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April 2006

1st April 2006
There was nothing particularly special about the beginning of this foolish month except to say that Saturday mornings on the ward pass very slowly. Particularly sunny Saturday mornings when the beautifulness of the day happening outside and one’s inability to escape foosty air-conditioning remind one of how special sunny Saturday mornings in fact are. There is no doubt about it, going through this experience changes your life perspective. Particularly with respect to how one feels about Saturday mornings.
The day progressed with reading and story books and more computer games. Clothes supplies have been running low so when Aidan vomited all over himself later in the afternoon, Alex dashed up to Randwick for essential purchases while gorgeous Mandi supervised the playing of computer games.
A quiet evening. Thunderbirds are go and good sleeping.
2nd April 2006
There has been no sign of a temperature for days, so in a fit of optimism, Alex allowed Nonna and Poppa and Christy to take the big bags back to Chatswood. She packed a smaller bag, designed to see us through to later tonight, and sent off the advance party, to open up the Chatswood estate and prepare the dinner.
The Davids and the Davids (as Aidan says) visited this afternoon and enticed Aidan with those incredible donuts made by an American mega-rich multinational who need no additional mention on anyone’s website except to say that their name rhymes with Lispy dreams. Aidan eats two of them and Alex wants to eat two of them but holds herself back from the edge of the donut eating precipice.
Then at last we were free! In record time (it does help to be motivating all the staff for your quick exit from early on in the day) Aidan and Alex were in the car and heading home. Before long the family was at the dinner table eating bar-be-que. Bliss.

3rd – 6th April 2006
Aidan has been sleeping heaps. As we have progressed through each round of chemotherapy, Aidan’s ability to bounce back from it has lessened. He now weighs in at around 16 kilograms, which is between 2.5 to 3.5 kilos less than when we started (depending upon who’s scales you believe). He generally has a lot more pain in his legs and it takes longer for the pain to subside after each round of chemotherapy. And there are now days when his mischievous spark and quirky sense of humour are mostly missing.
So while this week is not without its happy moments, Aidan is generally a little more subdued than usual.

7th April 2006
Alex and Christy were on their way home on Friday night when Nonna rang to say that Aidan’s temperature was 38.1°C. Alex started to pack the bag when they arrived home. Aidan’s temperature goes to 38.4°C within the half hour. Poppa puts the bags in the back of Alex’s car. 38.2°C at 3⁄4 hour. Wait for 10 minutes and temperature goes to 38.4°C again. BINGO! Aidan and Alex farewell the family and start the trek back over the bridge in peak hour traffic. We make the Sydney Children’s Hospital Emergency by 7pm, it’s a full house but we are ushered through with no waiting. Ah the privileges of leukaemia! Aidan’s temperature is taken at 37.7°C. Within an hour of being admitted it climbs again to 39.8°C. Woo hoo he probably has an infection. We are experiencing our first temperature spike.
Dr Anthony (with the beautiful teeth and subsequently gorgeous smile) listens to Aidan’s history and checks in with Dr Sue. The poo sample returned earlier in the week was bug free, which is good from a health point of view and crap (excuse the pun) from an ensuite point of view. (No bug, no ensuite) Alex reminds herself that its not all about the facility and resigns herself to a shared ward space.
Within two and a half hours we are being ushered into C2 West. Alex brings the luggage up and moves the car. Aidan is asleep by the time she gets back. His little face wears a sleepy frown. He is sweating profusely and we are clearly in for a feverish night. Thank goodness we are here thinks Alex.
Aidan’s fever breaks early the next morning. Alex has been up repeatedly throughout the night as Aidan whimpers and cries with aches and pains that he can’t articulate. He was pretty miserable but managed to sleep in that way that you do when you are in the middle of sickly exhaustion.
Alex realises that he is through the worst of it when after changing a nappy at 5.30am and telling Aidan that she is going to take it to the Pan room, that Aidan flashes a cheeky grin at her and says “see you later alligator, in a while crocodile”. Sigh.
Dr Catherine checks Aidan over and finds nothing to be worried about. We’ll have to wait and see what turns up over the next few days. Hb 66, WBC 0.06 (wow he’s got some) and platelets are 44. Dr Catherine orders some red blood for Aidan but anticipates that Aidan’s WBC (and therefore neutrophils) will go down before they go up, so we are likely to be in here for some days, possibly right up until the next round of chemo. We’ll get out when the neutrophils are on their way up and when he has been temperature free for 48 hours.
Aidan spends most of the day playing computer games or fighting with Christy over computer games. Christy and his new shoes and jeans leave after lots of Crash Bandicoot on the Ward’s Playstation and eating crummy finger bun on Aidan’s bed. Poppa and gorgeous Mandi provide emergency coffees for Alex.
Tristan is visiting for dinner. The Davids and Davids are coming for dinner tomorrow night.
We’re back!

