Our beautiful lil'
diary header

November 05   |  December  |  January  |  February  |  March  |  April
May  |  June  |  July  |  August  |  September  |  October  |  November 06
December  |  January  |  February  |  March  |   April  |  May  |  June
July  |  August  |   Sept07  |  Oct + November   |  December 07
Jan 08  |   Feb 08  |   March 08  |   April 08  |   May 08  |   June 08       July 08   |   August 08 >  |   After Kahlilla  |   From Lilla's Poppy

Many of people have been asking how a gift can be sent for Kahlilla.
Please click on the Fundraising link on the left side of this page for an address.... ThankYou *****************************************

August 2

Our sore little girl battled through the night to find peace in sleep amidst our efforts to get her pain under control.

Kahlilla spent the afternoon and evening with her Nan and Pop and had some lovely moments when her pain was not so severe.

Making some cool crafty things with Auntie Jessie

A colouring in book and a loving Grandfather - What more could a little girl need ?

August 1

Kahlilla fell asleep tonight feeling sore and sad. Her back pain is persisting and a new pain in her right shoulder has made itself known.

She has had a tough couple of days at the hospital, with an ultrasound the first day and platelet and red cell transfusions on the second. Her pain has been severe and difficult to keep under control.

Lill raised enough energy to walk to the hospital window to see the amazing sky... she even managed a smile

Kahlilla has been on a slow release morphine pill which is supposed to be strong enough to keep her pain free, but should a breakthrough of pain occur, she receives a quick acting dose of liquid morphine which takes up to 30 minutes to take effect.

These past 2 days has seen 3-4 breakthroughs each day, each with a very painful 30 minute period before the relief would come. Kahlilla's doctor has now doubled the strength of her slow acting pill. This is a huge increase but should now keep Kahlilla pain free.

For curiosity's sake, last week Kahlilla was receiving 50mg per day of morphine. A few days ago, when the pain started again, she was up to 100mg per day and yesterday she received 180mg.

Tomorrow, Kahlilla will receive 120mg over the day, and hopefully this will keep her free from pain.

The doctor believes that the back pain is due to neuroblastoma now in her spine and the sore shoulder is due to neuroblastoma in the upper part of her humerus.

This is of course pretty bad news, because bone cancers are hard to remove and can also cause severe pain.

On a positive note, Kahlilla's white cell count was once again higher than the week before and the ultrasound showed that the primary tumour near her tummy and kidneys has progressed only slightly. This is a good thing because the primary tumour is still not an immediate threat to her kidneys.

There is a chronic bed shortage at Kahlilla's hospital!!

On another positive note, Eli had a giggle fit for at least 5 minutes and what a most magical 5 minutes it was. We were on the way home from the hospital and we had to pull off the freeway to feed Eli. Once he was all full and content, he started smiling, then laughing, then we laughed and he laughed more. His whole body was shaking as he giggled and it was wonderful.

Kahlilla making her brother laugh

July 30

Kahlilla slept well but woke up in pain late in the morning. Once the morhine did its job, Lilly went on to have a quiet day, feeling weary and a little sad. She told mum that she is fed up with the black balloon and she wants it gone.

What are these girls doing to my son whilst I am at work??

Kahlilla suggested we all go to the swimming pool and Colin had such a wonderful surprise when Kahlilla called him at work asking him if he could go too.

Once at the pool however, she found the water too cold and Kahlilla wanted to get out and go home soon after we arrived. There was more pain this evening which took a fair whack of morphine to overcome.

So it was an early night... just as well because Kahlilla is due for a blood test, possible platelet transfusion and an ultrasound tomorrow. We will get a look at how the black balloon is progressing (regressing hopefully)

July 29

A restful night, followed by a nice day with some lovely surprise presents arriving in the post.

These exquisite mobiles were hand made not far from the pyramids .. ooops... Nova Scotia actually (Quite a long way from the pyramids)

A wonderful present from Blackburn
(Colin was born in Queens Park - the hospital that is ... not the park!)

July 28

It has been a nice couple of days for Kahlilla, even though she has been quite weary with back pain starting to hurt and annoy her in the evenings.

Indi made an excellent cubby outdoors and we all sat around a mini camp fire

July 27

A pain free night once again for our little lady and when she did awaken at 1pm, she was raring to go even though she lacked the energy. There was a quiet afternoon with her Nanny and Pop and Indi.

Lill and her Nanny.

July 26

It was a tough night for Kahliila who awoke at 3am suffering from a sore back, the likes of which she has not felt for over a week now. The pain was severe and higher up her spine than last week. A little extra morphine managed to control the pain but there was a rotten 30 minutes or so in the interim.

