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January 2006

3rd January 2005
At last we had a chance to make our appointment with Dr Phil (our GP), scheduled for the previous week this appointment had been delayed due to the notorious “stabbing incident”. Instead of Aidan, victim Christy had been a last minute substitute.
Aidan’s yellow tone and bruises were examined and we were ordered into the Pathology Nurse’s office for a blood test. The pathology courier was asked to wait for Aidan’s blood sample. Aidan happily counted the red spots on a yellow toy chicken as he had his bloods done for the first time. Dr Phil orders us home with instructions for a quiet restful day.
Dr Phil called Alex around 2.45pm that afternoon and told us to go directly to Emergency at the Sydney Children’s Hospital, all arrangements have been made, Alex is to take overnight bag and staff are waiting. Alex is told that his condition is extremely serious and he must get to hospital immediately, but Alex is to drive carefully and there is to be no jarring and definitely no car accidents.
Alex has small panic and calls mother immediately (thank God for mothers I say).
Aidan is rushed to hospital and is admitted by 4pm. Alex is handed a copy of a Good Parenting magazine upon entry. Hmmm..,
Bloods are re-taken and by around 5.30pm Dr Melissa has said “leukaemia” at least twice and “bone marrow transplant” once. Alex is completely crushed.
Surgical tests are ordered for the following day. Blood transfusions are ordered immediately.
Alex weeps. Goodbye old life. Our world spins off into a parallel universe somewhere.
We are taken to the C2 West Ward (Children’s cancer ward), ushered into a room that is to be our home for the next little while.
Alex makes calls to family and says the “L” word. Everyone is speechless and miserable. There are small hopes that perhaps this is something else, but later Dr Sue (the specialist) tells Alex that in her experience and given her blood count that the tests tomorrow will reveal what kind of leukaemia it is.
Alex is crushed again. More sobbing. This perspective is relayed to the family and we all start to prepare ourselves.
Aidan has two cannula put in both arms  (bloods in and bloods out) and sleeps pretty well throughout the red blood and platelet transfusions.
Alex doesn’t sleep very much at all. There is much thinking and quiet weeping about the best way to get through a disease that I don’t know anything about.

4th January 2006
Aidan wakes up a different colour. The yellow tone is gone. He is a glowing pink and pretty happy about it, despite the tubes in his arm. Dr Melissa introduces me to Dr Paddy at rounds the next morning. “Leukaemia” is still a harsh word to hear but Alex is in a fighting mood. The treatment is chemotherapy and a bone marrow transplant. Alex says she doesn’t know anything about those things. That’s okay they say, no one does when they first come here. Alex gets a crash-course in blood counts. Haemoglobin, White Cells (with those bastard leukaemia (blast) cells), platelets and neutrophils.
Aidan is scheduled for a bone marrow aspirate and a lumbar puncture. Done under a general anaesthetic both tests are needed to confirm leukaemia diagnosis.
We should be able to confirm diagnosis this evening.
Later as we are waiting to go into the operating theatre Aidan makes asks me if another patient is dead. Of course this question is asked at a volume level that is entirely inappropriate.
Alex gets to see Aidan taken into theatre. Feels like there is an anvil in my gut. Aidan gives me that I’ve-just-been-betrayed look of anguish before succumbing to the anaesthetic. Crushed again. Alex ushered to the Recovery Waiting Room and makes cup of tea with shaking hands. Weeps and growls and generally stomps about being furious.
The surgery goes well. Aidan fights his way out of the fog and after much prompting on Alex’s part and much complaining on his part, finally agrees to eat a lemonade iceblock, which he then inhales.
Later that evening we are told that the leukaemia that Aidan has is called Acute Myeloid Leukaemia or AML. Further tests are being run over night and we can discuss treatment in the morning.

5th January 2006
We sleep pretty well, all things considered.
In the morning Alex is presented with the Sydney Children’s Hospital Children’s Cancer Family Handbook. It’s the compendium on everything to do with what happens on the Cancer Ward. Dr Melissa outlines the chemotherapy that Aidan will need to undergo (this has been determined by the tests that were running over night) and provides Alex with a series of pages on incredibly toxic drugs. Alex imagines having to hold her child with large blacksmith tongs for the rest of our lives.
Alex is also told that Aidan is going to have to have a Central Venous Catheter inserted. This is essentially a semi-permanent tube that when inserted sits on Aidan’s chest and is used for administering the chemo drugs and taking blood for his blood counts which are occurring every six hours.
More general anaesthetic, more looks of betrayal, more cups of tea with shaking hands and Aidan has to be restrained after surgery as he fights like buggery to wake up. Despite the struggle I am delighted at Aidan’s fighting spirit.
The chemotherapy drugs arrive; escorted by nurses in fetching purple suits complete with gloves, facemasks and safety glasses. It’s bizarre, I think we may be in a funked out Chernobyl time warp.
The chemo infusion starts. It will continue for seven days.
We both have a relatively good sleep.

