Wednesday, 30 September 2009 - Day +51

What could today bring - well at 10.30am Drew was still asleep and I had to wake him up, firstly for him to take his immunosuppressant drug which needs to be taken at the same time morning and night and secondly so I could inject the anti clotting drug. So the day didn't start overly well. The Drs needed to take blood 4-6 hours after the anti clotting drug had been given, by a different cannula. Drew was also supposed to be having a lumbar puncture, a bone marrow aspirant and an ng tube today to see if any infection can be found there, but these were postponed to next week due to the blood clot. A gastroenterologist came to see Drew as well, he thinks his tummy is OK but he is going to have an endoscopy and colonoscopy tomorrow. As Drew needed a different needle to get blood today he didn't think he had enough bravery to do it alone and wanted gas, which meant he couldn't eat, and this wasn't due to happen until 4.00pm, in between times the endoscopy had been decided upon which then meant he couldn't eat until tomorrow afternoon. He survived on 10 grapes today and was starving. Drew did go well under the gas today though and we didn't need to hold him down. One good thing about having the procedures tomorrow, meant I didn't have to inject the anti clotting medication again until Friday or Saturday, lets hope the clot just stays where it is or has already gone, he'll have a another scan to check that tomorrow too - so until then....

Tuesday, 29 September 2009 - Day +50

Drew woke up today to see me sitting across from him in his room, which made him happy. Temperature still there, surprise surprise. The CT scan didn't reveal anything and they took some extra blood to run some different tests. Drew's arm where the PICC is was really hurting today so they organised an ultrasound of it which revealed a blood clot, which in turn meant the PICC had to come out. There went the access line, so he had to have a cannula put in, the PICC pulled out and a little cannula put in his leg to inject the anti clotting medicine - it's like OMG what else can we put this poor child through. Drew was eager to have pizza for dinner but due to the above procedures being done 6 hours after Drew had last eaten at 4.30pm, under 'happy gas' he wasn't able to eat. Drew asked wasn't there an easier way (he was desperate for that pizza) and when I explained to him that yes we just put on the patch and an hour later put in the cannula he said he'd do it. Dr Michelle and I had serious doubts it could go through with it, but he did without a drama, all three procedures. The last one hurt and then Drew wanted me to do the injection into the cannula, that stung too. I WAS SOOOOO PROUD OF HIM and so were all the nurses on the ward, Dr Michelle, Lucy and all the other people who heard about it. He had his pizza (which after all that was pretty ordinary) and banana, grapes, strawberries and cream for dessert and went to bed late but happy.

Monday, 28 September 2009 - Day +49

Poor Drew spent the day alone, I can return tomorrow morning. He is so brave, he had to have a cannula inserted for the CT Scan, which went marginally better than last Tuesday. He was very cranky afterwards and wouldn't talk to any of the Drs, Nurses or me, he probably wishes we'd all just pee off and leave him alone. Drew then wouldn't take his twice daily medicine, which needs to be taken 12 hours apart, nor the special liquid for the CT Scan. I was trying to persuade him over the telephone and finally he came around and did both. Nurse Katie took him down for the CT Scan and another Echo cardiogram, so hopefully one of these will give an answer to this mystery fever. To top off Drew's day his uncle who stayed with him last night was also sick today (different sickness to me) and couldn't stay, so he will spend the night alone too. Despite all that when I spoke to him at bed time he had had a little snooze in between the last time I spoke to him and he actually sounded much brighter.

Sunday, 27 September 2009 - Day +48

Continuing the week from hell, after Drew had gone to sleep last night I fell ill with a gastro bug, apart from feeling wretched I had to leave Drew alone and was driven down to Ronnie Macs by security. Nurse Katie took good care of him, we'll forgive her being a Jets supporter. There is a gastro bug on the ward and several of the nurses have fallen ill too, so the whole ward has been shut, no new patients, infectious patients moved out and no visitors. They made an exception in Drew's case and Daddy could go in today and his Uncle is sleeping there tonight. I'm not allowed to go back for 48 hours. Drew was quite fractious today, he didn't want to have a shower, nor get weighed in the evening - he is understandably well and truly over it, which should make tomorrow's cannula insertion interesting plus he has to have another NPA (snot sucking as he says). Temperature still in the high 38s, haven't been game to ask his blood count.