Lill went on to sleep for most of the day, waking late in the afternoon for some more morphine to combat another wave of pain in her back.

This evening was so wonderful with our Lilly brightening up and with a huge appetite too. It is so good to see her wanting to eat as she is losing a little too much weight. Another bout of back pains just before falling asleep tonight... sad but smiling.

Eli is not experiencing back pains, just a blissful world of boobies, cuddles and bed (and lots of screaming also).

July 25

Today was a beautiful rest day, with plenty of sleep, lots of good food (yummy eggs thanks to our chookies who are back in fine form)

GodMa LooLoo took Lilly to AMAZE 'N THINGS which is always a favourite.
(Hi Geoff..... I changed it already ... Colin)

You can never have too many Kahlillas.

Yummy girl.

Lill insisted on playing the pirate without a head.

Comparing nose pick methods.

July 24

Kahlilla's plans to explore the city with Nan and Pop today were thwarted by transfusions of red cells and platelets.

A second blood test this morning showed that her platelets had decreased a little since yesterday, so it was decided to top them up along with the reds. As a consequence, Kahlilla and her grand grandparents did not leave the hospital until well into the evening, after a long and tiring day that required plenty of love and patience.

It was after 10pm when Lill burst back into her home smothering her Mum with enormous hugs and a big squeeze for Colin. It was lovely to see her full of blood and full of energy and full of love with her eyes sparkling as always.

Happy to be back home with her new cuddly toys, a cherub beanie kid and a pink flying Pegasus.

July 23

Kahlilla's white cell count has rocketed up from 20% to 30%, which is actually an increase of 50% from last week. The doctors also decided that even though her platelets were lowish, they believe they are on the rise, so she did not require a transfusion. This is just an incredible piece of unbelievable news.

Kahlilla is booked in for a blood transfusion tomorrow as her red cells were a little on the low side.

Happy times at the aquarium.

Let's hope she can still salvage some enjoyable moments in between the hospital visits during her big city trip with her Nan and Pop.

July 22

A good day for Lill, free from pain and full of fun.

A special pressie arrived in the post and Kahlilla was thrilled to bits with the wrapping effort.

Lill has been OK of late, albeit a little quick to tire. She has been just lovely and kind and affectionate. Even her short temper is starting to soften a little. She is still on a hefty dose of morphine each day although she has not required a dose increase for almost 2 weeks.

Kahlilla has not had chemo for 7 weeks now, so theoretically, she should be getting much worse, yet she seems to be very stable if not improving. The doctors are sure that the cancer is overtaking her marrow hence the low white cell counts and the weekly transfusions of blood and platelets.

The low white cell count equates to a weak immune system, yet Lill has been in great health since her short hospital in Queensland 6 weeks ago, so her diet and other potions are keeping her healthy and happy even if the cancer is not being reduced.

I believe the cancer is not growing and it is slowly being chipped away because...


Kahlilla is off to hospital tomorrow for a blood test and most probably a platelet transfusion judging by her easily bleeding lips. Here's to hoping for another little jump in white cell numbers.

July 21

Happy Birthday Nellie

We had another party this evening, with MellowMan cooking an awesome curry that was enjoyed by family and friends.

Mum receiving her hemp handbag made by a wonderful weaver in Bangladesh. Hemp also uses a fraction of the water that cotton consumes. What a happy birthday bag .... the handbag that is, not my Nellie.

Uncle Craig spent hours entertaining Kahlilla with his magical puppets.

It was all too much for Lilly who went a little nutty toward the end of the evening.

July 20

More beautiful days. Toaday we were all at Nanny and Pop's for a birthday lunch for Mum and it was just great with Uncle Craig and Uncle Derville and Auntie Nat.

Happy Birthday lovely lady and beautiful Mum.

Lill painted Uncle Craig's face and it turned out to be an extraordinary work of art.

"Lie still or it will turn out wrong".

Just like a Maori warrior.... with puppets

Kahlilla fell asleep tonight with a sore back ... her first back pain in 4 days.

July 18

Another happy and energetic day for our little Squirty. She had a great time at Nanny's making the most wonderful crafty things, then the evening was spent at Mum's drawing and playing with kittens, until we finally persuaded Lill to go to bed about 20 minutes after midnight. She has more energy than me!

It is with great sadness that we hear of the passing of Jane Kashino.
Young Janie battled neuroblastoma for 3 years, yet she squeezed a mighty lifetime into her 6 years on this earth.
Our thoughts and prayers go out to Scott, Colleen, Thomas and Janie's other family and friends.
Thankyou for allowing us to share in the pleasure of Janie. We are richer for the delightful experience of her precious life.