6th January 2006
The pressure bandages on Aidan’s chest are showing a leakage from the central catheter. They are examined by the doctors and with much anguish removed and the oozing is dressed again. Aidan is very stoic throughout. Alex needs to go outside to the corridor to wipe rough tears from eyes.
We have many visitors, most importantly Christy visits for the first time. Aidan spends much time explaining everything to him. Aidan owns everything in the room (of course!), Christy is a little confused at first, but enjoys watching tellie lying next to Aidan.

7th January 2006  (Saturday)
A quiet morning. Aidan is doing well with the chemo. He is still eating little, Alex is warned by Dr Melissa that he will want less and less as the nausea from the drugs kicks in, she is also happy with his central catheter. She also says that he is responding very well and that she thinks he is the best patient she has (Well of course, thinks Alex). An array of friends visit throughout the day and Alex drinks far too much coffee. The surgeon drops into check the catheter and says that he thinks the big bandages can be removed. Woo hoo.

8th January 2006
A fairly non-eventful morning. Doctors are happy with Aidan’s progress and confirm that the bandage can come off. We plan to do that after Aidan’s sleep. He sleeps for fours hours. Alex reads more of the dreaded book and is thankfully interrupted by guests. Aidan is mostly sleepy but manages to rouse for chats and play-doh. He is exhausted very quickly.
As we settle in for the evening around 8pm, I notice some oozing from the central catheter and a slight swelling of Aidan’s chest. Nurses are summoned, Aidan is examined. Doctors are summoned, Aidan is examined again. Dr Sue (the Specialist) is called at home at 11.30pm. The chemo is turned off. Blood is taken for clotting tests. Aidan is exhausted and complaining that we are all keeping him up. Dr Rob arrives to insert a cannula in Aidan’s wrist. A mobile X-ray machine arrives at our room and a chest X-ray is done. Aidan’s platelets are low and there is a concern that he isn’t clotting the way he should be. Earlier concerns about the catheter leaking are erased by the X-ray that shows that the catheter is fine. The chemo is turned back on. The blood clotting tests conclude that Aidan isn’t clotting as he should be. More blood taken and more tests will be done overnight. The mother of all bandages is applied with pressure to Aidan’s chest. The two of us are dismayed at this as we both (I have no doubt) are imagining how awful it will be to take it off. Aidan gets a plasma and a platelet transfusion.
There are further discussions about Aidan with Doctors after he collapses back into sleep. It is impossible to really feel okay about new medical situations when they are being explained to you at 1.30am and you are already sleep deprived.

9th January 2006
Dr Sue explains more about clotting at rounds. Apparently Aidan’s form of AML is called M5 (fabulous, Alex thinks to herself, we have Motorway Leukaemia), and one of the characteristics of M5 is that there are issues with clotting. Either too much or too little (bingo!). The plasma transfused last night contains all the good stuff to help the platelets to clot beautifully. So Aidan is going to get more plasma. He is also going to get a thing called Factor 7. One of the nurses tells Alex later that the 2.2mls of Factor 7 costs over $3,000.00. Alex resolves to never complain about the Medicare levy again.
With all these transfusions Aidan is a little puffy and uncomfortable. Pee-ing like a trooper though, which is great - all those nasty leukaemia cells need to be removed somehow! And the constant wee-ing means that Aidan’s kidneys are less likely to fail and create another complication (did I mention that was a risk? Well there you are – it is.).
A very quiet afternoon and evening. Aidan doesn’t eat anything, even says no to chocolate.

10th January 2006
Aidan is very tired and sick. The smell of food makes him dry retch. Poor little loverly that he is. Alex tries to temp him later in the afternoon with cold non-smelly foods. There is a resounding cry of alarm from Aidan for them all. Sheets are pulled up over his head. Alex gets the message. Aidan is only tempted out by computer games, which he turns out to be quite good at in that kid-with-the-rubics-cube kinda way.
A quiet afternoon, despite some comings and goings around managing Aidan’s temperature. Finally an early night! Aidan gets the shakes are the temperatures continue. Much cuddling.