Saturday, 26 September 2009 - Day +47

Drew woke up quite chirpy today, temperature still sitting around mid to high 38's. He ate reasonably well today and didn't vomit at all. The Dietitian is concerned that he has lost 10% of his weight and wants to put an NG tube back in, we have until Tuesday to show that his weight is going in the right direction, funnily enough he didn't seem to concerned about it. Dr Drew and I practised putting cannulas into a mandarin today and trying to extract juice. The extraction part didn't work to well. We went through all the different equipment used and he seemed quite OK with all that, we taped the cannula into the mandarin and showed him that its not actually the needle that stays in your arm but a little soft plastic tube - I'll keep working on it. By the time the late afternoon came around Drew had no energy and his temperature was up around 39.3. Back on antibiotics from yesterday and an anti fungal medication in addition to the one he is already on. White cell count dipped again, I didn't find out the exact numbers to day.

Friday, 25 September 2009 - Day +46

As uneventful as yesterday was, today was the complete opposite. Drew's Doctor came in at 9.30am (Mum still in pjs - its amazing the first week or so everyone is here, you make sure you're dressed before the Drs come in and by about the 3rd week if they come and you're in your pjs you don't give a toss) and said she had booked him for an ultrasound for his abdomen, at 10.00am, a bone scan, a CT scan and an echocardiogram. Quick shower and off for the ultrasound all good there, Drew was injected with radioactive dye for the bone scan and then we went back to the room for 2 hours before having the scan - all good there. Late afternoon was the CT Scan and thats where the plan came unstuck. They couldn't use the PICC line to inject their contrast dye into (he had already swallowed 300mls of some foul tasting liquid) as it would blow the PICC line so they wanted to put in a cannula - ah sorry afraid not. We took the masked man back to his room and they rescheduled the CT Scan for Monday morning and we shall put the cannula in under gas - he seems OK about that at his stage, hopefully it will go better than Tuesday did for him. His temperature hit 39 today, although his white cell count and neutrophils were good. (Bad luck Joey and Jacob, you'll have to tell the Jets, the ball has to go between the posts to win).Hello 4G, thanks for your message, when I'm feeling better I shall drop you a line.

Thursday, 24 September 2009 - Day +45

Compared to the rest of the week today was uneventful, no procedures for Drew, his PICC line is working well. Temperature went down to 37.4 overnight, but back up to 38+ today. White cell count dipped slightly. Drew went to sleep between 4.30 - 5.30pm and slept to 8.45am the next morning.

Wednesday, 23 September 2009 - Day +44

Today Drew's Dr decided they would put a PICC line (Peripheral Intravenous Central Cannula) in to alleviate the trauma involved in getting blood from Drew. A PICC line is inserted on the inside of the elbow and fed up the arm and around the corner into a vein. It is temporary and can stop working at any time, but fingers crossed his lasts for a few weeks. A PICC line can be difficult to get in the right place but Drew's went in easily, that was the highlight of the week so far. Temperature up and down, white cell count good.

Tuesday, 22 September 2009 - Day +43

Today was worse than yesterday. Drew's cannula in his right hand needed to be replaced in his other hand so blood cultures could be done and antibiotics administered if needed. The antibiotics were going to be stopped but if his temperature rose they would need to be restarted. We wanted to use happy gas again and Drew was adamant after his experience yesterday that he wanted the other drug, medasalam. Poor Drew was so angry, but unfortunately it had to be done, so the Dr administered the gas, Drs Michelle and Antoinette did the cannula and Lucy and I held the protesting Drew down whilst they put the cannula in and drew the required blood, it was traumatic for everyone concerned. Later in the afternoon we gently removed the other cannula without too much difficulty for Drew. Despite the promise of a go of the playstation on the big screen out of the room, now that he had a free hand, he was too exhausted and went to sleep at 4.30pm. One good thing to the day, he got to have strawberries for the first time in at least 43 days (wasn't allowed to have them until Day +42) don't think they tasted that great the second time round at 8.00pm. Temperature holding steady at 38.5, got a blood count today which was on the way up again. Hope tomorrow is a better day.