July 17

It is midday and Lilly is still asleep, so there are a few moments to tell you about yesterday.

Lill and her Nanny drove to the city for a blood test which showed very low platelets, acceptable haemoglobin and slighty higher white cells. The platelets are a worry as it proves that Kahlilla is still not producing any, but an elevated white cell count is wonderful news, even though the level is still quite low.

The girls had a few hours to wait while the platelets were ordered from the blood bank, so they went to the Starlight Room, then ordered a yummy lunch which they enjoyed outdoors in the warm sun.

A Lily drink bottle, a nori roll, soy sauce and sunshine make for a happy girl.

Upstairs, Kahlilla gritted her teeth for the insertion of the needle, then fell asleep for most of the transfusion. Nurse Kate kindly unplugged and disconnected Lill once it was all over and soon she was fast asleep in Nanny's car as they zoomed home. It had been a long day.

When Nanny turned the engine off, Kahlilla awoke, sneaked into the house and burst into the living room with a huge lion's roar frightening the heebeejeebees out of her Mum and Dad. We had a few hours of fun and eating and absolute affection with our little girl, then we all collapsed just after midnight.

Here we have the sisters, the fairy outfits, the sunrise, the beach, the love heart, the cat and the cat's bum.... just gorgeous, thanks Caitlyn in Melbourne

July 16

As soon as Kahlilla awoke, she was whisked away by her Nanny to the hospital for a blood test and certain transfusions.

Last week, we went to the local hospital for a blood test, then to Melbourne the next day for transfusions. This week, we are taking one hospital trip out of the equation.

We know that a platelet transfusion is on the cards today because Lill's lips were bleeding this morning and there are little bursts on the tiny blood vessels on Kahlilla's eyelids.

July 15

A little bit more energy from our Lilly today. We all went to Indi and Lill's school to see a puppet show presented by Camp Quality. It was a great show about how kids with cancer miss out on school and when they return, they may be bald or may have lost weight.

In the playground, Lill was so pleased to see her friend, Bronte.

July 14

It has been a wonderful couple of days, a little on the quiet side but wonderful nonetheless.

Georgie and Charli came to help out for a day and Lilly loved seeing them again.

Colin fell ill with a rotten flu, but he took most of Kahlilla's immune support potions and medicines and felt almost perfect after 2 days.

Kahlilla had one slow, weary day but that was about it. Our girl has a white cell count of almost zero, yet she is so healthy. A good immune system is believed by many to be the major weapon against cancer, so we are trusting to hope that as well as keeping her healthy and happy, the barrage of tablets, drinks and homeopathic gear is creating a yukky environment for Kahlilla's tumours and even chipping away at them.


It is so lovely to hear about the shouting of the Mantra across the world from the top of the Sydney Harbour Bridge, to Hertfordshire, from Germany and back to Lancashire, from Bristol to Canberra and back to the valleys of Kent, from Leicester to Ontario then to Nova Scotia and of course every day at Phillip Island.

It is incredible to think that the Mantra is being shouted at the Egyptian pyramids and from similar wonders of the world like to the top of Blackpool Tower.

When Kahlilla's GodMother LooLoo, shouted it from the top of the Sydney Harbour Bridge, the pope's cavalcade drove down the road right underneath them ... so you never really know who might be listening.

Kahlilla received an ionising salt light and she is enthralled by its warm glow.

July 12

There are many outstanding men in Kahlilla's life. There is, however, one guy for whom there is an extra soft spot in Kahlilla's little heart. The one who makes Lilly go all silly and gooey and mushy and smiley, just at the thought of meeting him again. He is the one and only ...


Tyson is a family friend. He is a blonde haired, blue eyed motocross champ who is caring and gentle and so kind to Kahlilla.

The mere thought of this young man brings an enormous smile to Kahlilla's eyes, so Tyson is a great source of motivation for our Lilly.

"Eat your food so you will be strong and healthy for when you next meet Tyson"

"Give us a smile for this photo so we can show Tyson"

Today we were going to visit Tyson up in the hills, and Kahlilla was beside herself when she found out. She had a bath and washed her hair, then she chose an appropriate dress and perfect necklace. After a surprisingly short while, she was ready.

This girl is ready - "BIG" Dress by Fiona Scanlon and Necklace by Bronte and Ella.

