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February 2006

1st February 2006
We awake to a day brimming with expectations. There have been no temperatures overnight and we are one temperature check away from a home discharge. Blood count will be back by 9.30am.
Alex was so convinced she started packing things up last night. But then Alex was convinced that her babies were going to be born at 38 weeks, they were born at 36 weeks. Alex glances at bags, perhaps she should unpack them again..,
The Doctors arrive and yet again there are no neutrophils, but Dr Sue is happy to let us go home because Aidan is such a brilliant performer in other areas. There are however many caveats on our discharge, no bumps no bruises (his platelets are low today) and definitely no bleeding. Alex mentions that bleeding isn’t on todays’ agenda. Dr Sue laughs and continues, no vomiting and definitely NO TEMPERATURES! At the slightest hint of a temperature we are to return immediately – straight to the Emergency department. Alex nods solemnly and makes note to wrap son number two in cotton wool, possibly for the rest of his life.
It seems to take forever to get everything organised and we look like we need a removal truck to get us going. (I think after all the trips that Nonna did to the car that she has probably organised one for next time.) Finally we are on our way and Nonna and Alex and Aidan leave C2West for the first time in twenty nine days.
Alex is dropped at work (there is always a down side) and proceeds immediately to purchase real coffee.
Nonna takes Aidan home to Chatswood where Auntie Kekkie is waiting. Hurrah!
Just to make things really interesting, 15 minutes after Nonna and Aidan walk through the door, Aidan picks his nose and starts a nose bleed. See commentary of all of two hours ago regarding bleeding.
Nonna calls Alex, Alex calls C2 West, Larrisa says we have to come in right away. Bum. Alex calls Nonna. Nonna and Kekkie put Aidan the car and its back to hospital.
Alex meets Nonna and Kekkie at emergency. There are platelets waiting and Emergency is pretty quiet so Aidan gets lots of attention pretty quickly. There is lots of car juggling and getting of emergency supplies (like corn chips and coke) and within three hours Alex and Aidan are on their way home to Chatswood again!
Eventually we all have a quiet night at Chatswood and Aidan and Alex are able to sleep in their own beds again.

2nd February 2006
Alex and Aidan spend the day at home. It is heavenly to wake up to the sound of cockatoos (read: skateboarders of the sky). Alex gets to have a cuddle in bed with Christy before the day starts, something the two of them have missed during hospital time.
Christy goes off to skool with Nonna and Aidan and Alex wave goodbye from the balcony. The day is fairly non-eventful for Aidan (with the exception of the GCSF injection at which Aidan screams furiously in a thoroughly pissed off tone, while Poppa holds him down.). Alex spends the entire day on the phone spreading the love around. We all fall into bed at the appropriate time after a family dinner. It’s just wonderful to be home.

3rd February 2006
Aidan starts the day by screaming as if someone was attempting to remove one of his limbs without permission. Alex and Christy are in the car and they are off to work and skool respectively. Nonna gets to deal with the victim on the balcony. At least there is nothing wrong with his lungs thinks Alex. Nonna tells Alex that he stops the carry on all of three minutes later. Nothing like a bit of ABC Kids to get you in the mood I always say.
Alex is welcomed home at lunchtime by a cuddly well adjusted young man who is quite chatty about his morning. [Note to self: leave screaming child with Nonna more often.] There is sleeping and post-sleeping X-Box. Later Aidan asks when is he going back to hospital. Alex asks him if he wants to go to hospital and he gives an emphatic yes. Curious but perhaps not expected. There is so much on tap there, nurses, computer games, Alex… We have a bit of a chat about hospital and how there are five more sleeps before we get to go back. Aidan tells Alex that the good medicine is in hospital and we have a chat about the good medicine that we have at home too. Alex asks Aidan if he wants to help Mama give him the good medicine injection. Aidan says he wants to push the syringe. We practice saying syringe. Alex will try anything to lessen the screaming.
After dinner, Alex calls Aidan as she gets the injection out of the fridge. Aidan examines the kit and we name all the bits, swab, needle, good medicine injection. Aidan is very solemn about it. Alex gets him to put the timer on the microwave so we can allow the injection to cool down (if its room temperature it doesn’t hurt so much going in), what can I tell you, boys, button and LED displays, it’s a partnership made in heaven.
So crunch time. With Poppa poised at the ready and Christy warily looking on, Alex brings the kit out to the lounge and asks Aidan to sit down. Poppa holds Aidan’s hand and there is no struggling. Alex gets it done in record time and Aidan hardly tears up. What a champ!
The adults exchange glances and happily breathe a sigh of relief.
And, we get to sleep in our beds again.