Monday, 21 September 2009 - Day +42

Drew had temperatures today again of 38.5, he has been taken off the 2 antibiotics and put on a different one that he hasn't had before. To take blood today he was given 'happy gas', the first attempt to get blood went well and Drew was fine, but unfortunately enough blood wasn't taken and on the second attempt the needle didn't find the vein and caused him pain and tears. His appetite is still good, he's not sweating and he isn't unwell, so the source of the temperature is a mystery. In the afternoon when he was due to have his antibiotics his cannula in his hand blocked and a very patient Lucy perservered to unblock it, so it didn't have to be removed (yet). Drew was extremely brave throughout the whole time - I don't know where a 9 year old gets this much resilience.

Sunday, 20 September 2009 - Day +41

Drew got his finger pricks over and done with early this morning and then unfortunately got a temperature, so that meant he had to have blood taken out of his arm. After 1 attempt, where he got himself all ready and couldn't go through with it at the last minute, they then attempted to hold him down - not pleasant for anyone involved. That didn't happen, so it was decided to sedate him, it was now Sunday afternoon, and due to the time and a bit of confusion as to what dose they could use 5.5 hours later, they decided to wait until Monday. No other blood results as both of his morning and afternoon finger pricks clotted. Drew did get to go in the 'teenage room' with his brothers to watch the soccer.

Saturday, 19 September 2009 - Day +40

AAAAARRRGGGGHHH!!!! This morning we awoke to be told that the cannula inserted in Drew's arm was only to be used for his antibiotics and not to remove blood, so he would need fingerpricks or blood taken from his arm. My worst fears about having his line removed have come true only 12 hours after it being done. It took 2 hours of drama and frustration and then the promise from the Doctor that if Drew had the finger prick he could have some time out of the hospital for him to bring himself to have it done. We all had the Saturday BBQ at the hospital and then went down to the unit in Ronald McDonald House for a couple of hours. Drew was in his Mariners strip and was very happy when they won 3-0 against the Gold Coast.

Friday, 18 September 2009 - Day +39

Today was the waiting game - the getting the line removed in the morning, went to going down to theatre at 6.40pm that night - Drew was starving and I was over it. The removal is pretty straight forward, they just pull it out and let the hole heal itself. Hopefully there won't be any more temperatures and the 'D' word may be that little bit closer. They also took Drew's stitch out from his biopsy and inserted a cannula in his hand whilst he was asleep to avoid any potential dramas.

Thursday, 17 September 2009 - Day +38

Drew spiked a temperature last night, which took a while to subside. The nurses started the antibiotic at 1.30am and he slept in to 10.30am. He was pretty lacklustre all day and had a blood transfusion in the afternoon. Dr Sue has decided that his line has to go :0( and he will have it removed tomorrow morning. Drew also had another NPA (mucus sucking out of nose) done today and that came back negative so he won't have to have another one done and when he is feeling well he can get out of the room :o). White cell count dropped slightly, as expected, today WCC 4.66 and neutrophils 2.5

Wednesday, 16 September 2009 - Day Too Many

Drew was so so today, feeling ok but not really interested in doing anything. GCSF which increases his white cell production stopped today and one of the antibiotics has been dropped, so he has 1 antibiotic once a day and fluids intravenously and the other 2 medications which he will be on to at least Day + 100 orally. On Friday they will repeat his RSV test, which means more sucking out of his nose :O( and until this test comes back negative he is not allowed out of the room. We won't find out definitely, whether the alcohol locks on his line worked until next Monday, as the cultures can take 5 days to grow, if the bug is still there he will need to have his line removed. Engraftment test done yesterday, but results will take 2 weeks to return. Blood count today 6.56, neutrophils 3.7 but will probably dip a little bit now that GCSF has stopped.

