| November 06
| Oct + November
| December 07
| Feb 08
| March 08
Eli has brought with him the most beautiful reminder that in spite of the
things that life throws at us sometimes and the trials and pain that it can bring,
human life and love remain the most beautiful and magical things in this world....
Indeed, they are the purpose of life itself.
Nicky (Lake District, England)
Kahlilla slept well however she awoke with some
pain which quickly escalated to being just awful. Her tummy and back were very
sore and her arms and legs were itchy and stinging. It was driving her crazy.
We stood by helpless as the morphine went to work on Lill's little overworked
pain receptors. Even a back rub was annoying to her sensitive skin.
Lill went on to have a pretty good day, albeit somewhat subdued with pre emptive
morphine and intermittent pains. This is also the 3rd day of quite a severe runny bum,
which must be adding to her general malaise.
Malaise did not stop Lill enjoying this rainbow jigsaw with Dennis
It was a rough night for Kahlilla, whose back
started to become sore once again early this morning.
Lill went on to have a subdued day with intermittent pain that was managed
This evening was spent with Megan and Alf and the girls had such a great time
with their good friends. Lill was feeling better and slept without any pain relief
Yesterday's blood test showed a healthy stock of
white and red blood cells, but her platelets were low once again.
The doctors believe the platelet numbers will now be on the rise, so Kahlilla
was spared a trip to town for a transfusion.
Kahlilla and Alf creating
So Kahlilla Carpe'ed the old Diem and enjoyed another giggly, happy day.
The highlight was a huge walk along the beach with Megan and Alf.
Kahlilla and Alf's creation
Just when we thought Kahlilla was feeling pretty good,
she gives us a day like today.
Lill remained in her blissful slumber until late morning. We went for fingerprick
blood test which turned out to be a needle in the arm
blood test. Lill screamed and screamed but she returned to smiles within seconds of the
There was a session at the pool where Lilly giggled and played and swam ... and
swam and swam.
There was dinner at the pub where she ate and ate, then ran around with Indi and
the other kids. She got into a pub brawl, suffering only a minor kick to the nose. The
tears once again drying quickly.
Back at home in the evening, something happened.....
Kahlilla became incredibly affectionate and cuddly,but not clingy. She was smiling so
broadly that she had trouble speaking clearly. She was all wide eyed and dreamy ... simply
delerious with happiness.
Had she not been strictly supervised, I would have suspected that one of her 5 year old
friends had slipped something into her water at the pub.
We had the most gorgeous evening with our kiddo. When asked, "Why are you so
beautiful and playful tonight?"
Kahlilla replied "I don't know... I just feel loveful"
Another happy day spent with family and friends.
Kahlilla and Charli
Crazy, happy girl
A peaceful, pain free and morphine free night
for our Lilly, followed by a fun day with her Aunt Georgia and cousing Charli.
We received an ace present in the post today from Sophie. It was Kahlilla, Indigo and Eli's
Chinese names written in their favourite colours .. OK OK ... so maybe we took a guess
with Eli's colours.
Kahlilla's Chinese name means "Blissful Child"
We realise this is Lill's site, but here is one of out beautiful little boy anyway
Kahlilla slept well last night. Her tummy was starting to become sore in the evening, so we
gave her a morphine dose just in case the pain was due to get severe.
We were once again woken by a smiling princess ... what a sensational dose of deju vu.
Thanks for your calming wisdom Cambridge Clive.
Today was awesome with a huge beach walk with Megan and Alf and Indi, a huge play on the
trampoline with Indi, and a huge dinner at Nanny and Pop's.
What an awesome, huge, painless day.
We were awoken this morning by a happy, smiling and
very much pain free girl. 12 hours after a morphine dose that lasts up to 6 hours.
This is what we were hoping for but not expecting.
How does this thing cause acute pain one day and none the next?
Kahlilla does not worry over such questions, therefore she proceeded to have
a brilliant day, dragging us all along with her.
"Carpe Diem" indeed.
The back pain started in the early evening and by 8pm the
first dose of morphine was doing little to stem this sudden, horrible pain. Our
poor girl was screaming in absolute agony for 20 minutes until the second morphine
dose sent her her into a peaceful sleep.
This is so not what we were expecting or hoping for. Bracing now for a rough night...
Day 5 without morphine was a crazy one. Yesterday's
blood test revealed a severe lack of platelets and less than healthy red cell
numbers, so today was transfusion day.
Waking Kahlilla early in the morning was very difficult.
How could we possibly wake our glowing sleeping beauty?.
The transfusions took all day, so luckily Lill had plenty to keep her
There were computer games.
Kahlilla played with her special friend, Micka from Challenge.
Merridy ensured that plenty of yummy food was available.