11th January 2006
The temperatures that started last night are continuing this morning. More antibiotics are administered. Aidan’s blood counts are where they have to be (which is really low) but of course that means that he is sick and a bit wobbly.
Doctors and surgeons review Aidan’s catheter and agree that its time to remove the mother-of-all-bandages. Plans are made with nurses to attack the bandage after Aidan’s sleep. Happily crazy friends are on hand to encourage Aidan’s toys to do wild and unpredictable things to one another as Alex and Nurse gently prise the dressing from Aidan’s chest. It is agonising but finally the bandage is gone. Aidan is delighted with the new look. Not only that, but Aidan also loses the cannula from his left hand that Dr Rob had inserted on Sunday night. He makes his hands into twinkle twinkle little stars in delight.
Aidan perks up and eats biscuits and yoghurt and watermelon in the afternoon. Even has a few Jatz and dip for dinner. Tricky though as the nausea keeps returning periodically.
Last bag of Round 1 Chemo goes on in the evening and should finish around lunchtime tomorrow.

12th January 2006
More temperatures and shakes overnight. Aidan is looking forward to seeing Chrisy this morning. Of course when he arrives they spend all of 10 minutes being nice to one another before the “mine!” fight starts to break out.
At rounds, the Doctors exclaim that he is such a great little chap. How sensible of them to notice Alex thinks.
In the afternoon Aidan’s central catheter dressing is re-dressed. Aidan is a little champ. We go through several gazillion adhesive removal patches to prise the pressure tape from his chest one more time. A softer gauze dressing is applied. Yey!

13th January 2006
This morning we are “nil by mouth” as we wait to go in for our weekly lumbar puncture (seeing as Aidan has leukaemia cells in his spinal fluid we have to check the fluid regularly) this is not a problem as one of the nurses has found one of the “purple robots” for us. The purple robots have a Nintendo game cube in them and Aidan magically knows how to play them despite never having seeing one before in this short little life. I have started down the slippery financial slope of kids’ computer games Alex thinks.
Later that morning we are declared a surgery false start. Too many temperatures last night and early this morning. Aidan will be assessed again on Monday.
I offer Aidan some yoghurt which he devours, followed quickly by some chocolate milk and the last “chock frog”. How am I ever going to get him eating normally after this Alex wonders?
There is much sleeping and the rest of the day is pretty quiet.

14th January 2006
We had a couple of nose bleeds late last night and early this morning. Aidan has developed a talent for waking from sleep saying “nose mum” in an alarmed manner and then half sitting up and turning himself, so that the nose bleed splatters on his pillow. Missed the bed both times. What a talented child. There is some concern at the loss of our cosmic “circles” pillowcase (for the uninitiated it’s a tie-died pillow case of rainbow colours), but Aidan is reassured that Nonna will wash it and make it clean again. (Bless Nonna’s cotton socks).
More Nintendo this morning. Aidan is victorious, Alex is still trying to make sense of the controls. There are many visitors scheduled for this afternoon and a fairy garden to discover. Blood counts are low, where they are expected to be, but Aidan’s mischievous grins and raspberries are have returned.

15th January 2006
Apparently platelets are down, so another transfusion is organised. As it turns out we wait almost the entire day, as NSW platelet stocks are so low that a donor has to be called in to donate before Aidan can get some. And its only the Red Cross who can get it, Alex can’t donate at the hospital. I am told that this is unusual but not unheard of. Sounds completely mad, Alex later reads that only 3% of the Australian population donate blood, but that 80% will require blood products at some time in their lives. The Red Cross Mobile Blood bank will be at the Prince of Wales Hospital week beginning 30th January 2006.
Aidan has a mostly happy day torturing the good souls who gather to sit with him while Alex escapes and re-introduces herself to other son Christy. There is drawing, some eating, colouring in and singing and finally a sleep after stubbornly ignoring visitors bearing gifts. Alex has no idea where he gets this stubborn thing comes from.
Alex returns with bbq chicken and chips later in the day and Aidan magically remembers that he has the capacity eat like a small horse, which he subsequently does. Even manages two thirds of a small intense and completely gorgeous mud cake purchased by Aunty Nick.
Aidan and Alex quietly watch Tarzan after dinner and have a wonderful and mostly uninterrupted night.