Tuesday, 15 September 2009 - Day +36

Today was great, Drew had a little sleep in, but was bright, happy and well when he woke up. Blood counts up to 4.59 and neutrophils 2.6. Drew is still on cyclosporin, an anti GVHD drug, fluconazole an anti fungal drug, and two antibiotics. His stitch for his biopsy (which of course isn't a dissolving one) is still in and will come out on Friday. Aunty Karen visited today and I had a nice lunch out and then tea at Ronald McDonald House too. Drew had fun playing the playstation and WII with Heather. We finished the night with me reading Harry Potter to Drew before lights out.

Monday, 14 September 2009 - Day + 35

Today marks 10 months to the day from when Drew was diagnosed with leukaemia, 7 weeks since we've been home and 6 weeks in hospital. On a brighter note, Drew's white blood count went up to 3.56 and neutrophils were 1.8. Drew had a massive sleep in today, through the Dr's visit, not waking up until 10.45am. He ate a reasonable amount for breakfast but not a lot for the rest of the day. It's a bit strange, his count his up, he is still on antibiotics and is not showing any new viruses in his blood cultures, but he doesn't really have an appetite and doesn't seem as peppy as he did 3 weeks ago - hopefully its just the whole process catching up with him and not something new brewing. Hello Nina - thanks for leaving a comment.

Sunday, 13 September 2009 - Day +34

Today was all good news and busy. Drew's white blood count jumped to 2.65 and his neutrophils jumped to 1.3, nearly tripling overnight. Dr Sue also thought she could hear less crackles in his lungs. Although his RSV results from Friday's bronchoscopy still came back as positive. Drew had visits today from Lawrie (Mariners) and his wife Christine, Uncle Bones and from Tristan and his Mum Donna and Aunty Tina. Although they weren't allowed inside they had a good chat on the phone and Drew loved the soccer ball pen Tristan gave him. Dad and the boys left in the afternoon and we had a quiet night after such a busy day. Pity about the Jets Joey & Jacob.

Saturday, 12 September 2009 - Day +33

Drew's rash is disappearing, his cough seems to be getting better, although there are still crackles on his chest and his temperature today was still a low grade fever. We have been blowing bubbles and party poppers to make him cough and clear his chest. His haemoglobin was a bit low today and he didn't have much of an appetite but still managed to play the WII with his brothers. His great Aunties came to visit this morning. White cell count dipped slightly, but neutrophils held at 0.5, which is 2 days in a row. Drew's 10Bs won their final today and will be appearing in the grand final next week.

Friday, 11 September 2009 - Day +32

We woke Drew at 8.00am this morning for his bronchoscopy, it was all rush rush, as he had to have antibiotics finish and platelets hung and be in theatre by 8.30am - we made it in perfect timing. The Drs were all nice and Drew was out by 9.30am and then he slept, and slept and slept and slept waking up at 5.20pm. Drew's white cell count was 1.94 and his neutrophils hit the magic 0.5. He spent the night playing the playstation and watching the Mariners unfortunately lose. Despite his big sleep he was ready for bed at 10.30pm.

Thursday, 10 September 2009 - Day +31

Drew had a CT scan on his chest today, which was clear. No NPA's today and Drew's rash is losing its brightness, most of the time. The Drs suspect that Drew has an infection in his central line, so he is having alcohol put into his lines for 4 hours a day, 'his own little party' for 5 days, this will hopefully kill any germs in them. Tomorrow he will have a bronchoscopy under general anaesthetic - this will get a sample of phlegm from the bottom of his lungs, which they will test for viruses, bacteria, fungi and TB (which is routine they don't think he has it). Drew was very bright and cheery today - I knew he was getting back to his normal self when one of the Respiratory Drs, who is Scottish, walked in, and without even saying good morning Drew told him Scotland had lost 1-0 in the World Cup qualifiers.

