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June ~ The Transplant pages

30th June 2006
Aidan is excited to learn that David will be coming to look after him today. He wakes with a smile and a bounce and demands toast. Alex has to run away to a work planning day and its wonderful to hand over Aidan and his energy to David, who arrives with plans for their morning.
Alex is sms’d blood counts through the morning. White cells 2.51 and neutrophils 1.0
After work Alex arrives back to Nonna giving Aidan hugs on the bed. (Nonna took over from David at 3pm.) Alex takes over from Nonna who has to go and pick up Christy from pre-school.
Aidan tells Alex about the laps of the ward (done in mask) and how he crept up on nurses and then jumped out yelling “Boo!”. He is clearly delighted with the effects of this afternoon’s stalking activity, the high amusement factor is evident from the big cheeky grin on his face.
Wendy drops by to say goodbye (she works weeks and not weekends) and to wish us well. But it just doesn’t feel like a goodbye time. We’ll be back on Monday, and while there is a chance that we won’t be coming back to the ward, it feels like a fairly low likelihood, or at least it does to Alex. Its loverly to say goodbye, although Alex hates goodbyes and is generally pretty crap at them. Aidan temporarily interrupts his Playstation game to wave and blow a kiss.
Later in the afternoon Lucy drops around with a huge bag of discharge medications in preparation for Aidan going home. Alex and Lucy sit and go through the regime, which ones at which times of the day, followed by which fluids and the days when not to give drugs and get tests instead, when to come for an in fusion, how long its going to take and how long its going on for. There are some drugs that Aidan will be finished with (difficulties notwithstanding) within the next two weeks and others that he will be taking until March 2007.
Of course this plan is only valid for as long as he keeps improving at the rate he has been. If he relapses or gets an infection, we change plan and medication.
Its great to have a chance to chat with Lucy and Aidan takes the opportunity to have some cuddles with her and play with her hair. (Hairdresser is clearly not out of the picture.)

29th June 2006
Nonna looks after Aidan while Alex is at a planning day. Dr Sue returns from holidays and spends some time saying how much of all of this she has missed, but that she isn’t changing any of the treatment, that he is doing brilliantly.

28th June 2006
Uncle Wrobbie arrives for his day in the hot seat. Thankfully he has managed to achieve that most clever of balances, the one of missing the traffic yet not getting here at 6.30am. Alex asks how the new car is, Wrobbie says he has no idea and that it will be months before he gets to drive it.

27th June 2006
Auntie Kekkie arrives, numbers, snap (“I won Mama, I won!) and lots of corn chips.
Alex comes back frm work a little earlier so that Kekkie can leave to pick up her new car. Later Alex calls her to have a squeak about the car. What’s it like to drive? Aunite Kekkie tells me that she spent a lot of the time unwinding and winding up the windows (just because you could, windows in commodore stuck open) and that it was very comfortable. Did you put the heater on asks Alex? Oh no says Auntie Kekkie I didn’t want it to get too complicated. Snigger snigger.

24th June 2006 – Transplant Day + 22
Woke up this morning with spots. About 6 of them around nose and eyebrows. After examination Dr Glenn isn’t yet worried about them, tests have been ordered so that we can identify it. They are only on his face, so while they look a little Chicken poxy it’s unusual for them to be just on the face. Having said that Dr Glenn wants to treat the worst case scenario while we wait, so its antibiotics for Aidan for 7 days. We would be in here for that period (most likely) in any case, so we wait.
This has not affected Aidan’s spirit, energy levels and/or desire to eat and drink. He has small amounts (but amounts nonetheless) of toast and jam for breakfast and happily comments on the yumminess of his juice.
Tristan arrives at playtime and there is much carrying on and delight.

23rd June 2006 – Transplant Day + 21
D1 turned up this morning with videos of previously unseen (by Aidan at any rate) Thunderbirds episodes, so Alex trotted off to work, leaving the lads viewing the pool sliding conveniently off to one side as Thunderbird One blasted off from Tracey Island. Alex wonders if the fuel in the exhaust ever created oil slick problems for the swimming pool, but figured that Brains would have had that covered in any case. Guess they were well beyond EPA jurisdiction.
Alex returned later after a particularly tiring morning to an energetic Aidan who was demanding food! Good God thinks Alex, had almost forgotten what that was like. So there was a quick trip up the shop for essentials and hot hot chips were delivered to Ghengis for lunch. He ate about a cup and a half of them while “reading” his Disney magazine which muther had remembered to pick up with the grocery shopping.
A very quiet afternoon and evening. Early to bed, mostly because Alex would otherwise have collapsed.