16th January 2006
Nil by mouth again this morning as we wait to see if Aidan will get his lumbar puncture today (the one that was delayed from Friday). Makes us both a little terse, Aidan can’t eat and Alex won’t eat in front of the famine that is ravaging Aidan this morning. At least he is noticing that he isn’t able to eat, that’s an improvement from last week.
He is in a real mood today and has been behaviourally testing the limits of Alex’s patience. Guess that can only be done when you have a little energy which is grudgingly recognised by Alex to be a good thing. The toy that got thrown at Alex was not. It has disappeared, possibly forever. Harumpf.
Finally we get the call for theatre at around 4.15pm. Wheelchairs are brought forth and despite the Genghis Khan mood Aidan favours his minions with a smile as he is deposited into the wheelchair. Outings are such fun.
We wait with silly hats on to go into theatre, thankfully going under is an easier experience this time thanks to Aidan’s central catheter. His eyes stop short of closing, obviously he has decided to keep spooky little slitty eyes on the surgeons. But hey guys, no pressure!
Alex feels like a real pro as she pulls her own tea bag from backpack in parents recovery waiting room and grabs those precious moments to reflect on how we’re doing. Not bad is the rather immediate and unsophisticated conclusion. Seeing as my personal coping strategy is to stay as far away from emotions as possible, I move swiftly past reflection and onto eating chocolate frog. Ah, that’s better.
Alex is joined momentarily by Uncle Wrobbie before being summoned to Aidan’s bedside in paediatric recovery. Farewell Wrobbie, hello sleeping Aidan.
It took Aidan about 15 minutes to open his eyes and another 3 minutes before he sat up and looked about. Seemed at the time to be with us. He was offered and accepted a lemonade iceblock and ate all bar a few bites that Alex finished for him. Aidan then decided that we should all go away (Genghis Khan returns!) and that he should sleep, which he did for all of 10 minutes before vomiting. And the vomiting when on and on, poor little mite, for a good hour or so. Imagine cat with a hairball and you pretty much have it, except of course there was no hairball. More anti-nausea drugs are administered and Aidan sleeps. The two of us arrive back in our room on C2 West just before 7.00pm, to welcome messages from guests who have come and gone.

17th January 2006
Both slept really well last night. Aidan had the sweats something terrible, which is quite a feat when coupled with low temperatures. Go figure. So started the day with a big bed / clothes change and lots more washing for the Nona.
Aidan awoke and decided that he need to eat a big banana, and sends Alex on a quest. Bananas located in kitchen, small, but perhaps will suffice. Two are returned to the Master who nods appreciatively. One is attacked immediately but is vomited up again, a little too green perhaps? The suggestion of yoghurt makes all the pain go away and Aidan inhales two servings.
The servant is order to draw the curtains and the Master sleeps soundly for two and a half hours.
Aidan is woken by Christy who has brought in a picnic with Nona. Despite initial grumpiness Aidan is happy to see his bro, who has much to tell him about cutting the fruit salad and how to open the box of almonds. Aidan eats a quarter of a ham sandwich and a small handful of almonds and generally complains about Christy getting into all of his toys. But only in that way that you do when you would prefer to be able to chase him around the room and hit him over the head with a light sabre. Christy creates chaos in the room but there is relative calm when the boys play with a truck together, and a few giggles when kisses are shared at the end of the visit.
Aidan is back to sleeping the moment the door closes. He loves Christy visiting, but it exhausts him and he gets a little sad and cranky because he knows that we can’t go home yet. I explain to him afterwards that it’s not his fault, that sometime kids get sick and have to stay in hospital to get better. Not sure he gets it but will keep on trying.

18th January 2006
Aidan has had a very social day. The increasingly usual early morning high energy visit with Christy and then with Great Aunt Patricia being a “presence” in the room and Susan and Tristan, all covering hours here and there so that Alex can sneak into work and pick up her new laptop and answer a huge number of emails.
Aidan’s desire to eat has been slowly returning. There is still a great demand for salty biscuits rather than the Dietician favoured fatty foods. Still he proudly demolished most of a large ice-cream managing to get most of it in his mouth and on his face, so at least bed linen didn’t have to be changed again.
What is it about hospitals that make parents mindful of the quality of their hospital corners? Honestly.
Dr Tracey tells us that we are on track for a bone marrow aspirate tomorrow but will have to have some more platelets before we go down. This is confirmed by the smiling anaesthetist with 70’s sideburns who visits a little later in the day. Alex has noticed there is a lot of sideburn activity going on amongst the male population of this hospital. Who would have thought?
Alex gets taken out for dinner. Aidan gets to play with Tristan’s expensive digital camera, as it turns out he isn’t such a bad shot, so long as you exclude those shots up peoples noses.
We all get to bed way too late, but happy and in cheerful moods.

