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1st March 2006
It was a big day. Starting with clinic in the morning we got the best news, Christy is a bone marrow match! While Alex had been planning to ask, Dr Melissa told her the news with a big smile, which of course caught Alex right off guard and she teared up immediately and has to bite her tongue to stop from weeping. Obviously it had been worrying her more than she cared to admit. Dr Melissa went on to explain that because it is such a critical issue they do the tests twice just to make absolutely sure that they got it right the first time. So we made plans for Christy to come in for another blood test while Aidan dragged all the books out of the box in the corner of the room and distributed them all over the floor.
We then went to find Lucy to have more bloods taken and then made our way upstairs to the North in South Ward to prepare for surgery. Thankfully Attila wasn’t there, Alex had been preparing her face way in advance and felt slightly let down.
We bustled about and filled in time with games from the game room and soon enough Dr Brendan (side burn free, back pack toting anaesthetist) visited to check up on Aidan. Shortly afterwards Alex piggy backed Aidan down to theatre where Aidan created havoc in the holding bay with the Playstation while we waited to go in.
Unfortunately Aidan now recognises the theatres so this time on our way in he starts to complain and cry. He struggles quite a bit and its all a bit distressing. But Dr Brendan is there and Aidan is sedated and falls off to sleep pretty well.
Alex makes a quick get away and flees downstairs to the café to get some breakfast. Its 2pm and a complete wonder that she has been as reasonable as she has been considering that she hasn’t even had a coffee!
Shortly afterwards Alex is holding Aidan as he wakes. Aidan comes out of the general fog complaining and completely over this whole experience. It’s quite a workout holding a small boy who is angry and trying to get away from you. Eventually he was pacified by promises of computer games on our return to the ward.
Chemo 3 started later that afternoon. There is no time to waste.

2nd March 2006
Nonna arrives with Christy and Alex takes off to work. Alex is called back to the hospital early to speak to Dr Sue, who needs to have the conversation about a feeding tube for Aidan. Yuck. Alex’s stomach cramps at the mere thought of it.
Alex arrives back at the hospital. No Dr Sue. Waiting. One hour. Waiting. Two hours. Waiting. Waiting. Eventually Alex goes in search of Dr Sue and three hours after being summoned back to the hospital is finally able to speak with her. Dr Sue is concerned about Aidan’s weight. She explains that as we progress through each course of chemotherapy that it will get harder and harder for Aidan to recover lost weight. This has of course become more critical as we now know that we can go ahead with the bone marrow transplant. So it’s time to put a feeding tube down (is threaded through the nose and all the way down and into the stomach) so that nutrients can be fed to him overnight and weight can be regained. Well it’s a no brainer of course, he has to have it, but it’s another challenge to work out how to break it to him.
Alex decides on the bribery angle and bites the bullet and purchases two GameBoys for birthday presents. One is charged immediately in anticipation of a bout of caged lion round about the stuffing tube down one’s nose stage. Retail therapy partially works. Aidan is of course completely oblivious to all of this and has had a happy day attempting to convince Nonna that he should be allowed to play the “purple robot” [read: computer game]. Nonna resists as all good Nonna’s do. Aidan is disgruntled but cheerful.

3rd March 2006
What a way to spend your birthday. In hospital and hooked up to the special robot. Aye carumba. We have plans for a zoo visit and a real birthday when we are out of hospital next.
Alex has meetings this morning and takes off pretty quickly upon Nonna’s arrival. Nonna and Aidan spend time wrestling Aidan away from the computer and read the picture encyclopedia for an hour. Alex arrives at lunchtime for the planned feeding tube insertion.
Round One
Aidan is briefed by Alex and walked around to the Treatment Room. He gets to the doorway and remembers that this is the room where injections get given. Aidan is not impressed and wants to go back to the ward. He is encouraged inside and sits on Alex’s knee on the bed. Tubes are measured, Aidan starts to get cross. The nurse tells him what she’s going to do and Aidan refuses point-blank to co-operate. And who could blame him? Well we were warned. There were tears and kicking and screaming and Alex felt like she was wrestling a crocodile trying to keep him still. He’s a very strong little boy despite the skinny factor. Even with the help of two additional nursing staff it was extremely difficult to get the tube down. And of course it has to get past the gag reflex. Note: this is the reflex that makes you vomit. So of course Aidan vomited all over everyone. Nursing staff, Mother, everyone. It was completely awful. Anyway after about half an hour the nurses gave in and decided to speak to the Doctors about sedation. Aidan still crying turned to Alex and grabbed her in a hard hug. Alex cried right back and we two sat on the bed and cried for some moments.
Round Two
A fantastic sedative called Medazelam (“you can me-daz-el-lam and they’ll make you a starrrr!’ – obviously sung to that Chicago musical tune) was ordered and administered to Aidan later that afternoon. Within moments he had a just-drunken-four-martinis look on his face and was absolutely delighted in a Dean Martin kind of way to be carried back to the Treatment Room. Alex mistakenly pointed and named the animals on the walls incorrectly which Aidan thought was hilarious and then he slurred (yes slurred) out the correct names. Then the hiccup-ing started. Alex sat the little drunk down on her knee again and assumed the position. Again the procedure was explained to him and he smiled. Alex almost fell off the bed – for Christ sake would some one get me some of that! Anyway the tube went down with a little discomfort, but once it was in Aidan was kind of surprised at he sensation and started talking about the tube in a smiley pleased fashion. There was a little fussing in order to aspirate (remove from tummy via syringe managed suction) some apple juice from Aidan’s tummy, but we got it in the end. The tube was taped to his cheek with many comments about his new pirate look (made by D1 who had kindly held Mummy’s hand (metaphorically speaking) and Aidan’s legs (physically speaking) through this) and there was some aarrrrgghing and with a happy anti-climatic feeling we were back on the ward. Aidan sporting a new feeding tube and turning his head slowly from side to side as he got used to the sensation of his new tube.
Of course now that he had his feeding tube in (Alex was given a demonstration on how it all worked) Aidan then proceeded to eat dinner for three.
Round Three
Chemo drugs make you sick. And often if the anti-nausea drugs are wearing off, the odd dry retch isn’t uncommon. So. It’s one am in the morning, Aidan sits bolt upright in bed and dry retches. At the sound of the first dry retch Alex wakes in alarm and leaps off camp bed in alarm and attempts to support him. The second dry retch snorts about two inches of the tube out of Aidan’s nose, Alex leaps forward and everything moves into that slow motion thing that happens at times of crisis. “Nooooo” says Alex and she grabs for Aidan’s hands, which move at lightening speed to rub the irritant away from his nose. The entire tube is removed in a flash. Aidan sighs in a contented manner and rolls over back to sleep, leaving frowning Alex hovering with anxiety over his sleeping body, purveying the damage.

