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May 07
Attention all
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...
Bronte's Website.
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
May 30
Kahlilla is Ok. She is calmy absorbing her latest doses of
chemotherapy and should be home in a few days time.
Kahlilla's bone scan was still showing a hot spot on her left femur, which can only be assumed to be
active tumour cells. So.... here we go again. The oncologists are recommended two maybe three more
cycles after this one.
May 28
Blood test day today and Kahlilla's once again chose the needle over the finger prick. The little girl
was so frightened in the lead up. First the sleeve is rolled up, then the tourniquet is tightened. The vein is located and swabbed with
alcohol and the needle comes into view. The vein is pulsing and it feels so exposed, vulnerable, easily hurt.
Kahlilla kept still, refusing to look the other way as the needle entered. Her ungs were once again, in fine form as
all the fear exited her mouth and long, shrill scream.
A few hours later, the results were back and Kahlilla is OK for her next round of chemo tomorrow... although we have
insisted on a bone scan beforehand, so you never know your luck. Only a miracle can spare her from
another cycle of chemotherapy.
This evening was fun with Kahlilla clipping her Great Uncle Poppy Damian's hair. The family gains another Slap Head.
May 27
There was no rest this Sunday with a day filled with trampolines.
Ghost Riders
The evening was well spent at Nanny and Pop's where we had a barbeque and Kahlilla had so much fun with her
Poppy and her Great Uncle Poppy Damian having bike races up and down the driveway under the starry sky.
Racing Bikes
May 26
A busy weekend for Lilly and her family. Firstly there was a birthday party for her cousin, Gareth.
Partying with Mum
After the party we went to the country estate for dinner by a raging camp fire.
Fire Girl with marshmallows
Fire Girls
Fire Dancer
Another Fire Girl
May 23
More happy days.
Mum took Lill for a day on the nearby ocean boardwalk and they loved the wild and windy coastline.
Kahlilla especially enjoyed the blowhole.
On the boardwalk.... She'll be having some fun
On the boardwalk.... With the sky up above
On the boardwalk.... she'll be falling in love
Fun monents at the play centre.
There was incredible progress at the swimming pool.
Excellent finger posture for maximum propulsion
Followed by happy times in the bubbly bath.
Up to her neck in it
Washing her sister's hair
May 21
Today was just an incredible day. We took Lill to the local hospital for her weekly blood test and Kahlilla insisted
on having a needle in the arm rather than a finger prick (Or perhaps two finger pricks, like last time.) She was so frightened
as she squeezed Colin's finger and screamed and screamed with Colin whispering in her ear to scream louder. A few
seconds later, it was all over. As we drove home, a reflective Kahlilla said
"I like the needle. It hurts more but it is quicker than a finger prick and now I can feel the soft bits on my blankie with all of my fingers
because there are no band aids."
Surfer Girl
On the way home, we visited the pet shop and the surf shop. We dropped in at Poppy and Col's work where Lill played hide and
seek with Mellman under the office desks for ages.
Girl on a roof
Next we bought some chokky balls (not as yummy as Lill's) and ate them in the carpark overlooking the wild and wind swept ocean.
After that, we came home for some of Mum's super milkshake, then we were back out to do some grocery shopping and Kahlilla
enjoyed being the centre of attention in her little town.
An angel wearing a bonnet is sitting on my bonnet!!
Kahlilla is just delicious at the moment. She is healthy and full of energy. She is adorable and affectionate, always surprising
you with a squeeze of your hand or a kiss on the cheek. She is cheeky and always seems to be laughing or giggling about
something.
Slap Heads
Poppy came to visit in the ebening and Lill helped to give him a most excellnt hair cut, after which Kahlilla remarked that Poppy
too was now a Slap Head.
Tonight was a wild and windy night with a clear sky full of stars, so Mum had the brilliant idea of laying on the trampoline outside,
watching the stars. We lay there all cuddled up for a while but Lill was feeling cold, so we started running and jumping on
the trampoline. Kahlilla has this glowing egg that morphs into different colours. It usually sits on her special shelf, but tonight
it was on the trampoline with us, chasing us as we ran away from it. It was simply rolling down the slope caused by our
weight but it was chasing us and it was hysterical. We came indoors after 10pm and collapsed into beautiful sleeps.
The other excellent aspect of today, was that this morning's blood test showed that Kahlilla's platelets are still low and
chemo has been postponed for another week!!! That is another week with this little whirl wind of joy!
May 20
Another beautiful weekend for our family. Nothing special, just a series of loving and happy moments. Kahlilla
spent Saturday night at Nanny and Pop's and she had a great time there also.
