularly at night. This is due to one of the drugs he is receiving, which promotes white cell growth. He also had a dressing change today, which due to the sensitivity of his skin, took 90 mins to get the dressing off, I think everybody was relieved when it was off. Mind you, Drew ripped the last bit off and was no where near as gentle as Laura (the nurse) and I had been. Drew enjoyed a nice freshly cooked chicken for dinner (he can't have food that has been cooked for more than 30 mins), with his brothers and enjoyed beating the nurses (Laura and Katie) at bowling on the WII.

Friday, 21 August 2009 - Day +11

Drew spent the day with Aunty Trish, making music with Zerifa and of course playing the WII, whilst Mum went up to Newcastle to surprise Kurt at his regional public speaking final, picking Dane up along the way. Kurt spoke really well, he didn't win, but received a highly commended. Mum and his school teacher were both very proud.

Thursday, 20 August 2009 - Day +10

Drew's white blood count is on the upward trend, which is a good sign. He needed a platelet transfusion today, but is going well. The Dietitian said if Drew keeps eating the way he is, he may prove her wrong and be the first patient not to need a nasal gastro tube, and he is determined not to have one put back in. Heather (the play therapist) put a WII in Drew's room today and he had fun with both Heather and Barbara (Ward Nanny) playing bowling and baseball.

Wednesday, 19 August 2009 - Day +9

No sadness today. Rash still there, Doctors stopped one of the antibiotics Drew was on to see if the rash will go away. Tomorrow is day +10 so engraftment can happen any time from here on in, typically around Day 21 with a cord blood transplant. Drew did some music with one of the Music Therapists, some reading, maths and grammar today. We are also nearly at the end of Harry Potter's 'The Philosopher's Stone", which he is enjoying greatly. Watching RPA tonight (we can't get enough of hospitals), Drew even recognised one of the drugs they spoke about that he had had.

Tuesday, 18 August 2009 - Day +8

Drew woke up sad again this morning, he is missing his dog desperately and his brothers of course. He cheered up pretty quickly today. Drew had some pains in his legs last night, which only lasted for about 10 minutes, but were pretty intense. The Doctors are really happy with him. A rash appeared on his body today, but it is too early for an engraftment rash, so its just a rash. He has managed to eat some food as well, I think he is pretty determined not to have that nasal tube put back in so fingers crossed. Drew did some school work today, and spoke to Miss McGeachie, Miss Cinitis and some kids from school, which was a nice surprise for him. Big hugs to you Dr Helen, with have been thinking of you too!!!

Monday, 17 August 2009 - Day +7

Drew woke up and was a bit sad this morning. His ward Nanny Barbara came and visited Drew today, they read and played the playstation and Heather came in for a match too. Drew brightened up this afternoon. His temperature is under control, but he did return a strep infection, so his antibiotics were changed - other than that he is doing really well.

Sunday, 16 August - Day +6

Drew had a bit of a rough night, he was a bit restless and had a vomit or two. Dad was also a bit worried he was going to fall out of bed. He has switched from morphine to another drug called fetanyl for his mucositis, which seems to be getting better. Drew still hasn't eaten anything and is being fed intravenously through his central line, which is normal. He had visits from Leanne & Terry, who had a very special present for him and Lawrie and Christine popped in too. His temperature was still a bit up, and he received a blood transfusion and platelets, but he was bright and chirpy throughout the day. Thanks to everyone leaving comments and the text messages we've received throughout the week, it keeps all our spirits high.

RT Team - we're looking forward to seeing that mural, hopefully sooner rather than later!!

Saturday, 15 August 2009

Drew is still doing remarkably well and still no temperature, although the Doctors remind us that it will come. Dad and all the boys arrived today, so Drew was very excited and of course out came the playstation and the World Cup. Dane and Kurt both won their football games today and they were both excited about that. Uncle Bones (Darren) and Lucy came to visit as well, so he has had lots of new faces to keep him amused. Just before leaving with the boys to go to Ronald McDonald house the temperature came.

Friday, 14 August 2009

This morning when Professor Marshall came in on his rounds, Drew's there saying "Do you notice anything different?" Of course he was talking about his missing nasal tube. Drew had visits from Aunty Trish and Aunty Bev today. Drew has been really well, although he was a little put out this afternoon, because we had to change rooms (the positive pressure air conditioning wasn't as positive as it should have been) he was sulking around, which was more related to the fact he didn't think the playstation would come with him , which it did. Once installed in his room with the playstation he was fine, whilst Mum re set up the new room. At least in this room the air phone works, so the visitors who can't come in the room can talk to Drew on the phone.