4th February 2006
One of the things that Alex loves the most about being home is being woken up in the morning by the boys and having big cuddles. Saturday morning starts in such a way. Of course there is a time limit to this kind of activity, its not long before the jumping starts and one or other of them tries to insert their big toe in your nose.
Auntie Kekkie and Wrobbie arrive at 10.30, just as Nonna and Poppa are leaving. We all sit down on the balcony for coffee and Aidan and Christy get to eat chocolate covered gingerbread men. How good is this?
Alex leaves for essential bits shopping trip while Kekkie and Wrobbie hang out with the lads.
Alex returns to chalk graffiti on the back wall of the house and the lads in bed. Woo hoo, time for another adult coffee and for some quiet paperwork. Sad but true.
Later when the grandies are back the boys eat possibly the worlds most enormous bowl of Won Ton noodle soup (Aidan’s stamina throughout this meal was astonishing) before being tucked into bed to thrash around like fleas on hot bricks until way too late.

5th February 2006
There hasn’t been a temperature for days but we still check every 4 hours or so. Aidan is getting quite good at reading the numbers. He still sleeps with the sweats a fair bit, but it doesn’t seem to affect his temperature, only Alex’s level of bed linen washing!
An incredibly quiet and loverly day is spent at home. Aidan plays with every single toy he owns, pulling them throughout the house. No surface is left untouched.
Alex sighs and takes her coffee and newspaper out onto the balcony.
There is much arrrr-ing as the pirate savage all the other toys multiple times. Obviously they own everything. Even Ziggy (Nonna and Poppa's small black terrier) looks nervously at them. Later there is another sweaty sleep and X-Box, this time in german (it was Spanish last night). If there is one thing more important than crash bandicoot its crash bandicoot in german. Such cosmopolitan game players these two, Alex tells herself.

6th February 2006
A great day. A blood test, a cake in a café waiting for Nonna’s car, and a walk to the park. What stamina!
Alex heard from Dr Jo this afternoon, there has been a change of plans. Instead of doing the bone marrow aspirate and lumbar puncture tomorrow, we are now booked for surgery and to start round two of the chemo on Wednesday. Apparently this is to allow Aidan some time for a haemoglobin (red blood cell) transfusion before surgery. The blood test we did this morning revealed lashings of neutrophils (polite applause … thank you, thank you, thank you) and heaps of splendid looking white cells and platelets, but so few haemoglobin cells that it would send screaming anaesthetists running from the room in fright. So. Transfusion it is.
Alex explains this all to Aidan who looks solemnly at her and replies Hos-bi-tool? Yes Aidan. In two sleeps we will go back to hosbitool. Computer mum? Piederman? He asks with a big smile. Alex smiles back, utterly defeated. You just have to say yes.
Tonight Aidan was completely superb in the injection stakes. Not only did he swallow his capsule by himself with a mere mouthful of water, but he also sat completely still while Alex gave him the GCSF injection. There was only the merest of objections. Aidan then got to tick the medicine and temperature chart to show that the good medicine had been administered. Aidan was most pleased with himself.

7th February 2006
Nonna has now trained Aidan to devour large numbers of avocado sandwiches. Alex arrives home from work to witness this spectacular consumption.
Alex spends a few hours packing bags for our departure the next morning and has a continual sinking feeling that she is forgetting several gazillion things. Curse it I should have written those lists while I had a chance.