4th March 2006
Thankfully after last nights high jinx Dr Melissa has cleared us to remain tube free until the chemotherapy has finished on Monday. Her decision may have been helped by Aidan who, having just been given a smiley cup cake by gorgeous friend Mandi, (Alex got coffee and toasted sandwich) was proceeding to attempt to fit most of it in his mouth. Quite an alarming sight. Dr Melissa was impressed, said she had never seen a child having trouble with a feeding tube eat quite so much before.
A quiet day. Even when Christy visited in the late morning time was most unenergetically spent playing computer games and developing repetitive injury syndrome (no doubt). Alex is planning for Aidan to have a thumb transplant after we have dealt with the bone marrow. Aidan and Alex quietly gave Christy his birthday GameBoy and Aidan showed Christy how to turn it on and how to get the games started. There was much discussion about the games and the two of them sat side by side and attempted to wear their thumbs out.
More quiet day. Crystal visits with a birthday DVD for Aidan. We play it immediately, it has scarey bits with big teeth and claws which Aidan tries and fails not to watch. Animated Tom Sawyer can do that to you.
Aunti Kekkie visits and Aidan challenges her to Sonic Hedgehog while Alex goes for a walk to collect some take-out.
Aidan consumes more Won Tons for dinner.

Post script
Today was the last day for one of the Ward’s nursing staff. Apparently she has been in nursing for seven years. Seven years of day and then night shifts, of dealing with other people’s bodily fluids, stick injuries and walk/running laps around wards, of little un-deserving kids in pain, of phone conversations with cranky blood bank people, of dealing with toxic chemicals and stressed-out parents and all I suspect with very few thank you’s. It bloody amazing anyone takes this job on, but when you are in a situation like Aidan is, you are extremely grateful thankful that they do.
This woman was notable from the first time she bustled into Aidan’s room to fix up some unruly lines that were repeatedly setting off the pump alarms. There is a level of organization, efficiency and no-nonsence about her that made her a stand out right from the beginning. Trust me she’s absolutely the person that you want on your team, so her leaving is a great loss. Sadly the nursing career path is very limited, so being the kind of woman who looks for new challenges, of course there will come a time to leave. I can’t help thinking that this must be a re-occuring problem for the hospital. A real flaw.
The real delight (and relief) is that alot of the staff here are like her. There is a lot of really great positive, caring and competent attitude here. It’s exactly the place you want to be if your child is sick with leukaemia.

5th March 2006
Aidan woke up vomiting. Bloody chemo. Alex changed the bed (again). David had offered to sit with Aidan while Alex escaped for a hot breakfast with gorgeous Mandi. So escape she did, leaving the boys in Sonic Hedgehog mode, with Aidan firmly telling David that he was going to win.
Alex then took a phone call from Dr Melissa via David’s mobile. Dr Melissa thought that we would wait until the chemo had finished before we tried putting the feeding tube back in (bravo Dr Melissa) and that despite the little cough Aidan has developed, that he’s looking pretty good. No temps. No other unsightly bodily functions. Big cheeky grins. Chemo due to finish up on Monday afternoon. All is well and Drs are happy.
Alex relaxes and enjoys her smoked salmon benedict and wonderfully girly chats.
By the time Alex returned to the ward the place was in lockdown. Stern and prominent signs on the closed doors declared the new state and directed all non-essential visitors (wonder what one of them looks like? thinks Alex) to phone the nurses station. Once through the doors more signs direct compulsory handwashing and as Alex walks past the kitchen, more signs have closed the kitchen.
So. It turns out that in order to contain an outbreak of gastroenteritus seen on the lower levels, that strict infection control rules are to be applied. Movements of persons to the upper floors are to be minimised and no patients will be moved to the Ward until the danger has passed.
So Alex has to get on the phone and turn Nonna and Christy and Tristan away. Aidan continues to play Sonic, oblivious of all the fuss. Its not like he is allowed to leave his bed anyway!
Wonderful David kindly offers to sit with Aidan tomorrow (Nonna’s not allowed to come) as he is allowed to return to the ward, because he was here when it was locked down. Relief! Alex had to move some meetings from Tuesday to Monday at the end of last week so that’s a real help. All this juggling. Honestly!
Alex and Aidan shoo David home so he can get some rest before the real fun begins.
Aidan and Alex spend the afternoon reading books (gasp!) and telling some stories. We chat about Aidan being sick, and how the feeding tube fits into all this. Aidan wants to know about whether the good medicine will go into the tube, like the other tubes Mum. Alex tells him that its important that he gets lots of food, because food helps the medicine to work. Like Won Tons Mum? He asks. Yes Aidan like Won Tons.
Obviously we eat more Won Tons for dinner.

