Oct + November
One of Lil's special friends Alf has written a beautiful song for her called Lullaby. Please click here to listen.
Kahlilla's little friend, Bronte continues her battle against neuroblastoma. Please visit her site at this address...
We have received so much love and support, and we have received financial assistance from so many people also. It is such a comfort
not having to worry about stopping work or taking time off work to spend time with Kahlilla. Thank you to everyone for helping
us is so many ways.... Colin and Nell x
Kahlilla ate and drank a little today,a good indication that she is on the mend.
She is still sad and subdued with a mouthful of ulcers, but she is on the mend.
Kahlilla wanted to make a cup of tea for Colin, so she she set up her tea set and waited for him to visit
after work. He arrived at 10pm and Kahlilla was still waiting. Bless her wee bum. The tea incidentally, was
Another tough night for Kahlilla (and Mum and Lou), so Lill was given a morning shower to help her feel better.
The doctors have detected a type of fungus in Lill's blood so they started her on anti fungal medication via her drip line. This medicine can cause
liver and kidney damage, so regular blood testing must be undertaken. Kahlilla just grits her teeth and takes it all in her stride.
Poppy looked after Kahlilla this evening and Lill found some peace in sleep. She is very quiet and slow in her movements and she is
starting to look thin ... but still manages a little spark and a smile now and then. Lill's tongue is returning to normal size and it fits
inside her mouth once again and she is speaking more clearly now. We have to encourage her to start swallowing bits of food and drink to
ensure she gets back into the habit of eating.
It was not a pleasant night for Kahlilla. With mouth ulcers and a swollen tongue, Lill
is reluctant to swallow, so she dribbles onto her pillow when she sleeps and her Dah gets a little gooey after a while.
This is only a minor problem given that we are happy to be woken every hour to change pillows and wash Lill's Dah.
The doctors were avoiding Panadol (paracetemol) overnight because it masks high temperatures. They are becoming concerned
that Kahlilla's fever is still not under control, so they needed to watch her true temperature overnight. When Kahlilla's temperature
approached 40 deg C at 3am, the doctors learned what they needed to know and gave her some Panadol.
Disturbed sleep does, however make for a weary day and Kahlilla drifted in and out of sleep in between the tears. Her mouth
must be unbearable, yet she bears it with the occasional smile (generally after a quick serving of morphine)
This afternoon was the time for a change of her port needle. The needle that enters Kahlilla's port under her skin must be
renewed every week, which entails the removal of the dressing then pulling out the needle and pushing a new needle in.
Lill was very frightened, but the team of 4 experienced nurses had the procedure over and done with in less than a minute.
Lou and Mum gave Kahlilla a shower afterwards and Kahlilla found a nice warm happy place for a while. She covered
herself in face washers and enjoyed the warm water all over her.... a rare moment of bliss for our little girl at the moment.
Lill's new clothes
Poppy and Auntie Jessie came to visit this evening and Kahlilla was pleased albeit too tired to smile very much. Lill's sore mouth
has also meant that she is eating very little and she must be feeling quite fatigued.
Mum watched over Lill tonight and she slept better from a hair perspective, but woke a few times
with high temperatures, feeling quite miserable due largely to her worsening mouth pain.
Kahlilla has resorted to her energy saving mode of using tiny shakes and nods of her head to indicate no or yes respectively.
We are determined not to wait until she is really suffering so we asked for morphine to be administered.
Kahlilla brightened so quickly and she drank some protein milkshake, then she built and played her marble tower game with Mum.
Kahlilla and her marble rolling game.
Kahlilla started to feel her pain again just as tea was being served.
Kahlilla had a sleepy afternoon, then awoke and watched a movie... feeling OK.
Kahlilla had another rotten night due to her hair falling out. Today it has to go whether Kahlilla likes it or not.
We tried to show Lill a photo of her bald patch, hoping she would agree to a clip, but it only made her sad.
Not much hair left anywhere.
Kahlilla's mouth and tongue ulcers have worsened and she is becoming reluctant to swallow. At the same time, she is trying so hard to eat and drink
because she knows that a nose tube will have to be inserted if she stops eating.. Brave little soldier.... it must hurt so much to eat. Her favourite food at
the moment are to organic apples from her Uncle Craig's tree... sliced into thin wafers, the shape of crescent moons. I would carve a Venus de Milo
if it makes Lill happy.