8th February 2006
Alex calls C2 West as directed at 7am. Yes you had better come in we have a bed is the reply. Come in via the Admissions Desk on level one. There is a stern unhappy looking woman who is surprised that Alex wants to read the forms she is being asked to sign, strangely enough, before she signs them. We are directed to the waiting area with a dismissive wave.
Aidan delights himself by going through the toy box and pulling out a variety of toys with various injuries. A limping car with three wheels, a flying doll figurine with streamlined but stuck wings and toy boat with dented sides. We wait. And wait. Eventually a woman with a pleasant disposition tells us we to go up to Clinic for the prep for the lumbar puncture. And the transfusion? Oh, you were supposed to have a transfusion? Alex explains what the last plan was. The woman says she will check and disappears again.
More injured toys. A few straggly books and after another 20 minutes the woman is back. Okay here is the updated plan, we are to go to C2 North which due to renovations is actually located in C2 South. Go into the ward and past the nurse’s station and to the last bay of beds. Right, so go to C2 South Alex says by way of confirmation. No says the woman, go to C2 North. Right says Alex, which is in the South Ward? Yes says the woman.
Just as an aside my brother-in-law’s brother-in law (think about it, its perfectly clear) used to tell a story about an American tourist coming into his take away food outlet and asking for an egg and bacon roll without the bacon. So you’d like an egg roll? No, I’d like and egg and bacon roll without the bacon. Alex looks at the woman and decides that its not worth arguing.
Aidan is summoned and Alex feels quite proud when instead of ditching his limping flying figurine that he gives it instead to another little boy with a happy “your turn”.
Aidan is keen to push the buttons in the lift. They have cleverly placed colour shapes next to each floor. Circle for the street, square for the fairy garden and finally triangle for the ward. He is quite confident that he knows his way around.
We arrive at C2 North in C2 South and are greeted by a pink nurse who bustles about in an overly officious manner and orders us over to a bed. So you’ve finished at clinic she says. No says Alex we were told to come straight here for a transfusion and would be seen on the ward. Did a Doctor tell you that she asks? Yes indeed says Alex. Well she says in a patronising tone that unfortunately I would come to know all too well, we shouldn’t listen to Doctors, they don’t know everything do they? Alex bites her tongue and slowly and in a monotone informs the pink nurse that the Doctors are treating her son and in fact she listens to them quite a bit. Well she huffs they don’t know about appointments do they? (as if this proves her point) I guess not says Alex. Just my luck she thinks, Attila the nurse. Is the bed by the window okay? Tone has become pointed and thankfully Attila appears to have momentarily taken the point.
Attila’s act of revenge
Alex is unpacking some books and Aidan is attacking the bed, he knows the pedals to push in order to make the bed lower itself so he can get on it. Attila bustles back into the room and with an overly horrified voice tells Aidan off and grabs his hand. The hairs on the back of Alex neck all stand at attention. No darling she says little boys aren’t to touch these pedals are they mummy? We have lots of pedal and switches in here that only the nurses and mummy are allowed to touch. Aren’t they mummy? Mummy smiles in a withering manner and bites the inside of her mouth. Stuck between wanting to rip her head off and knowing that for the moment she is part of Aidan’s team of health professionals, Alex feels her face go a dark shade of red. Alex knows that if Attila looks at her at that moment she would see a woman who is about to explode. Well this is a little difficult. Before Alex can decide the best course of action Attila clucks out of the room.
Alex breathes deeply for several minutes and stops herself from following Attila out to the nurse’s desk and having a barney. Thankfully she is distracted by a phone call from work. Alex eyes Attila bustling around the room she is absolutely the dictator of her realm. Thankfully a completely gentle and equally as thorough nurse (not in pink) prepares us for theatre, and eventually we are taken downstairs.
Aidan coughs as he goes under the general which makes his entire body shake in a completely awful manner. Alex is out the door like a flash, concentrating on making her feet move in order to stop the tears. Stamping about always helps.
The Parent’s Recovery waiting room has a few families in it who gradually clear out leaving Alex to chat with a quietly spoken Samoan father whose daughter also has AML.
Aidan wakes beautifully from the general anaesthetic. Has a juice which he throws up slightly later, but is otherwise calm and without tears. We are sent back to Attila until 6pm. There is a beautiful glistening fish balloon waiting for us. It is magnificent and Aidan is delighted. We are visited by Liane (Psychologist) and Donna (Clinical Nurse Consultant). Donna has just come back from visiting Christy at House at Pooh Corner. The three of us have a chat about the various strategies that can be used to keep kids on track while they are going through experiences like this. Donna says that the House at Pooh Corner folks are all just wonderful terrific people (which they are) and that Christy is doing very well. Alex finds news of Christy the hardest to hear, not having Christy near is not only terribly difficult, it’s also a great source of guilt (yes she knows that’s not particularly rational!). Leanne suggests getting Aidan to punch the pillow to get the frustration out, it can be a game that we can play together.
Nonna has delivered luggage to our C2West bed and when we finally arrive at C2 West at 6.15pm. The nurses welcome us back with purple suits and bags of chemotherapy drugs. Alex potters about while Aidan watches the cartoon channel.
Later Genghis Khan returns and orders up an avocado sandwich which is demolished in record time. A further sandwich is demanded, delivered and devoured. Three cheers for avocado sandwiches thinks Alex. Two small bowls of peaches follow and finally the savage beast is placated. We fall to sleep late but have a mostly uninterrupted night.