22nd June 2006 – Transplant Day + 20

Nonna says

Thursday began as a fairly ordinary day for Aidan. Nonna arrived to sit with him for the day, Mumma went off to work. He was feeling pretty welland bouncy and wanting to give everyone a big hug. Play Station while Nonnacleaned the room, then a spirited game of Snap and pretends with the toysand an empty box.
Then this tall, blond and very beautiful princess appeared at the door. She looked at Aidan and waved, so Aidan blew a kiss back. She laughed and caught the kiss and held her hands to her heart and waved again. Aidan blew another kiss. It delighted the princess and she laughed then waved to him.
The princess was Nicole Kidman.
She gives many toys to the hospital and visits when she is in town. The visit was the worst kept secret in the hospital and the energy and noise level increased with excitement when the word went out about half an hour before her visit. Even the doctors returned to the ward to do some more rounds. Aidan didn't know who she was, but the older children certainly did, and were thrilled to have pictures taken and get autographs and hugs.
One thing that we have learned about is the kindness of strangers extendedto the children in the oncology ward, from grannies who gift the children beautiful hand made quilts, anonymous donations of big soft toys, to visits from sports stars, TV stars and movie stars. All very touching and unexpected. Alex

21st June 2006 – Transplant Day + 19
Motivated by an attempt to beat the traffic, (a very Sydney pre-occupation methinks) Unka Wrobbie arrives at 6.30am and decides to let Alex sleep and wanders off to bother café staff who are apparently very bothered by the early arrival of customers.
Alex arrives back to Wrobbie saying “And I really would have preferred not to be having this conversation with you as your mother walks in the door” Aidan left up and gave Alex a hug. We have a quiet evening.

20th June 2006 – Transplant Day + 18
Aidan spends the day with Auntie Kekkie. When Alex arrives back at our Randwick apartment, there is a beautiful drawing of spiders, mice and cats waiting for her. Its really quite good and Aidan is as pleased as all giddy up that he has made a “present for Mama” and refers to it several times during the evening. Its great to have reason to tell him how clever he is that doesn’t relate to getting better.

19th June 2006 – Transplant Day + 17
Nonna and Aidan have spent the day cleaning. Well at least that’s Aidan’s version of events. He is happy to point out to Alex that the room is “new and clean” and that he was the one who did it all. This is not what the expression on Nonna’s face tells Alex. There was also a big bath in there and lots of hugs and playing with Spiderman. Aidan is particularly affectionate tonight, he often needs more cuddles when he’s not feeling 100%.
A quiet night. We watch David and the animals (David Attenborough) White cells 0.94, Neutrophils 0.4. Going up!

18th June 2006 – Transplant Day + 16
The day was so quiet that Alex almost fell asleep with Aidan. Tristan gets the all clear and visits in the afternoon. Ashlee and Mark come up the window to say hi to Aidan, Alex lifts Aidan over the window. He smiles and waves and then turns to Alex with a wince and starts retching. When he retches he is like a cat with a furball, his whole body gets stiff and he heaves with everything he’s got. Poor little mite. But spare a thought for Ashlee who hadn’t seen him in this state. You should have seen her face, poor lambsie it was real shock for her.
Of course Aidan was over it and playing Playstation within five minutes of Mark and Ash making a hasty retreat. Tristan and Alex chatted and coffeed and dinned (although the dinned bit was sometime later). Aidan loves it when Tristan visits because she has such a sense of fun and is great making up games (as you can see from the photos).
Big sleep. No temps. White cells 0.87, Neutrophils 0.3. Yes that’s right – he did it again. How Britney Spears can you get?

17th June 2006 – Transplant Day + 15
Another carer bites the dust. Alex speaks with Tristan who has been fighting sniffles and is still worried about possible infection. While Alex feels from time to time as if she would be prepared to knaw off her legs in order to get out of this room (imagine how Aidan feels), we’ve come too far to ruin it all with a possible infection. Stamping about ensues and the situation is saved by gorgeous Mandi who arrives with coffee.
Aidan and Alex have another quiet day with a big sleep for Aidan (4.5 hours) which means that Alex can do yet more work from his bedside (at least she’s getting heaps done).
Nonna and Poppa visit late morning which gives Alex a chance to wiz up to the shops and pick up supplies. There isn’t a great deal to pick up, Aidan isn’t eating yet, he’s still refusing pretty much everything. Even avocado (which is pretty huge for him).
Quiet night. No temps. White cells 0.87, Neutrophils 0.3 Woo hoo. (It might be quiet but it’s working!!)