6th March 2006 – Feeding tube #2
Last day of chemo. Aidan wakes with another vomit. Poor little man, he hates it and who can blame him, what a crappy way to wake up. David arrives and after Ward Orientation 101, Alex dashes off to work. Alex reminds the nurses on the way out that the feeding tube goes back in after she gets home from work. They wave me away with smiles and nods.
David gets to spend a rather vomity day with Aidan. Poor love, he goes from never having changed a nappy before to dealing with all manner of multicoloured bodily gunk. Chemotherapy might be killing the cancer cells, but it cannot be said that this is an elegant mode of medicine, it’s more like the Texas chainsaw massacre.
So Alex gets back to the ward from work everyone is walking around with face masks, they all look a bit like ducks (its the shape of the masks not a spontaneous collective ability to sprout feathers) Laura (nurse) dials up the Medazelam (and they’ll make you a staaaaar!!) and prepares the kit while Alex says hi to the lads and prepares Aidan.
Aidan is in a jolly mood, having been beating David at Sonic Hedgehog all day. David has taught Aidan that the price of success is a mouthful of yoghurt, so Aidan has polished off quite a bit of it today (albeit that he then managed to throw it up again).
We are moved to the next bed (Treatment room out of bounds in lockdown) and as Aidan’s Dean Martini face appears, Sinead goes in with the tube. Although the drugs take the edge off the insertion there is still alarm (initially) and then some discomfort as Aidan gets used to the feel of the tube. In Dean Martini mode he gets all wondery about it pretty quickly, feeling his face to where the feeding tube is taped and then telling us all what it does and where the food is going to go. Aparently it’s going to be taking food out of his stomach. Clearly, we’ll have to work on that one.
Alex dials out for Won Tons again. Yes I am getting sick of them but Ghengis keeps ordering them up so we oblige. Won Tons arrive. Aidan eat 8 plus a bowl of noodles. His shovelling doesn’t appear to be interrupted by the presence of the tube. It’s all going swimmingly until Aidan lies down a bit and starts retching.
Then the noodles all start to come out and HEY PRESTO! So does the f-ing tube. Poor little mite, he is surprised and alarmed to see the tube coming out of his mouth with the noodles and starts yelling Mum! Mum! in amongst his sobs. Thankfully Laura is in the room dealing with our neighbour and pops over to quickly remove the tube and Alex is able to give Aidan a big calming cuddle. We then had to have a chat about how the nose and mouth join up, Aidan was convinced that the tube wasn’t supposed to be able to do that (Alex thought so too), so there was much reassuring to be done to calm things down.
Finally we both sleep. Still tube free.

7th March 2006 – Feeding tube #3
No vomiting this morning! Yippee, although suspect the drugs have a lot to do with it. The Ward is still in lockdown. Its like a ghost town out there, all the bone marrow transplant rooms are full but there are very few kids in the shared rooms. Aidan and Alex start the day with Sonic and yoghurt, the David way, and Aidan manages to get his yoghurt intake for the day. Same trick works with banana. Alex is feeling victorious and smug. Aidan gets wind of it and starts refusing food.
In the afternoon the next round of Medazelam arrives and we do the big nose insertion again (this time in the next bed, as the Treatment Room is closed with the ward). Aidan’s Dean Martini face doesn’t completely arrive this time, and the part where the tube goes past the gag reflex is still pretty awful, but once the tube is down he is quite calm and philosophical about it and of course there is a big cuddle to be had when the third (and hopefully lucky) tube finally finds its new home.
Aidan and I have a loverly evening watching a movie on the laptop but then disaster strikes. Aidan had drifted off to sleep and Alex slowly untangled herself from his grasp being (I promise) completely careful about unwinding limbs etc from the tubes. Aidan feeling me moving out of the bed rolled over and grabbed me and within seconds of doing that he sat bolt upright fully awake and without the tube! It was completely gone. Not even the tape was left on his face. Blimey.

8th March 2006 – Feeding tube #4
Aidan did a thundering vomit this morning. It was awful but after a sip of water he was better, so chances are that had we not removed the tube last night that it would have come up this morning. When this kid chunders he really heaves. The Dr’s are wondering if we are trying to set some kind of a record. They arrange to order up even more Medazelam (my child is going home a junkie Alex thinks) and even more tubes and we prepare for the next feeding tube before Alex goes to work.
Nonna arrives (the ward has been partially opened) and offers to do the tube, so that Alex isn’t too late for her morning’s meetings. Brilliant thinks Alex, hurray for mothers!
When Alex returns Aidan is sporting a new tube. There are paintings all over the floor and Aidan is looking pretty happy. He hasn’t been eating so much this week, which is expected, his throat has been really battered by this round of chemotherapy and Dr Melissa tells us to expect him to stop doing the things that hurt, like eating, drinking and speaking. It explains why he goes through quiet periods where all he wants to do is to watch television. But for now he is quite perky and sitting in bed beating Sonic Hedgehog and pumping his skinny little fist into the air shouting “I did it!”
Nonna leaves to pick up Christy from pre-school and Alex is ordered out to get “chicky chips Mum” for dinner. Aidan is happy to be left by himself to continue to beat Sonic while Alex dashes over to Randwick shops to get the chicky chips.
We settle in for a little dinner, Aidan eats about a cup of chips and a chicken drumstick and has a little apple juice and we quietly watch a movie. All is well.
Of course something is not completely well, and that thing is Aidan. At 2am in the morning, he sit up and does a huge vomit and the tube comes out. Poor little mite. The look on his face is just complete despair. He understands that we need the tube to be in and because it is so intimately entwined with his body, he develops ownership of it, so when it comes out he gets miserable and worried. And its not just because he understands that it has to go back in again.
Alex climbs into bed with Aidan and we cuddle each other back to sleep.