9th February 2006
A fairly quiet day on the ward. Aidan doesn’t eat anything despite a variety of temptations. The chemo drugs are kicking in. He is delighted to be back in the land of the jolly purple robot with its annoying sounding computer games and is completely content to play Sonic Hedgehog all day. Alex doesn’t argue.
Dr Sue welcomes us back but is unfortunately unable to tell us the results of the bone marrow and/or lumbar puncture. They did rather a lot of them and the lab is working overtime. But Aidan is looking very well, they are very happy with his weight (up over a kilo!) and we should be able to go home on Saturday. Alex’s jaw hits the ground in amazement. But don’t get excited, she qualifies, 90% of kids on the AMP protocol are back with 48 hours with a temperature. Still a day at home..,
Occasionally Aidan’s general bed-ridden frustration levels boil over and he grabs Alex’s arm and squeezes tightly clenching his teeth and frowning. We play Leanne’s punching the pillow game for a while, which of course escalates to punching the gorgeous fish balloon. Much more fun really, it keeps trying to get away. Alex stops the game when it is clear that the fish is wilting in a major way. We try to calm down, the punching appears to have helped. He even has an afternoon sleep.
Great Aunt arrives amidst all this and Alex escapes to work to remind her colleagues who she is. Great Aunt has chats and generally supervises more Sonic Hedgehog. Tristan arrives in the early evening and Alex gets to leave again. This time for a fantastic dinner with gorgeous friend at the local Greek restaurant. No plate smashing but brilliant food and entertaining people watching. Delicious! Alex tries to have a late night but the eye lids have different idea. Quite night at the hospital, kinda excited at the prospect of leaving on Saturday.

10th February 2006
Aidan wakes in grumpy mood. But before long the music therapy woman sweeps into the room with a small cart full of gorgeous instruments and the room is set up for an event to rival the big day out. The little day in features Joshua on bells, Tim on large rainbow drums, James in pusher with egg-shaker, Jordan on ukulele and drums, Aidan on xylophone, Serifa (music therapist) on guitar, Alex on small rainbow drum, Sandra (Nonna) on ukulele and Margaret the volunteer on drum. Well you can imagine the din. It was terrific. Lots of bashing and singing and games where each of the kids would lead the others at rhythms, the frog song where bean frogs get tossed un ceremoniously off a blue lycra pond, and dancing with rainbow streamers (which Aidan thought were particularly tickly). This was generally an exercise in organised chaos. And Aidan just loved it. It completely changed his mood.
The Doctors order medication to be taken home. Aidan is looking great.


AND WE ARE IN STAGE ONE REMISSION!!!!!


(And if anyone remembers back that far this news we have been waiting for since around January 20!) Alex reminds herself that it can all go extremely pear shaped from here, but it is great news none-the-less and a sign that we are going well. The news has absolutely no impact on Aidan at all.
Aidan complains of a headache later in the day and wants to sleep. He drops off despite the noisy room almost immediately and sleeps for a few hours. Later when he wakes he demands food. We agree on noodles and Alex calls gorgeous friend for emergency delivery. Aidan re-designs the sheets with egg noodles (honestly some things should just not be eaten in bed) but manages to devour large amounts none the less.
We have a visit from one of the teachers from House at Pooh Corner and Alex feels the need to explain the limping fish in the corner. The teacher brings a six page card that all the kids have helped to make which has photos of all of Aidan’s friends on it. Aidan hides under his rug, pretty much the entire visit (ungrateful little sod that he is). After the teacher goes, Aidan reads the card and points at all the pictures looking pretty pleased with himself.
The day is finished with a movie, an ice cream and a cuddle in bed.