Kahlilla spent most of the afternoon pining for her Mum and she was overjoyed when she arrived at last. Kahlilla and her Mum shared a beautiful,
gentle hug making them both feel so warm and loved. Mum had brought a swag of games and her and Kahlilla had a wonderful afternoon, after which
she slept for a while but was again annoyed constantly by her falling hair.
Sorry baby, but this is for the best... The band aid was to cure Kahlilla's headache yesterday.
This evening, Mum declared that Kahlilla had to have a hair cut and Mum and Nanny and Colin soon got to work, while Kahlilla sat there very unimpressed.
When all of her beautiful, soft, fine hair was clipped, Kahlilla had a shower which brought her so much comfort.
She sprayed Colin with water so he stripped to his undies and joined in the cleansing. Together they played under the
water and Kahlilla absolutely loved the feeling of the warm water on her back.
Sing Hey, for the shower at the close of day; That washes the last of the hair away.
In the meantime, Kahlilla's room was cleaned and all trace of hair was removed from floors, toys, sheets, pillows, blankies, dahs and clothes.
It was a beautiful sight to see our lovely little bald princess settle into her clean bed, cuddle up with her blankie and dah and drift off to sleep.
Kahlilla had a pretty rotten night, a tormenting night of hair falling out. She woke frequently,
complaining of hair falling into her eyes and mouth and onto her beloved Dah (Dummy/pacifier) Luckily Poppy was there to see
her through the night with his love and patience.
Colin looked after Kahlilla during the day and her tried and tried to convince her to let him clip off her hair,
but Kahlilla refused and refused, saying that she loves her hair.
I suppose 18 moths ago, Kahlilla thought that looking like a mini version of Colin wasn't so bad, but she is now
4 years old and looking like Colin is no longer a good thing.
It is such a pity because she is a gorgeous kid - with hair or without.
Hair loss denial.
Megan and Alf came to visit and Kahlilla was so self conscious, not wanting Alf to see her.
The recent hair shedding has left Kahlilla with a couple a bald patches
and she seems very aware and saddened by it. After a while, Kahlilla relaxed and all was forgotten
after a few minutes of playing with Play Doh
with Megan and Alf. Lill had a lot of fun, smiling her cheeky smile.
Posing for the camera - as usual.
Lill went on to have a sad and tired day, drifting in and out of sleep with her high fever. She has been prescribed codeine and it helped to make
her more comfortable and sleep soundly.
Kahlilla slept well with Mum watching over her. She was a little more sore and sad than yesterday
due mainly to the development of ulcers in her mouth. Despite this, she tried to eat and drink and be merry (Thanks to Mum's
tickling and a few pain killers.) There were a couple of happy hours in the playroom then Kahlilla was fed up being nice to everyone and
decided to be horrible to everyone. You have to go stir crazy once in a while when you are confined to the ward day after day.
Relaxing in her chair
Craig and Georgie and Charli came to visit and Lill was happy to see them. Poppy took over from Mum later in the afternoon
and Lill was so sad to see her go. She cried and cried.
They have identified a bug in kahlilla's blood and her antibiotics were altered to suit, so hopefully Lill will start to feel better soon.
Kahlilla slept well although we heard her frightened voice, talking in her sleep about needles and
nose tubes. Kahlilla had a good day. I think the highlight was when Mum and Lill painted each other's nails.
Kahlilla loves her Mum.
Lill spent a couple of hours in the playroom, creating. It is a good sign that Lill is allowed to leave her room ... normally kids without 2
white blood cells to rub together must stay in isolation, to minimise the risk of catching anything from other people.
Kahlilla, however, has been in good health and high spirits and the doctors consider her to be a low risk and that getting your
bum out of bed is very beneficial.
Uncle Craig spent the afternoon with Kahlilla and they had lots of fun.
Craig has travelled a long way and kahlilla enjoys his gentle, healing nature.
Kahlilla had a rough night. She received blood and platelet transfusions overnight, which entailed frequent
monitoring of blood pressure and other vital signs. She did, however, regain her rosy cheeks and cheeky smile by morning.