Thursday, 13 August 2009

Drew is going along great guns, still no temperature. His nausea and vomiting have been under control until he had a sip of chocolate milk, which hit the bottom of his stomach and bounced straight back up, bringing the nasal tube with it. So the nurse had to unstick it from his face and pull it out through his nose, it wasn't painful, just a bit uncomfortable. I think Drew was actually quite pleased it was out. He told me later that night, he thought he'd vomited up an organ, I told them they're pretty attached to his insides and I don't think anyone has ever vomited one up. Barbara his ward nanny came and read to him for a while, and he played the playstation too.

Wednesday, 12 August - Day +2

Drew's mouth and throat were a bit sore today and the Doctors have increased his morphine. The feed through the nasogastro tube seemed to also be making him vomit (3 litres in the last 2 days). They stopped the feeds this morning and tried a different anti nausea drug on him, which seemed to do the trick. Drew had a special visit from Lawrie McKinna today and Drew gave him a song he made for the Mariners, he is going to play it to the boys before we play the Jets on Friday night. Lawrie had a few special treats for Drew which made his day.

Tuesday, 11 August, 2009 - Day +1

Again Drew was a bit flat this morning, Professor Marshall said its all or nothing with Drew, so he'll know when he is getting better. His throat was a bit sore, which Drew thought was the nasogastro tube, but it is more likely mucositis starting from last weeks radiation and chemotherapy. About mid morning Drew sparked up and was quite bright and chirpy all day. Although he was vomiting on and off throughout the day. He had a visit from Vanessa and helped paint his outside window. All in all Drew didn't think it was too bad a day.

Drew

Transplant - What Happens Now.

Over the last 9 months Drew has had intensive chemotherapy, which has kept the leukaemia in remission and also prepared Drew for a bone marrow transplant. Over the last week in hospital, he has had total body irradiation, which kills any remaining cancer cells, and also suppresses Drew's immune system . He has also had chemotherapy to destroy his own bone marrow and immune suppression drugs. The total process will hopefully eradicate all remaining cancer cells, destroy Drew's bone marrow to make space for the new bone marrow and suppress his immune system so it does not attack the new cord blood and allows it to engraft. A day after this treatment cycle is given Drew had his fully matched umbilical cord blood transplant. It will take between 10 and 34 days to engraft (start making new bone marrow), during this time Drew will be very susceptible to infections, when this happens Drew will then be placed on antibiotics, as well as the numerous drugs he is already on. Once engraftment happens Drew's body will begin to make its own bone marrow again, but the engraftment also has its own complications, which Drew will hopefully have minimal and mildly, the transplant was the easy part the hard road could possibly and probably still lie ahead - but one thing is for sure he has been a champion throughout.

Monday, 10 August 2009 - TRANSPLANT DAY - DAY 0

Today was the big day. Drew woke up pretty flat, even Professor Marshall noted on his check of Drew that he wasn't bouncing around like previous days. He also delivered the news that Drew was going to have a nasogastro tube inserted - that went down well. Drew was given a drug that made him pretty relaxed and Lucy and Jo got it in without too much drama, Drew got used to it as the day wore on. He felt sick on and off throughout the day, but was pretty calm, whereas the day wore on I got more emotional. At 2.45pm the two scientists brought Drew's cord blood up in a tin of dry ice. It is still frozen on arrival in his room. They check all the details of the cord and Drew, before thawing it in water at 37C, which only took a couple of minutes. The blood is then syringed out of the 'bag' and pushed slowly into Drew's line. In the first couple of minutes Drew was quite ill, but he settled down as the rest of it went in. The last of the blood in the bag is mixed with saline to ensure they get it all out and was pushed into Drew's line again. He was very pale and his blood pressure did go a bit high. By 3.15pm it was all over. Drew needed a tablet to bring his blood pressure down and then he went to sleep for an hour or so. He is on a myriad of medications, but had a good nights sleep. That was the easy part, now the hard part begins.

Sunday, 9 August 2009 - Day -1

Last day of 4 showers - yee haa. Drew has been really good with them, though by this afternoon he was pretty much over it. We had pizza for lunch, with Drew looking out of his window to us on the balcony, holding up signs for more pizza. His ward Nanny battled the City to Surf crowd today to bring Drew in a Qantas plane. Drew was rapt and played with it all day. He had Cyclophosphamide today, which will be the last of his chemotherapy. He was a bit tired and over it tonight, but a visit from Uncle Darren and Aunty Lucy cheered him up. Drew went to sleep pretty much after they left. Tomorrow is the big day!!!

Saturday, 8 August 2009 - Day -2

Drew was looking forward to his brothers and Daddy coming down today. Unfortunately, because Kyle had a tummy bug and Dad a bit of a sniffle they weren't allowed into the room, and Kyle was allowed onto the ward. He had to view Drew from the balcony gloved and masked and Dad, Kurt and Dane got to talk to Drew through the window. Today was three drugs Cyclophosphamide, Atgam (which is the one from horses) and the commencement of another drug called Cyclosporin which he will be on until Day +100. He was pretty knackered by the end of the day but is still in good spirits. Drew also received a signed soccer ball from the U/14s Thunder side (Kyle's team) and a playstation game, which he was quite excited about.