After 6 patient hours, it was all over and we were soon sitting in peak hour going nowhere
fast. Many hours later, we arrived home. Kahlilla was exhausted but glad to be home
with her loving family, cuddly kittens and roaring fire.
Today is Kahlilla's 3rd day of better health, requiring
neither morphine nor paracetemol. She is almost back to her usual, happy and
energetic self, lapsing only into brief moments of tiredness and minor tummy aches.
The piano playing, watermelon eating smiley girl.
A better day for our kiddo, who woke this morning with
a sore tummy that was addressed with Panadol rather than morphine. This is
a great sign except that the paracetemol can mask fevers. Lill's white blood cells
should be fairly depleted at the moment, so we are on the lookout for fevers.
Awesome tower from the toothless smiley kid.
Kahlilla slept well until 5am when she awoke in intense pain and
very angry. The morphine administered against her will made her less furious than the
night before because it was mixed with sweet apple juice and once again she was
sleeping peacefully within 20 minutes.
The exact same thing happened last night ... at the same time. Last week, Kahlilla was staying
still in order to minimise pain and now, the pain comes when she is sleeping.
Once again, Kahlilla had a morphine free and pain free afternoon, spent mainly with
her good friends Megan and Alf.
In the evening, Klilla used some glow sticks to spell
out her name on Mum's bed.
Kahlilla slept well until 5am when she awoke in intense pain and
very angry. The morphine administered against her will made her absolutely furious but within
20 minutes, she was once again sleeping peacefully.
Lill woke at midday and spent a happy pain free day with her Nanny (without the need for
Every girl in hospital needs her nails done.
We have just returned home after a long day of blood and
platelet transfusions. Kahlilla went 24 hours without the need for morphine which is just
great, indicating that the tumour is shrinking a little. The plan is to try more chemo in
2 weeks time.
Making the most of the time in hospital, Kahlilla sharpens her tic tac toe skills.
Back at Granny Franny's house, Lill played with her cousins, Maddy and Charlotte,
running about the house, making the most of her new found energy due to the abundance
red blood cells. Ironically, Eli is suffering from too may red blood cells. Now
if we connected the 2 kids blood vessels, they should average out just about right
A much happier kiddo.
We journeyed to Melbourne, dropping Mum and Eli off at the hosptal
for newborns, then on to Kahlilla's hospital. Kahlilla ran into her doctor's office, climbed the steps and jumped up
onto his examination table. The doctor was pleasantly surprised, especially on hearing that Lill
had had only one dose of morphine in the past 12 hours, compared to 3 during the
A blood test showed Lill to be deficient in platelets and red blood cells and the transfusions
were organised for tomorrow.
Mum and Eli caught up with us later in the day, informing us that Eli's billiruben levels have
decreased since his last blood test. Decreasing without the aid of phototherapy is a good
sign because it means that Eli's liver is working properly.
We battled the traffic and spent a lovely evening with Granny Franny and Grandad Terry.
It has been a mixed few days for Kahlilla. Her pain seems to be a
little less each day and she is certainly requiring less morphine each day.
Happy sisters on the merry go round
(The not so merry go round for Col with the camera - barf).
She has however been very angry and aggressive in between moments of her calm and
gentle self. The neuroblastoma affects adrenaline regulation, so perhaps the tumour is the reason.
Perhaps she is just so over it.
Aunt Georgia and Charli came to visit and there was much rejoicing on the trampoline.
Kahlilla is having bloody noses which indicates that her platelets are low, so she may have a transfusion tomorrow
during her doctor's visit. Eli also has a doctor's visit to check his jaundice.
His billiruben levels are increasing again, so let's hope he is OK.
Loving brother and sister.
Today is the day to acknowledge an incredible lady.
Nell, you are the kindest, most loving mother I have ever met.
Watching you over the past few years with your love for your children has been truly amazing.
The joy I have experienced these past few years outweighs the sorrows a million times over
Thanks for sharing these times with me.... Col xx
Kahlilla had a huge morphine free sleep for 11 hours, then had a pretty good day with
slight pain here and there. Today was better then yesterday and hopefully not as
good as tomorrow little girl.
Shadow puppets in Mum's room
Some reiteration is required in today's diary.
There is never a dull moment in our lives!!!
Colin and Kahlilla had a good night's sleep but they were missing Mum, Indi and Eli!
Mum took our little man to the local hospital for an opinion on his yellowness, and before they knew
what was going on, they were in an ambulance headed for a specialist neo natal hospital in
Melbourne. It seems that Eli's billiruben levels were extremely high, indicating several possibilities
including liver problems.
So, overnight, Mum looked after Eli, Col looked after Lill and Nanny looked after Indi, which was OK except
we would have preferred to be in the same house, all looking after each other.