Kahlilla reading her favourite book to Colin
Blood donors give up a pint of their blood every few months and their bodies make up the lost volume within a few days.
I cannot write another word without thanking the many incredible people around the world who donate blood.
Kahlilla had a good day. A little tired a quiet with her temperature hovering around 38 deg C. She agreed to have a shower in the afternoon and she sat in her shower
chair for ages. The warm water must have felt so good. If Melbourne was not in water restrictions, it will be by now!
Ben and Indi spent the day at the museum and returned to the hospital with lots of presents and Kahlilla was very happy to see them.
Mellman and Nyssa also came to visit and Lill was happy to sit with her friend, relax and watch a movie.
In the evening, Kahlilla was allowed to venture out of her room and go for a burn in her wheel chair. She had a smile as she directed Colin to crash into
every nurse they could find... little rascal.
Kahlilla awoke feeling tired and she seemed a little pale. Her temperature started to rise at lunchtime.
Being 6 days since the start of her chemo, she is expected to have
very few white blood cells left to fight infections. When the thermometer rose another degree at 1pm, we were in the car and off to the
hospital. Poor Kahlilla cried and cried as she pleaded not to be taken away to the hospital again, but she soon drifted off to sleep and
before we knew it, we were being escorted to isolation room No. 1 in the emergency department.
Getting a needle in to Kahlilla's port was a drama, then we had a few heart stopping moments when her blood refused to flow.
We feared that the port was blocked, which would entail surgery to remove the old and insert a new one. Kahlilla calmly told the nurse that
there was no blood left because all the other nurses had already taken all she had. With a wiggle and jiggle of the needle entering
Kahlilla's ribs, the blood started to flow. Lilll was a agitated but generally very calm throughout this little saga.
Kahlilla playing with her new water fountain
Blood tests showed that Kahlilla has very low white cells, low red cells and low platelets. We were whisked up to the Children's Cancer centre
and Kahlilla was showed to her private (Isolation) room for the next week or so. Antibiotics were started as Lill's temperature continued to
rise. Here we go again... Let's hope the gods are kinder than back in December 2005.
Kahlilla's health and energy has been exceptional yesterday and today, with plenty of time spent running about and
bouncing on the trampoline.
Kahlilla and her Uncle Craig
We all went to the beach and Kahlilla was just an amazing, happy, smiley kid. We found a huge sand castle and
Lill played on it for hours, even insisting on being buried against the pile of sand.
Kahlilla and her sand boobies
In the evening, we all went to Poppy's for dinner and Kahlilla ran and ran all around the house with limitless energy.
It is such a joy to share these times with her, made even sweeter given that she she should be feeling very poorly at the moment.
Mum stayed with Kahlilla overnight. Kahlilla awoke a little sad but was soon feeling better and heading for the
playroom for a couple of hours of craft and painting and music. She is just so beautiful and happy. She has also just completed a
4 day barage of intensive chemo... how is it that Kahlilla is so good?
Kahlilla and her loving Mummy
Painting a masterpiece in the playroom
Drumming to the music in the Playroom
Auntie Nat, Uncle Daryl and baby Darci came to visit and it was nice to see them, although it was short lived as Lill headed for a traumatic
afternoon.... It was time to disconnect, flush, inject and get a boggie sample. Lill mistook the boggie sampler for a nose
tube and was absolutely terrified. She screamed and screamed and when everyone was holding her head, legs and hands, Kahlilla
had to resort to her only remaining defence. She took careful aim..... and wee weed all over Colin. After so many tears,
the boggies were streaming out of Lill's nose and they were easily sucked up by the boggie sampler.... we must remember that method
for next time... traumatise the girl and watch the snot flow.
Once all this was over, we packed our things and ran for IceBlock, waiting for us in the carpark. We zoomed home while Kahlilla
settled into her car seat and slept.
Kahlilla the merman ("Mum, a merman has a willie")
At home, we played on the trampoline, then went for a long walk at the beach and played in the sand and on the rocks.
Kahlilla was so lively and happy. We buried her and made her into a sand mermaid. On the way home through the foreshore forest,
Indi found a little house made from tree branches ... very magical.
The girls inside their tree branch cubby
Lou looked after Kahlilla overnight while Mum had a great night's sleep at Ronald McDonald House. Lill slept well also.