Friday, 7 August 2009 - Day -3

Another 4 shower day, but now it is half way. Drew only had one drug today called Thiotepa, which is the drug that makes him have to have 4 showers. It is excreted through the skin and can irritate the folds of your skin so having 4 showers alleviates that. Drew is feeling pretty good today and is still full of energy.

Thursday, 6 August 2009

Today is the start of when I have to have 4 showers a day for 4 days. I told my Mum I didn't have to have one for 16 days after that, she said it didn't work like that. I started my chemotherapy which will go for 4 days, before I have my transplant on Monday. My ward Nanny Barbara came to visit me today, she bought some books to read and some photos from her home in South Africa, which is in the Kruger National Park. There were elephants, zebras, lions, hyenas and cheetahs. I did some maths and played the playstation. By the time my third shower came around I was over it and pretty much went to sleep early.

Wednesday, 5 August 2009

Hello 4G thank you and everyone for their comments on my blog, and everyone's text messages and calls. Today was my final day of total body radiation, so no more laying down with all that packing around me. The night's were really the hardest, but tonight I was OK. I got my sticker chart, a football magazine, a beanie and a certificate which had three footballs (soccer) on it. Tonight I sang my way through and told jokes to the Radiation Therapists and they told me jokes too. For the last part my Mum pretended I was an airline pilot and we were bringing in the plane to land. I was glad when it was all over. My Mum taped it so my brothers could see. When I came back to the room I had some anti nausea medication, which I seemed to have a bit of a reaction too and then I was very sad, I miss my brothers, my dog and my home.

Tuesday, 4 August 2009

Drew woke up bright as a button today and was happy to see the Radiation team, who were the same ones from last night. No problems this morning, he watched the rest of the movie Goal and part of Milo and Otis and we were back in the room by 10.00am. He was given a drug today that destroys his T-cells, to help avoid rejection of the cord (apparently that's what your T cells do - fight foreign things in your body), this drug comes with its own set of side affects, he didn't have any initial reactions, but that isn't to say he won't have any. Back for Radiation Therapy at 5.00pm, no vomiting today so that was great. At the half way stage Drew got upset, because his whole body was aching, like the champion he is he chose to go on, rather than have a break, which would have meant getting unpacked and repacked again. He also got cold and when we got back to his room he had a temperature of 39 and to quote him 'felt like crap'. Antibiotics started, along with the host of other drugs he is on, had him feeling a bit better later on.

Monday, 3 August 2009

We were up early this morning and off to Radiation at 8.15am. Drew was very excited and looking forward to it, the same couldn't be said of Mum. The packing him part takes the longest, then we all leave the room and he is in there by himself for about 3 minutes whilst they shield his head and then they go in and remove the filter from the machine and he is in there for another 17 minutes, before we all go back in and they turn the table around and do the other side. My stomach churns while he is in there. Around lunch time Drew became sick, he was quite chirpy in between vomits. He met a volunteer ward granny, Barbara, who will come in a couple of times a week to visit Drew. We didn't go down for Drew's afternoon session of radiation until 6.00pm and as Drew was vomiting, they had to keep stopping and we didn't get back until 9.00pm. He was zonked and still vomiting, they gave him an anti nausea drug he hadn't had before and that did the trick, he slept until 8.00am the next morning, to start all over again.

Sunday, 2 August 2009 - Day -8

We had pancakes and hot chocolate from McDonalds from breakfast and went to Coogee to eat it. We sat high on a wall that overlooked the ocean and the beach and the view was great, but it was very cold even though the sun was shining. There was a park nearby and there must of been 100 dogs of all breeds, shapes and sizes, I even saw one like Quincy. My brothers left at 9.30am to go to Bellbird which is 2.5 hours away for my brother Kyle to play soccer. He won and saved a penalty. I finished my flags for my chart, when I reach 100 stickers I get a trophy

Saturday, 1 August 2009

This morning we had a visit from Aunty Trish & Pam, and then my brothers arrived around lunchtime. We spent the afternoon playing the playstation (just for something different) with my new friend Cooper and his brother Cody. Tonight we had hotdogs for dinner and I didn't have to go to the hospital at all today.

Friday, 31 July 2009

We had this morning to ourselves, before heading up to the hospital around 1.00pm for Drew to plan his sticker chart with Heather, the Play Therapist. At 2.00pm it was an appointment with Dr Sue to go over the transplant again and sign consent forms, which took a good 90 minutes. Back to Ronnie Macs, where we had a quiet night watching tv.