aidan  


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May 2006

26th April - 9th May 2006
Round Five Chemotherapy. Normally round five would be injections as an outpatient and then home in between. However because Aidan has lost so much weight, and as he is a heavyweight champion at vomiting up naso-gastric tubes, he need to be hooked up to TPN. TPN is a mixture of protein and lipids intravenously. The recipe for it reflects what is needed according to his blood tests, so it changes slightly from day to day. However it wasn’t long before it became the “fat juice” to us. Aidan was quite mobile throughout, he enjoyed zooming about on his “special robot’, visiting other kids in different wards, sneaking up on nurses and generally screaming a lot and running quickly away. It took a fair bit of Nonna and Alex’s effort to keep up with him.

10th May 2006
A chance encounter with Dr Tracey has rearranged our leaving date from Friday morning to Thursday night. The TPN will apparently be able to be turned off by 9pm Thursday night. So Alex and Nonna start to plan the escape. Nurse Abbey tells us that in the US they wean the TPN over a couple of days.

11th May 2006
So the plan had been to have Aidan off the TPN by 9pm got changed by 10am. The Doctors are saying that we can be done by lunchtime. Nonna and Auntie Margie do some packing while jack-the-lad plays games. By the time Alex pops by after lunchtime we are almost ready to leave. A quick dressing change on Aidan’s tubes and Nonna and Aidan are heading for the hills. Alex goes back to work.
It is just a wonderful thing to pick up your son from childcare. Alex gets the biggest hugs and kisses from Christy when she turns up on days like today. We chatter to one another all the way home, sing “dingle dangle scarecrow” three million times and yell “Yeee-haar” at the top of our lungs each time we go through one of the many tunnels that are on our way home.

12th May 2006
Christy is off to skool with Alex and Aidan gets looked after by Auntie Kekkie.
Everyone collapses at the end of the day13th May 2006
Saturday. Woke slowly and eased into the day. Aidan on the other hand has been leaping about with his brother, they are both excited to be spending this time with one another, distributing toys about the house the way that you do when you haven’t seen them for awhile and have to play with them all immediately.
Alex and Nonna who have learnt to get things done the very instant there are seconds to spare, make a mad dash into town, while Poppa holds the fort at home with the lads.14th May 2006
Aidan has been sleeping very well. Christy crept into bed with Alex at 7am with Spiderman in tow, and we have chats about dreams until restlessness for cartoons sets in. Then we creep out of bed into the cold loungeroom and switch on the television and heater (not necessarily in that order) and tuck Christy’s ruggie in around him as he snuggles into the lounge.
Aidan is usually awake by the time Alex creeps back up the passage. This morning we had a brief cuddle, Alex half in and half out of the bed. Aidan refused entry on the basis that Alex was much too big and that this bed was only for little boys.
The boys settled for toast for breakfast (snakes were refused by indignant mother) and since then they have been remembering all of their toys, Aidan has periodically dragged all sorts of things out of his room yelling “Mama look what Aidan found!”
The house is a mess. We are bbq-ing dinner later to celebrate Big Chris’s 61st birthday, which is technically tomorrow, but being toasted tonight.
What a blessing it is that we are all home for it.

15th May 2006
Christy’s last day at skool before being quarrantined. He is delighted to be going to skool and we talk about the special present that he will be giving to Aidan when he gets to go to hospital. He of course doesn’t understand the ramifications of his special gift, certainly not in the gut wrenching way that the adults do, but he knows that it gets him his own bed in the hospital, his own television and playstation and his own nurses. Alex wonders if this is the beginning of some sort of life long obsession with nurses (check back in with us in 21 years to find out).
Aidan is just delighted to be home. He’s zooming about it top form. His legs still get the better of him most days, but there is no sign of a temperature and his hair has started to get dark again, he has a dark halo effect thing happening. His eating is great and he says that tonight’s noodles are delicious!