9th March 2006 – Feeding tube #5
The Drs are a little gob smacked. They admit they’ve never had to deal with 5 tubes in one week before. It’s usual for tubes to come and go with kids doing chemo and some kids have ten tubes, but they are usually spread out over the entire treatment, not all in the first week. Aidan’s throat has started to ulcerate with the chemo and the tubes going in and out are not helping to settle the pain in his throat. But the big unknown in all this is whether Aidan is vomiting because of the chemo or the feeds. Both are highly likely culprits and because Aidan hasn’t vomited this much with the previous rounds of chemo, it’s almost impossible to tell. If he’s vomiting as a result of the chemo, chances are that he will start to settle down given that the last round finished this Monday just gone.
The conclusion is to start some pain relief for him and to try one more time. It’s really important to get his weight up before the bone marrow transplant. But this time the tube will get put in past his stomach and right into the top of the small intestine. The insertion will be done down in the Imaging department with a real time X-Ray so the Drs can make sure that the tube goes past the two muscles at both ends of the stomach.
Nonna shoos Alex off to work and takes care of the tube insertion. Alex is attempting to get Nonna to write something about it.
When Alex returns Aidan is playing Sonic and Nonna and Tricia are sitting and chatting, keeping a sideways watch on boy-o who sits in bed pointedly ignoring them. He has a tube mega-taped to his face. Alex guesses that the procedure was successful.
The feed pump is connected and pumping away at a low level. Nonna tries to make a quick getaway but stays awhile when it is revealed that today’s insertion wasn’t as hard as yesterday. Alex and Nonna have a hug and a small weep. It’s difficult to see Aidan hurting. We all hope that this tube stays in.

10th March 2006
A quiet day on the ward. The volume of ‘magic milkshake’ through the feeding machine is gradually increased. The game plan from here is to try keep the anti-nausea drugs fairly regular and to hope that when he vomits the tube stays put.
Nonna brings emergency delivery of coffee for Alex. Aidan plays Sonic until he is cross-eyed. Alex works on lapdog, sitting next to Aidan’s bed.
Movie and an early night. No vomits. Tube still in.

11th – 12th March 2006
Aidan has a loverly bile vomit Saturday morning and the tube stayed in! Wokka wokka wokka! It’s quite a strange feeling to see your child throwing up and managing to feel victorious about it nonetheless. Alex and Aidan have a quiet morning. Poppa visits in the afternoon and Aidan sets about explaining Sonic Hedgehog to Poppa, telling him that he’s going to win. Alex makes a quick escape from hospital to pick up business shirts and shopping.
A surprise visit in the evening from Tristan, Tricia, Zohl and Tim. Lots of chats and some hiding under the rug.
After a slow Sunday morning our peace was shattered by a visit from Christy, (who we heard before we saw) who appeared in the Ward with a yell and some hugs. He climbed onto the bed immediately and the two of them put their zombie faces on and set about beating one another at Sonic. Later we went down to the Fairy Garden and looked under all the leaves for the little fairies. On our way back up to the ward we played racing games with the lifts. Aidan was initially quite alarmed at the idea that we might be going into different lifts, but when the trick was revealed thought it was very funny.
Oh yes, and Aidan’s bum exploded this afternoon. Gruesome, truly gruesome.
Another surprise visit from Tristan and Sacha. Farewell to Sacha, Ed and Max who are off back to the big apple. Aidan came out from under the rug and blew farewell kisses.

13th March 2006
The bum explodes again. This is a hell of a way of starting the week. Twice in and eighty minutes and honestly you would have thought that each explosion would have cleared him out for a week.
Nonna arrives and Alex dashes off to a 9am meeting. It’s a topsy-turvey day and Alex is back by 11.15am for Nonna to make an appointment. As it turns out it was great timing. Due to Aidan’s exploding bottom, we are to be moved upstairs to C3 West, known in the trade as the “vomitorium”. So Aidan and Alex packed. Aidan packed his green ruggie, flat teddy, puppy and the wooden car and sat on a wheel chair looking extremely impatient while Alex packed everything else. By the time Nonna had returned we had a new room upstairs. Alex fainted when we realised that this one has an ensuite. An ensuite I tell you! Alex and Aidan immediately discuss in no uncertain terms how Aidan will remain highly infectious for several days, at least until he produces a neutrophil and we can go home. Aidan nods in agreement, he likes the stars on the wall of the room. Alex remains fixated on the ensuite and has to walk in and out of it several times.