Kahlilla slept well, not minding being woken once in a while for some pre emptive morphine. During
one such awakening, Kahlilla became wide awake, so we played with the glow sticks for a while.
Lill joined up heaps of glow sticks and made a huge pair of sunglasses
Lill then wanted to be like a butterfly and we reckon she did a superb job of it
Kahlilla had a good day, with very little pain in between the morphine. She slept a lot, but
when she was awake she was quite bright, trying to make the most of the day.
Poppy came and took Lill away for the afternoon and they had a great time at the playground
and then later indoors playing twister with Nanny and Aunt Jess.
Mum called in the evening to say that Eli is Ok and should be coming home tomorrow (Mother's Day)
His kidney and liver function are just fine and it seems that 2 days under hospital lamps has done
Lill asked for monster to be drawn on her back to frighten away the black balloons.
Colin, being a crap drawer, could only manage these guys - Oggie and Zog... guarding
a kidney each
Kahlilla gritted her teeth and made it through a night of
acute back pain with the morphine barely keeping pace.
Her kind, mighty character forever bursting through it all, as she came out with these gems
throughout the night...
"Colin, will you please warm up my heat bag"
"Thanks for rubbing my back Mum "
By 3am, Kahlilla was finally in a fitful sleep, yet when Eli awoke at 4am with a thundering
squawk, Kahlilla opened her eyes whispering,
"Colin, I think Eli is hungry"
Comforting her kittens
Today has been much of the same, with Kahlilla resting on her Princess Chair, trying to
minimise any pain.
Eli on the other extreme is cruising along just nicely... albeit a little too orange.
What a crappy couple of days for Kahlilla. Her pain was almost
constant, yet she endured it well. Stoically, as always.
I was trying to take a shot of our sad princess, but she burst into life when
Merridy appeared with an ace neclace and Piston Cup for Lilly
We brought her home this evening armed with various pain killers including 2 forms
of morphine. The doctors said that Kahlilla needs her family more than she needs the
hospital at this stage.
She was so happy to be home where the kittens were waiting. Also waiting for Lill was a
princess' armchair by the fire and a servant's whistle, with Indigo as the servant.
The chemo should have shrunk the tumour a little by now, yet Kahlilla is still suffering various
degrees of pain, so we are not sure what to think. Let's see what tomorrow brings.
Kahlilla lies in hospital tonight, trying to keep still in order to minimise her pain,
gratefully accepting the morphine drip.
The oncologist scanned her today only to find that the tumour in her back has grown and is now
pushing on her kidneys, causing the pain.
Her chemo trial has been halted, in favour of Melphalan, a much stronger chemo that should address the tumour
very quickly and reduce the threat to Kahlilla's kidneys in the short term.
This chemo is likely to hit her pretty hard and Kahlilla's immune system may drop away for a week or so.
Her hair may also start to fall out.
Hopefully her pain will be under control tomorrow so she can return home for some kitten time.
Stay strong good people, now is not the time to give up on Kahlilla Blyss.
Today was a quiet,sad and painful day for Kahlilla. Her back pain is worsening
and we are giving her everything we have from the arsenal of pain medications.
It is such a crazy home with Eli gurgling and farting his way through another carefree day, whilst
his sister was battling. It is rotten to see her wincing in pain as she tries to go about her
Eli in the bath and in heaven
The worst part is when the pain meds are given, the heated wheat bag is in place, you are rubbing her back
and she is still weeping and groaning. The helplessness is just a rotten feeling, although not nearly
as rotten as the acute spasms Lill is feeling in her poor little body.
These rotten feelings are almost fully offset by the joy that surges in our hearts when Kahlilla
has a pain free moment, during which she bursts into life.
Using Dennis for a guitar
Using Dennis for drumsticks
Kahlilla and her amazing Mum
(She has only been out of hospital for 5 days!!)
Kahlilla starts her second chemo cycle tomorrow.
Please wish her well.
Wish for the chemo to find all tumour cells and give them a jolly good seeing to.
Wish also for Kahlilla's body to withsatnd the chemo and keep smiling through the following 5 days.
Life is still hectic, but we would not swap it for anything.
This is the result of letting Kahlilla loose with a camera - scary
Indigo giving her brother some loving
Eli getting his hair washed by a princess
Poor MellowMan being tied up at work by a princess
Kahlilla spent a couple of half days at school and her
friends were so happy to see her again.
Kahlilla came to visit Colin at work and had heaps of fun with Mellman and Leesa
Kahlilla went to a kids party
Kahlilla had visits from so many friends who wanted to
say "Hello" to Eli
Kahlilla's back started hurting tonight, and it's not a jobbie pain. More chemo starts again in 2 days time.
All is good with us, however Eli gives us little time for updates.