16th June 2006 – Transplant Day + 14
D1 arrives early morning to free Alex up to go to a rather boring finance meeting. Whoo hoo some folks have all the fun. Aidan is delighted to see David, he means serious fun.
When Alex returns there they are the two of them, sitting in the bed, driving the bed-car up hills and down dales (the simulation possibilities of the “tilt” handle on the bed are realized in this game), the vomit bowl is a perfect steering wheel which also conveniently doubles as a helmet (who needs air bags?) and all of a sudden there is a musical going on. Alex is also reliably informed that the only way to read a newspaper is by picking out the pages one at a time, definitely not in order, and discarding them all over the floor when you are done. Some people read and others look at the pictures.
Aidan is of course exhausted by D1. Alex suspects by the way that D1 limps out of the room that perhaps there is a vice versa thing going on (okay that last bit might be a bit of an exaggeration).
D1 leaves at lunch time and Aidan falls off to sleep and remains sleeping until later in the afternoon, allowing Alex to get some work done from his bed side.
Unfortunately our dinner guests (Kekkie and Wrobbie) have been laid low with the sniffles so Aidan and Alex settle into a quiet evening. A movie and lights off by 8.30pm.

15th June 2006 – Transplant Day + 13
White cell count 0.47, neutrophils the same. Honestly if this ever becomes a book it will be called “waiting for neutrophils”. God-o schmodd-o I say.
No temperatures. Aidan is woken by the Drs and their impertinent morning prodding. How is a little fella to get a lie in around here? He has the harumfs for at least half and hour. Alex brings out a new Playstation game to lure him out of the grumps. Works instantly.
Again, the Dr’s are happy, again we are waiting for more neutrophils. That’s the territory we are in. Time to get out the neutrophil production motivational speech thinks Alex. Bit more rar-rar might help … perhaps. The most that Aidan has kept us waiting for neutrophils was Round One chemotherapy back in January. We were waiting for over 29 days, by that count we might be able to get out of here by 1st July, that’s two weeks away.
Nonna arrives with beautiful smelling coffee. Alex dribbles and disappears for work.
Aidan plays his new Playstation game.

14th June 2006 – Transplant Day + 12
White cell count 0.36, neutrophils the same. No temperatures, big sleep waking chirpy. Aidan is delighted that Nonna is coming today to see him while Alex is off to work. Nonna arrives with banana bread. It used to be a big favourite, but Aidan turns his nose up at it today. It is quite usual for the radiation therapy to play havoc with taste buds we are informed that it will be some time before they return to normal. Until then the grown-ups are to offer Aidan lots of different things to tempt him and be prepared for him to have small bites of everything (more often than not with small vomits to follow) as he searches for the taste that his body demands.
Alex returns post-work with Christy how is mystified and a little miserable as to why he isn’t allowed in the room with Aidan. He wants to climb on the bed and play with Playstation the way they did on the ward. Poor lambsie, he is quite miserable about it and has a weep which of course makes Alex a bit miserable and she has a weep too.
Aidan and Alex have a quiet evening and, despite confidently denying his need for sleep Aidan crashes at about 7.30pm.

13th June 2006 – Transplant Day + 11
The Drs are mighty please with Aidan’s progress. He has a white cell count of 0.26. Drs are pleased it would appear that engraftment is occurring. Aunite Kekkie arrives for day shift, as Alex has to return to work today. She brings with her the mysterious game of snap. The stage is set.
Alex returns to an exhausted and sleeping Aidan, with Nonna and Kekkie chatting by his bedside. Obviously the snap has done its work.
Alex is called out of a meeting to hear that Aidan has produced a skerrick of a neutrophil 0.1!! (Neutrophil count comes back a little later in the morning) Woo hoo. Aidan has a quiet evening and despite his long afternoon sleep, is back asleep by 8.30pm. Alex catches up on several thousand emails that have invaded her work emails.

12th June 2006 – Transplant Day + 10
Aidan and Alex have a very quiet day. Poppa visits and reads books with Aidan. Sometimes Poppa tells the story, sometimes Aidan does. Aidan is retaining a lot of fluid which is increasing his blood pressure so the Drs are going to put him on a dieutetic in order to bring that down. This is normal apparently. It hasn’t been affecting his energy levels at all – they are still extremely high. If only there was a treadmill in here. White cell count continues to rise from 0.13 yesterday to 0.15 today. His temperatures have subsided.

11th June 2006 – Transplant Day + 9
Tristan takes over from Nonna at 10am. Aidan is chirpy and excited at having visitors. Temperatures appear to be settling down a little. Have had some red blood and platelet transfusions. White cells up to 0.13 today.
Auntie Kekkie, Unka Wrobbie arrive for dinner. Star Wars Clone trooper wars start on Aidan’s bed. Within a short period the room is full of space ships and caves and pirate islands. There is a spot of hairdressing. Wrobbie’s hair doesn’t take too long to do. This is all a little ironic as Aidan’s hair has started to fall out again.
Kekkie Wrobbie and Alex have dinner while Aidan asks what the smells are. He doesn’t eat anything other than a few spoonfuls of steamed rice, but that’s more than he’s eated since 29th May. (13 days)

10th June 2006 – Transplant Day + 8
It’s a busy morning getting ready for Nonna who is coming in to look after the Aidan while Alex escapes for some time with Christy. Aidan is doing well although he is still having temperatures. His white cell count is up marginally from 0.05 to 0.06.

