| January 07
Just beautiful times with our beautiful girls. These are the days...
Great kids and good friends also.
Kahlilla is trying out her new bathers for our big holiday next week
Sharing popcorn with the chooks in the garden
Kahlilla's strict new vegetarian diet
Indigo and Kahlilla made masks... Indi's one said "I love you" ...
Lill's was just scary
Lill wearing Indi's mask and Col wearing Lill's
Lilly and her Collie who is doing his part for Movember ......
To find out more....Click here ===> Movember
A rough start to the week for our little jobbie dodger. Things came to a head on Wednesday when Lill's
pain was just unbearable, yet she was so scared to have a squeeze. We reluctantly gave her laxatives and a supository and after a few
hours ... out it all came and the pain disappeared.
After the road was clear, Lill switched to a fruity diet and the next day she was easing them out and the fear soon transformed into
the kind of joy that only a good jobbie can bring.
Today was the Camp Quality christmas party in Melbourne. It was so much fun and well organised.
Please visit their web site by clicking here ==> Camp Quality
Mum giving kahlilla a tickly kiss
Lill met quite a few of her hospital friends and it was such good fun, playing in the shade in the hot weather.
Lilly and Bronte playing around the pole. They were chasing each other and I couldn't get them
in the one shot, so this poor cut and paste effort makes Bronte look like a giant. Such beautiful hair Miss Bronte.
Who is that man in a red and white suit??
Santa arrived in a helicopter and it was all very thrilling. Lill was so excited despite feeling a little off toward the end of the day.
Indi and Lill with Santa
An up and down week for Kahlilla. Her tummy is still sore and she has developed jobbiephobia, refusing to
take a seat and push. This of course just makes things worse and her tummy pains were unbearable at times. Poor little
suffering kid. When will she leave all of this behind (Hopefully when she stops leaving it in her behind)... please allow me this feeble
attempt at humour.
On top of this, we are left wondering if these tummy pains are new bowel blockages. Overall, Lill is generally smiling and playful, then very
brave and tough when the tummy pains come. She has managed to have some really good times this week.
Lill playing with Mac Dougall and Ollie
Happy times at musical munchkins
A nice day for Kahlilla. Happy to be back at home.
Love that ice cream... Love that smile
Check out my new incision
Another rough night for the girls with the poor boy in the next bed still in a lot of pain. There was a huge consolation,
however when the doctors said that Kahlilla can go home today, thanks to her healthy appetite, big farts and huge jobbie from
yesterday. Mum made Lill a yummy boiled egg which she scoffed as Mum packed up all the gear.
Lill's last supper
There was time for a play in the Starlight Room and Lill rode around in her pink car chasing Captain Starlight, hardly worrying about her wobbly
legs. Reluctantly Kahlilla said goodbye and her and Mum headed for home. The Starlight Room was a nice way to finish this stint in hospital.
Kahlilla is due back in 2 weeks for a check up of her cut and stitches.
A rough night's sleep. Lill is in the neuro ward and a poor little boy was put in the bed beside her at about 2am.
He had just had emergency brain surgery and he was in so much pain, that he screamed and screamed for hours. Kahlilla called out to him "Will
you please be quiet" Such a polite kid... who likes her sleep.
The doctors came to visit later in the morning and Kahlilla had her biscuits in her hand. "Can I eat these today please?" Her smile burst
into life when the doctor said "yes". Lill is allowed bread, fruit, pasta, soup, vegies... and of course, biscuits. Kahlilla was thrilled and she ate and ate
and ate. After brekky, Lill did her bubble blowing therapy and the nurses removed the drip from her wrist which was a little traumatic but Lill was
very happy when it was finally out and in the bin.
Lill and her pink bubbles
After lunch, Lill needed to do a jobbie, so we went into the bathroom and took a seat. I think she copped a taste of child birth as she squeezed
and screamed and cried. After about 10 minutes there were 2 big jobbies in the pot. The first for 2 weeks!!!
After a little rest, we went for a walk... well, Kahlilla walked 20 steps to her wheel chair, and we escaped from the ward and down to the
adventure playground outside. It was warm and sunny and Lilly walked to the sand pit on her wobbly legs and made a sand castle, which she
promptly crushed. When we went back into the hospital we were met by Nanny and Pop who had dropped in for a surprise visit. Lill was so
happy to see them and they played for ages while Colin went to the market in search of prune juice... must help the next jobbie to cause
less tears... and less tears also.
"Put another $2 in the toy car please Nanny"
Mum rolled up in the evening just as an electrical storm hit and we turned off the lights and watched the lightening and listened for the thunder.
It was very exciting and kahlilla cuddled up with her Mum for ages looking out the window for the next flash of lightening.
The big news today was that the doctors said that kahlilla can eat soft foods like ice cream, yoghurt and milky drinks.