16th May 2006
Had a brutally honest appointment with Dr Smee the radiation oncologist today. A large bear of a man he has twinkly eyes and tickled Aidan (despite a severe case of Ghengis meets Captain Cranky on Aidan’s part) and got smiles and laughs for his efforts. Like chemotherapy there is a smorgasboard of short, medium and long term effects from radiation therapy. It is a depressing conversation to have and the choices pretty much boil down to the miserable realisation that Aidan’s treatment includes what in normal circumstances would be considered to be a lethal dose of radiation, it’s the price we pay to clean out his bone marrow. Christy’s bone marrow cells are a rescue from death. But hey no pressure!
Anyway Aidan leaped about while Alex had a bit of a weep and got a bear hug from Dr Smee, then she had to tear Aidan away from the waiting room Nintendo, with promises that we will return (!) its all about priorities you see. There are the health relates ones and the game playing ones..,
Then it was back home to rest Ghengis’ weary legs - he ran about the Ward on our way back to the car, ran into a Sydney Swan or two, attempted to drag a social worker and two nurses upstairs to Captain Starlight’s studio, and then resigned himself to playing X-Box at home. By the time we were leaving he couldn’t walk. Alex can tell when he’s not faking it, his ankles buckle under him and he can’t get up.
Aidan ate like a small horse at dinner, selected vegetables he had never tried before, capsicum and eggplant, and was putting a combination of vegetables together with each mouthful. Delicious! He said several times. Go figure. It was a much as Alex could do to not fall off her chair.
Of course Christy was having none of it. He stuck exclusively to his sausages.


17th May 2006
Clinic today … for both of them. To understand the stress of the day you have to understand clinic. It is basically an exercise in organised chaos. It’s the time of the week that some exceptionally talented yet extremely busy Doctors check in with all their patients who are at that time discharged from the ward. Because it’s the check in time, it’s also the pre-coralling time for any surgical procedures that are needed to get precise test results. Like for example lumbar punctures and bone marrow aspirates.
So imagine if you will parents turning up with kids of all ages, most of them really really sick or recovering from being really really sick, piles of “buff files” (so named I think because they are the file equivalent of a condom full of walnuts), being sorted from piles near the phones to piles leaning against the wall, nurses weeding their way through the crowds to weigh and measure the kids, with mothers coming and going accordingly, volunteers helping tame the kiddies with drawings to colour in, more nurses calling some kids to have bloods taken or lines flushed, parents chatting to one another about how their kids are going and where they are up to in their treatment, the broken car-racing arcade game in the corner providing a noisy repetitive distraction for the kids (well at least until they work out its broken) and administrative staff either on the phone or taking medicare details as you check in. (yes I realise I have just set a world record for an eleven line sentence) Now this is organised chaos so there are rules. The first being that you absolutely must have, before you leave the ward every time an appointment for clinic. There are signs up in the ward everywhere, it’s the ward equivalent of Optus advertising, its everywhere. But the paradox of the clinic appointment is that despite having an appointment, it doesn’t actually mean anything. You get seen when you get seen. It’s not actually intended to be this way, it’s just how it works out, and there is less stress involved for everyone when you get with the program and give up on overworked medical staff being punctual.
The second rule is that what you understood to be the plan for your child for the day, is not what is in the computer and therefore has to be sorted out. No matter how well organised you are about getting all your little medical ducks in a row, something always happens and by the time you are in clinic there is always something that needs resolution.
Rule three is that despite the fact that they are the ones with the three medical degrees and the buff file, you’ll get asked about the drugs doses that your child is on. So swat up on those drug names you’ll be needing them.
Now remember what I said about the pre-coralling time for surgical procedures? Well cast you mind back to when you last had one. Remember they are usually done under anaesthetic? Yes? And in order to ensure that there is no nasty vomiting occurring while you are under, the general rule is that you have to fast before hand. Okay with me? So you are in this room with all this chaos going on around you. And heaps of kids and parents around you are starving. (Kids are fasting and parents can’t bear to eat in front of their fasting offspring) So the level of grumpy in the room is significant so when boredom sets in, it can be a difficult place to be.
In fact it’s actually a minor miracle that anything brilliant occurs in clinic at all.
So today Aidan and Christy were in clinic together. Aidan for the usual check-up, bloods, bone marrow aspirate, lumbar puncture and intratheical chemotherapy. Ho normal that all sounds. Christy for check up number one and bloods (for checking for viruses etc), check up number two tomorrow.
So there was the usual phaffing about, and because there was no great rush from Alex’s point of view we got through it all in pretty good time. (3 hours). Aidan and Alex get gorgeous hugs from Christy and Nonna as they head for home, and Aidan and Alex head upstairs to C2North (in C2South) to await the call to surgery.
Ghengis mode is in full swing but happily we are first on the list and are called down first at 12noon. Aidan gets really miserable when he realises where we are going. He clutches his chest and starts to cling to Alex saying that he doesn’t want to go and that the anaesthetic hurts him. By the time we are in the pre-theatre corral he is needing to be held tightly in order to (a) settle him down and (b) stop him running away. Brilliant thinks Alex. Anyway in theatre Alex ends up having to restrain him so that Dr Sean is able to hook him up and get him to sleep super quickly. Poor little lambsie he was so miserable, he kept urging Alex to take him back and that he didn’t like it. It would break your heart.
Once he was under Alex dashes out for whiskey. Finds none and settles for coffee. Damm she thinks, must write letter to someone suggesting they put a bar in. experience tells Alex that she has 25 minutes until Aidan will be in paediatric recovery. This coffee (like so many others these days) is on the clock.
Back to the waiting room in time to be called to Aidan’s side. He is fast asleep and likely to be so for another 15 minutes. Alex gets talking to her assigned nurse who is sister to a childhood cancer survivor. We have a great chat about what its like to be the sister to someone who has cancer. She tells me that it influenced her decision to make nursing her career. She also tells me that when her sister was undergoing BMA’s and LP’s that they used to do it with a local anaesthetic. Eeek, thinks Alex I wonder how they got the littilies to lie still?
Dr Sean comes by to say that it all went well and that Aidan will probably sleep for at least another 15 minutes. At which precise point Aidan jumps up, immediately awake and realising his lower back pain, starts crying for Alex. Surprised us all, especially Dr Sean. He apologises and leaves. Clever man.
Aidan took a little while to settle down, but it was generally a good awakening. We were back to the ward in about an hour (which is good). Aidan wasn’t interested in eating very much, that is until he vomited. Then he ate a cheese sandwich and some party food from a little girl who was celebrating her fourth birthday on the ward.
Then it was in the car and battling traffic to get home for a roast dinner whose smell welcomed us from the moment we walked in our door.