9th June 2006 – Transplant Day + 7
So it’s a week since transplant. The Drs are very impressed with Aidan’s progress, he has done well to gargle for as long as he has (no chance of getting him to do it anymore) and now that his mouth has deteriorated further there is no point in getting him to do it any longer, it wouldn’t have much impact now that his cell counts are so low. Alex mentions that it’s as much as he can do to get him to drink anything. Dr Tracey says that it’s completely understandable considering that his digestive tract is ulcerated and if it weren’t for the morphine he would be in considerable pain. But his liver and spleen are nice and soft and his chest is clear, so he’s doing well.
Aidan has an uncomfortable morning, possibly made worse by Alex who is tasked with trying to get him to urinate in a small jar for testing purposes. Honestly this type of harassment should be banned, kids should be allowed to crankily play with computer games without the impertinence of being interrupted for wees.
It appears that Aidan may have inherited some of his mother’s steely determination (what a time to find out thinks Alex) because he refuses to cooperate for many hours. Even in the face of threats levied at the Playstation he remained defiant. Thankfully Nonna arrived for a visit and relieved the situation before tensions boiled over.
There were cuddles and of course Alex had to give in.
Aidan then slept for nearly five hours while Alex distracted herself with some work and tried not to feel guilty for hounding the child to exhaustion.
After the sleep Aidan was a different fella. He invited Alex to play worms with him on the Playstation (worms is about as perfect a playstation game as you can get for a four year old male) and patiently explained how to make the characters do various things. He’s had another temperature this afternoon and this evening, getting up to 39.5°C, strangely he was quite lively throughout.
Alex and Aidan then watched Charlie and the Chocolate factory (original version) and Aidan settled down to sleep. Shortly after going back to sleep he was back down to 38.4°C.

8th June 2006 – Transplant Day + 6
Late last night Aidan had a nose bleed. The first one for months. It’s happened of course because the radiation and chemotherapy is working and his cell counts are falling ... including his platelet counts. So some blood was taken last night for a cell count and his platelets were 34. Dr Tracey decided to wait until morning as the blood bank didn’t have any O+ platelets. Aidan got another nosebleed this morning, followed by a huge blood curdling (Alex now knows exactly what that means, sound effects and all) chunder, which scared the hell out of him. There must have been about three cups of blood that got spewed forth, it made the most amazing mess, it just got everywhere. And the poor little man cried and cried. Once Alex had the worst of it mopped up, we had a cuddle and Alex explained that when you have ouches in your stomach and throat and then you have a big cough that some of the blood comes up too. But that it’s okay and its better for it to come out if you have a cough. Aidan (gripping Alex tightly like a small monkey) said, But mum blood comes out! That’s okay Aidan says Alex, you can make some more blood (fingers crossed). Make more blood to go up, up, up and down, down to toes? asks Aidan. Yes dear, says Alex. Oh, okay mum, says Aidan settling down.
So as it turns out his blood count this morning is 22, but new platelets arrived pretty quickly. He’s had them all now and his nose has stopped and he’s much happier.
Christy and Nonna visited this morning on the way through to skool. Christy took all of 30 seconds to spot that Aidan was playing with a new Leap Pad book and he wanted one as well. We discussed the matter and a fairly cranky Christy eventually agreed to share after Aidan was finished. He toddled off to skool with Nonna who returned bearing much needed coffee a short time after.
The room was cleaned (hard surfaces and floor have to be done daily) and the boy was bathed in his tub. Despite protest he actually enjoyed it very much, and was much perkier by the time he was deposited back onto his bed in clean jammies.
Clearly it is time for Playstation.
12.15pm Aidan’s temperature is 37.8°C – we’re about to go febrile (medical fever), which means antibiotics galore, blood cultures and the next level of worry! On the other hand its part of the journey, i'ts where we need to go to get to the Big Better.
12.55pm - 37.9°C nearly there!

1.30pm - 38°C. If he gets another reading of 38°C within the hour, or if he reaches 38.5°C he's officially febrile (feverish).

2.30pm – You give me fever - 38.1°C. And with that Aidan is into the next stage of his journey home.
Blood was taken to be “cultured” (as in incubated and try to grow some bugs from it - rather than any Elisa Doolittle type procedure with marbles in mouths) and antibiotics were started. There was some fidgeting about with morphine levels this afternoon as well. He is getting a tiny amount, but it’s enough to make him comfortable, which is frankly a bit of a relief for Alex. The degree of difficulty going through this type of a situation is only increased when your child is in pain, its just too overwhelming to experience. And the morphine has to be increased gradually so it takes some time to get it right.
Aidan puts himself to sleep at 6pm (which is un-heard of) and sleeps fairly comfortably through out the night.