14th March 2006
A big day. Aidan’s feed (the “magic milkshake”) gets turned off this morning so that we can start to convert to over night feeds only. The aim of overnight feeds is to provide 3⁄4’s of Aidan’s daily nutrition requirements over night and then allow him to eat meals as per normal during the day. Alex is delighted, there is an element of the feeds contributing to his loose bowel, the poor little man gets a terribly distended tummy and complains of being full and then whamo, we drop our bundle (so to speak). So the plan for the day is to keep him off the feed and see if his appetite re-appears.
Strangely enough after nipping downstairs to grab a much needed coffee and piece of banana bread, Alex feels Aidan looking to see what food I have returned with. Brilliant. He has a few chomps and it beats him, but only for the moment. (Later on he would eventually finish half of it). Aidan happily plays computer games while Alex works on the computer.
Nonna and Poppa arrive in the early afternoon. Poppa is sitting with Aidan while Alex and Nonna go and see Dr Sue, who wants to talk about Aidan’s bone marrow transplant. Alex who has been reading until late in the night fairly regularly since Christy was identified as a match, is feeling pretty prepped and has a list of nineteen initial questions.
It is fair to say that the meeting was pretty heavy and Aidan’s battle is about to be ratcheted up several levels. For more detail about his future treatment see the bone marrow transplant road map piece on the treatment forum page.
After the meeting Nonna escapes to pick up Christy. Alex sits with Poppa in the room and fills him in on the basics. Nonna and Christy arrive and Aidan gets very excited. All at once the air is filled with the excited chatter of two little boys who have lived in one another’s shadows for four years and have been separated for most of the past three months. Aidan tells Christy about the games he has been playing and Christy shows Aidan the band-aid covering a scrape he got today at skool. Aidan is most impressed but tells Christy off for running so fast. Christy says ‘Okay Aidan, okay okay” and then moves swiftly onto the new topic of conversation , a tactic that he also regularly uses with his mother Alex thinks.
Alex and Poppa procure noodles for dinner and we sit about the room, scoffing noodles and chatting about the impending transplant. Not due until June, but so much to get done between now and then!
Aidan gives everyone big kisses and hugs as they leave, even Christy. Clearly he has moved past being the centre of attention and is genuinely missing his family, especially Christy.
Alex reads Aidan a bedtime story and returns to her computer.
About two hours later Aidan sits up in bed and throws up all the noodles. He gets so terribly upset when he chunders. Clearly he doesn’t understand why he does it, it feels awful and he behaves as if he’s ashamed to have done it. During the chunder about 4-5 cm of the feeding tube comes out as well. “Mum, put it down, put it down”, he urges Alex. Alex gets Aidan to have a drink (remember the gag reflex) and encourages the tube back down. Aidan is relieved. There are cuddles and gorgeous nurses appear and change the bed. Alex puts Aidan back to bed and he sleeps soundly.

15th March 2006
Aidan’s bum continues to be somewhat unruly, but the antibiotics seem to be doing the job, just taking longer than usual. And his appetite has also picked up, so it was no surprise when we were discharged on Wednesday afternoon to go home. Nonna and Aidan headed off to Chatswood and Alex returned to work, pleased with the notion of picking up Christy and going over the bridge to our cosy home.
We were all pretty happy to be at home. Had a wonderful dinner and lazed about.
Aidan went to sleep, Alex put the “magic milkshake” on and wrestled with the temperamental pump. After about an hour he vomited pretty much all over the place. Luckily the tube stayed in.

16th March 2006
Today was a quiet one, Alex at work, Christy at skool, Nonna and Aidan at home. Nothing much to report. Aidan ate well and was playing X-Box by the time Alex and Christy got home. But Poppa had replaced Nonna, who was at home feeling unwell. Has a familiar ring to it. Alex thinks she has probably picked up the gastro thing. Between all of us, it’s a wonder it hasn’t happened sooner really. We all had a tasty bbq dinner watched Star Wars and boys went off to be without much fuss. Christy was fascinated to see how the “magic milkshake” goes on and likes to help Alex by assisting like a theatre nurse. We all settle in for the night.
At about 11.00pm Aidan does a massive chunder and the tube comes up. Thankfully both the Chris’ are on hand to fetch towels and wash Aidan, while Alex scrapes up the vomit and changes the bed.

17th March 2006 – Feeding tube #7
Here we go again.
Aidan and Alex prepare for the hospital, Aidan look pretty bloody cute in his bandana and jeans and Gameboy back pack. He likes the idea of a visit to the hospital even if it is to give blood. Alex collected the stool sample from an obliging Aidan who appears to have developed the ability to crap on demand. And we sing our way over the to the hospital. The blood test took longer than expected and Aidan didn’t want to do it, but it was a finger prick one so he eventually settled down. Then we walked over to the Admissions desk where one of the attitude bound Administrators was the gatekeeper. Of course we didn’t fit any of the plans logged in the computer so there was some frigging around to be done before we got our sheets to go up to C2 North, the home of Attila the nurse. Well she was there, but Alex must have had one of her go-on-try-it faces on, because she was as nice as pie to the two of us. We waited for awhile and whining Aidan (think he was trying to set some kind of a record this morning) eventually got to have a go on one of the purple robots.
Dr Jo arrived within the hour to check Aidan out. She wanted to get another tube into him, as the previous one had delivered a reasonable amount of feed into his increasingly skinny body. Of course now that we are on the downhill run to a bone marrow transplant its even more important than before that we get Aidan’s weight up. So it’s back to radiology for another duodenum insertion. Read: insert the tube through the stomach and into the small intestine. The insertion is booked for 2.30pm. Of course Aidan hasn’t eaten which is only increasing his general whine levels. Poor little bloke no matter what we do to that poor little tummy of his it just aches.
Alex carries Aidan down to Radiology (obviously a mistake) and we eventually find our drop off point. Our C2 South nurse is about to leave and the nurse taking over asks her if she has administered the Medazelam (the Chicago drug of choice for Dean Martini faces), no says our nurse I was told you were doing it. Alex’s heart sinks. Sedating a small child is a serious business, there are a number of risks involved and folks unaccustomed to doing it usually wont. So calls are made and eventually Dr Jo is summoned to the Screening room (read: room with frighteningly large X-ray equipment, imagine room-sized robot with multiple screens and exhaust tubes hanging around the room) and the Medazelam is administered.
While we wait Aidan falls asleep on Alex who chats with the enrolled assisting nurse, who it turns out is a lovely woman that Alex worked with several years ago. So one catch up chat later and Aidan, is sitting on the screening table and starting to giggle at everything with heavy lidded eyes. We allow him some time to sink into the Medaze and the tube is inserted. The X-ray is to see where the tube is, its done in real time and the pictures are both frightening and fascinating. There is Aidan, all of his internal organs and bones and this snake looking like tube slowly moving down through his stomach. It got stuck a couple of times and Aidan had to be rolled over by Alex and Nikki (enrolled nurse and ex-colleague of Alex’s) so that the tube could continue on its way.
Eventually the Radiologist was happy (they had to get the senior one in to do it) and we were waved good-bye by Nikki the enrolled nurse and finally wheeled back up to the ward to be monitored until the Medazelam wore off. Aidan was pretty happy to inhale a ham sandwich and an apple juice while we waited. Poor little mite, he almost choked a couple of times it was going down so fast, Alex tried to slow it down but he almost took her arm off at the elbow a couple of times. Dr Jo checked in on us and announced that if he threw this one up we weren’t to worry about it, but spend the weekend at home and call on Monday.
Alex asked when the pharmacy was going to close, she also had to pick up 4 doses of GCSF (daily post-chemo injection that stimulates white cell growth) and the nurse kindly said she would organise for it to be delivered upstairs. Well we were the last ones on the day ward. The GCSF apparently went to three places, and took about five phone calls to track down. The nurse was getting desperate that she would never get to the pub (poor lass, its awful to be the last-thing-Friday-pain-in-the-arse problem that appears inevitably on the evenings when going to the pub has been organised) when a Dr raced in the door swinging a plastic bag complete with injections. Hurray we were free.
We got home at 5.45pm.
Aidan threw the tube up at 10.45pm.

