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**STOP PRESS**
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September 30
We have just heard that Samantha's doctor is very impressed with the results of today's
liver function tests and she may even be allowed to go home in a few days time.
The sigh of relief can be felt
around the world as a huge weight is lifted from the shoulders of Samantha's family and global fan club.
Do not lose faith, never get complacent and remember that Samantha's bone marrow was demolished a few weeks
ago and she is still a little fragile and very prone to illness for a few months yet. Please keep the good thoughts
and prayers flowing for this incredible little girl.
September 30
The girls had a nice weekend. Mum re arranged the house and put two beds in the one
room for the girls to share. Kahlilla was very excited to be promoted from a cot to a bed, but Indi wasn't so sure
about losing her private room. After a rough first night, the girls settled down and played together beautifully all
weekend.
Kahlilla after overdosing on Colin's hair growth pills
September 28
Today was a big day for Kahlilla. A return visit to the hospital for a blood test,
a wee wee test and a check up from the doctor. The fingerprick was traumatic as usual, made even worse when
the bleeding stopped with only one out of two test tubes filled. Kahlilla's platelets have been very low ever since
her chemo started punishing her bone marrow almost a year ago, so blood flow from a fingerprick has never
been a problem.
We saw this clotting as a good sign that her platelets may be finally getting up to normal levels,
however Kahlilla saw it as a crap sign because it meant offering a second finger for lancing. Lill was so scared
and Colin encouraged her to scream and scream as loud as she could, which was good therapy for Kahlilla but
terrified all the other kids in the waiting room. Man did she generate some volume.
While we waited for the blood to be analysed, we sprinted to the Starlight Room and Kahlilla was impossible
to catch, up a flight of stairs and along the corridors. She immediately spotted Captain Sarah, gave her a huge
hug and asked for a lion to be painted on her face, which turned out to be another masterpiece.
Before long we were summoned to see Dr Waters....
Dr Waters is not an emotional doctor, but I swear a smile appeared albeit briefly, as he read out Kahlilla's
blood results. Every component was just about 100%, including platelets, haemoglobin and lymphocytes.
The good doctor announced that her immune system was as good as any healthy kid!!
It is less than 6 months since Kahlilla's stem cell transplant which makes her a very fast healer with an
excellent healing team led by her Mum and her yummy ideas for administering excellent nutrition.
After the consultation, it was another race back to the Starlight Room.
The girl is running so fast these days.... What a gorgeous little lion.
Lill having a tickle of Terry's beard
After the hospital, we visited Terry and Fran (Colin's parents) and Kahlilla had a boisterous time with Terry
chasing, being chased, scaring, horsey rides and lots of giggling. When we finally arrived home, Lill gently
crawled into bed beside her Mum and woke her up with a warm cuddle, then they both fell asleep with
big smiles.
What a perfect way to end a huge day full of happiness and most excellent news.
September 26
The girls went to the Melbourne Show today with Mum and Auntie Jess. The show is
historically an agricultural show but has evolved into a fun fair with rides and all the other attributes of a
carnival. The girls loved the animals, especially the chooks because there were so many different breeds that
they had never before witnessed.
Patiently waiting for a feel of the chook chick... OK OK So it's a duck... what would I know!.
After the animals, the girls went on lots of rides and had loads of fun together, although one giant slide with
Auntie Jess terrified Kahlilla.
"See you later"
September 25
Mum went to work and the girls spent the day with Colin. It rained for much of the day,
so we entertained ourselves indoors. We made a huge tower in which marbles roll along and down and out in all
directions and it fascinated Kahlilla.
September 24
It poured and poured today and washed out Day 2 of the big fund raiser which was a pity.
Indi and Lill spent most of the day with Nanny and Pop.
September 23
Day 1 of the big garage sale and it was well patronised and we sold plenty of stuff.
Lill and Indi had fun having their last play with all their toys that were up for sale.
So many kind people have donated goods for us to sell so we can take Indigo and Kahlilla for a little holiday.
We have chosen Fraser Island off the Queensland coast because it is such a peaceful and gorgeous place to experience.
We want to give ourselves a reward and a change of scenery after such a difficult year for all of us, especially the girls.
September 22
Mum was busy getting ready for the huge garage sale (yard sale), so Lill spent with her Nanny
and Pop which was so much fun as always.
Lill playing with Ollie and MacDougall
Clowning around with Poppy at the coffee shop
Lill and her ever loving Nanny
September 21
Another busy day for Kahlilla. Mum is feeling better, however she barely managed to keep
up with the cracking pace set by Lill. In the evening, we were invited to a friend's alpaca farm and Kahlilla was
fascinated by the funny looking long necked sheep. Thanks to Keith and Daphne for the farm tour.