7th June 2006 – Transplant Day + 5
Aidan woke up vomiting this morning. His stomach aches and he was quite miserable. Its time for morphine. It’s a very low level dose, but it will help him to be comfortable and he needs that now. He stayed miserable until he got into Playstation a little and brightened up considerably when Nonna came to visit. There were lots of cuddles. And more music a little later on. This got him really perky. He particularly liked being the conductor pointing at Nonna and Mama and getting them to play on his direction. His smiles and laughs were a little shy, but the shy ones you do when you are very pleased with yourself.
Later this afternoon there was a wrestle over doing the mouth washes (there are now three – sodium bicarbonate, anti-fungal and the light anaesthetic to douse the ulcers in his mouth) and Aidan got really miserable over the thought of having to gargle. This was a bit of an indicator of his pain levels – usually he’s just brilliant at the gargling and counts it down on his fingers for you with a mouthful threatening to burst in a very dam busters kind of way.
In the end we abandoned the attempt and made a deal to try again later on. Sometimes this works. Fingers crossed. He is supposed to gargle four times a day. Can you imagine?
The big artillery was brought in this afternoon. It’s a double-barrelled robot (drip stand) and it holds Aidan’s five drug pumps. Five drug pumps. Egads Alex thinks.

6th June 2006 – Transplant Day + 4
Aidan woke up perky but with a few vomits. He wasn’t looking for anything to eat but was happy to have a drink of water.
He settled into a morning of Playstation and was happy to be interrupted by Christy and Nonna who had come for a quick visit before Christy was dropped off to his first day back at skool. The boys played at the window, Christy looked longingly at the Playstation and managed to restrain himself from charging the room. Nonna had brought coffee and banana bread there were some hugs and Christy blew the hugest most wettest raspberry all over the window (Brilliant thinks Alex) and then they were off to skool.
Auntie Kekkie arrived later in the morning with more coffee. Alex is having a great start to the day! There were chats and then Alex got to escape to a movie (bliss-ee-kins!) with a gorgeous friend.
Auntie Kekkie played games and read books and encouraged Aidan to eat avacardo and biscuits. Aidan got tired and almost slept before Alex got back later that afternoon. There was more Playstation and Alex was able to escape again thanks to wonderful cousin Tristan (again! Can it be borne? No it cannot!) But as it turned out it was and Alex had a loverly dinner at Skara bar at the Spot. It was delicious (see page on gratuitous advice to parents for the number of the restaurant) and Alex returned to a peacefully sleeping Aidan and a reading cousin Tristan.

5th June 2006 – Day + 3
A quiet day all round. Aidan is still looking pretty good, although he is starting to suffer from mucositis which is an ulceration of the entire digestive tract, from mouth to where the sun don’t shine. Its particularly painful to do all those things we usually do behind closed doors. So far it’s only taken Panadol to take the edge off and make him comfortable. The Drs are still impressed with how well he is doing. Again I am warned that an infection will turn him south pretty quickly. Today Aidan has 0.23 white cells and is neutropenic. No so as you would notice to look at him. Still very cheeky and grinning heaps.
Nonna and Christy visit for morning tea. Alex gets to spend all of 20 minutes with Christy, which was as long as it took for him to get bored of her questions and start looking for more exciting things to do. Nonna and Aidan played Stuart Little on the Play station and for awhile while Christy destroyed the play room. Aidan and Christy then pulled faces at each other through the window and generally acted like idiots and laughed and carried on.
After Christy and Nonna left Alex attempted (somewhat unreasonably as it turned out) to get Aidan to sleep. There has been even more Play station this afternoon. Laura visited with loverly gifts including some little balloons on sticks. Aidan immediately spent some time using them as hammers. I don’t think he was being ungrateful, there is just something about boys and sticks!

The David’s visited this afternoon and Aidan spent a great deal of time laughing and hooning about (as much as one can hoon when connected to tubes and confined to one room). Aidan spent some time explaining the finer points of Super Monkey Balls Deluxe (yes its as bad as it sounds) to D1 which was quite amusing. After they left Aidan watched the next few scenes of The Chronicles of Narnia – its scary mum! And then he crashed and slept like a babe.