Wednesday, 9 September 2009 - Day +30

Drew woke happy until mid morning when he had to have yet another NPA, this was a 4 person hold down job - hopefully there will only be one more and that will be negative. He still had a low grade fever and hasn't seemed his usual self for the last week. As the Drs are concerned about chest, Drew had the Respiratory Team, Physiotherapist and the Infectious Disease Dr visit him today. His rash subsided slightly, and he needed platelets. Drew was pretty bright in the afternoon, but became really sad for no obvious reason, whilst talking to his brothers, he became happy just as quickly as he'd become sad, so at least he went to bed happy. His white cell count jumped up to 1.16.

Tuesday, 8 September 2009 - Day +29

Drew slept in until 9.45am this morning and woke up to another NPA, he wasn't thrilled in the slightest about that. Just after that was finished the Dermatologist Emma, arrived for Drew's skin biopsy. This involved a needle in his upper arm for local anaesthetic, then a thin cylindrical tube which bit a little chunk of skin out, and then a stitch. Fortunately, being well seasoned now, I asked them to sedate him, which they did and we all got through it fine, especially Drew, and the beauty of the sedation is that it is an amnesiac drug, so Drew doesn't remember a thing - maybe we could use that for the next NPA. His test results from the NPA and phlegm again tested positive for RSV, and his chest X-Ray yesterday also showed a little bit of cloudiness, which may be another infection or maybe just mucus. After the drug wore off today, Drew was really crabby and wasn't co-operative with the physiotherapist who came to see him, we also had a tiff, by afternoon he came good and was eating, drinking and his chirpy self. Two Respiratory Specialists came to see him and explained he needs to try and cough, so they are watching him very closely and he may need to have a 'lavage', where he will go under a general anaesthetic and they have a look in his lungs and flush them out with saline, so they can get a sample from the bottom of his lungs to check for other germs - lets hope we don't have to go there. He also tested positive for another bug, but the antibiotic he was put on yesterday should cover that one too. Shower today consisted of a bath in bed - that was fun for the back -not. White cell count dipped slightly as did his neutrophils to 0.3. We're still smiling (most of the time).

Monday, 7 September 2009 - Day +28

Drew had a bit of a sleep in until 9.00am this morning. The usual routine, weighing, morning drugs, he didn't make the shower today. He did have to have another NPA (Nasal passage aspiration), unfortunately there wasn't enough mucus (snot) sucked out so he will have to have another one tomorrow. His blood pressure was ok today after being a bit high early last night, and he was woken at 1.00am :O( to be given a blood pressure tablet. Drew's body is covered in a rash, which appears to be getting worse, he was taken off 1 antibiotic and put on another and will also have a skin biopsy tomorrow, which may or may not tell the Dr's what sort of rash it is. His white cell count went back up to 0.83 today, neutrophils still 0.4.

Sunday, 6 September 2009 - Fathers Day - Day +27

Drew woke up when the boys and I arrived at 8.00am with pancakes for breakfast. Dad had been up since 6.00am, so no Father's Day sleep in for him - must be that comfortable bed (I think I'm used to it now :O). Breakfast was eaten, presents given, a bit of WII before the boys headed off at 9.30am for Kyle's second leg of his semi-final, which they unfortunately lost 3 - 1. Drew's blood count dropped for the 2nd day in a row, this isn't the first time this has happened. The Drs believe because he had RSV (a cold), the medication to treat that and now another infection in his line, is why his count isn't rising. He does appear to have a GVHD (graft versus host disease) rash, which is a good sign - the Drs aren't worried about him so that's good. Drew also had a platelet and blood transfusion today. There is now a gastro infection on the ward, so Drew and I will be staying bunkered down in our room (no change for Drew) to try and avoid that one.

Saturday, 5 September 2009 - Day +26

Drew woke up happy this morning (the Mariners won!) and hungry, he had Rolled Oats, Froot Loops and Special K + 2 pikelets for breakfast, that kept him going until dinnertime and a vegemite sandwich. Uncle Bones and Lucy came to visit, whilst Mum went shopping for Father's Day at Bondi Junction and then the boys and Dad arrived in the afternoon. Drew spiked a bit of a temperature in the evening, but had a good night sleep. Drew was also very happy today because his soccer team won their semi-final and he got to speak to them on the telephone, Mum was a bit sad that he wasn't there - next year!