Kahlilla and Lou
Col finally mustered some good health and he was so happy to his little girl again. It was a fun day for Kahlilla playing, wee weeing,
watching movies, wee weeing, giggling, wee weeing, eating, wee weeing, reading, wee weeing , laughing, loving and wee weeing.
Kahlilla came down with a slight fever in the afternoon, but she seemed to feel OK, although she was most unimpressed with Dr David
who needed to have a good look down her throat and had to use a tongue depressor... aka "the choker thing"
In the evening, Kahlilla's final dose of chemo dripped its last and was taken away. Sleep well baby kid.
Mum and Lou made Kahlilla's hospital room very special
Some photos at last!!
Relaxing by her window seat
Kahlilla's special LavaGirl fingers
A nice but very strong dragon is on/in Kahlilla's left leg, fighting the black baloon
Here is what Nell wrote to me in a text message today....
"Lill had a pretty good day.She woke up miserable after 11 hours of sleep, but she snapped out of it creating in the playroom.
She spent the arvo with Auntie Jess ... vids, shower and toys. She ate 1/2 bowl soup and 1/2 yoghurt and 1/3 milkshake.
No nausea but bad appetite. Sore legs. Asleep now for the night"
This was such an excellent SMS to receive. Our curly girlie is battling along very well. The plan is for her to come home on
Wednesday after one more day of chemo tomorrow. Stay strong little one.
Kahlilla loves it when Megan and Alf visit
Lill loves the new fish tank at the Children's Cancer Centre
What a beautiful barrage of messages in Kahlilla's guest book! The tears were welling in my eyes as I read them,
and I am sure Nell will also be touched and teary when she reads them in a day or so. Beautiful happy tears,
joyful and hopeful, brought on by the words of love and comfort and support from so many incredible people
around the world. We will print them and read them to Kahlilla over the next few days. The boost in strength
affects all of us when we need it most. Thankyou.
Please just imagine Kahlilla as happy as she is here
Kahlilla slept well under Lou's care, but woke up feeling about 50%... no vomiting, just a bit off.
Mum managed a sleep in, which is essential
as Kahlilla will need so much patience and love as the next few days progress. Nanny, Pop and Indi are on their way to visit and
Lill is so excited.
Getting comfy in her new hospital bed.... and new toys
Last night, Kahlilla was connected to a saline drip via her new "port". The saline water enters Lill's blood stream
at a rate of one good wee wee every hour. The chemo has several components, a poisonous active product and a caustic waste product.
The saline water helps to dilute the chemo waste product, which will burn the liver, kidneys and bladder.
The port lies under Kahlilla's skin, like a big protruding button under her arm and against her ribs. The IV needle pierces the skin and enters
the button where it seals up nicely. The button is connected to a tube that runs under Kahlilla's skin, up to her neck, into her
jugular vein then down inside the vein stopping before her heart.
After that brilliant medical description, I can now report that Kahlilla was unimpressed about her first port pricking. The text received from Mum
at the hospital was ... "Port accessed... traumatic but quick"
Sticking a big needle into a lump under the skin must feel so alien to Kahlilla. Furthermore, the needle stays in!!! Then the nurses continue to
attach more hoses and taps and bags of fluids.
Kahlilla is due for 4 days of chemo and the first drug was Cyclophosphamide. In the past, cyclo made Lill vomit after 2 hours, but today
she faced it for over 5 hours without a flinch! In fact, she ate and ate and ate.... a great sign. Let's hope her appetite remains.
Poppy and his darling little girl
Lou looked after Kahlilla in the afternoon while Mum had a sleep (not much sleep for the carer during chemo, mainly due to the
amount of wee wee that passes) Nanny and Auntie Lanie and Indi came to visit in the evening and Kahlilla was so happy to see
her loving family.
Kahlilla having some fun times with Indi
We received the call this afternoon.
"Please report to the hospital for the commencement of chemotherapy"
Taking a deep breath and mustering all her courage and love, Mum has just taken Kahlilla into hospital, aided by our good friend Lou.
Colin is not well so he has to get better, so he too can give Lilly his all.
Kahlilla is headed for more pain, vomiting, fevers and misery in general, if she goes through a repeat of her very first month of
treatment in November/December 2005.