19th January 2006
It’s been a big morning. We were ushered down to theatre at 8.30am for a 9.00am bone marrow aspirate, part way through the procedure Dr Paddy gets me to sign a further consent to remove some bone, as the surgeons are having difficulty finding anything in the tiny amount of bone marrow that Aidan has. This is explained as being a good sign, given that the aim of the chemotherapy is to kill off all the cells not finding anything is most likely (at this stage) to be a sign of success.
Aidan comes out of the general anaesthetic swinging. Fights and yells and generally has a bit of a tantrum, albeit a foggy one. It takes all of Alex’s strength to hold him and afterwards arms ache like I have just done a boxercise class. Through out it all Aidan is crying and telling me that he wants to go home now and in a wheelchair. Given the level of fight in him Alex has no doubt that he could crawl all the way home at the moment if he chose. Alex tells him that she wants to go home too, which appears to have no calming impact on Aidan whatsoever, but Alex feels a little better. A nurse kindly explains in a terribly understated manner that kids in irritable moods is all part of the paediatric recovery day. Irritable? Caged lion more like.
We are back in the room by about 10.30am. Christy arrives a short time later and so does Daddy. Aidan starts to explain the Spiderman Playstation2 game that he currently obsessed with to them both.
A little while later Alex, Daddy and Christy go downstairs for a blood test so that we can be tested for a match to Aidan’s bone marrow. Only 25% of siblings are a match and the percentage is lower for parents (there are alternatives). We are doing this now because Steve is up in Sydney from Melbourne. The decision to go ahead with a bone marrow transplant is still a little way away. Best to be prepared thinks Alex.
Auntie Kekkie (Nicky) visits in the afternoon and there is much merriment and Playstation demonstrations.

20th January 2006
Big sleep in and Aidan scoffs a snail Danish for breakfast while on the dreaded Playstation. Alex has to check to see which of the machines at the bedside is actually attached to his drip – am beginning to think it must be the Playstation..,
The great news today is that the Doctors think we will probably get to go home for a few days from Sunday or Monday. We are currently scheduled for a lumbar puncture on Tuesday, but there is general agreement that we can reschedule this for Wednesday so that we can have a few days at home. Of course one of the conditions of discharge is that Alex is able to administer some injections ((shudder)). The things you do.
Aidan has started to plan his coming home party. We need (apparently) rainbow lights, balloons and a chocolate frog cake. Alex thinks we will be having many parties over the next six to seven months.
We are moved in the afternoon to a shared ward space. Suddenly we appear to have way too many supplies. Lord I even had to clear out the fridge before we moved. Our new space is much smaller and within feet of another family. No more night weeping.
Aidan directs the redecoration of the new space, sharks on the walls, drawings on the windows. There is less space for progress charts. Sadly the curtains are the same. Honestly, I’d love to know (a) which interior designer ever thought those curtains were desirable and (b) which colour-blind curtain designer was responsible for making them in the first place. Obviously both need large rocks thrown at them.
Aidan is delighted with the new television, which obviously he owns. There is a new remote control to master, Aidan tries it out on someone else’s television.
Alex folds out the camp bed to find it has no thin foam mattress (what’s worse than a thin foam mattress?), steals another from the empty bed across the room. The stolen goods contain mattress that is mashed and very thin. We both have an awful nights sleep. It’s just too light and noisy in here.

21st January 2006
Strangely we awake before the other folk sharing this room. Try to have breakfast without waking anyone else. Get to hear up close and personal the morning waking regimes of our roommates.
Our hopes of a weekend release are dashed this morning by Dr Melissa who informs Alex that Aidan’s neutrophil count (component of white cell count, responsible for fighting infection) are still zero and that they need to be around 5-6 before we can get out even on a day pass. Very disappointed. Missing Christy, missing home, missing the quiet, the trees and cockatoos. Missing my own comfortable bed.
Have usual crazy high energy visit from Christy, and picnic with the little boy who is our immediate neighbour.
Aidan’s hair starts to fall out. Really fall out. It’s a horrible thing, Alex sits by his side sliding my hands through his hair (which he has always loved) and great big clumps of it are coming out. One of my favourite smells in the world is the smell of his head of hair and Alex wonders if it’s going to smell the same without the hair. Stupid thought really, of course it is. Aidan and Alex discuss the hair situation. The sick in the bones is going to make all your hair fall out, Aidan is told. Aidan says he wants to look like a pirate with an eye “putch”.
More visits from wonderful friends takes Alex mind off of the hair. But arrangements for a pirate transformation are made for Sunday morning.
Thankfully in preparation for another night on the ward gorgeous friend delivers select earplugs and provides advice on use. Alex is surprised at the number of her friends who she discovers are earplug wearers. Not the kind of thing that normally comes up in conversation I guess.
Star Wars is the favoured movie for tonight’s viewing (again). Thank goodness for “Obi Wan Kobi” thinks Alex. He keeps the peace in so many ways.
Another restless night on the ward, little girl neighbour has crying dreams but Aidan doesn’t stir.

