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The rest of July is on the new August page

10th July - 29th July 2006 - Days + 38 to + 58

Aidan continues to do incredibly well. He has dropped a little weight (400g) and that’s something we will start to worry about if it continues, but for now its put down to the increasing running about that he has been doing.
Christy and Aidan are inseparable again. This morning they have been playing with treasure under Christy’s bed and putting together and taking apart some Dragon toys that comes in plastic egg cases, complete with gelatinous egg membrane. They look fearsome and have fabulously pointy teeth but the boys assure me that they are really friendly. They are the favourite toy at the moment and there are long conversations with both boys examining (for the millionth time) the colourful instruction sheets on how to put them together and the other ones that Alex now has to purchase for them.
There has also been a lot of puppy play this morning. Where one of them pretends to be a dog and the other spends a great deal of time patting and riding the “puppy” and ordering the puppy about and “sitting” and “stay there” and various other commands.
Yesterday Dr Kat checked Aidan over and confirmed that there has been no sign of Graft Versus Host Disease (GVHD) and that Aidan’s platelet count means that the graft is working really well and producing a good cell count. Aidan has good white cells and has neutrophils. Counts aren’t yet normal and the expectation is that they wont be for some time to come. But his kidneys and liver and being flushed out well and next week the Drs will consider starting to ween Aidan off Cyclosporin (which is the drug that is used to suppress Christy’s cells from rejecting Aidan). So it’s all very positive news. He has done very well to not have any complications.
During the past few weeks Christy has been doing well at pre-school, he looks forward to playing with his friends, although he also clearly looks forward to days home with Aidan (as does Aidan). His patience with rambunctious Aidan continues to be a source of great pleasure for Alex. He knows that he isn’t allowed to wrestle Aidan back and he remembers that Aidan still has his “tubes” and can be easily hurt. He is incredibly patient with Aidan and looks forward to Fridays when Aidan comes with Alex to pick him up from pre-school. He likes telling his friends that Aidan is waiting for him in the car and that he has to go immediately.
Yesterday afternoon the brown ducks came up from the river crossed the road to our grassy front yard and foraged. The sun on our front balcony was lovely and warm despite the chill in the valley. Cockatoos (our very own skateboarders of the sky) screamed through the trees and chased each other to perch from perch, Aidan stood on the balcony and smiled at them, laughed and skipped inside to find Christy.

3rd July to 9th July 2006– Days + 31 to + 37
Its been an amazing week, on so many levels. Aidan is doing brilliantly. He is sleeping really well, is very busy with lots of activities during the days, eating heaps and there has been no sign of a temperature. His delight at being home and sense of humour reign supreme. He is having lots of fun playing tricks on us all, but most on Christy, who is a happy as he that we are all back home. It’s a great little home for Alex and Christy to arrive at each of the working evenings, Aidan jet propelled out the front door with a whoop and a hug for Christy (sometimes Alex too), heaters on and the smells of dinner drifting down the stair well. Its just brilliant.
Logistically the week has been challenging. We are one of the first families to be using the newly renovated C2North ward which is experiencing teething troubles with the new booking system. Aye karumba! Everyone is an expert and the simplest tasks have taken an age. But Nonna (god bless her) has decided that it’s her life’s work to take care of making all of our appointment bookings. I’m sure that the staff haven’t experienced anything quite like her. She is bringing all of her most commanding skills to the task with great results. We can be in and out in under three hours (which is brilliant because the infusion takes around two). Go Nonna. We’re all a little trained now to be quite pushy with the hospital system. It takes some time to get over the guilt associated with having to be super assertive in a hospital system that is doing its best to help you. But the system itself rather than the people who are part of it, is an uncompromising thing that appears to have a mind of its own, so often with the best intentions you can find yourself at the receiving end of bureaucratic sillyness. But as Nonna would so eloquently put it, “not this little black duck”. Alex has found that the best strategy is to follow smiling in her wake.
Emotionally the week has Alex a little torn. There is a great sense of relief to be home, delight at sleeping mostly uninterrupted in one’s own bed, wonder at the freedom of being able to roam through multiple rooms (because you can) and a feeling that this is more normal than life has been for quite some time. However there is also a lurking sense that we will be going back to C2West sometime soon, whenever Aidan’s temperature dictates. It’s a bit too “living on the edge” to be entirely comfortable. So there is a bit of an edge. Somewhat optimistically Alex has unpacked all her bags (haven’t done that since January) but quite deliberately hasn’t thrown out the “things to be packed – Alex” and “things to be packed – Aidan” lists. They remain in an obvious easy to grab space.
But its lovely to be back in our cold little valley (had to scrape a pretty hefty frost off the car windows Friday and Saturday just gone), with the birds and the possums and the odd, lost its way reptile. To be able to hear real bird song in the morning and not the air conditioning kicking in, or the passage lights coming on, or someone else’s alarm, is just heavenly.

