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July 08  |   August 08 >  |   After Kahlilla  |   From Lilla's Poppy





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Please read this incredible, brave and honest letter
from Kahlilla's beautiful friend, Kaitlyn
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It is how I feel, it is hard to put into words....


Before there was you, everything mattered to me – about me.

I had freckles, gappy teeth, knocked knees. Were my eyes too close together, too small, too big, too blue?

What did people think – of me, of my clothes. My hair was too dull, too long. I should have highlights, I should get it cut – straightened, shortened, thinned.

I cant swim in the ocean – what if someone saw? My legs? I’m not tanned. I’m not skinny! I’m not stunning!

I won’t play sport – what if I dropped the ball, let my team down? I don’t do well in school, how embarrassing if I had to put my hand up in class – every one would think I was dumb. I can’t wear something different, people will notice me, what will they say?

I look to the ground, if I don’t look at them, they won’t look at me. I get picked on, I won’t say anything though –they may pick on me more. I’ll just sit in my room, listen to music, hope the world leaves me alone.

Then there was you, asking me “want to play cats & dogs?” No way! I don’t want to play cats & dogs, how childish – what if someone were to see? What would people think?! “want to play cats & dogs?” I am screaming in my head NO, but my heart is saying why not?

Why not have fun, why not let it all go, why not play to please a little girl? And it was fun, so much fun. We laughed and I have not felt like this in such a long time.

We play at the beach. Lets swim in our undies –where the world can see how young, and alive & how beautiful & how happy we are. Lets build sand castles so we can get sand in our fingernails, in our hair, in our mouths. Let’s spit the sand! How far can we spit it? I have sand in my undies – how funny is that? People are looking at us, and I don’t care what they think – because we are happy, we are young & we are beautiful. We are alive, and we are alive now. Let’s play cats & dogs, mothers & fathers. Let’s play, & play & play, because we have life, and we have each other.

Play in the cubby? Why not? Who cares that I have to squat so I don’t knock my head. I may mess my hair – it took me ages to do. But who cares? Who cares that half my peers would laugh – because they don’t know you. They don’t know what you have taught me. It’s okay to be me, I am me, & you love being with me. I must be okay if you like me!

You want a cup of tea? Made of mud & sticks? My pleasure madame! I will make you three, because I love you, I love to see you smile!

Kahlilla you have taught me to live, to laugh. You are what matters & before you, I was all that mattered. Now it is life, love, laughter that matters.

I love you, I love what you have taught me. You are an angel, to see your smile swells my heart with pride, love, and it hurts.

Thank you for being my friend.

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Thanks for the lovely messages in the guestbook. It is touching to see how our little girl has affected so many people in a really good way. We don't know where we are going, but the next few weeks could be very tough, so please stay with us and keep Lilly elevated with your love and good thoughts and prayers.



June 30

It was a tough day for our kid, who slept late, woke up sore, got dragged to the local hospital for a blood test, then slept for the rest of the day.

The blood test showed a lack of platelets which was expected due to the blood blisters on Lill's lips and tongue. The test also showed stable red blood cells, which is a promising sign that her marrow may be creating its own red cells.

Kahlilla woke late in the evening in intense pain, which took a few hits of morphine to tackle fully. Mum drew a bath and Lill had a nice warm soak and washed her hair. Soon she felt much better and she sat and enjoyed a cute video sent by Catrin in Germany.



Click Here to see what Kahlilla is smiling about.





June 29

Home time today but not before another trip to the park.



Cosy happy girl




Riding the mosaic eagle at the amazing sundial


Kahlilla's pain returned at lunchtime and it required a even higher dose than ever to get under control. In fact we gave her some phine, but it was not sufficient to curb the pain, so some more phine had to be given (Please humour me and giggle at my crap joke)

Kahlilla ended up receiving 3 times more morphine in an hour than she has ever needed before, but she soon calmed down and slept peacefully for most of the drive home.

Back on the island, it was straight to Nanny and Pop's house for squeezes and cuddles, then home at last to her kittens and a yummy dinner from Poppy.