May 18
A wonderful week for our big girlie. She spent a day with Poppy and a day with Nanny and beautiful
evenings with Indi. Mum has been busy keeping Kahlilla nourished and medicinalised, a full time job in itself.
Marshmallow Girl
We toasted marshmallows in the wood heater in the living room.
Kindi Girl
Kahlilla attended her kindi for the first time in a while and she was so happy to meet all her friends again.
Proud Scar Girl - note the port on her left side
Indi took her sister to school for Show and Tell and Lill was happy to portray her array of incisions and other
hospital derived fixtures and fittings.
May 14
A big hospital day today. Lill had a very brave finger prick, then a consultation with her doctor, which
had to be postponed until the results of the blood test came through.
Kahlilla was happy to amuse herself whilst waiting for the test results
Once the car racing was over, the doctor said that Kahlilla was in excellent health, with a healthy level of red and
white blood cells. She was however, slightly low on platelets and her running nose was an indication of a virus, so
she was spared chemo for one more week at least. This is great news given that Kahlilla has been so happy and
vibrant these past few days. Next week, she will have a bone scan, then more chemo if she is well enough.
May 13 Mother's Day
Happy Mother's Day Mum (Lilly has lillies)
Nellie had coffee and croissants in bed then we spent an hour at the beach, where Indigo found an awesome crab.
Indi's crab
Such a gorgeous day today
Mum spent the afternoon with just herself and Indi while Colin and Kahlilla went to visit Col's Mum and after a few minutes
feeling a little self conscious about her nudie head, Lill was so happy to run around and play with her cousins.
In the evening we went to visit ritz and his family and Kahlilla loved playing with the balls on their special soft green table.
I could spend days, gazing across the baize, at you.
Exhausted after such a busy day
May 12
Another great day ending in a lovely afternoon at the beach with Auntie Nat, Uncle Derwent,
Will and Darci.
Sandy Lill
May 11
A beautifully normal couple of days for Kahlilla... Sleeping late in her own bed; Collecting the chooky
eggs; cruising up and down the main street; playing; relaxing by the fire; enjoying the company of her sister; etc....
May 9
The doctors came to visit this morning and they decided to let Kahlilla go home, however...
Lill's platelets are low and she will need a transfusion before going home
Lill's potassium is low and she will have to take potassium medicine home with her
Lill will need her blood testing every 2-3 days to check her platelets and her potassium levels
One of Kahlilla's anti fungal medicines lowers potassium levels
in her body and it is so important to return her potassium levels to normal.
Lill busied herself making cups of tea, but still her platelets did not arrive.
Note the delicate Bambi Tea Pot
 
Suitably dressed for the Starlight Room
Lill was unplugged from her trolley and we sprinted down stairs to the Starlight Room. Lill ran around for ages but still her platelets did
not arrive.
Making new friends in the Starlight Room
We watched a movie, but still her platelets did not arrive.
Kahlilla raced around the ward on her wheely bug thinggy, but still her platelets did not arrive.
Lilly Bee
We played Hot Potato with Lill as the potato on her wheely bug thinggy, but still her platelets did not arrive.
Finally at 11pm, her platelets turned up and 2 hours later it was all over. There were a few tears as her port needle was extracted
but soon after she was fast asleep and we were zooming home in IceBlock.
Home by 3am and in bed 5 minutes later.
There really is ... no place like home
May 8
Kahlilla looked after Mum last night and they too had a wonderful time the
next day. Lill was unstoppable and she also ate lots of food thanks to Mum's persistence.
Mum and her baby girl
Kahlilla insisted on putting a few tattoos on her body today and soon she was covered with 2 on her head,
3 on her legs and 2 on her arms. She then had a bath and we caught a special photo of water droplets on the
wispy hair at the top of her neck.
Nice Tattoo!
May 7
Kahlilla looked after Poppy last night and they too had a wonderful time the next day.
Poppy had a hard time keeping up with Lilly as she was always up and walking. Those trolleys can't be pushed
too quickly for fear of tipping over.
Kahlilla and Poppy invented a new game where Kahlilla empties a box of tissues and throws them all at
Poppy, who scrunches them up and throws them back. Lots of fun and no one gets hurt, although the clean
up effort at the end of the game is considerable. You will be pleased to read that all the tissues were recycled
into a Tissue Blankie over Kahlilla
Lill and her tissue blankie
May 6
Kahlilla looked after Lou overnight and she had a great sleep, which prepared her for a day
full of action.