4th June 2006 – Day + 2
Tristan arrives with really bad coffee (no really it was and she agrees) we make tea almost immediately. Aidan has had a great night a few vomits and still no temperatures. The Drs remain extremely happy with him but remind Alex that it is only a matter of time before he gets a fever and gets really ill. Such a happy prospect, but its better to expect the worst.
His cell counts continue to plummet, but he remains happy and full of energy. Alex really does wish that there was a treadmill in the room today, Aidan would have loved it.
Nonna arrives and Alex is released from responsibilities to do a spot of shopping. Yeehar! A chance to get out of the hospital for the first time in a week, a chance to pretend to be “normal” in that Kath and Kim, Fountain Gate kinda way. Food and supplies are purchased and Alex returns to bondage.
Nonna escapes to a quiet afternoon reading (Christy is rumbling with the Kapsanis mob this afternoon).
Tristan and Alex do lots of work on the website (hope you all noticed). More quiet and Aidan decides to eat a quarter of an avocardo sandwich. Go figure.
We sleep well again.

3rd June 2006 – Day + 1
Aidan wakes with a grin and a surprising amount of energy. He appears to be slightly browner (a side effect of radiation no doubt accentuated by his heritage), there is a small vomit and he’s wanting Playstation. The Drs are in early and are delighted that he is doing so well. Strangely enough he still have a cell count, thus the energy. But its on its way down.
Nonna and D1 arrived providing extra hands between the floors.
There is some to-ing and fro-ing between the floors and Kekkie and Alex swap places so that Alex can talk to Drs and spend some time with Christy before he is discharged. He is delighted that he is being allowed to play with his Gameboy for so long, and reminds Alex a few times that the sun is up and he’s playing Gameboy (the usual rule is that the sun goes down and the moon comes up and that’s when he can get his Gameboy out). What fun!
It was just before lunchtime when the Drs got around to seeing Christy. Dr Melissa asked him if he wanted to go home to which he said “Naw, Christy playing robot!” She laughed and said that he was good to go and that if there was any residual pain that Panadol was all that was needed. Despite earlier protestations Christy was happy to be on the move and ran about saying goodbye to everyone and shaking nurses hands. We all trooped upstairs to say goodbye to Aidan before Christy and Kekkie and Nonna left to go home.
D1, Alex and Aidan settle down for a quiet afternoon of Gameboy, coffee and chats.
The rest of the day passes quietly. We sleep well.

Friday 2nd June 2006 – Day Zero - Transplant Day

Click here for the pictures

Alex says:
Relatively good sleep. Aidan slept right through and despite a few small vomits this morning was in very good spirits. Alex roused Auntie Kekkie next door, who in turn tackled Christy (there is something particularly karmic about this moment, Auntie was herself particularly dangerous to wake up as a child). Christy is on the surgery list for 8am. Aidan is on the radiation list for 8.10am. It was organised chaos (appears to happen a lot in this place, Alex thinks) but Aidan and Christy waved goodbye to one another, Christy in the trolley bed and Aidan from the wheelchair with his mask on. Then Aidan and his wheelchair followed Christy down the hallway to the lifts, yelling and waving all the way. Okay hands up which one of you is sick? Egads.
Off Aidan went to radiation. Unfortunately this session was by far the worst as it took Dr Phill a little longer to get Aidan under and of course he protested severely. But once the session was done, it was down to paediatric recovery where Tristan was waiting outside the door for us. We went in and saw D1 and Kekkie across the room with Christy. So once Aidan was settled, Alex walked swiftly between the two to check how they were doing. Christy’s first words were “Star Wars Gameboy?”. He got what he wanted of course!
Christy did really well. He had a bit of Panadol for pain management but was wriggly almost immediately (who would have thought?) and easily distracted from any discomfort by shooting Sandpeople and Stormtroopers on his Gameboy.
Aidan was back on the ward in no time as well. He settled back in well and had a small sleep. Coffee was summoned and the grown-ups all put their feet up for awhile. Alex visited Christy downstairs and helped with Star Wars at critical points. Christy was doing very well and enjoyed having his own “hosbitool bed” and nurses.
At the second round of radiation Aidan was presented with a present from the Radiation Oncology staff which included a baseball cap with an alien which said “I’ve been zapped” he was very pleased. Less pleased to go for the last sleep, but Alex kept telling Aidan that it was the last time and then the “big better”.
Finally we were wheeled up to Aidan’s room for the last time (fingers crossed). When we arrived the bag of bone marrow was waiting. We settled in and it was moments before Lucy and Dr Melissa arrived to hang the bone marrow bag.
Aidan must have caught the vibe because he brightened up considerably. Then Kekkie arrived with Christy in a wheelchair all rugged up an clutching his Gameboy, determinedly playing through the ruckass. All of a sudden Alex looked up and the whole family was there, Poppa, Nonna and the Davids, massing together in the corridor, given the prohibition on folkses in the isolation room.
Lucy was carefully moving about the room, preparing the transfusion. Alex discussed the bone marrow bag with Aidan who looked frankly disappointed at his bag. He looked across at Christopher and with a little prompting said “Thank you bone marrow Chris-of-fer.” Chris-of-fer didn’t even look up from his Gameboy and had to be prodded into being present at this moment.
So the bag was hung and Klaus was left with strict instructions to make sure that when the transfusion was complete that Alex be given the tag on the bag for a keepsake.
Alex tearfully crossed out the last radiation symbol, the paparazzi in the room went wild, Aidan laughed and smiled.