Kahlilla was free from pain tonight and slept very well indeed, happy to be home once again.

A special thanks once again to CHALLENGE for letting us stay at their wonderful beach house with Kahlilla and her friends.

June 28

Kahlilla slept well, then proceded to have a very sleepy day, although she did manage to stay awake for a little while in order to apply hair spray with Indi and Bells.



How can you improve on that hair do?.


Lill slept for most of the afternoon and we were wary that excess morphine can cause drowsiness. We thought her pain was being kept well under control until 7pm when she awoke screaming and crying and writhing on the bed with intense pain in her lower back.

A significant dose of morphine followed by a horrible 20 - 30 minute wait to allow the medicine to take effect, finally allowed Kahlilla to rest easy.

Then ...we had the most wonderful moment...

Uncle Craig organised a puppet show at the foot of Lill's bed and about 2 minutes after the show started, Kahlilla burst into life. Beautiful, grinning, laughing, euphoric life.



Backstage at the puppet show


Kahlilla was dancing all over the bed, playing with the puppets, ordering the puppets about and altering the perfectly scripted... script.



The bumble bee (made by Indi) could not kill the werewolf


The story soon became about a puppet werewolf who could only be killed by a fart from a princess... Princess Kahlilla of course.



The puppeteers - Kahlilla played both the bumble bee and Lilly, the mini sock


It was an absolute honour to share this incredible burst of life with this amazing girl.

June 27

We are all having a great holiday in Torquay (Australia - Not the Torquay where Fawlty Towers is to be found).

Kahlilla has been very lively, with minor back pain that is easily sorted out with a little morphine. She is so happy to spend time with her Aunt Georgia and Charli, Uncle Craig and GodMum Lou and Arabella.



Mum and Lill have a karaoke session.




Kahlilla enjoying her new diet of fine white wine.




Caring for her baby brother.


We have had a huge walk to the adventure playground and back at the beach house, Uncle Craig formed a rock band whilst trying out his new bass amp.



Happy days




The Band.




Rockin’ On.


June 25

Lill awoke with a sore neck, luckily today was a big hospital day.

Kahlilla's blood test showed the expected decrease in red cells and platelets, but an unexpected decrease in white cells... white cells that should be back up to 100% by now.

Her doctor believes that her sore neck is due to an enlarged lymph node, most likely due to the neuroblastoma. The decrease in white blood cells is also believed to be due to neuroblastoma gathering momentum in Kahlilla's bone marrow.

This is pretty awful news, but what is expected to happen.

So... what do we do?

The doctor has recommended a different chemo agent which should upset Kahlilla's blood counts a little less.

The chemo won't get rid of the cancer, it will only prolong Lill's life. We have to use the morphine, keep Kahlilla free from pain and enjoy each minute.

So Mum has organised another holiday.... starting today... after the 6 hours of blood and platelet transfusions anyway.

Please keep Kahlilla in your thoughts and prayers. Now is the time to fight for everything.

June 24

Kahlilla has had a nice couple of days since returning home from her holiday. Fun with her Nanny and Poppy, fun with her friend from school.

Lill is on a slow release morphine that keeps her back pain at bay and she is getting through each day quite happily, albeit a little sleepy. She is totally adorable and as kind as ever, even thought she has little bursts of aggression here and there... due partly to the cancer upsetting her adrenaline and other hormones and partly due to being fed up with the pain and the consequent medicines.

June 20

Our Gold Coast Holiday

Our Queensland holiday is going along very nicely indeed. We are so busy that there has been insufficient spare time to even visit an internet cafe to update the news.

We should have returned home by now, but Kahlilla developed a fever a few days after arriving and had to spend 2 days in hospital and most evenings thereafter receiving various intra venous fluids, so we decided to extend our stay to compensate.

The kids are having a ball, enjoying the resort with its beautiful pools and spas. We have been to the nearby rainforest as well as Dreamworld, Seaworld and Movie World. Kahlilla and Indigo have been beside themselves with wonder, and getting in the water to pat a dolphin was a special highlight.

Kahlilla is feeling much better now with her energy levels returning to normal. She once again has an immune system, and is ready for a wet and wild day at the huge water park nearby.

