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Kahlilla (18 March 2003 - 25 August 2008) *****************************************




August 31

My Darling Kahlilla.

You were a mighty girl.

7 days of rain ended on the evening you left this world. Perhaps the sky was crying because an angel was suffering.

The sun came out the day after as the heavens received your spirit.

Tonight is the first day of the new moon and tomorrow night will carry the first sliver of your "present" moon.

Tomorrow is also the first day of spring and your memory will be with us always in every pink and purple flower, every bird song, every moon, every rainbow, every peppermint Freddo, every tuna sushi and every butterfly
(Ha Ha … I said butt)

Thank you Baby Girl for showing us how to be fearless, loving and so so mighty.


Always in my heart ... Colin .... Your loving Dad x

***************************************





Kahlilla, In your honour, I promise to live the loveful, graceful, kind and gentle way you chose to live your life … by passing it all on to your brother and sister and to your Collie.

Through me they will come to know you.

They will feel your warmth and kindness in my loving arms.

I will show them peace through being present with every moment

I will cherish the joy to be found in simplicity

Thankyou for your gift to me

Always My SweetHeart, My Sunshine


Mum x

***************************************





August 30

We decided to decorate Kahlilla's coffin (Peace Bed), so we brought it to our house for a few days and Lill's closest friends made a contribution with the paint brush.

It was so lovely when it was finished, Kahlilla would have loved it and we hope it will take away the dark side of death for the kids (and adults) at Kahlilla's parade.





















We will be having a farewell service for Kahlilla at 3pm on Sunday, August 31st at the Great Hall in the Adventure Resort on Phillip Island.

We think that Kahlilla would prefer colourful clothes and happy tears. Please come and join us, everyone is most welcome




August 25

Kahlilla Blyss Donahoo slipped away tonight.

With her last ounce of strength, Kahlilla rolled over and hugged her Mum, then rolled the other way and wrapped an arm around her Dad, giving me a mighty squeeze.

We were stunned at how our little girl found such strength, yet felt honoured that she did.

Then she was peaceful. She breathed her last few breaths and her spirit gushed into the room filling the hearts of her family who were surrounding her bed.

Kahlilla was so weak and so sore yet she made sure she let us know that all was good. This loving child was unselfish, looking after us right to the very end.

Thankyou beautiful little girl. You are in our hearts forever.

August 24

Kahlilla has had a dreamy couple of days only feeling pain when she moves... which is about twice per day. She is heavily sedated and very weak, a little incoherent but still fighting like mad.

She is never alone and we are reading her her favourite books and telling her magical stories. Being sedated, we can take her anywhere in the world.

We have taken her to mighty waterfalls and to the Butterfly Ball where she grew butterfly wings and flew around with the fairies. We went to the snow and made a giant snowman and we even flew on a pink Pegasus to her favourite lighthouse where all her family and friends were waiting for her.

Take your time little girl and enjoy your dreams.

August 22





"A respectful hush has fallen over all the good spirits in the universe as they await a very special arrival. They gather quietly, spreading their warmth and love around those who are preparing to say the hardest goodbye. But they are patient spirits and will keep watch until the moment arrives "


August 21

Still going



Tickling Eli's foot




The Queen of the Fairies




Eli is backing one out and Poppy is copping the full brunt


August 19

Kahlilla had a painful night with a 40 degree fever to top it all off. The morphine injected into her leg tube worked quickly but stung as it was pushed in.

To quote Kahlilla ... This is crap... It is not fair

After a big sleep, she felt better. I got up to make Mum a cup of tea and as I excused myself, Kahlilla called me back and reminded me of how to make a great cup of tea...

First get a cup and put a tea bag in

Then pour in the hot water .. carefully

Then jiggle the tea bag... carefully so it does not splash onto your hand

Then a spoon ful of honey, then some milk...

And Col.... put some magic in to make it taste better for Mum



August 18

There was little good news from today I'm afraid. Kahlilla slept until early afternoon when she awoke with the same awful pain as last night. We threw the entire arsenal at her (morphine, gabapentin, ketamine and a strong sedative) but the pain in her ribs prevailed.

The decision was made to insert a small needle into Kahlilla's tummy, in the fat layer just under the skin. A tiny tube remains inside Kahlilla, then various pain meds are injected via the tube without the need for further needles.

The major problem was that the nurse could not find a layer of fat on Lill's tummy, she is so skinny at the moment, so the injection was made into her thigh instead.

The subsequent morphine that was injected finally got on top of the pain and Kahlilla fell into a hazy sleep thanks to the strong sedatives.

Poppy made a horrible discovery when he noticed 2 lumps on the top of Kahlilla's skull as her was stroking Kahlilla's hair today. This cancer can really race through the bones.

Please keep our little girl in your thoughts and prayers and she struggles to find peace in sleep. We wish for her magical dreams where there is no pain.

August 17

A sleepy day today although when she dis awaken, Kahlilla had time to play with her brother Eli.



Lilly knows how to make Eli smile


This evening was tough with a strong onset of pain around midnight, which Kahlilla battled with for nearly 2 hours before she finally fell asleep. We are nearing the limit for orally administered morphine.

August 16

Tonight was christmas in July - Well August.

There has been so much snow falling on the nearby hills that we decided to have a Christmas Party and everyone had a great time. Kahlilla was particularly energetic.



Eating dinner by the Christmas tree




Relaxing by the fire




Unwrapping a pressie with Uncle Craig




The favourite present - a pink merangue




The second favourite present - a fuzzy unicorn


August 15

Kahlilla enjoyed today. She had a little pain in the morning and a little more in the evening, however in between she was OK and therefore made the most of it.