8th – 9th April 2006
We are on the ward with one other family. This other family has approximately two thousand relatives who visit in small herds. They all have loud mobile phones which appear to be competing with one another. It has been extremely entertaining people watching, but also busy and noisy. Its good for the ward to be this quiet, it makes it easy for us all to get some sleep at the end of all the days visitors (ours or not).
Aidan is tired but generally well however one of his insuflon clips (the butterfly clip inserted to facilitate subcutaneous injections of white cell stimulating GCSF after every round of chemotherapy) appears to be getting infected. We remove the clip with a bit of a struggle from Aidan who is determined to not let anyone touch it and insert another (with a similar struggle) insuflon on his other leg. Aidan is really cross with Alex and Larissa (nurse) for harassing him in such a revolting manner. Poor little love. He sleeps well and his eating has picked up today. No temperatures. No neutrophils.

10th April 2006
Dr Sue is a little worried about Aidan’s leg. More antibiotics are ordered. Otherwise he’s looking pretty good.
Joshua is back. Aidan’s buddy Joshua who has been receiving a humungous dose of radiation for a tumor is back on the ward. Alex returns from work to find a delighted Aidan and a slightly cross Joshua discussing a Playstation game. Joshua’s mum explains that Josh has just come to the end of this tether with Aidan and its time to fly solo. Poor Joshua he’s really been knocked about by the radiation therapy and Aidan is fairly bouncy despite his leg. If I was Joshua I would find his enthusiasm a little wearing too.
We all go off to sleep. Joshua is snoring, his poor little throat ravaged by the radiation wobbles as he breathes. Thank goodness for ear plugs Alex thinks.
No temperatures. No neutrophils.

11th April 2006
We’re all watching Aidan’s leg up close. However today we have a new worry. Looks like in the night Aidan might have scratched a pimple which is looking quite red and starting to swell. We are gathered around the bed, the Dr’s and Alex looking at his face from inches away. Alex suddenly remembers Deborah Harry as the mother with the rubber gloves in Hairspray (John Waters’s movie 1988– if you haven’t seen it rent it now) approaching her daughter (Ricki Lake) hands poised for a pimple squeeze. It’s a bit like that but without the faboolous hair and professional lighting. Aidan wrenches his gaze from the Playstation to look worridly at us all. This pimple might just ruin Easter.
So it turns out that the other family on the ward, who’s daughter has just started treatment for a relapse had a dreadful night thanks to Joshua snoring. Apparently the daughter has a pathological dislike of snoring and there was a “problem” as in “Houston we have a problem”. Sleep in here is like gold, its healing space, clearly a matter of life or death. I can see the battle lines have been drawn, each family lurking behind the battlements, facing off across the ward.
Alex and Aidan slept through all this of course. Alex thanks to the earplugs and Aidan thank to his genetic ability to sleep through thermo nuclear explosions. What talent. Anyway so Joshua and his mum are moved into their own room. (Damm you Aidan why don’t you snore? thinks Alex) A little later on that evening a new mum and daughter, and father and son joined the ward. Alex found herself smothering a chuckle in the middle of the night when she was awoken by the new mother and the new father both snoring. Ah, you have to laugh.
No neutrophils. No temperatures. Pimple watch: Mount Krakatau