11th February 2006
Aidan has had temperatures over 38 degrees all night. While he has been below 38 since 5.30am this morning, there is just no way we are going home now. Big sigh of resignation from Alex. Aidan asks for the next computer game but doesn’t want breakfast. Aye curumba parental choices in here are crap.
Later that day wonderful cousin holds the fort while Alex does emergency clothes shopping for a night at the ABC Studios (Andrew Denton interviewing Billy Connolly nonetheless). D1 arrives with even more fun and Aidan is eventually cajoled into eating some dinner and what does Master wish to consume today? Won Ton noodle soup it is!
Alex makes escape to ABC when Nonna arrives. Aidan puts on the grump but gets over it pretty quickly. Nonna and Aidan watch a DVD and are off to sleep before too long.
Aidan has another temperature spike during the night. The out-of-hospital clock is rewound to 48 hours and counting down…,

12th February 2006
Alex makes emergency delivery of coffee to Nonna in the morning. Oh but its great to be the one making the delivery rather than receiving it. We eat and potter about tidying up. Aidan puts jeans and uggie boots on and asks for a walk (we are allowed ward only strolling) so Nonna and Aidan head off down the passage to the toy room. Alex finds them later sitting on the little chairs around the table playing with black play-doh. What fun. There is much therapeutic mashing to be done.
Piderman makes a come back to our quiet ward later in the day. Aidan and his mate (or is that in-mate?) Joshua sit on Aidan’s bed and attempt to figure out a new game. The two of them fall about in fits of giggles when the find out that Piderman can be made to jump into the Hudson River alongside the computerised New York. As he climbs out of the water he makes a variety of disparaging remarks about wet costumes and New York water clearing the sinuses. The boys just think its hilarious and this continues for about half an hour. The other boy sub-plots are surfing the New York taxis and belting pedestrians so that they respond in various indignant ways.
Sunday’s on the ward are pretty quiet, and there is only myself Aidan and Joshua and his mum on the ward. So except for the Piderman grunts and the odd splash as Aidan and Joshua throw him into the Hudson River (again) it’s a pretty peaceful place.
Alex manages to get some work done and we have a peaceful dinner and a movie.
We sleep well and there are no temperatures.

13th February 2006
Got a sleep in this morning as its only Aidan and Joshua (and parental hangers-on) in the ward this morning. Aidan didn’t eat much for breakfast and Alex is planning to go to work for a few hours to swap files, so it’s a bussely sort of morning, half a yoghurt here, a cup of tea there, fold the rugs, brush the teeth, tidy the space, blah, blah blah.
Alex is accosted by gorgeous young men who don’t really need to explain that they are medical students, too well groomed for mormons and so delightfully shiny and new they all looked like they were out of the same plastic wrapped packet. There now that I have blogged that, they’ll all be terribly offended. They asked highly intelligent and searching questions about Aidan’s diagnosis (oooh what a comeback!) and upon Nonna’s arrival move like a small pack of shiny new students to the next room.
Nonna artfully removed Aidan from the clutches of the evil computer game and by the time Alex returned from quick chats, wireless connections, decent coffee and file swapping, they were sitting on the bed drawing pictures.
Aidan was particularly pleased to see Alex back, muttering something about being abandoned for Billy Connelly on the weekend and went back to his drawings. Later that afternoon Aidan showed me through his new treasure box of carved wooden creatures from Uepi in the Solomon Islands. I think he particularly likes the turtle but is also fond of the sleeping shark. Although it took some persuasion that indeed it was a shark .. “no teeth mum” was his initial comment. Yes but its sleeping dear. No eating, at least we hope not.
Aidan and Alex spend a quiet afternoon brightened by talented fashion designer friend complete with frocks. Cinderella (Alex) has a ball (wedding) to go to in a months time and a girl must be prepared.
Easy evening. Joshua and his mum go home. We get to stay in huge room. Very quiet