We all need to be strong and think only of Kahlilla and how to
help her through this next episode. She is a tough kid and she will burst out through the other end of this
Luckily she is also a great looking bald kid.
Kahlilla spent today at the hospital. She had to have a general anasthaetic so the doctors could
perform a bone marrow aspirate. This is where they drill into Lill's hips in two places and withdraw bone marrow samples for testing.
Before the operation, there was time for some fun in the waiting room, singing with the nice guitar girl and building
a tower with blocks.
Whilst in the day surgery waiting room, Kahlilla built a tower that was almost as tall as her!!!
Kahlilla came out of the general anasthaetic very slowly and very sadly. The poor kid was so upset and disorientated. It was as if
she was operating in slow motion with her words and actions very slow and drawn out.
In recovery after her bone marrow aspirate
In true style, Kahlilla was soon eating and drinking. Once the nurse was convinced that Kahlilla was OK to be discharged, Kahlilla
sprinted down to the Starlight Room to visit Captain Matt whom she promptly buried under a mass of bean bags.
Kahlilla has had an extraordinary week. She spent most of Easter at a children's camp, although
she was summoned to the hospital on the second day of camp to have an internal I.V inserted in preparation for the various
fluids to come. It was heartbreaking to see Kahlilla panic and gasp for air as the gas mask was held over her face.
It was a short and simple operation, however and Lill was back at the camp later that evening with dressings over fresh incisions
in her neck and ribs.
The camp was just brilliant and Kahlilla rode her bike and played with the other kids and had a great time although she was
a little tender and guarded when anyone came close to her left side. This I.V is called a port and actually hides under her skin
... as opposed to the old hickman line which had the two external tubes. Lill was lucky to experience the friendship
of a 14 y.o girl, Joey, who was so kind to Lill and looked after her and helped her to have so much fun. Thanks Joey.
Back at home we had some incredible times, particularly a beautiful evening at the beach, playing in the sand and getting our
feet wet and ending with a flaming sunset. Kahlilla ran and ran in the sand without a limp or a hint of pain and she was so
Last night, Kahlilla slept at her Poppy's house, who she just adores. She woke up with a fever, however and spent the day
burning up, but she was typically trying to be cheery in between the hurt.
Tomorrow, she is back to the hospital for another bone marrow drill and sample. We are not sure when the chemo will start.
Please project your warmth and love and envisage her well and happy (See stunning photo below)
PS... Thanks for all the kind notes in the guestbook. Please try not to be sad, scared or heartbroken... we believe that fear
serves no purpose. Love, smiles and squeezes is what Kahlilla needs.... just like every kid in this world.
In the Starlight Room
Butterfly face paint
Lill's new incisions
Singing in front of everyone at Easter camp
On the last evening of the camp, all the kids watched a video that was projected onto the ceiling!
Can you spot our Kahlilla and her brown blankie?
Kahlilla spent yesterday at an incredible children's camp and was having a great time until the hospital
called and summoned her. Today she goes under the knife again to have an internal intravaenous line inserted, in preparation for
the next barrage of chemo, blood tests and transfusions. We are as yet unsure of the plan, but hopefully Lill can return to
her camp tonight and have some fun before it all starts again next week.
Thanks for all the beautiful notes in Kahlilla's guest book.
Kahlilla's left leg was hurting again yesterday and she started limping. Mum took her to the hospital today
and her oncologist ordered a bone scan. A few agonising hours later, our worst fears were realised when Dr Waters told Mum that
Kahlilla has a neuroblastoma tumour in her left femur (thigh)
What can we say to that piece of news?
Kahlilla, however, had a great time at the hospital, playing with Captain Matt in the Starlight Room. She then bounced into Poppy's house, full
of smiles, enjoying each minute.
We are not sure where to go from here.... please stay tuned and keep this little joyful girl in your thoughts and prayers.
We spent the weekend at Col's place and it was fun times spent on motorbikes, trailer rides, deer stalking,
kangaroo spotting and firedancing. Firedancing is where the girls place a stick in the camp fire until the end catches fire. Then they blow out the flame and
dance about wiggling the glowing end while we try to take a photo.
Our Moon Dancer
Indi was a star on her super bike