22nd January 2006
The day of the pirate hair cut. Aidan wakes mischievous and bouncy. The Doctors interrupt preparations and announce that his neutrophil count is still zero, which means no home pass. We will now try for a Tuesday exit. Alex is disappointed again but of course there is no point leaving when the risk of a temperature would have us flying through traffic to get back here again. Never mind. Don’t think about the feelings, move swiftly along to the next thing.
Which is a hair cut. Christy and his little no longer white puppy arrive with the usual gusto. A sheet is placed on the floor and the clippers are brought out. Aidan is quite keen to get into it and goes first. He is every excited to see his reflection in the mirror that Aunty Kekkie remembered to bring along. Christy hovers between the haircut and (you guessed it) the Playstation, and is also keen to get his shave. Aidan by this time is ordering everyone about and insisting upon being the barber for Christy. David steps in and saves Christy from a fate worse than... well a really bad haircut so Aidan contents himself with holding the mirror up in front of Christy so he can see large chunks of hair falling to the sheet. Big excitements.
After the hair cutting is completed bandanas are donned by everyone and there is much pirate “arrr-ing” on the ward.
Alex escapes the air-conditioned comfort of the hospital, to spend a hot afternoon cuddling and chatting with Christy.
Later that evening, Aidan happily devours a large quantity of bbq chicken and chips, which appears to be the flavour of the month. Aidan then agrees, after much discussion, to have bath, which has to been done standing up. As you do.

23rd January 2006
Slept well. We are nil by mouth this morning in preparation for a lumbar puncture. Which as it turns out, is a little difficult because now that Aidan’s appetite is returning he is asking for breakfast and doesn’t generally like the idea of going downstairs for a “Big sleep”. Thankfully this wrestling only lasts up until lunchtime when the nurse and trolley man arrive to take us down to theatre. Aidan is delighted to be wheeled down on the trolley and grins at Alex the entire way.
We play a few tickling hand games as we wait to go into theatre. Anne the anaesthetist (at last one without side burns!) wheels us in. Alex and Anne have met each other somewhere before both of us are stuffed if we can remember where. Aidan goes under with a bit of a cough (which isn’t such a nice thing to see) and Alex spends some time chatting to another mum in the parent’s recovery room. Aidan is out in no time at all and has a much gentler wake up (see previous comments re: caged lion) and another trolley man appears to wheel us both back upstairs to the ward.
You have to hand it to the trolley men. They would have to be the unsung hero’s of the hospital system. They spend all day pushing around that most frustrating of objects, a trolley. Alex has always been deeply suspicious of trolleys. Having never met a trolley who’s wheels didn’t have a mind of their own and insist upon taking off on their own accord in different directions at critical times, notably when attempting to cross large expanses of astro turf next to perilously piled tomato bins in supermarkets. And we haven’t yet met a trolley man who hasn’t had a smile and a cheery wave for Aidan.
Aidan sleeps soundly for the rest of the day. Nonna is coming in for this evening to give Alex a night at home. Big excitements.

24th January 2006
It’s just magical how 9 hours of uninterrupted sleep can make you feel. Alex arrives back at hospital after picking up a mattress pad from Ikea. (Should be standard issue for all parents, note previous comments re: thin mattresses) Nonna has been given some serious attitude by Ghengis Khan who is sitting in bed obediently eating peas. Alex is struck again by Nonna’s ability to get Ghengis to eat all manner of things that she has absolutely no chance on hell of ever getting Clever Nonna.
Aidan’s room mates are both going home today. Yipee thinks Alex, could it be that we have this large room all to ourselves tonight? I suspect that others will be moved in, but hope springs eternal.
We have a very quiet day, mostly because Alex has left the mobile in Nonna’s car on the way back from Ikea. There is a slight feeling of nervousness. Until Alex realises that she is going to have to use that old fashioned technology – the land line! So communications are made the mobile phone is located and folks are generally assured that the sms black out is due to Alex generally being quite vague rather than anything that requires attention.
A quiet evening. Alex is beaten again and again by Aidan on the computer game (honestly I have no idea where this competitive streak comes from) and a movie before sleeping. We did get the room all to ourselves. Alex sits and redesigns it before falling asleep.

25th January 2006
Clearly we would like to go home. However Aidan’s blood count, and in particular the white cell count and specifically his neutrophil count has only managed a 0.96 yesterday. There is no chance of us leaving until he manages a slightly more robust count. So given this small increase Alex starts the day by re-setting expectations around being able to leave. The new expectation is that its more likely to be Friday, or even the weekend. Bum. The colours on these walls can really get to you. Yellow, purple, blue and teal. And anyone who has spent anytime in hospital will know exactly the shades I am talking about. Shudder.
Christy’s visit lifts the energy levels considerably and having the room to ourselves means we can make a bit of a ruckus, so we do. In the afternoon our day was brightened with some visitors, bearing news of the outside world. Apparently it’s been quite hot outside. You cant tell from here, our overcast view hasn’t actually changed that much in the twenty two days that we’ve been in here (but hey! Who’s counting?) Alex shouldn’t complain at least she gets to escape for coffees.