18th March 2006
Another quiet day at home. Alex potters about tidying piles of untidy able stuff. She thinks it moves from one place to another by itself, or perhaps that’s just her. Mounds of washing to be done. I am joined in the laundry by a beautiful brown leaf-tailed gecko who squawks indignantly at me for trespassing in his house.
The downside of finally being home and relaxing is that the emotional stress of the last stay in hospital finally catch up with Alex. I can’t sit on my balcony without tears. It becomes a bit of a weepy day, where boys hoon about and Alex has moments from time to time. Nonna arrives back feeling better, we prepare bar-be-que despite the gathering clouds and Poppa manages to cook in between light showers. It’s the best dinner. And given the melancholy of the day there is no other option but to watch Pride and Prejudice (the one with Keira Knightly. Note. The BBC version with Colin-swoon-Firth is much better).
Big sleeping, Aidan makes strange sounds at 2am but no vomit.

19th March 2006
Lazy Sunday. Lads mostly whiney and complaining. Aidan’s bowel movements haven’t improved that much and today they take a turn back to think soup status. Looking forward to talking to the Drs tomorrow Alex thinks. Auntie Kekkie and Unku Wrobbie coming tonight for dinner. Big yum.

20th March 2006
After many telephone transfers and calls to and from a variety of offices Alex finally managed to pin Dr Sue for a chat. Honestly she doesn’t sit still for a second. We chatted about Aidan’s continual rejection of the feeding tubes and surgery planned for this week. The up shot of the conversation is that we are going to try feeding tube #7, one last time then its onto TPN, the intravenous nutritional feed. We also planned the next few days when the blood tests, lumbar punctures etc would happen, which day for surgery and Alex made numerous entry’s into the palm pilot.

21st March 2006
Aidan is eating much better now. He regularly requires two pieces of morning toast and is interested in sausages again. He is also interested, no, obsessed with X-Box Star Wars (the kids Lego version – its very good and instead of everything dying all the characters get smashed to bits, emulating of course real play with real Lego) and to cope with the obsession (which is of course shared by Christy) Poppa purchased a clock which sits above the X-Box and heralds the end of the X-Box playing period. Of course there are still shrieks but there is also peace. Bag packing tonight. Selection of DVD’s to take with us, Thunderbirds are go (as they say in the classic).

22nd March 2006
Nonna takes Aidan into Clinic this morning has bloods taken and Alex joins them around noon for consent form signing and confirming the final details prior to surgery. Then the strangest thing happens. Dr Toni (new Registrar) is finalising the details, having made several million calls to put Aidan on some lists and take him off others, and then she checks the bug detail with Dr Sue. Suddenly we are sent home for another week. It seems that the final results for last weeks poo are back and Aidan still has the bug. So Dr Sue has decided that rather than give him the chemo starting today (he is due for some intra-thecal during surgery) that we should be sent home to rest up for another week. Woo hoo. Of course Aidan had been fasting in preparation for surgery so we stopped to vacuum in a sandwich before Nonna and Aidan climbed into the sporty and with cheesy grins on little wing nut faces, speed off into the gorgeous day and back to gorgeous sunny Chatswood.
Alex walked back down the hill to work. [sigh]
The family is reunited (although Alex bets it doesn’t feel that way for the lads) for a fabooolous bar-be-que dinner. Another week! What a blessing!

23rd March 2006
Of course just to make the week really interesting and slightly tense, Alex has a job interview today. Aidan spends the day drawing and going on bear hunts in the local park with Nonna. Apparently no bears were to be found, but there was a big black Labrador belonging to one of our neighbours who got a lot of cuddling. Aidan was in a very chirpy mood tonight. He and Christy had great fun playing Star Wars when Christy got home from skool. The two of the have many discussions while playing and then they both tell us all about their various exploits at dinner. It usually sounds like lots of stuff gets blown up most of the time.

24th March 2006
Christy gets bundled off to skool by Nonna this morning. Alex and Aidan settle into a cloudy day. The day is blissfully quiet. Aidan’s bug appears to be leaving his system and there is nothing specifically remarkable about the day, it is very normal and quiet day. Which of course for us is completely remarkable.