Stay tuned for some photos after we return home on Sunday.



Our Holiday Story in Pictures



We flew to Queensland, then caught a bus to The Diamond Beach Resort . in Broadbeach, with Lill running up and down the bus isle.




The first day was spent at DreamWorld where the girls had so much fun at the water park.




Kahlilla was here 12 months ago and she was so looking forward to returning with Col to show him the scary River Rapids Ride.... but when we got there, the ride was closed!!!




This kid is most definitely WANTED ... and preferably ALIVE.




Nell was feeling ill, so Nanny flew up to join us on our holiday to help out and have some fun times with her nieces.




Eli and his happy girlies.




Lill's temperature rose and she spent 2 nights in the Gold Coast Hospital, where the wonderful staff cared for her so beautifully. Once her fever had subsided, the doctors arranged for Lill to leave the hospital each day, returning in the evenings for her anti biotics.




A happy moment outside the laser light show... the tears flowed from both girls soon after we entered the chaotic, noisy array of flashing lights and illusions.




A girl cannot pass through Surfers Paradise without a little shopping spree .




Our wonderful friends at CHALLENGE provided an apartment, a car and even organised an extraordinary experience with a dolphin at SeaWorld.




Indigo and Kahlilla enjoying the scary rides at the theme parks.
Kahlilla's smile epitomises the reason why we have taken some big risks in order to take her on a holiday



The risks:
Taking an immune suppressed child out of hospital (twice!)
Taking an immune suppressed child on a plane in winter
Taking an immune suppressed child to cinemas and other public places
Taking an immune suppressed child into a public spa bath
Having an ill sister and mum near an immune suppressed child




After watching a Batman movie at the hospital, Kahlilla was beside herself when she met Batman at Movie World the very next day!!.




The crimson rosellas loved Lilly and Nellie.




Happy girl at Lamington National Park.




Happy boy at Lamington National Park.




Happy family at Lamington National Park.




Tree fairy at Lamington National Park... with blush on right cheek only, the new trend.




Serenely occupying the throne of the Ice Queen of Narnia.




Splashing in the awesome water park.




Giving Eli some lovin'.




LooLoo, the happy GodMother.
After spending a few days in hospital, we decided to extend our stay, so Louise flew up to help out after Nanny had to return home





Gorgeous happy girl making a splash.




Lilly's huge sand castle on the beach with sky scrapers.




We arrived home to much missed kittens and a roaring fire.... thanks Poppy.


June 11

Lill slept well and enjoyed a pain free day without a fever, wondering why she was in hospital. The low point of the day was when she had to have in injection in her thigh to compensate for the non compatible platelets given to her during last night's emergency. After an hour of pleading then furious objections, we had to hold her down and jab her. Kahlilla was incensed and yelled and screamed and kicked and punched. Colin was ordered out while Kahlilla trashed her room.

When Colin returned to the room, Kahlilla was a forlorn figure worn out from her fury. As we hugged, Lill said "I wish you could have these needles instead"

You took the words right out of my mouth my beautiful little daughter.

So the fever refused to surface, we argued our case with the medical staff, and they kindly bent the rules and agreed to release Kahlilla in the morning in time for our plane flight... armed with an array of antibiotics, pain killers and letters to the Queensland Hospital (Just in case)

So Kahlilla is looking after her Poppy tonight while she receives more blood transfusions in preparation for her holiday.

Kahlilla is totally thrilled to be going on her holiday and her gleeful smile was just golden.

June 10

Kahlilla started off today well although her nose was running as we planned the holiday.

In the early evening, the headache started, rising to an unbearable level within 30 minutes. As we tried to soothe her throbbing head, we noticed the heat she was giving off. The thermometer confirmed 39 deg C.

Time to go to the hospital.

After a few hours in the typical discomfort of the emergency department, Kahlilla's fever subsided, then she was given a blood test. The results showed a platelet count of 3, which required an urgent transfusion. The red cell transfusion was next and Kahlilla was soon feeling much better. Then the anti biotics started which normally sentences Kahlilla to a 10-14 day stay in hospital.