14th February 2006
Brilliant nights sleep. Alex only wakes once, Aidan doesn’t wake at all and has no temperatures. By early morning we have new room mates moving in. Bailey and mum and Luke and mum and his two baskets of new toys. (Thank goodness we weren’t the only ones who required a removalist firm to get us out of our single room! thinks Alex.) Suddenly the ward is noisy with nurse and boy noises. Aidan’s ears prick up at all the action and he makes helpful comments about where various items should be placed. Thankfully he manages to make said suggestions at decibel levels that don’t offend and/or interrupt anyone. As a parent of child in cancer ward you come to understand the love and care that goes into the pottering around your child’s bed, blue-tacking pictures and photographs to the wall and artfully arranging toys and bits of craftwork, so that he feels a little more like the space in amongst these ghastly shades of blue, yellow, purple and teal are his. (If I’m starting to sound like the hospital interiors are affecting me, that’s because they are. No one should have to suffer these tones. Or these curtains)
Nonna arrives with coffee and Alex dashes to work for a few hours of typing email responses to work colleagues who probably feel by now that she has in fact dropped off the edge of the world.
Aidan and Nonna entertain one another.
Then we repeat yesterday from around the same time, but with a little more noise from the ward. Bailey is happy to interact and thankfully Alex is able to provide the answers to a few Spyro problems (it’s a computer game apparently played by millions) that to an incredibly talented internet-head called Tim. (Bless you me dear we love that gaming site).
We have a loverly visit from Lisa from House at Pooh Corner with another card for Aidan from his pre-skool chums. Aidan hides for the first little while but Lisa eventually lures him out. Aidan eats about ten of the most revoltingly deep fried chicken (allegedly) nugget things Alex has ever seen. She tries not to wince.
Despite the ward settling down for the night at an impossibly sensible kids time, we all have a crap night. Poor little Luke had a really rotten night.


15th February 2006
Unka Wrobbie arrived at 9am looking completely wired. He had sat in impossible traffic for two hours in order to sit with Aidan while Alex does management meetings at work. Bless him, he thinks to arrive with thermos of coffee and ginger bread man in hand. And as Alex later discovers, a small bag of lollies. Alex gives Wrobbie the 3 minute list of where things are and how to do it before dashing out door narrowly missing Registrar along the way.
Alex has a theory. She calls it the daily planning converse effect theory. At the risk of sounding like Alanis Morrisette it goes like this. Women know that on overcast days you don’t hang you washing on the line to dry. Why? Because it will rain. Rain is also brought on by leaving umbrellas at home or in the car. Women know that the day you wear you most uncomfortable work shoes is the day that you have to dash up and down stairs or between buildings which brings on blisters. Or that when you risk not doing a load of washing and wear that daggy old shirt to work is the day you get called into a meeting with someone who you want/need to impress. In short it’s like a kind of domestic chaos theory.
The hospital application of the daily planning converse effect theory is that the moment that a patient’s mother gets into the shower or leaves the building, is when the Doctors arrive with news that you really want to hear. (Let me clarify, you want to hear what they have to say all the time, but most of the ‘he looks great we’ll see you tomorrow” conversations aren’t the ones that you really, really, really, want to have when you are boxed in by purple, yellow blue and teal.)
So it was no surprise to Alex that when she spoke with Wrobbie between meetings that the Doctors had arrived and said that Aidan could be discharged. (Which translates to go home until you have a temperature, a runny nose or any other weird ass behaviour that is generally affecting his well-being.) Aidan’s tubes are tied off, he gets a new insuflon (a clip that sits on his leg into which Alex injects him every day, and boy ain’t that a laugh), medicines are ordered up from the pharmacy and bags are packed in record time.
Before we knew it Alex and Aidan were in the car and on their way home to Chatswood.
And of course these is huge excitement by all when our little family is reunited in our cosy little home. It’s pure gorgeousness.