13th April 2006
We’re looking good for a discharge. Alex is so confident that she removed the two big bags, leaving Nonna and Aidan with day supplies. Unfortunately Dr Sue, doesn’t agree, she is worried that the pimple that Aidan has been sporting will turn septic. Anyway Dr Sue dashes our plans for discharge and keeps us in for an extra 24 hours.
Alex picks up Christy after work, takes suitcases out of car, returns to ward. Harrumf.
This place can be completely surreal at times. As I was about to sashay out for bbq chicken and chips leaving Aidan engrossed in Super Mario on the Gameboy, a head with a gruff voice attached appeared at the curtain and said “G’day little mate”. It was a rather athletic windswept looking Bondi Lifesaver brandishing an easter egg the size of Aidan’s head. “G’day mum” he said with a smile inviting himself around the curtain. “G’day gaol bait” Alex thought. “Well hello there” she said. Aidan was by that stage way ahead of the game, he had grabbed the egg and started to unwrap and devour it immediately. The Bondi Lifesaver thought he was very amusing. Alex thought the Bondi Lifesaver was very amusing. She heard herself tell Aidan to say thankyou while the creative side of her brain raced through what her options for keeping the lifesaver might be. Wonder if you’d get locked up for keeping a lifesaver under the bed? He was very friendly and happy to have a chat with Aidan. Said “mate” an awful lot. Just as Alex was really starting to enjoy the prospect of her bed bound child being filled up with sugar, the Bondi Lifesaver was joined by another one. And then another one. Good God there’s an entire pack of them! Who would have thought that they would leave their marine environment in such numbers?
The Bondi Lifesavers lavished more eggs on the leukaemia patient. Alex is sure that she saw Aidan’s pupils dilating. She managed to shelve an egg for Christy and temporarily remove a chocolate rabbit before that got devoured as well. The Bondi Lifesavers chatted for a short while remarked on how cool Aidan’s Gameboy was and asked him what game he was playing. The leukaemia patient mumbled something incomprehensible with a mouth full of chocolate. The Bondi lifesavers looked confused and looked at Alex. Super Mario, she said. So, said Alex, I see your plan. Visit the hospital fill the kids full of sugar and then leave again. Very nice. They laughed, one of them protested at the mere suggestion “We wouldn’t do that to you Mum” he said giving Alex a big hug. Imagine. Being called “Mum” an being cuddled by gaol bait all at the same time. Ah, how cruel life is!
No neutrophils. No temperatures. No Bondi lifesavers. Pimple watch: Mount Vesuvious

14th April 2006
Not so Good Friday. We temperature spiked again. Bugger. And still no neutrophils. So we are here until Sunday. Bum. Bum. Bum.
No neutrophils. Temperature: 38.4 Pimple watch: Pimple watch: mountainous

15th April 2006
Okay so its another day on the ward. Bored bored bored. Even Aidan is getting sick of the Harry Potter game. If Alex gets called in to toss another gnome she thinks she’ll scream.
The good news of the day is that Aidan has a white cell count. Still no neutrophils so Alex and Aidan discuss making some overnight. Aidan agrees that it’s a good idea. Aidan gets some red blood cells and we are put on the list to get platelets in the morning (blood product supplies are always in low supply and high demand over holiday periods).
No neutrophils. No temperatures. Pimple watch: Adelaide hills.

16th April 2006
We have neutrophils. Woo freekin hoo. Dressing is done. Platelets haven’t arrived so we discuss with Dr Richard the need for them. His feeling is given that Aidan’s blood counts are on their way up, that his platelets will come good within the next 24 – 48 hours. If not we will get a blood nose and have to come back in. The decision is ours. Well the lure of an Easter Sunday proved too great. Lines are de-accessed (Aidan hates how cold it feels in his chest when this is done) And then we are on our way home out into the Easter Sunday sunshine.
Poppa cooks bbq dinner with the whole family at home. It is the very best of times.

17th April 2006
We all sleep in. We all potter around our house. Alex drinks cups of tea and real coffee. Aidan and Christy play everything together. The house looks like a bombs hit it – there are toys everywhere. Simply everything gets pulled out of everywhere. But no-one cares. We are home.

18th April – 25th April
Fatigue sets in. Alex finds herself coming to her limits (who would have thought?) a number of vexing situations in her new work position and two extremely tiring stays in hospital because of temperature spikes and all of a sudden a month is gone. Aidan has been up and down over the period, but is at his core still an extremely resilient little guy. Alex is incredibly proud of him, he’s just so very brave and he has such a great sense of humour, he laughs through heaps of it still.