25th March 2006
There is great amounts to be done. The word has gone out. We are going to the zoo and there will be a small gathering to celebrate the boys birthday. Of course it has taken so long, because if you recall, instead of celebrating a birthday on the correct day, we opted to put the first feeding tube down instead. Ahh! So wonderful David has organised the zoo after hours for us and there is a picnic to compile. So there is shopping and cooking to be done. Excitement levels are up, and despite being allowed to play way too much X-Box (its raining outside) and being in that overall zombie like state that children get into when fighting droids and the like, they manage to pick up that something is going on, and its really soon.
Concepts of time are only just beginning to gel with the lads. The clock above the X-Box has been on factor, as has counting time in “sleep” terms. “One sleep” until going to the zoo, has certainly heightened the excitement factor.

26th March 2006
The day dawns and the final hurried preparations are made. Then before you know it, and without an afternoon sleep, its 4pm and we are standing at the gates of the zoo waiting to be let in.
While it is true that Aidan and Christy actually own the zoo, that’s right it’s theirs and the rest of us are allowed to share it from time to time. We of course couldn’t have done this without the help of the wonderful Zoo Friends. They kindly organised a wheelchair and our very own personal guide Leanne, who it seems, is as excited as we are! Once we are all gathered it’s off to the Sky Safari for a round trip so we can see the site from the sky before we get down amongst it. Aidan and Christy were particularly excited to do a round trip (hadn’t attempted that before) and Aidan stood on the seats the whole way, pointing and gesturing at everything, laughing at Auntie Kekkie in the next cable car with her camera whiring away. Then it was on to the crocodiles (Umm, alligators, corrects Leanne gently) and then down to the giraffes and zebras. There is a baby zebra at the moment that Aidan was pretty impressed with. Then it was off to the chimpanzees, who were in a particularly cheeky mood, where we watched two of the little guys playing with one another, and another little chap teasing his mother… now where have I seen that before thinks Alex?
And then to the lions, the bears, the tigers, the meer cats with Aidan prone to running off as fast as his skinny little legs could take him (David can attest to that actually being quite fast). So of course it should have been no surprise to anyone that Aidan eventually came a cropper in front of the new Food Hall near the elephant enclosure. So there were a few tears and we waited for Richard the First Aid guy who was good at producing band aids, which of course to Aidan fix pretty much everything. Aidan had managed to give himself a bit of a cut, but it stopped bleeding pretty quickly (Hmmm, good platelet count thinks Alex) and it was soon clear to Alex that what we were actually dealing with was 50% fright and 50% sore noggon. A few band aids later and a superbly applied bandana and we were on our way, Aidan perched up on high on D1’s shoulders (Christy was perched of course on D2’s shoulders) and it was off past the gorillas to see the penguins (in bed) and then up to the seals and gibbons, echidnas and Isa the wombat. Finally the ducks and it was time for a picnic.
Bye Bye Taronga Zoo you are the best! We can’t wait to come back to see the elephants when they arrive, we’ll be seeing you again after Aidan has new bone marrow!!
Plans for a grassy picnic were thwarted by (of all things) a wedding party, who had booked Athol Hall, so we walked down to the beach, where all the boys proceeded to race towards the line of slippery looking jagged rocks that lined one side of the beach. Thankfully the less experienced rock hoppers were able to be momentarily distracted by presents and “trumpets” of ham and salami “sticks” from the picnic hampers. It didn’t take the grown-ups long to be sitting about with glasses of wine (the adults not the kids) discussing who amongst us was prepared to down glass and rescue aforementioned children from aforementioned jagged rocks.
Alex can remember running along rocks like that as a kid. Feeling completely sure footed and enjoying the little worlds that were passing under my feet. Feeling genuinely puzzled about my mother’s worried reaction and annoyed that she would require that I slow down before I “broke my neck”. Alex is looking at her children now and joining Nonna in feeling completely toey and anxious about the innate desire that small children have to wander to the edge of jagged rocks at the edge of the sea. Nonna and Alex’s vexed nerves are saved by the gallant David’s who like the surrogate Daddies that they have become, follow the small fry out onto the rocks and encourage them back from the precipice. Cheers to the “Davids and Davids” As Aidan so aptly puts it.
We have a terribly Sydney picnic, the sun sinking down behind the Harbour bridge, listening to the inner harbour waves and that wonderful hollow clanking that ropes make on moored yachts as they rock on the evening tides. In the very last rays of the evening we hurridly packed the picnic bags, called the children in from the rocks and made our way up the hill (which appear to have gotten steeper from when we went down it) to the car park.
I asked Aidan and Christy if they had fun today as we pulled out onto the road. Two excited voices immediately started chattering about the afternoons exploits. From the animals to the rocks the cakes and the presents, Alex got earfuls in stereo until the car got to the expressway, where the rhythm of the roadway surface put them both to sleep in record time.

27th March 2006
Alex drops Christy to skool. He is very upset as she leaves for work and has to be held by one of the carers. He knows that there is only one more sleep before we have to go back into hospital. Alex feels incredibly guilty about Christy. By necessity she has to periodically abandon him and it hurts every time it has to be done. So it feels really good to be able to pick him up again and to chat about his day “playing with the kids” on the way home.
Aidan has had a delightful day with Nonna but is also a little sore from yesterday, he wants to be picked up a little more often than usual and complains of his feet hurting him. (one of the several thousand chemotherapy side effects that Aidan juices for all its worth, which is usually quite a bit)
Alex packs the bags again and wonders if the Tawny Frogmouth perched in the tree outside for the past two nights will be there when she returns.