18th – 21st May 2006
These days have been work days for Alex and home days for the boys. They are having a terrific time together playing really well – lets face it it’s not like they have seen each other a great deal over the past few months. So life is good. Aidan’s hair has started to grow back already (he’ll probably loose it again) and Alex commented to Nonna this afternoon that even his eyelashes are making a recovery. Oh, and he has been eating like a horse. We have spent a lot of time preparing for hospital, cleaning and tidying a house and sorting through the many loverly gifts that both boys have received. Alex has had to add bookcases to their rooms in order to accommodate them. As this update goes to air, Christy is running about with a robot having conversations with Aidan’s spiderman who is attempting to avoid being burnt in a volcano.

22nd May to 27th May 2006
While this week has been as loverly as the last, Christy is now quarantined and at home, so the play levels have gone up a few joyous notches. The two of them are having the best time hooning about their new rooms, making cubby houses and pulling out all their new toys over and over again. Aidan is pretty good most of the time but he pushes himself really hard. Often innocent trips down to the park for a swing end up with him holding his ankles when he gets home, a sure sign that they are aching. And he is sleeping for much longer, but when he wakes it’s with a great big laugh, he’s right into each day. It’s been fabulous to see.
For the adults the stress levels have been gradually creeping up, knowing that the hardest part if yet to come, and that its going to be over a month before we get back to this kind of life again. One of the challenges of this illness has been the counter-intuitive nature of the treatment – the idea that you have to get sicker in order to get better. When I watch Aidan dashing about screaming and laughing and teasing his brother and the dog, it does my head in to know that he is going to have to get through being deathly ill again. Again. It just does my head in.
And then there is the Christy angle. When you get Christy talking about his “special present for Aidan”, he knows that he’s going to get to come to hospital, which he is quite delighted about. And he knows he’s going to have an injection and a big sleep, which of course he completely doesn’t understand. But he’s so keen and quite gorgeous about it all. Of course he also enjoys lording over Aidan a bit. Aidan’s present is this “bone marrow” and Christy’s present (from Aidan) is Star Wars for the Game boy. Believe me when you are a four, Star Wars wins every time. Aidan has however been beautifully appreciative of “Chris-of-fer” and his present. There has been lots of hugging and kissing.
So there were a few teary moments amongst the adults as we packed and waited for Admission Day.