16th - 19th February 2006
It’s a wonderful thing to sleep in your own bed.
Aidan is less worried about being out of hospital this time. He asks periodically about the nurses and if he can speak to them again. Alex thinks this is the beginning of what may turn out to be a life long obsession?? Hmmm…, But we have lots of chats and he is comforted when he is told that we will be going back for good medicine later, when he’s not feeling so well again.
Christy and Aidan play lots of pretend games with one another. The pirates ram each others ships, Darth Vader and Obi Wan Kobi have it out in the passage (again), the dog is teased, bubbles are blown. Christy, Alex notices, is pretty good at remembering that Aidan has “toobes” in his chest, this is possibly because they hang down below the hemlines of his tee shirts, and he doesn’t do much rough and tumble with him. Occasionally it’s Aidan who forgets and he gives Chrity a good wack, which he promptly gets right back. And of course the household is reminded that the best toy in the place is the one that your brother has, and that not being able to choose which DVD to watch is grounds for immediate thermo-nuclear meltdown.
Ice cream is consumed. Huge amounts of ice cream is consumed. Aidan’s appetite returns, in that strange post-chemo need to eat food that I have never been obsessed with before kind of way. Alex is just obsessed with Poppa’s bar-be-que.
Kekkie and Wrobbie come to visit on Sunday and for the first time since Christmas the whole family is able to have dinner together. Cheers.

20th February 2006
Aidan spends the morning with Nonna, while Alex drops Christy at skool and goes to work. Alex and Christy have chats about Aidan going to hospital in the car. And we sing the song the Goblin King sings in Labyrinth. When Alex returns in the afternoon the bruises she has noticed on Aidan’s legs are looking darker and he has small black bruises appearing in strange places, I mean I know this kid bangs himself all over the place, but he has a small bruise in his hair line (or at least what’s left of it!). Bloody platelets. (a great pun on so many levels)
Alex is so convinced that we will get a temperature sometime soon that she (gasp!) packs her bag. (Yes that’s correct, I packed my bag prior to the event)

21st February 2006
A rude awakening at 5.30am. Aidan wails in fright and starts throwing up in his bed. Thankfully we had a towel in the bed because he has been sleeping with the sweats (imagine a small swimming pool, the washing machine has been running hot since we got home) so I grab the towel and start mopping up. He continues to throw up. Of course with all the excitement his nose starts to bleed as well.
Within the next few hours he manages to bleed continually from the schnoze. And he complained of a sore tummy. We managed to get some anti-nausea drugs into him in between nose bleeds and soon the whimpering about the tummy settled with the tummy (presumably). But the nose didn’t give up, so we prepared to go to hospital.
So four of us, Christy and Nonna, Alex and Aidan bundled ourselves into the car and headed into the morning traffic and over the bridge to Sydney Children’s Hospital.
Nonna and Christy see Aidan and Alex safely into Emergency and then Christy is off to skool (and Nonna is off to collapse). Thankfully Alex gets an emergency delivery of coffee and is allowed, against all the rules, to consume said coffee next to the patients bed.
Later that morning the blood count comes back. Aidan’s platelets are one (1). Well thank goodness we didn’t cut it a bit fine Alex thinks. Anyway all is well. There are platelets on their way and Aidan is playing Super Mario on the “blue robot” [its purple of course!] Dr Sue is on her way down from C2 West.
By 2.30pm the last of the platelets is finishing up and we are being moves to C1 South (yes it’s the real south, its not north in south as per previous diary entries), still no Dr Sue but Matt (the nurse) says that’s she’s certain to turn up as we are leaving Emergency.
Sure enough we get a visit from Dr Larissa one of Dr Sue’s new Registrars. Within minutes we are cleared to leave (turns out the bed in C1 South was a mistake), Aidan is looking much better, his scores at Super Mario have certainly improved… and he is perkier that earlier. So Alex calls Nonna who is almost en route to pick up Christy and arranges a prior pick up.
Alex gets Christy from House at Pooh Corner and we all pile into the car and rather unexpectantly manage to make it home to Chatswood.
Later that evening another rather wonderful surprise. Ringtails are spotted in the trees in the back yard. Aidan and Christy were delighted. The possums frozen in the torch light were quite beautiful, black and tan with big white bellies and a white tip on the ends of their gorgeous curly tails. Alex is relieved. She thought we had lost them to the local cats when towards the end of last year one of the adults turned up dead in the backyard and had to be buried before the boys got out of bed (fabulous morning job that one) the following month we lost one of the babies who was electrocuted and had to be put down by the local vet. But the fellas out in the trees tonight weren’t oldies. They were a good size with beautiful coats, they looked very healthy and sleek. They were another reason to be at home … as if we needed one!