 
Cheeky girl playing with the Play Doh
Colin went to the market and the charming ladies at the coffee merchants remembered Kahlilla from last May!! They
gave Kahlilla a gift - a beautiful little teapot with a painted deer on it. Lill was so pleased and she could not wait to
utilise it during her next tea making session. Colin also bought a coffee grinder and he put Kahlilla to work grinding
the coffee beans. It was good excercise for her arms, Lill's room acquired a pleasant aroma and the coffee tasted
superb... a win win win.
Have to build up those arms again
Kahlilla had to have a fingerprick today and she was so very frightened. We encouraged her to scream as loud as she
could and it was soon over with, although our ears were so sore... Kahlilla can really scream!.
May 5
Kahlilla was so cold last night. Her temperature spiked to 39, and not even 3 blankets could
keep her warm.
She woke up feeling pretty good, so good in fact that she walked to the bath room to have her bath.
Kahlilla was a little wobbly on her legs but she persisted and walked all the way across the hall. Then she was rewarded
with a lovely bath.
This afternoon, Kahlilla insisted on the Cat in the Hat dance and she danced to the crazy music with Colin. What an adorable sight
it was to see Lill smiling and shaking it.
Lou and Arabella came to visit this evening and Kahlilla was so happy to see her little friend again and they played and
played.
Lill and Bells
The really big news for today was that Kahlilla popped out her first jobbie in over one week! A most welcome event, given
how much the chemo can mess with her system.
May 4
Poppy watched over his little girl last night and she slept very well. The doctors were pleased
with Kahlilla's progress although her red and white blood cell counts are both quite low. They are impressd at her energy and
high spirits, so they ordered that her morphine be reduced to half. We have to wein the girl off the juice and check
what is causing her big smiles of late.
Kahlilla had to have her port needle changed this afternoon and she was so scared but also very brave. She even
removed the sticky dressing for the nurses. Once it was all over, Kahlilla had a long bath in the special hospital
bath, complete with remote control which raises and lowers the entire bath. After her soak, Kahlilla she was off and
racing, so full of her beautiful energy.
May 3
A good sleep last night, although she was very unimpressed about being woken by the nurse before 10am.
After a grumpy start, Kahlilla absolutely shone. She lowered her bed and walked to a wheel chair and we trundled to the playroom,
where it was time to play doctors and nurses.
Lill is a most excellent nurse
After the playroom, Mum suggested we play hide and seek. It is good for Lill to escape from her room as often as possible.
Kahlilla found an superb hiding place on her wheel chair, under her beloved brown blankie
Lill was very pleased with the splendid cup of tea she made for Colin in the piggy tea mug
Kahlilla played and played all day. The best part for Colin was sitting with Lill on her bed watching some TV playing the friendly
kicking game. Lill was so happy and affectionate that it was not possible to avoid shedding a happy tear.
By early evening the kid was exhausted and she slept on her new bed that we made on the floor.
Kahlilla's floor bed
May 2
A better night's sleep for Lill who awoke a few times during the night craving water for her sore mouth.
She then went on to have a pretty good day, especially after the doctors declared that she now has twice as many
neutrophils in her blood as yesterday.
Lill's sore head is persisting, so a bandage was used instead of band aids.
The band aids were ripped from Kahlilla's head without too much fuss this morning and it did not stop Lill from having a happy day.
In the evening, Colin came to visit and he received the warmest hug his world has ever felt. He had brought
the ingredients to make chokky balls and Lill was eager to start ASAP. It was a great sight to see her smiling as she baked
in her bed, grinning her cheeky smile every time she stole a fingerfull of mixture from the bowl. The finished product was
yummy by the way.
What has frightened Colin and Kahlilla?.
May 1
Another disturbed night of sleep for Kahlilla, due mainly to a sore mouth, soothed by a little sip of
her pink milk (strawberry flavoured). Lill woke late with a sore tummy which the doctors are attributing to the side effects of
the chemo.
Lill spent a happy hour in the playroom doing a few puzzles.
Lill has had a few more headaches over the past few days and she has accumulated more band aids. We have been directed by the
charge nurse to remove them and keep her skin clean. We haven't told Kahlilla the bad news yet ... There are 4 on her head and
one of them traverses her eye brow and it is going to hurt!
Today was OK with Kahlilla drifting in and out of miserable patches, but we did get a few smiles. The doctors have detected
a neutrophil in Lill's blood. This is a great sign because neutrophil recovery can be more difficult for kids who have undergone
stem cell transplants.
Demonstrating her film making skills.
Demonstrating her tea making skills.
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