Lill was most impressed as she scoffed some real food for the first time in almost 2 weeks.
Col and Lill spent today together and it was a lot of fun. Kahlilla walked a few steps to her wheel chair and
they went to the play room for a little while, where Lill stood up against the amusement wall and amused herself with the amusements.
She announced the need for a wee wee and before Colin rushed in with a potty, Lill had let go all over the floor and she was so upset.
The tummy surgery has weakened her bladder control and she can't hold it like she used to.
The doctors say that the wee wee holding problem is due to Kahlilla avoiding the likelihood of pain by not tensing her tummy to hold the wee
wee. This is fair enough given that all her tummy muscles were cut open a few days ago. The doctors assure us that there was no damage
done to Lill's bladder.
A very nice day today for Kahlilla and her Mum. Lill is sitting up and smiling more. They played lots of games and
watched a few cool movies. Still no food or drink allowed for Lill.... only sips of water and she is doing so well to stay cheery
despite her hunger.
Lill and Poppy had a great day. Lill was a little sore and reluctant to move about too much.
It is hard to smile with a belly full of stitches
She asked Poppy "Are my biscuits still in the cupboard?" Poppy cheered when Lill let rip with a little girly fart - a very clear sign of bowels
Mum went in to spend tonight with Kahlilla and Mum says that Lill is starting to smile again.
Kahlilla was in and out of sleep for most of the day and her morphine was gradually reduced to nothing. When she did wake, she cuddled Mum and felt better. She noticed her nose tube had been removed and she felt better still. Poppy went in to look after Lill tonight and Lill was happy to see him.
Tired and sore - Note the purple edging on Lill's blankie
Kahlilla slept well but woke up with a sore tummy and back. The surgeons booked her in for a CT Scan, mainly to ensure
that these problems are not being caused by a new tumour. If there was no tumour, they would take her straight to theatre to open her tummy
and have a look at her bowel. Co ordination of radiographers, anaesthetists, nurses and surgeons would take some time so we waited.
Lill was starving but she kept busy playing games on the computer with her bandaged hands.
Lill is getting good at this computer business.
Late in the afternoon, there was no word and Kahlilla had had enough. She yelled and yelled at everybody, ordering all of us out, demanding food
and water. She drifted of to sleep all tired and hungry.
The word came at about 9pm and we told Lill it was time for her photo. She knew something was going on when we wheeled the entire bed into
the lift. Smart girl. They gave Kahlilla a sedative and she instantly smiled and started stroking Colin's face making ooh ahhh noises. The anaesthetic went in and Lill was away. 30 minutes later, we were told that there was no tumour and we signed the surgery consent forms.
We had a tense wait, but only a short wait because within the hour, it was all over. The surgeons had found 4 adhesions and they were all easliy
corrected. They were very confident that this was the cause of all the recent problems. We wheeled Lill back to her room and she slept soundly
with a steady drip of morphine flowing into her. The doctors have ordered no food for another 3-4 days!!!
Kahlilla woke at 3am asking if she could eat yet. The poor girl is so hungry. When the surgeons visited, Lilly asked if she could eat yet, to which they replied "if there is no fluid and no vomits when we return in 4 hours, you can have some water, then some jelly" Kahlilla's mouth was watering.
The day was a long one brightened by a visit from her Nanny and Poppy, but Lill was sad and hungry and she asked everyone who entered the
room if she could eat! Disaster struck when the tea lady popped in with the snacks trolley and asked Lill if she wanted a biscuit. The smile was as
huge as the cry of disappointment when the biscuits were taken away and put in the cupboard - for later.
In the evening, Kahlilla's tummy pains started again. We rubbed her tummy for ages and she would yelp if you stopped the rubbing. Not a good sign.
Her tummy gurgled a lot and the pain eventually subsided and she fell asleep.
Every hour, brown/green goop was pulled out of Lill's tummy via her new nose tube. Nothing, however, came out during the
5am de gooping. This was a good sign and Lill woke up happy.
There is that magical smile
Lill is receiving 100ml per hour which is creating a lot of wee wee, so we agreed to wear nappies, but only at night and only because we are in hospital.
Kahlilla was quite clear that big girls are not supposed to wear nappies.
We spent the day fending off a gang of eager surgeons. We were hopeful that the decrease in bile, lack of vomits and Lill's happy disposition were signs
that things may have corrected themselves within her bowel. "Oh no" said the surgeons in unison, " We need signs of bowel function like a fart or a poo"
Colin started pulling Lill's finger like crazy.