Lill and Mum had a candle bath tonight where all the lights are off and half a dozen candles are placed around the bath.
Very exciting indeed.
Some wax dripped and floated on the water and Lill was impressed at how the liquid solidified. She picked up a few
pieces of wax and asked Mum what it was. "wax" replied Mum. Lilly then picked up a single piece with an odd shape
and said "Look at this wack!" Wack is now officially the singular form of wax.
September 20
Lill woke in the middle of the night when the first thunder clap sounded. The rain was
deafening on the tin roof and the noise from the wind was a little disconcerting. She asked so nicely to hop into
bed with Mum and Colin that we could not possibly refuse.
An active day for Lill, with the special treat of going to visit Poppy at work.
Lill at work with her Poppy
September 19
A very happy girl woke up bright and early with no fever. Maybe Kahlilla's leukocytes are on the
increase because one month ago, this fever would have taken a week to sort out. Lill spent all day trying to fire up Mum
who is now feeling poorly.
September 18
A rough night for Kahlilla, waking up over and over again as her fever topped 40 degrees.
She woke up fairly bright however, and she spent a nice day with her Poppy.... and eating so much food... such a good girl.
Later in the evening, Lill was still 38 degrees but still bouncing around the house, cute and happy as usual.
Indi is on camp this week with Camp Quality, for siblings of cancer patients/survivors.
Camp Quality are a charity type organisation run by wonderful people and assisted by an army of incredible volunteers. If you want to visit
their web site, please click here ==>
Camp Quality
September 17
Moto GP today and we all headed for the track to watch the races. Lill was in her element as she
loves motorbikes even if they were a bit noisy. Not as noisy however as the jet fighter that roared overhead doing a few tricks.
It was absolutely deafening and Lill was a bit concerned because she could not plug her ears well enough with her fingers.
Cool hat, cool sunnies, cool DA!!... The time to wien the kid is nigh
Later in the day Lill started to slow down and she was clearly not feeling very well. We took her home for a sleep and she woke with a
39 degree fever. Indi was feeling well today, so we hope Lill can beat this one just as fast. Kahlilla puts on such a brave face when
she is ill, as if she doesn't want to be an inconvenience to anyone.
September 16
Kahlilla spent time at the race track today with Mum and Indi and Ben which was very exciting playing
in the tent. Lill spent the rest of the day with Nanny which was so much fun also. Tonight it was dinner at Nanny and Pop's
and the girls had fun playing with dogs. Nice to see Freddie and Chris also. Indi was a little bit sick tonight with a high fever.
Let's hope Lill doesn't catch whatever it is.
September 15
Kindy day today and there was a mobile zoo waiting for the kids. It was so much fun.
Kahlilla bottle fed a lamb, cuddled guinea pigs and she especially loved the turtles.
September 14
The girl's father, Ben, has come down from Queensland for the motor bike Grand Prix and he brought
Indi's little mini bike with him. The girls were so excited and Lill was the first to hop on.
We had to crop this photo to avoid public access to a Sharon Stone moment
September 13
Today Kahlilla went to the funeral of a friend of hers from the hospital. Kye was an incredible
2 year old boy who was winning his battle with neuroblastoma, but the tumour started growing again a few months
ago and eventually overwhelmed him. At the burial, Kahlilla tore off a loose piece of her brown blankie and dropped into
Kye’s grave. Our hearts go out to John and Leah and Tom, Kye’s loving family.
May you rest in peace now Kye, free from your pain.
September 12
Lill and Mum went to Melbourne today to visit a naturopath and then to Megan and Alf’s for dinner
and a recording session for Kahlilla, the star singer and tegar (guitar) player. They also got to hear Alf’s new song which
is just incredible. Lill enjoyed being with Megan and Alf and she slept well in their house.
Kahlilla in a soullful mood in Alf'srecording studio
September 11
Lill had a fantastic day with Nanny and Poppy, Great Uncle Geoff and Auntie Dawn. It was such a
busy day that there was not even time for a babycino at the favourite coffee shop. Firstly Kahlilla learnt how to
play hopskotch and she now stands on one leg and tries to hop all the time. Uncle Geoff kept Lill entertained by
allowing her to tickle his feet and watching him giggle. There was a trip down the main street to get some hot chips
and to visit Mum at work.
By the time they returned home, Kahlilla was exhausted but could not possibly sleep without her DA (Dummy/pacifier)
which was nowhere to be found. After a frantic search of the house, it was decided that they had better retrace their steps and
DA was found at the chip shop. Lill was overjoyed and she slept soundly. When she woke, she ate and ate. Two
sausages and a bowl of pasta.