As we approached Tyson,s house, Kahlilla became all quiet and nervous. When asked if she was feeling OK, she told us that she just a little shy. Then Kahlilla whispered, "Is it OK if I am scared?"

Oh bless her darling heart. She has anxious little "First Date" nerves.

She bravely wrapped herself around me and buried her head into my shoulder as I carried her into the house. Lill emerged after a few minutes, all gorgeous and coy. Soon she was relaxed and grinning and playing HIDE and SEEK with her Tyson.

I am at a loss. I cannot find words to adequately express the joy feel when I look at this photo.

Every day is a blessing, and our past few weeks especially, have been jam packed with incredible moments, but to see her bursting like this with such happiness and love just takes it all up a notch.

Indi returned home today and she was caught up in the moment also.

We said our good byes then headed to a pyjama party to celebrate old man Fritz's 40th birthday. It was such a great party and the girls had a wonderful time.

The best rendition ever of VIDEO KILLED THE RADIO STAR.

July 11

We hardly saw Rip Van Lilly all day. There were a couple of hours out of bed in the afternoon, however she was very quiet and lethargic, choosing to go to Nan's and have another sleep.

Eli in a gorgeous fluffy hooded reversible number all the way from the land of Grommit.

The decision was made to bring the people to Kahlilla, so we all descended on Poppy's house for an evening of superb food, good wine and great people. In addition to the usual suspects, we also had Aunt Jessica and Great Uncle Geoff in attendance... It was shame that Indi was missing.

Cheezels... the reward for scoffing a huge bowl of fettucene carbonara.

The star of the evening emerged from her slumber at about 8pm and stole the show for the next 4 hours. Kahlilla was sprinting up and down the hall, giggling and laughing.

The Kahlilla Map.

We all had such a wonderful evening. Kahlilla insisted on the reading of all letters and cards recently received. She was especially thrilled with a Kahlilla Map made by Zara. This map guided you through all Kahlilla's qualities and Lill was beaming a huge smile that got bigger as each beautiful trait was read out.

Eli being spoilt by his loving big sister.

In the photo above, Eli can be seen raising a defiant fist, chanting the new mantra...

It is all uphill from here

The meaning of this mantra is that there is a hard climb ahead, but the climb takes Kahlilla up the path to recovery.

IT => refers to the state of Kahlilla's health
IS => confirms our positive intention
ALL => refers to everything concerning health (disease, stress, nutrition, happiness)
UPHILL => hard work but heading forever upwards
FROM => just a necessary preposition
HERE => life from this moment is all that matters

It is to be repeated 6 times with strong emphasis on a different word each time.

IT is all uphill from here
It IS all uphill from here
It is ALL uphill from here
It is all UPHILL from here
It is all uphill FROM here
It is all uphill from HERE

This mantra will be shouted from the top of the Sydney Harbour Bridge by LooLoo GodMother tomorrow.

Please feel free to learn the mantra so it can be shouted all over the world.

July 10

Lill slept through the night in a blyssful slumber after a slightly higher than normal dose of slow release morphine. Eli is not taking morphine yet he slept through also.... what a good boy. Indi may have slept through although we don't know for sure as she is spending a week with her dad.

Kahlilla romping on her Mum.

Kahlilla had an ace day today with a loving few hours with her Mum, followed by an ace afternoon with her Nanny and Poppy and Great Uncle Geoff. There was much drawing of pictures and playing with some new toys and games received recently in the post.

Many thanks to the kind people who have sent Kahlilla a gift and sincerest gratitude also to Laura, Douglas, Jill, Denise, Studio 25, Joy and Youki for greatly appreciated donations recently.

Kahlilla washing her bro.

The evening was also rather ace, starting with a bath with Eli followed by karaoke singing with LooLoo, Auntie Helen, Charlotte and Kristen.

It was such an incredibly happy, loving day for Kahlilla who experienced zero pain throughout. Let's hope the base level of morphine is now raised sufficiently to prevent pain breakthrough. Perhaps today's constant laughter was a contributor.

Kahlilla had an early night, collapsing rather exhausted at 11pm.

July 9

We spent the night in Melbourne with our friend Giggles... (His proper name is Biggles), then headed back to the hospital for Stage 2 of the blood transfusions.

Kahlilla had a pretty good day patiently amusing herself and being amused for the 7 hours. She had a special visitor in the afternoon, a cancer survivor named Sophie. You would have seen Sophie's beautiful artwork from May26, when she drew Kahlilla's name using Chinese characters. Sophie is now trying to grow an extra inch of shin after her few years of treatment of her bone cancer.

Kahlilla and Sophie.