26th January 2006
Australia Day. Of course the only way that you can tell that it’s our national holiday is that all the supporting services, cafes and the like, are closed. It’s positively un-Australian! Thankfully we are surrounded by incredibly resourceful friends and family who search the four corners of Randwick/ Kensington for caffeine and danish. And we are saved.
Aidan has a really big play with Christy this morning. He ran around, played in the toy car, and concentrated really hard on the magnet game. It’s good to see him back on his feet, previous turns about the ward have been marred by aching feet, a symptom of leukaemia. Aidan crashes into a long afternoon sleep after Christy and Nonna leave.
Later in the afternoon the great aunt visits. This means that Alex can go fetch some won ton noodle soup, as ordered by the young Genghis Khan. Aidan has a great time eating his noodles. He’s not exactly a wiz at chopsticks just yet, and there is a lot of grabbing in order to get all those noodles in. There are some things that Nonna’s are not meant to see and this would be one of them.
And because he’s on such a roll, Aidan also eats a cup of choc chip ice cream. Alex does galloping victory laps around the ward.

27th January 2006
Despite last nights feasting this morning there are still no neutrophils to be found. Aidan has however apparently created little iddy bitty ones and Dr Tracey is happy to allow us a get-out-of-jail-free card, otherwise known as a day pass. WHAT excitements! Of course I am subsequently advised that the weather today is hot and muggy and not the type of weather that one is generally wanting to be outdoors in but the promise of being away from these shades of teal, purple, yellow and blue is just too good. We make arrangements to visit Christy at Nonna and Poppa’s and to go feed (and terrorize) her fish.
Aidan is topped up with antifungals and antibiotics and we prepare to clamp the tubes that have been connecting him with a variety of “good medicines” for the last twenty four days.
And then we are free. A car ride over the Harbour Bridge to Nonna and Poppa’s house was unbelievable fun. Boats, trains, busses, flags and cranes next to the Goblin City. Too much to behold! And Christy was very talkative and excited too, telling Aidan things about his visit to the zoo that morning and the small toy that had been secured along the way.
Aidan had a loverly day, checking out Christy’s room, frightening the fish and teasing the dog. There was a DVD viewing when he started to get a bit wobbly on his skinny little legs, but then there was the ice cream consumption which proved that wobbly legs don’t necessarily mean wobbly tummies.
Of course within 5 minutes of returning to the hospital it felt as if we had never left.
More noodles and fighting puppets brought by gorgeous cousins settled us both in for the night.

28th January 2006
Still no neutrophils. Honestly Alex is scoring a fat zero for neutrophil production motivation talks. She curses silently behind a clenched smile. The walls are closing in and being able to breathe fresh air with all of its gorgeous smells has somehow made it worse. A reminder of what we are missing.
But we are allowed a day pass again. This time we’re going home. Bags are hurriedly packed, Aidan’s tubes are flushed and tied and we are poised ready for take off.
Aidan is excited to be going home but we get out of the car slowly as if we can’t really believe that we’re here. Auntie Kekkie is on the balcony camera in hand as we arrive. Aidan gets a but shy about the whole making an entry thing but is rushing about the house before long, pulling out all his toys and examining all his stuff. Of course this is happening in stereo as Christy is also delighted to be back amongst his own things.
Auntie Kekkie helps keep the peace as bubbles are blown, bikes are ridden, train lines are built and duels are fought. Alex potters about tidying insignificant bits. Some furniture is re-arranged in order to fit a new bed in the downstairs study/guest room.
Alex has a half hour shower in her own bathroom surrounded by her own products. Bliss.
Aidan has his first at home GCSF injection. Which he isn’t at all happy about, screaming up a few octaves for dramatic effect. Christy is very curious about it all, but gets growled at by Alex for trying to pick up the needle. In the end it all feels like a bit of a rugby tackle. Going to have to do a bit more planning around that one and set some house rules.
Poppa bbq’s and the family sits down for a feast. Aidan eats like a small horse, Christy doesn’t.
Aidan returns to hospital around 8pm and has a bath in order to settle him down. Hah! There is too much to talk about. Alex and Aidan chat about the day for about an hour.