Watching Pete the carpenter build her new cubby




Surrounded by bubbles - Kahlilla smiling a second before this pic was taken




Indi had a fancy dress day at school and Mum made the most awesome costume, makeup and hairdo


August 14

Today was a not so weary, sleepy day for Lilly.



The chokky frog gang


Our great friend Lou, toiled all day outdoors and by sunset, the fairy garden was almost complete. It is just lovely and we are hoping for a day of sunshine and energy tomorrow, so Kahlilla can take it all in.



Sleeping by the fire is Blyss


August 13

Today was a very weary, sleepy day for Lilly.



It is hard to tell who is looking after who


When kahlilla is awake, we experience a flurry of special moments, and the pick of today's moments was this one:

Kahlilla awoke in the afternoon, struggled out of her bed, found a tissue and hobbled over to Eli in his cradle nearby to wipe the dribbles from his mouth. She then touched his cheek and climbed back into bed.

August 12

Big hospital day today. Kahlilla struggled out of bed nice and early, chosing to conserve her energy and sleep in the car.



Giving the love to and feeling the love from her brother.




Teaching Eli good dummy management techniques.




Warning everyone of the huge wee wee recently wee'ed by Eli.


Despite these beautiful photos of Kahlilla, we had a very frank discussion with her doctors about Kahlilla's deteriorating health. The morphine is continually increasing yet her pain is still breaking through as the cancer grows.

We have accepted that the time will soon come to stop the blood transfusions and just let her go peacefully.

August 11

I think today was a little better for Kahlilla. She still slept for most of it and she had several pain break throughs, however she seemed brighter somehow when she was awake.



Always happy to see her Poppy.




Aunt Georgia decorated Lilly's room. It looked wonderful and Kahlilla loved it.


Tomorrow is a day of blood transfusions and doctors' appointments.

August 10

Another weary day for our kiddo who spent most of it asleep. There was a fair bit more pain again and some of the medications were increased after discussions with the hospital and the district nurses.



Even though she was struggling with her pain, Lilly still managed to get off her bed to wipe the dribbles from her brother's mouth.


August 9

Today was a very sleepy day, with her pain breaking through a few times. Her left leg is very sore and she clutches it as she hobbles about the house.

August 8

Kahlilla journeyed back to the city once again to have the right side of her jaw seen to with a small zap of radiotherapy... a fairly large zap actually.

August 7

Today was spent relaxing at home before radiation treatment tomorrow. New pain areas are showing up daily, today being her left leg which she hobbled around on keeping herself busy for the 5 hours she was awake. Thankfully her pain is under control with only one breakthrough for the day.



The favourite milky rainbow making.




Lill missed out on a farm day with her class, but her school friends brought her back a goodies bag.


Lil was lucky to have Nan and Lou over to help out around the house. Thankyou lovely ladies for showing us sections of carpet unseen for months).



We found a blue tongue lizard in the wood pile.


Kahlilla has received so many beautiful parcels in the mail. She loves surprises so a big warm thank you all. Donations have also been filtering in through Lil’s paypal account…thankyou, the financial assistance has lightened our load and enabled us to spend more time with our divine princess, and also help to fund a princess cottage cubby house with construction starting next week. We are also stealing ... (Click here =====>) Olivia's idea.. of making a fairy garden. The plans are in the development phase.



The cubby should look something not unlike this... but with fairy paintings.




August 6

We have had a contrasting couple of days with our kiddo, with times of chronic pain blended with the most adorable and affectionate moments.

Kahlilla had a bone scan yesterday and the results were very shocking. We were expecting a handful of obvious tumours in her leg, hip, spine, arm etc, however the radiologist informed us that Kahlilla has widespread and generalised cancer across her entire skeleton.

Obvious tumours can be effectively hit with radiotherapy offering some pain relief, however widespread and generalised bone cancer cannot.



Patient and calm during her bone scan.




Entertaining Mum and Eli in the waiting room.




Entertaining Mum and Eli in the waiting room - reverse angle.




Drawing a game of Tic Tac Toe on Colin before the doctors draw on her.




Patient and calm as always.




The most blissful shower ever.


Please keep up the fight.

August 4

Last night was a better one for our Kahlilla.

We started the day optimistically with a new pain plan as directed by the palliative care doc. Llil's background morphine was increased by 30%, with a greater breakthrough dose. Unfortunately, she required seven extra doses. Still then, her back pain didn't fully subside. She slept for most of the day, waking to eat and medicate.

Col and I have been strict with Kahlilla's sugar intake as there's a belief that it may promote tumor growth. Today when she woke she asked with tear filled eyes "when am I going to be able to eat meringue's again?" We made a deal that if she ate breakfast she could have some meringue. Our lillte princess took close to an hour to finish a quarter meringue, a single crumb at a time, bless her sugary heart!

We're off to hospital tomorrow for bone scans and transfusions..... and for a serious meeting with the palliative care doctor!

August 3

Kahlilla had another rough night of intermittent sleep due to traces of pain that we can't quite knock on the head with the morphine.

Lill slept for much of the day with back pain that was on more than off. We sought advice from the wonderful district nurses who advised us to ramp up the morphine effort even further, with the basic rule being that morphine can do no harm if the dose is stepped up gradually and the pain is genuine.

Uncle Gerg dropped in to visit and he had trouble raising a spark in Kahlilla, which is worrying because he is afterall, her favourite Greg. Later in the evening, when the higher morphine dose started to overcome the pain. Lill left the bedroom and joined us in the living room where she had some food, some yummy juice (carrot, beetroot, apple and brocolli) and we had some smiles from our princess.



Enjoying a very cool bag made Kahlilla's friend Tash


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


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