Lill has a tent set up in the living room
Kahlilla playing with the new dinosaur present from Her Angel Shannon
September 10
There were many special moments over the past few days. It was such a busy weekend.
We went to our country estate and had a long walk and we found a dead kangaroo. He had been hit by a car.
Kahlilla offered to give him a cuddle to wake him up. Bless her wee bum.
Our neighbours came to visit on their horses and Lill loved feeling the softness of the horse’s nose and was taught
how to greet a horse by blowing into its nose. We then went to pat their baby lambs who are being bottle fed after
being rejected by their mums
Our beautiful naaaybours
Next was a visit to Auntie Georgie to spend some time with Lill’s cousin Charli, then we went to Colin’s parents,
Terry and Fran.
Kahlilla's extended family
We had a happy few hours and Lill suggested we take a photo with everyone pulling a funny
face but when the time came, only Lill put on a silly face!
Kahlilla's crazy extended family
On the way home Lill said “Terry is my friend”
September 8
It seems strange living life with Kahlilla at the moment. She is so healthy and extremely full of life....
as if she knows the significance of her near death experience. The strange part is how we are slipping back into normality.
With hospital visits every 4 weeks, it becomes easy to forget. The strange part is also that some part of us, some guilty part
perhaps, believes that slipping into normality means taking things for granted again. We have decided to acquire the new skill
of living in the moment, but remembering the past as a reminder that we must never take anything or anyone for granted in
the present moment. There is a delicate art of remembering the past and learning from the past but never dwelling on the past
and wasting the precious present moment. It should be easy for us to do because Kahlilla (our little teacher) is always doing just that
and she is always there as a reminder and guide.
Having shared this philosophy, Kahlilla has had a normal few days. She loves her little music group - Musical Munchkins, and she is
enjoying kindy on a Friday. The full moon has just passed and Kahlilla looks for her friend, Luna, every night. She always seems
to be in awe every time Luna is sighted amongst the clouds or rising in the east. May she never take it for granted.
Kahlilla is also eating well (and being fed well thanks to Mum's flavours and innovative ideas with shakes, soups and juices) She is
getting a little bit of excess on her tummy which is very pinchable and she is starting to fill out in the legs, although her arms are
still a bit thin. She also smiles and giggles constantly, well apart from a few moods and tears but that is all part of being three and
female... there I go... in trouble again!
Kahlilla's array of food- scrambled eggs and bacon, milk shake and lots of water
September 6
A busy day for Lill. First it was a few hours at the pool which she thoroughly enjoyed, then it was off to a
dance at Indi's school. The music was too loud so Mum took Lill to visit Colin and Poppy at work which was really nice. Kahlilla
was so happy to see Prue and gave her a huge hug.
September 5
Kahlilla's Poppy turns 60 today. Happy Birthday Poppy!!!!
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We all went to Poppy's house where nanny had made a yummy dinner and there was a great cake with so many candles that the
smoke alarms had to be disconnected for the occassion. Uncle Geoff and Auntie Dawn were visiting from Queensland and everyone
had a beautiful time. Lill was a bit poorly this morning and had to visit the doctor who found evidence of a chest infection.
Luckily her Poppy and Nanny and Uncle Dan were available to help cheer her up.
Lilly especially enjoyed chasing her Uncle Dan and playing with with him once he was caught. Dan is the designer of this incredible and
very beautiful website.
Kahlilla with her Uncle Dan
September 4
Kahlilla had a day with Colin while Mum went to work. What a full time job it was too!! Lill is eating lots of food but you have to
prepare it and sit with her, encouraging her to take mouthfulls and sips. We seemed to spend the day eating!! We did manage to make a tower for
marbles to roll down and along and we also had a big sleep together. What a busy day! Mum normally does this every day of the week!!!
Kahlilla and her special pillow from Sammy and Louis
September 3
Father's Day today for Aussie dads and we all spent a quiet day at home. Colin received a tomato plant in a beautifully
decorated pot from Indigo, and some woodwork and a very cute handprint and poem from Kahlilla. It was all so very special. Little do people realise,
but every day for the past few months has been Father's Day for Colin.
Kahlilla with her Auntie Jess who came to visit her today
September 2
We had a beautiful walk down to the main street to meet Nanny and Poppy for a coffee. Lill had her usual Babycino and
enjoyed kicking back with her Pop.
Poppy....Don't pinch my marshmallow
September 1
Kahlilla is on a course of Retinoic Acid or Accutane and her skin is starting to go dry and red especially around her lips.
This morning she woke up crying with a very sore mouth, but Fridays are kindy days, so there was not much time to worry about the soreness.
She had to hurry and get dressed and eat brekky and go and enjoy playing with all the other kids.