POST SCRIPT It's 3am and Aidan wakes for a little vomit. After Alex cleaned up Aidan pointed at his calendar and said “Mum three injections gone, other thing gone.” “Radiation” Alex said, “Radiation gone mum.” “Yes Aidan” “Good job Mum” he said with a cheeky grin as he rolled over and went back to sleep.

Tristan says:

Aidan and Christy were both in paediatric recovery coming out of a general anaesthetic when I arrived at Sydney Children’s Hospital at about 10am. Aidan for round five of six radiation treatments and Christy for the harvesting of his bone marrow. Christy was full of dopey smiles and his first words were “Star Wars Gameboy?” According to Nicky they were also his last words before being put under. I suspect that as far as Christy is concerned he is getting the good end of the bargain. “Bone marrow? No problem. For a Return of the Jedi Gameboy you can have a kidney as well!”
Much apple juice, many hugs and the rejection of a lemonade icy pole later Christy was transferred to his “new” room. Unfortunately, not in C2 West (drats) as he had been the night before, but the Ambulatory Ward in C1 North. More crowded wards, much more bustle and hustle. In fact sort of like a noisy day care centre with beds. At any rate Christy was pretty happy if somewhat sleepy and thirsty with Kekkie and Tristan in attendance. Accompanied by Mumma and David, Aidan was taken back to his isolation room on C2 West to sleep off the effects of his second to last treatment before the big big better.
Meanwhile back in C1 North, Christy was guzzling Apple juice and as fate would have it had his first of what was to be two giant, bed changing vomits. It just sort of bubbled up out of nowhere and whilst it did alarm him a bit he was actually more interested about where we had put the game boy and was it wet. Luckily it wasn’t. Luke Skywalker was ok. He was over it in minutes and happily sitting on Kekkies lap wrapped in his green ruggie madly playing Star Wars whilst the nurses bustled around completely changing his bed and I sponged down Puppy who was in the line of fire. Christy agreed that he was pretty damn tired, shut his eyes and despite the noise and kerfuffle of the ward had a huge sleep.
Upstairs in C2 West Aidan was still sleeping soundly, barely stirring. When Christy woke up, Alex took the opportunity to “swap” carers and she went down to spend a couple of hours with Chris. The darling David took Aidan’s urgently needed washing home whilst I sat in the room watching over Aidan, madly updating the website.
Uncle Wrobbie turned up and a few minutes later Nicky came back up to Aidan’s room. Kekkie, Wrobbie and I swapped spots and I took the opportunity to do a lunch run. Even though none of us was consciously hungry, it would be a while before we had another chance to eat so we took advantage of the two quiet (and sleepy) boys situation! A couple of delicious toasted vegetarian Turkish breads later, Alex left a now awake and Gameboy playing Christy with Kekkie and Wrobbie and she returned to Aidan to prepare him for Round Six – the Final course of radiation. Aidan is awake and actually still very chirpy and full of smiles. He particularly likes it when he spots you through the glass before you come into the room and finds it highly amusing.
By this point Aidan knows what is coming but he also knows it is the last one and goes quietly into the Darth Vader mask and the wheel chair. We wave goodbye as he leaves! Now all we do is wait. When he comes back from this round, Christopher’s Bone Marrow will be waiting for him.
While Aidan was in treatment Alex took the opportunity to to have a flying visit with while I stayed in Aidan’s room and did more website. Christy was watching Black Beauty on the laptop and all was well when Nonna and Poppa turned up about 6pm. After lots of smiles and cuddles and hugs we all trooped upstairs with Christy in a wheelchair (madly playing PlayStation of course) to wait for Alex and Aidan’s return and the Grand Finale of this day.
Alex and Aidan came out of Radiation treatment at about 6.40pm. The Davids turned up. Nicky got the Video Camera out. I got my digital camera out. We were ready. There was even vague discussion about setting up a live internet feed ? (kidding)
And then it happened. The lovely Lucy primed the tubes then hooked Aidan into the marrow. I have to say we all watched with ‘bated breath and a few very teary eyes (doctors included!) as it fed through the tube and finally into his little body.
Christy and Aidan smiled, waved and blew kisses at each other – well when we could distract Christy from the Gameboy and then the David’s took him downstairs to his “room”. They say that the moment of actual transplant is an anticlimax. There’s no surgery, anaesthetic or anything like that. It looks just like a blood transfusion.
But I don’t agree. It was a HUGE moment for Aidan, Alex, Christy, Nonna and Poppa, Kekkie, Wrobbie and all of us who care about Aidan. After six long months we are finally here –it’s the beginning of the “big, big better”.