22nd February 2006
Aidan at home with Nonna. Alex at work. Christy at skool. Very ordinary day really. Absolutely brilliant.

23rd February 2006
Alex has woken up feeling pretty queezy, but perhaps it will pass. Alex and Christy sing all the way through the eastern distributor and over to House at Pooh. Walking across from the car park to the office Alex starts to think that perhaps it wont pass and that perhaps this is a mistake. A colleague attempts to have a discussion with Alex. She can’t focus on the conversation. There is a moment where she realises that if she doesn’t get back in the car right now and drive to Aubin Street that she wont be able to drive. She makes it to Aubin Street and collapses and stays collapsed for two days.
It is while resident of these particular pits that Alex realizes that a pretty big part of being able to hold all of this together is being able to see Aidan. It’s about being present and immediately able to comfort and nurture and manage his health.
When you are in isolation suburbs away from being able to help, its un-nerving and all of a sudden the gravity of the situation hits. So quite apart from the usual unsightly bodily functions that go beserk during illness and the sense of feeling sorry for oneself there is this desperation and misery that comes from having the time to think all about what might go wrong and not being able to do anything about it.
Complete agony.
It takes a sleeping tablet to stop the negative chatter in my brain and a soft pillow to cradle a sore and aching head.
Alex calls Chatswood later that evening post sleep. Aidan gets on the phone. Mama sick? He asks. Yes Aidan, Mama’s sick. Mama in hosbitool? No dear, Mama at Nonna and Poppa’s house until I get better then I’m coming home, in two sleeps time. Aidan come see Mama in hosbitool? No Aidan, Mama come home in two sleeps.
That seemed to do the trick. Christy by comparison needed to tell Alex about playing with the kids at skool and doing paintings for his mostly unappreciative brother. He was happy to hear that Mama was sleeping in his bed at Nonna and Poppas. Okay Mum he said brightly, good night!

24th February 2006
Alex’s second day in isolation.
Nonna takes Aidan to hospital for a blood test and dressing change. They are asked to wait on the blood counts just in case Aidan’s platelets are low. But they come back at 57. How good is that! Not quite what you’d call normal but pretty freekin good for a chappie in Aidan’s situation. Nonna and Aidan are sent home for the weekend.

25th and 26th February 2006
Alex wakes and feeling great. She drives home to Chatswood for hugs and breakfast. It is a relief to have the family back. It counts for so much these days.
After working through several emergency plans, Nonna and Poppa are sent home to their own beds for Saturday night.
Aidan, Christy and Alex take up position on the couch and eat popcorn and watch Star Wars until way too late. Sunday morning we sleep in and then eat hot cross buns and drink chocolate milk and watch even more Star Wars. This is followed by a little running about, train sets, light sabre duels in the passage and reading of books. There is some playing of X-box (the sound track invades Alex’s dreams) and watching of Willy Wonka and the chocolate factory (old version).
Later Sunday afternoon Nonna and Poppa return for bbq tea. We all eat well and watch the storm roll through the valley upsetting the cockatoos who take to the sky and surf the wind. When the rain comes it buckets down and thunders and thunders.

27th February 2006
Aidan spends the day with Nonna at home. They read heaps of books and make a great picture with lots of animals cut out of the museum and zoo friends magazines.

28th February 2006
Christy leaves for skool with Poppa in the sportscar. There is an element of “super proud” at going to skool in the sporty.
Aidan and Alex trapse off to the hospital for a blood test. Aidan isn’t happy to be having this one (has been quite unworried by them in the past). Alex wonders if he is starting to get really fed up with all this prodding and poking that is part of being treated for leukaemia. Thankfully the nurse has some spiderman stickers and we get the business over and done with relatively unscathed. The same may not be said of the nursing staff..,
A quiet afternoon follows, sleeps for Aidan and working from home for Alex.
A loverly family bar-be-que for a farewell dinner and its off to re-pack the bags.