28th May 2006 Admission Day – Day Minus 5
Nonna and Christy helped Aidan and Alex settle into Bed 17, C2West ward. Investigating everything, opening every drawer and wanting to switch on all the equipment in our little room. They settled on the bed and played Game boy together and read books while Alex and Nonna unpacked and fetched coffee respectively. There was a definite feeling of farewell to the morning, certainly from where Alex stood. While Alex had explained repeatedly to both the lads, that they wont be able to touch each other until Aidan is able to come home, it probably hasn’t sunk in. Of course they would look at her during these terribly serious conversations and move smoothly onto the next topic of conversation. Today they seem to understand a little more and when the time came for a hug, they both obliged, grabbed one another in that way that threatens to descended into a wrestle.
Christy practised with the intercom phone and the boys made faces at each other and waved goodbye. Nonna teared up and Alex bit the inside of her mouth repeatedly.
Aidan was hooked up to fluids pretty quickly Christy left and the chemotherapy was going on by the time Auntie Kekkie arrived. More coffee was consumed by the women while the little fella got into his Game boy.
The day was fairly calm, the chemo went in well and Aidan ate a good lunch and dinner despite it. Unfortunately one of the drugs used to deal with preventing liver failure, requires some fairly volumous and regular wee-ing. Aidan managed to urinate like a trooper, he had soiled four lots of jammies and bed sheets etc by the morning. (this detail will of course create considerable embarrassment for the little lovie in the future and is inserted in order to demonstrate the type of evening Alex had. A perverse revenge tactic perhaps.)
Aidan was delighted to cross one day off his calendar before going to bed.

29th May 2006 – Day Minus 4
So one interrupted nights sleep later we are one day closer to transplant. There is a bit of a routine when you are in protective isolation. He has to wash his mouth four times a day, bath once (he likes the shower, the hand held shower nozzle tickles so there is lots of happy screaming involved), and then the floor has to be mopped daily and all the hard surfaces wiped down with disinfectant at least once per day. So there are advantages to it being such a small room thinks Alex.
The Doctors crowd into the room at around 8am, and Aidan chatters away with them all, lurching between hearty conversation and showing off his tubes and being shy and having to pull his jammy top over his head. Dr Tracey is pleased with how he is going and despite his neutrophil count being lower than expected there is no reason to not continue with the conditioning therapy.
So there is lots of Play station game playing, thanks to a generous friend who gave Aidan a box of games, and a generous cousin who bought him a Play station, he now has more games than he can deal with so he spends many hours playing each game for about 20 minutes before moving to the next game.
Today’s medical routine is the same as yesterday. More drugs to make him wee, the hourly changes start at 3pm and will continue until 1.30am. Weeee! (excuse the pun) I can’t wait.
Overall he’s still in great spirits, a little cranky from time to time, now that the chemotherapy is affecting him, and he’s fighting nausea a lot to today. So Alex has only been able to get him to eat biscuits. Thankfully his TPN (a.k.a. fat juice) goes up at 5pm tonight so he shouldn’t lose too much weight over the next few weeks.
Nonna visits and attempts to lure Aidan away from Play station. Fat chance, he cannot be lured. Play station continued well into the evening. Dressing change, bit of leaping about then sleeping.

30th May 2006 - Day Minus Three
It’s been a “rest” day. Which loosely translated means that Aidan hasn’t had any chemotherapy today. The smorgasboard of support drugs continues, anti-fungals, anti-biotics and anti-emitics all to protect Aidan’s system against a variety of potentially threatening infections.
Today we have played a few puzzle games, played Playstation (you guessed right?) and pulled faces at Christy when he came to visit at the window. Christy was very disappointed to not be allowed in the room, mostly because it contained a Playstation. He cheered up when reminded that he was getting StarWars Gameboy after two more sleeps when it was his turn to come into hospital. Alex and Christy escaped to the play room where Christy baked Alex a delicious lunch of plastic banana and brocolli (hmmmm!) and then read her a story book, allegedly about a witch and her broomstick, but actually as Christy would have it, about a lady going shopping.
Back at Isolation Room 17, both boys pulled faces and raspberries at one another and laughed and giggled and then blew kisses when it was time to go. Aidan said afterwards “Poor Chris-off-fer, no play Playstation” Which kinda sums up the afternoons expectations and disappointments.
Auntie Kekkie visited us again later for a Thai dinner (delivered to the ward and very yummy – we were lucky to have saved it just in time from the hungry clutches of the nursing staff..,) There were bedtime stories and more pulling faces as Kekkie left at sleeptime (fat chance).
Aidan crossed off another day on his calendar and told Alex “four days to big, big, big, better mum”.
Four days indeed.

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!