1st June 2006 - Day Minus One
Well if radiation therapy was difficult when Aidan was unfamiliar with it, now that he knows where he's going there are a few more arguments involved. Alex had to get quite cross with him (and by gum that's difficult when he's the one who is doing all the work) to get him to put his mask on so that we could travel around the corridors to Radiation Oncology. In the end a very miserable Aidan admitted defeat. Poor love, its a very difficult time when things are this sad.
Christy was admitted this afternoon at 2pm, he brightened everything up with several hours of giggling and laughing and generally running about being a hoon. It cheered Aidan up immensely. The chatted to each other onthe phone through the window, Christy every proudly showing off his admission ID bracelet to Aidan and reading his name from it with big laughs. Aidan who was incredibly tired smiled and laughed and waved and blew kisses to Christy who pretended that they were hitting his head with a thump. Christy was also delighted to finally receive Star Wars for his Gameboy (it appeared mysteriously out of his ear!) and immediately started jumping up and down on his hospital bed pulling out his Gameboy for an immediate workout. All of a sudden the quiet was punctuated by the tiny sounds of the Star Wars theme song. Later in the afternoon Aidan returned to Radiation Oncology for round Four. He got to put stickers on a chart in the reception area before we went through to the theatre and got ready for the next round. Thankfully Auntie Kekkie and her camera where there to liven things up. Aidan played to the camera for awhile and was pretty chirpy upon arrival. Put up a fight as the anaesthetic was going in and woke up really cranky with Alex.
Later back on the ward there were more visitors and Aidan was happily distracted, but you can really see now that the treatment is catching up with him. By early evening, his temperature which had threatened to spike to infection levels was causing him great discomfort and pain. After lots of massage and feet rubbing in particular, he has been given the milder pain killers now and is sleeping peacefully. Tomorrow morning will be a very difficult time. Both boys will be in theatre at the same time, Aidan in radiation and Christopher in surgery. Hopefully Alex will get some time with both of them in recovery. It is going to be a little crazy.

31st May 2006 – Day Minus Two
Well two rounds of radiation therapy makes for an extremely busy day. Starting early we prepared to go down to radiation oncology Alex and Aidan had a bit of a struggle over wearing the mask (looks like a little white darth vader with it on - note to self: get photo) but the wheel chair ride is always welcome.
Once down in the room Aidan was happy to look about a bit however the sedative he had prior to arrival didn’t really null his suspicions about Dr Loftman who was standing quietly by holding onto the anaesthetic injections. “Don’t want milk Mum” (anaesthetic is white) said Aidan and started to struggle. Damm thought Alex he sees through our cunning plan.
Anyway after a bit of a struggle Aidan went off to sleep and was laid our on the table. Through the monitors from the technicians station Alex watched him being “ packed”. The bottom line is this; in order for the radiation to be spread evenly through a body which is not of a consistent density all over, “flesh substitutes” (sandbags, rice packs and pouches of a gel like substance), are packed around his body. By the end of it he looks like a cross between a resuscitation mannequin and a small mummy (Egyptian, not biological). Then all the staff leave the room (the anaesthetist watches Aidan from the technicians station, and the radiation is shot at his side at the rate of 115MU/ minute. Half way through the dose they all go in an turn the table that he’s on around and then shoot him from the other side.
All up, with the anaesthetic and packing etc, the whole thing takes about an hour.
Then we get trolleyed to paediatric recovery in another part of the hospital and Aidan is monitored (and cuddled) until he wakes up. Then we are trolleyed or wheel-chaired back to our room. Aidan inevitably wakes up feeling pissed off that Alex made him do “the big sleep” (the non-detective kind). Thankfully there is space in all of that for Alex to have a coffee and distract herself so that she doesn’t have time to think about how awful it all is. Lots of purposeful striding about from theatre to coffee shop, thumping feet and hissing.
The trip from theatre to paediatric recovery this post round two radiation therapy (yes we have to do this twice a day) was marred by Aidan starting to wake up on the trolley. Alex had to leap (unfortunately in anything but a gazelle like fashion) onto the trolley to prevent Aidan from leaping off. Extra cuddles for such a determined Aidan.
By the end of all of this he was still keen to attach himself to the play station, but in the end sleep got him and he drifted off just before 7pm and slept really well all night. Round 3 and 4 tomorrow!