Friday, 4 September 2009 - Day +25

All of yesterdays kerfuffle (not sure if that's spelt right?) got sorted out first thing in the morning, so that was good. Today was a big day drug wise. Drew was taken off 2 antibiotics and put on another one, as he has tested positive to a staph bug. He had his final dose of the drug with no name, he became sleepy again and his blood pressure started to rise, so they wanted him to take a tablet, which was about 1/3 the size of my little finger nail . Well Drew decided he wasn't having it, so 45 minutes later after much unsuccessful reasoning (are you reading this Jodie) I held him down and held his nose, while Renee (nurse) got the tiny tablet in - and his blood pressure went down. He also had his other antiviral drug x 3 each day, which should end on Saturday. A blood transfusion and a platelet transfusion were also in order + his GCSF and by the time all that finished it was time for his antiviral drug again - lucky they are all intravenous otherwise he would rattle. By dinnertime he was back to his happy self and the playstation. A visit from Aunty Trish in the morning was nice for Drew, as he hasn't had many visitors lately. Good Luck to his Budgie team mates tomorrow - we hope you win boys.

Thursday, 3 September 2009 - Day +24

Well today was a day of miscommunications, assumptions and not writing things down, which ended up with Drew being examined by a Dr at 10.45pm, another one at 1.00am (Friday) and his Dr being rung at 1.30am. It is a too long and complicated story to relay, but it revolved around a cracked lip, which may have been a cold sore but wasn't, drugs being vomited up and given at the wrong time, blood samples taken at the wrong time and a chest x-ray, which was OK too. Drew also wasn't in a particularly good mood, but came OK by the night, until the Dr wanted to examine his mouth at 1.00am, who could blame him. White cell count dipped slightly, neutriphils dropped to 0.4 too. Thanks Jacob and Joey and hello to the Grahams in America.

Wednesday, 2 September 2009 - Day +23

Well considering he didn't go to bed until 11.30pm last night, Drew woke up in a reasonably good mood. Had bacon for breakfast, co-operated to have a shower and was generally happy. His white blood count jumped up to 0.87 and he had 0.5 neutrophils - Woo Hoo. Probably shouldn't get too excited because it may drop again tomorrow, but still :0). Drew had the immunoglobin drug today (the drug without a name), that was interesting, as the infusion rate increased and the more of the drug he had the more you could see him being affected, he went from being really chatty and about to do school work, to quietly watching Jurassic Park, to feeling sick and going to sleep for an hour or so. Drew woke just after the drug had finished and was back to his normal chirpy self, with a rash. Round 2 on Friday. I don't have a cold which was another positive for the day.

Tuesday, 1 September 2009 - Day +22

Today started off well, with Dr Frank down in Sydney dropping in to see Drew. Then Lawrie rang to tell Drew that Adrian Caceres had left the Mariners. Drew's blood count dropped slightly, but neutrophils stayed at 0.2 - Doctors are happy with that, only seems to be Mum who's worrying. I had a sore throat and elected to have a nose and throat swab to see if I have a cold, as I don't want to reinfect Drew. Unlike Drew I would rather have my nose swabbed than my throat any day. The day went downhill when it was shower time for Drew, he didn't want one, didn't have one and didn't talk to Laura (nurse) or myself for the best part of 5 hours. He also had a blood transfusion, which required 2 bags of blood, which came from 2 different donors. The first bag was fine, but Drew had a reaction to the second bag and came out in a rash, his blood pressure went up and his heart rate went down (apparently normally the opposite happens if you have a reaction) and his temperature went up. In himself he was fine, but he had all the Drs come around for the 2nd time today. Consequently, the new drug that he was due to have was put off until tomorrow. At least by the end of the day he was back to his happy self - we'll see what tomorrow brings.