On the way back home, we dropped in on Granny Franny for a cuppa and Kahlilla started to get a little tired and sore and a little morphine was given. The pain did not abate and more morephine was given. 30 minutes later, the pain escalated further and Kahlilla was really feeling it, yelping and crying. The 3rd dose (more more morphine) soon calmed Lill down and she settled into a peaceful sleep.

She slept in the car for the rest of the journey home, where she woke with a smile when Mum met her at the car window, gathered her into her arms and carried her inside where Nanny and LouLou were also waiting. Kahlilla wearily awoke and played with the huge doll and doll's clothing collection that had been assembled. Kahlilla soon gained momentum and she was laughing and playing and ordering everyone about the place. Kahlilla's energy finally petered out just after 2am.

We have to return this girl to regular hours... but then again, you do have to sieze the moment afterall.

July 8

A huge sleep in meant that we were many hours late for the blood transfusions in Melbourne, where Kahlilla had a beautiful and energetic day.

She met a wonderful girl named Kahlia in the day treatment area.

Kahlilla, Kahlia and Tori BFFL.

Kahlilla finished her transfusion of platelets very late in the day so we have to return tomorrow for the receipt of red blood cells. Hmmmm what to do?? Do we drive home or do we go and visit Giggles?

July 7

Kahlilla went to her friend's birthday party today, and she had a great time in between rests.

Grooving at the party.

After the party, it was time for a blood test that revealed the usual shortage of platelets, although we suspected this due to the bleeding lips and tiny bursts on the blood vessels on Kahlilla's left eye lid. That will teach her not to rub her eyes!

Kahlilla and the Mellow Man.

The blood was followed by a wonderful evening with Aunt Georgia and Charli, a visit from Mellman, and ending up at 1am once again when King Kong ended.... a movie that scared the willies out of Colin, but made Lill giggle.

July 6

Another sleepy day with very little food either. There was a short burst of energy at Nanny's in the evening but Lill was soon feeling sore and ended up back in bed with a little morphine.

Sharing her brown blankie with Eli.

Once back at home, Kahlilla had a second burst for the day and she raced about the house, creating glowstick structures until 1am, accompanied by her weary old Dad.

I was actually about to update her diary when a sweet little girl in a sweet little voice, approached asking, "Will you please help me build a rocket and a star with these glowsticks?"

The rocket heading for the star.

July 5

After a late sleep in, Kahlilla was up and racing for 9 hours, enjoying her most energetic day in quite a while. Kahlilla also ate more food today than she has been recently.

Kahlilla's new tail - yet another crazy side effect of her treatment.

Lill had a lovely evening with Bells and Toli, playing with glow sticks and kittens.

July 4

Today was a sleepy day for our little princess, with a little more pain than yesterday and a little more more phine also.

There were, however, 2 bursts of energy. The first at the playground in the afternoon with Indi and the second just before midnight with some glow sticks.

Lilly made an awesome glowstick ball thinggy...

... which later became a star thinggy...

... and later again, a night light.

May you always sleep without hurting Little Lill

July 3

More happy days for Kahlilla with her Nanny, Poppy and Auntie Jess.

Lilly helping Poppy draw a picture

Lilly and Jessie

Lill received a lovely present from her friend Janie in America.

I think Kahlilla likes her beautiful new American Indian doll

July 2

Kahlilla slept well, waking without bleeding lips and just a tiny blood blister on her tongue.

Kahlilla, blood blister and Gypsy

It was another sleepy day, but when she did get out of bed, kahlilla was all revved up with lots of places to go. Today's place was The Fun Shed with Poppy and Auntie Jess.

July 1

Kahlilla woke with bleeding lips from sucking her dummy overnight... it is definitely time for a platelet transfusion.

After a gentle mouth wash and spitting blood for a few minutes, Lill was ready to make the journey to the city. In the car, Kahlilla planned her day...

- Go straight upstairs and have some cream put on her port

- Go straight downstairs to the Starlight Room

- Go outside to the playground

- Go upstairs for the needle and crusty soldiers (platelets)

- Have some tuna sushi for lunch

And it all went perfectly to plan...

Little drummer girl in the Starlight Room

Making her presence felt in the adventure playground

Lill was awesome for the needle insertion, asking Nurse Luke to wait until she was ready. She then counted to 3, squeezed my hands and through clenched teeth, in the sweetest voice said, "I'm ready now"

How many times can my heart endure being totally melted like that??

Loving that sushi... loving seeing our kid eat

Meridy brought in the coolest fairy outfit for Kahlilla ... love the anklets

© 2007 Xfade Design