Lill's hunger was overwhelming and she started to get a little sad. Just then, Megan came to visit which cheered Lill considerably, in fact she was so happy, she did a little fart!!!! What a beautiful thing to emerge from her wee bum. We went and told the surgeons, who thought it was great news but they insisted on sticking another canual into Kahlilla's free hand..." Just in case we need to do surgery"
Lill was terrified once again and the needle had trouble locating the vein and then it had to be wiggled a little and Lill just went crazy, screaming and screaming. Then she relaxed and started her
little chant again... "Gi Di Gi Di Gi Di Gi Di Gi Di Gi Di (BREATH) Gi Di Gi Di Gi Di Gi Di Gi Di Gi Di "
Kahlilla settled down with some of Mum's soothing and we went to the playroom for a play. It was hard to play when you can only just wiggle the
fingers on both hands due to the bandages.
Lil's look of concentration while sporting a fetching off the shoulder version of the hospital gown.
Later in the day we had to go for more X Rays. Lill was weak and insisted riding in a wheel chair
The surgeons promised that Lill could drink tomorrow if the bile stayed down and there were no vomits. On hearing this, Lill went straight to sleep,
eager for tomorrow to come.
Kahlilla released a dark brown, watery, satanic vomit this morning, so we rushed her off to the doctor again. Lill's eyes have sunken into her skull and she looks very ill. He was very concerned and advised a trip into Melbourne to the Children's Hospital for closer investigation into the cause of the vomitting.. Here we go again. We are almost at Kahlilla's one year anniversary of discovering her cancer.
We thought it was just gastro then also. Please wish her luck. On our way off the island, we picked up Kahlilla's refurbished brown blankie. Mum had arranged for purple and pink satin ribbon to be stiched around the edges. Lill likes to rub the silky edges between her fingers... she calls them the flat bits or the cold bits.
We arrived at the emergency department where we immediately jumped the queue and were ushered to Isolation Room No.1.
We have spent 2 nights in this room in the past. The omens were not good. She was given a canula which is an intravenous needle into her wrist, through which she was given fluids. After a couple of hours of monitoring and prodding and inspection of
vomit, our sad little angle was told she had to have a nose tube inserted.
Kahlilla just crumbled. "But I have been eating my food like a good girl" (We have occasionally reminded Kahlilla her over the past few months that
the nose tube may have to go back in if she doesn't eat her food.)
She was so upset and so very scared. We took her to the treatment room and waited and waited for Lill to say that she was ready. Kahlilla refused and refused and after about 10 minutes, we had to hold her arms and her head and force the tube into her nose and down her throat. Kahlilla was totally terrified as she gagged and tried to scream. When it was in and taped down, Lill pressed her nose with her finger, frightened that the tube would pop out. (Go back in Lill's diary to August 25 and read all about it)
Then the most awful thing happened. Kahlilla started this bizarre singing.... just a " lah lah lah " sort of babble as she shook her head from
side to side. She kept this up all the way back to her room, then she started saying "Gi Di Gi Di Gi Di Gi Di Gi Di Gi Di (BREATH) Gi Di Gi Di Gi Di
Gi Di Gi Di Gi Di " holding her nose tube against her nose all the while.
We laid her in her bed and she curled up and rocked back and forth
saying nothing but "Gi Di Gi Di Gi Di Gi Di ... for about 20 minutes. It was as if she had escaped to a happy place, free of the anguish. It was as if we had finally broken her, driving her insane. It was the worst we have felt in a long time, seeing Kahlilla in such desolation and despair. (Compare this to December 7)
On a positive note, Lill's stomach contents (dark green/brown fluid) were sucked out (aspirated) through the nose tube every hour and the vomitting stopped. The plan is to measure the aspiaretd volumes and observe the colour. Bowel adhesions are suspected to be the cause and surgery is normally the solution but occasionally the bond in the adhesions can break and the bowel setttles back into its normal place without the need for a scalpel. Let's hope for that outcome.
At midnight she was whisked away for a tummy X Ray and an ultra sound and she was such a patient girl. Tired and hungry but nice to everyone.
We were admitted at 1.30am and Kahlilla settled into her new bed in a new ward in the renovated children's cancer centre. Very nice indeed with 2 beds per room instead of the usual 4 or 6. So much room and privacy, just what Kahlilla needs right now.
Another day of vomitting. Lill hasn't eaten much over the past few days and she is getting hungry. This should be subsiding by now, so a
trip to the doctor was in order. The doctor was not very concerned given the classic gastro symptoms.
A rotten night for Lill, trying to sleep in between vomits. Many kids on the island have had gastro recently, so there is nothing to worry about.
This will pass in a day or so. Such a pity that she had to miss her musical munchkins. Tonight was also Indigo's big night on stage for her school
musical and Lill had to miss that also.
Kahlilla woke early with chronic constipation and she sat patiently and squeezed for 20 minutes, finally producing a small jobbie and a tear in her eye.
The day worsened as she started vomiting on the hour with worsening tummy pain.