The worst part was the constant prodding, reflex and motor skill testing by various doctors, trying to ascertain if the severe headache experienced earlier was anything serious. Lill was so beautiful, calmly waking for each examination and tolerating the array of questions and instructions.

Kahlilla rarely has headaches, so we were a little concerned.

June 9

Another good day for our Lilly, who enjoyed less back pain and hence less morphine than yesterday. The highlight was easily the baking of a yummy cake with Aunt Jess.

It was Indigo's turn at the doctors today, who diagnosed her with tonsillitis.

June 8

Today was Indi's final birthday party, with a group of friends journeying into the city for a day at the museum and a 3-D movie at the huge IMAX cinema.



Alive Lill with dead dinosaur


Kahlilla had a great day running about, amazed at the things in the museum. There were a few tired moments but no break through pain, as far as we could tell.... she also had no morphine apart from the long acting morphine tablet in the morning.



Alive Lill with dead dinosaurs


Lill's leg pain has gone away although she favours walking and standing on her tippee toes.



Alive Lill with dead whale


The 3-D movie was sensational and the kids absolutely loved it.



Crazy Lill with crazy Col


The finale was dinner at the Pancake Parlour, and the kids seemed to like the idea of ice cream for dinner.



Crazy happy kids


June 7

Another afternoon spent with her favourite Greg was excellent therapy for our little Squirt. (Kahlilla only knows one Greg but there is no need to tell Greg that)



Kahlilla and Gerg


Kahlilla brightened somewhat today although this was not reflected in the quantity of morphine required to keep the pain at bay.

When she is feeling just OK, Kahlilla simply bursts into life and grabs the present moment with all her might. She is just a total joy to be with.

June 6

Today was a tough one for Kahlilla, who was either very tired from the morphine or very sore from a lack of morphine. She is on a twice daily tablet which slowly releases morphine over the 12 hours, then she has spot doses as required should any pain break through during the day or night.

Lill was a little angry today and easily upset. The cancer can affect the hormone balance, and we are sure that the pain is driving her mad.... not to mention the constant medicines she has to take.

The highlight of the day was spending a few hours with Uncle Gerg - her favourite Greg.

Colin returned home from work to a sad little daughter who had just awoken from an afternoon sleep saying, "I feel pain Col"

Kahlilla rarely tells you she is feeling sore. It normally takes for us to ask her if she is OK after we notice her being a little quiet or moving gingerly.

We established a good regime of pre emptive morphine and Kahlilla agreed for us to wake her every 4 hours to give her the pain medicine.



Sore kid looking after her babies


June 5

It was a mixed day for our Lilly today. She woke in pain, then had a fun morning helping Indi, open her presents. The afternoon was spent at school where she was surrounded by her Grade 6 friends.



The popular kid


Kahlilla's sore back started up again at school, but was quickly sorted out by a drop of morphine. Lou and Bells and Toli came over to share our birthday dinner for Indi, and all the tin lids had a wonderful time together.

Lill started to become sore later in the evening, so another drop of morphine sent her off into a peaceful sleep.

June 4

Hospital day today, and Kahlilla was so good for the doctors and blood takers despite her sore back. Kahlilla's blood counts are all OK except for her platelets, however it was all deemed OK for another dose of melphalan to be administered.

Lill's doctor is helping us have a week in Queensland by organising blood and platelet transfusions at the hospital up there. We leave in a week for the warm north and the vast array of theme parks. The girls are very excited.

June 3

Lill's pain has been ON and OFF for the past few days. Her back generally starts to hurt in the evening when a little morphine sends her off to sleep.

There is always enough strength to give her brother a little massage though.



Haven't those red, pink and purple nails lasted well!?


June 2

Kahlilla spent most of today with her beautiful friend Kaitlyn and what a day it was, playing on the trampoline and have a great time at Amaze'N Things, the amazing maze place.

June 1

It was Indi's first birthday party today.... well... not her 1st birthday party but the first of three 8th birthday parties. Her actual birthday is on Thursday



Happy Birthday to you


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