2nd July 2006 ~ Day + 30
Aidan woke absolutely full of beans. Thank goodness we are going home thought Alex this boy needs a run in a park. Well it was a busy morning, it’s incredible how easy it is to collect … stuff. Alex really had to wrestle the suitcase into submission this time. Thankfully Tristan arrived just in time with Sunday coffee and snails. Aidan was checked over and had his morning medicines and Dr Kat said we were good to go. Dr Sue has asked to see use before we go. David arrives with more hands and Alex’s sherpas start the long haul to the car waiting out front. The getaway is coming together nicely.
Karina flushes Aidan’s tubes and disconnects the remaining line. He is free! Dr Sue arrives and runs over last minutes details and says her goodbye. It is both an incredibly significant moment and yet in the scheme of what Aidan still has to do, it’s very early to be getting too excited about not coming back to C2West.
Aidan, masked and ready to move, takes off towards the cupboard (because I am a cruel mother I have allowed Aidan to believe that he can only leave the room via the two sided cupboard) and climbs obligingly in. He wriggles through the cupboard and with a waves of his hand he’s off along the hallway with a wave to the nursing staff who have gathered to see us off. Alex is left behind talking to Dr Sue.
Thankfully Tristan corners Aidan at the end of the corridor and he waits impatiently for Alex. Then there are more waves to the gathered and we’re off to the lift and the car. Aidan gleefully pushes lift button and runs through the ground floor foyer, Alex in hot pursuit. Aidan climbs into the car and chatters about all the things he is going to do, pretty much all the way home.
Auntie Kekkie is waiting for us when we arrive at Chatswood (with Tristan in hot pursuit) Aidan is delighted and leaps out of the car, is through the door in a flash and up the stairs to his bedroom, he pulls his quit off his bed to find that Auntie has filled it with balloons. So there is some flinging about of balloons and with a squeal he’s into his toy basket pulling his pirate costume out.
The house is warm and real coffee isn’t far away but by the time Alex is walking towards the door with the last of the bags she is confronted with a swaggering pirate barring her way at the front door. “Hiya!” says Alex “Aarrr” says the pirate.
The rest of the afternoon is spent chatting, dashing up to the shops to get some food (house has been empty for the past five weeks), unpacking, eating late lunch and pottering about sorting aforementioned stuff. Aidan is given hideously noisy toys and delights in new and old toys. He is periodically silenced by Spyro the dragon on the X-Box. You can see that he is completely delighted to be home, but that underneath he is really tired.
Later after all the guests are gone, after Alex and Aidan have a picnic snacky dinner and a story on our big huggy lounge, in a fit of optimism Alex unpacks her bags.

1st July 2006 ~ Day + 29
Pinch me someone, Alex thinks, it can’t be July. Alex sits in the isolation room watching Aidan happily playing his Playstation and eating vegemite on toast. He looks great this afternoon and everyone is saying so, all the staff and many of the other parents.
You realise being in the fishbowl that this room is, that many parents kinda check in on you, touching your experience because it looks difficult to them (and they would be right) or perhaps because they might be facing it themselves.
Sitting in July and looking back through the months to January 3rd, we’ve come a long way, on so many different levels. We are all a lot older than we were, wiser to the fragility of our world and more appreciative of our good health. Aidan screams in delight as he wacks a “woody” into pieces on his Playstation. Okay enough with this mornings philosophy, here is the news.
Thanks to Tristan you will all know by now that we are going home tomorrow. It was first flagged earlier this week, but we have had to remain while Aidan finishes a course of anti-biotics which he was given for his spots which are all but gone. We are to remain in isolation at home until Day + 42, we are Day + 29 today and there is a complex program of drugs and tests and infusions that continue. We have to for example, return to the hospital for two hours for an IV medicine on Monday, Wednesday and Friday until Day + 100. Some medicines that we start tomorrow Aidan will have to take until around March next year.
The big difference for Aidan is that he will be able to hug and play with Christy. Their separation has over the past few weeks has become increasingly difficult, particularly for Christy who when visiting is reminded that he is on the non-Playstation side of the window pane. Poor little luv, he has been feeling very left out.
Of course when Alex spoke to Nonna last night, both of our Christopher’s (big and small) have been walking around with the sniffles, so we are checking in with whether or not we will be able to be re-united later today. Sniffles might mean that Aidan and Alex go home alone, initially at any rate. Aidan tells Alex that he wants to see the fairies and the cockatoos again (we have both at our house) and he wants to play with his light sabre and this pirate ships, the big one and the small ones. Arrrrrr! Alex replied and got frowned at. (Clearly entering the time when mothers should just butt out thinks Alex)
Anyway I will fill in the days of this week a bit later today, so check if you are interested, until then imagine Alex packing ..,