29th January 2006
Aidan is delighted to be able to play Super Mario while we wait for the Doctors to visit and tell us that magically over night Aidan has produced record numbers of neutrophils.
When the Drs get around to us it is revealed that there are still no bloody neutrophils. We are re-assured that most children produce them closer to day 28 from the first day of chemo, we are day 24. BUT HEY WHO’S COUNTING?!! Alex feels like ripping the table apart … with her teeth. Big breath oooooooouuuuuuutttt.
Out with anger, in with love.
Thankfully we are rewarded again with a day pass. And from there it’s off to Tristan’s to see family and meet the newest addition to the family, little Max.
Aidan is a little overwhelmed with the family (you’d understand if you met them) and opts to watch movies on Marc’s gigantic screen (it all comes down to size right?). This choice doesn’t however slow him down at all when it comes to gulping down sausages and chocolate frog cakes. And then hunting for real frogs in the back garden ponds. Aidan has had many secret little smiles on his face today. The kind that come with a shy little expression and hiding behind skinny hands.
Later there is playing with own toys in own room, and all the sibling rivalry that comes with that. Darth Vader and Obi Wan Kobi duel in the passage again and more chocolate frogs are devoured.
Later there is fish terrorism and more food at Nonna and Poppa’s house on the way back to the hospital.
Aidan is now comforted by the thought of returning to the hospital. Alex is thinking of the thing loosely termed “camp bed” and isn’t comforted at all. She sleeps on the floor instead.

30th January 2006
Its amazing how a small cell can ruin your day. In anticipation of yet another neutrophil led let-down, Alex starts the day with a small meditation and re-sets expectations about waiting. His Holiness the Dalai Lama says that situations like this are an opportunity to practice the virtue of patience. How much can one learn from a celibate jet-setting monk from a cold mountainous nation Alex asks herself. Watch this space.
Again. No neutrophils. Little buggers are taking their time obviously. Aidan gets yet another day pass and Nonna takes him home to her house.
Alex goes (dum dum dum duuuuuum [dramatic music]) back at work. With real coffee, real non-cell dependent deadlines, territorial arguments and a million emails. It’s all so wonderfully normal.

31st January 2006
Despite firmly made promises to produce 10 neutrophils over night, Aidan is still neutrophil-less this morning. Ah dear, sighs Alex. The Drs again reassure us that there is no cause for worry and that some kids just take longer. Alex steals a glance at Aidan who is resolutely watching Sesame Street on the television the remote control paddle pressed up against his ear like a mobile phone, he is completely ignoring us.
Well what can you do? Accept another day pass. Dr Sue (who is now back from holidays, holidays can you imagine?!) takes Aidan off his last antibiotic and tells us that if he remains temperature free for the next twenty-four hours, that tomorrow she will discharge us to go home. The next bone marrow aspirate and lumbar puncture is booked for Tuesday next week (we will be an out patient for it – which means we go home after the procedure) and Chemo 2 – The Sequel (thanks Tristan) will start next Wednesday (8th February 2006).
Alex and Nonna pack Aidan up and a nurse comes to un-tube Aidan. He is bouncy and ready to go. Alex is dropped off at work and Aidan goes home with Nonna.
Later Aidan is most displeased to find out that Nonna is unable to turn the X-Box on. Christy gets all the breaks, thinks Aidan.
Later Alex arrives with Susan to pick Aidan up and to take him home to Chatswood. Aidan refuses to have lunch with Alex and Susan on the balcony over looking the park. Nonna has cunningly filled him up on avocado on rye. Clever Nonna (Obviously this is meant in the food department and not the X-Box department.)
Alex works from new home desk in afternoon, interrupted periodically by Aidan who wants a turn on the computer.
Towards the end of the day we return to Nonna and Poppa’s house for dinner. Thankfully Poppa is able to rescue the X-Box and suddenly Aidan and Christy are transformed into computer game playing robots, little fingers flying across the controls and a focussed frown on each of their faces. Occassionally the computer game soundtrack is shattered by an excited “We did it!” and pumping of arm in the air.
Aidan and Alex return to hospital. Aidan objects to his injection telling Alex very firmly that the “good medicine” goes through the tubes and in his mouth. He is quite cross at having to have the injections (his GCSF – stimulator of white blood cell production) and screams so loudly and angrily that Alex has to de-pressurise her ears afterwards.
Thankfully we have had no temperatures today.
Later that night after Aidan eventually got to sleep, Alex got to listen to the sad sounds of a mother reaching the end of her tether. We are sharing the ward with two other children who each have tumours and both of these families have been doing this for much longer than us. During the evening one of the children who was miserable and no doubt hurting and completely over it, lost the plot and just sobbed and sobbed and sobbed. The mother tried desperately to console and quieten her child who ignored her completely. This went on for about an hour. Nurses were called and an edge of desperation entered the mother’s voice as she explained to them that the child wouldn’t settle and she was trying everything she new to quieten her. The nurses eventually went away without being able to help. Eventually the child settled with the whispers of the mother, begging her child to be quiet and go to sleep so that mummy could sleep too. They were both exhausted and eventually slept. It was just heartbreaking. Alex has no doubt that hospitals would be much better places if there were other mothers here to hug the exhausted mothers of suffering children, late at night when the tired demons come.