28th March 2006
So we arrive for blood tests at 9.30am as planned. Pick up the forms from C2 North which has moved to da-da-da-dah! C3 North (got yo keep us parents on our toesies), and are told that they don’t want us back for clinic because Aidan still hasn’t been cleared of the bug and that they have nowhere for us yet. Still trying to get a bed. Brilliant. You really get the sense that sometime you get your treatment by the skin of your teeth. Staff must either be (i) completely used to doing the bed juggle, or (ii) completely fed-up with having to do the bed juggling act all the time. Alex leaves her mobile to be called when a bed becomes available, we hope that will be in an hour.
Down in the pathology department, Aidan puts on an incredible act about having his finger pricked for a blood test. I can see that he is now really over it. He just doesn’t want to be prodded anymore. Its hard to reason with a 4 year old in situations like this, so I explain to him again what has to happen and how it helps the ‘good medicine” and how its only a little ouch then its all gone. He refuses again, so I tell him again and ask him if he wants us to take the blood from his arm. He doesn’t want that either, but he keeps refusing everything and screaming (we are talking glass shattering here), so I tell the nurse that when I hold him this next time that she is not to hesitate but is to get his finger. Then Alex holds Aidan in a grip that a World Pro Wrestler would be proud of and the nurse pricks his finger. Aidan looks surprised and stops crying. There are still complaints and sniffling, but thankfully no more attempts to shatter the glass bricks in the waiting room. Aye karumba.
Okay so where does one wait with a possibly infectious child who is fasting for surgery? In the foyer of course. We take up position in a comfy lounge and make no bones about (where does that expression come from Alex wonders) spreading Aidan’s new toys about the place, settling in under the watchful gaze of the reception staff. Aidan’s new Leap Pad book is about to make its spectacular entrance. Aidan turns it on and Alex enjoys observing the body language. (Consider our predicament, Alex hasn’t had a coffee, Aidan hasn’t had breakfast and we have nowhere to go, you have to find humour in something, so why not torment the other guests?) So here is how these things work. A cleverly designed book sits in a dock which must be a little like a specially designed keyboard. A special cassette which comes with the book is clipped into the side of the dock and you switch it on. Using a stylus, connected to the dock, the child can touch the drawings on the book which elicit an audible response, part of a story is read out, or a piece of music is played or a sound effect is given. The child can touch these pictures as many times as they like, often with startling results. If for example you touch the same picture repeatedly very quickly, you get the first part of the sound, or word or piece of music … repeatedly. So imagine this. All the speaking parts immediately stutter and sounds effects and music “grabs” sounds like Kraftwerk have gotten at them. From time to time Aidan finds a female voice which does sighs, and then makes her do it repeatedly. Honestly I have no idea why he finds it funny. Really amusing people watching though, it you can do it with a straight face that is.
To the relief of the folks who we enjoyed tormenting with Aidan’s toys, we were eventually called up to C3West, known in the trade as the Vomitorium. (Infectious diseases ward) Thanks to Aidan’s tummy bug we have our own room (no ensuite this time blast it!) It didn’t take long to settle in. And before long we were wheel-chairing out way down to surgery. Aidan recognises the theatre and particularly remembers that he doesn’t like the “robots” in the theatre, although he can’t tell you why. Dr Jo and Dr Melissa were there and Aidan gave them a wave as we arrived, then got all shy and refused to speak to anyway for fully 10 minutes. Before long he was off to the land of Zeds and Alex was heading out the door to Caffeine land. By a strange twist of fate Nonna decided to arrived at that time so instead of ordering one coffee Alex ordered two. Then it was back up to Paediatric Recovery for Aidan to wake up. (Nonna split to pick up Christy) All had gone well, and he woke up in a relatively calm-but-grumpy-as-all-hell manner. He insisted upon being picked up and held by Alex while standing (not allowed to sit down for some unfathomable reason) for 25 minutes before Alex was wheeled back up to the Ward (no really she was) with Aidan sitting on her lap hiding under a rug all the way.
And we’ve been here since. Aidan now has feeding tube #7 in – when this one comes out that’s it Jack, we’re on to TPN intravenously – and at the time of writing (11.17pm) the meter it ticking over at 10mls/hour. Not exactly record breaking, but 10 more mls than he would otherwise get. One mustn’t complain.
Ps. Got and accepted formal job offer today.

29th – 31st March 2006
The days are ticking over slowly. Aidan is champion at several new computer games, we had our photo taken with large character mascot things from Ice Age 2 movie who visited the ward, met some nurses who either knew about us before we knew about them, or who had at various times nursed our mates, Alex, Chris and Nicky.
Aidan’s feed has reached his goal of 60mls/hour and he hasn’t been vomiting so much. Just when Alex was starting to get confident that somehow this time tube #7 would be different it call came flying out. Friday morning nice and early before we even had a chance to get out of jammies, Aidan chundered his tube up. Poor little man he was so miserable about it. Immediately he started asking me to put it back in “quick, quick mama” and he was very worried that he was in trouble and that the doctors would make him have another one. First things first, perched precariously over large lakes of vomit, Alex slowly pulled the tube back through his mouth and out his nose. It must feel awful to have something sliding around in the back of you throat like that, as close as close to your gag reflex, yet there being only one way for it to come out.
So Alex cleaned up the mess and bagged the chemo vomitus. Aidan needed a long cuddle afterwards, he told Alex repeatedly that his tube had gone “It just come out Mum”, he would say with a surprised yet slightly worried expression on this face.
Alex spoke with the Doctors and an eighth tube has been ruled out. We all agree now that Aidan is no good at keeping them down and now that new hospital records in the throwing up of one’s feeding tube stakes have been set, its best to try a different strategy.
The good thing about Friday was that later on in the morning the Doctors gave Aidan the all clear on the buggy poo front, so we were able to leave our good mates at the Vomitorium and move back downstairs with all the baldies on the chemo ward. Dr Tracey also told us that so long as we don’t get a temperature spike that we can go home on Sunday night after the last chemo is administered. Alex starts planning immediately but holds off on packing the bags.