Oct + November
One of Lil's special friends Alf has written a beautiful song for her called Lullaby. Please click here to listen.
YOUR ATTENTION PLEASE
The HUGE NEWS of the year is that Kahlilla's little friend, Bronte has won her battle against neuroblastoma.
Her tumour is still present but it has been declared to be all benign. This is such an beautiful thing to happen to an amazing little girl.
Bronte and her loving family have given so much hope to all NB kids around the world.
May you always be well little girl.
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
It was an exciting week for Kahlilla. There were fun times at Nanny and Pop's house
running around like a crazy kid, with an endless smile on her face, being chased by playful dogs.
It has been cold and rainy, so there have also been cosy evenings spent by the fire.
Monday was Kahlilla's blood test day and the results were very good... not quite good enough however, for another
dose of chemo this week. Such a shame about that!!!!
The main deficiency in Lill's blood is her platelets. The rest of
the blood components are doing well. So Kahlilla has plenty of red cells for energy and plenty of goober soldiers (white cells)
to fight infections.
THE GOOBER SOLDIERS
The chemo depletes Kahlilla's white blood cells for a few weeks, so she has to be so careful not to get infected with
anything. We are constantly reminding her not to kiss people on the lips, keep her fingers out of her mouth, don't
pick things up from the floor, always wear shoes, no licking people's faces ... blah blah blah.
Kahlilla was getting a little fed up with hearing the word DON'T all the time, so we tried to explain
the function of white blood cells. Goobers is a general term for anything yukky and gooey, ie boggies, saliver, mud,
slime, mould, dried snot etc etc etc... It was therefore appropriate to portray white cells as
Kahlilla now understands that after chemo, her Goober Soldiers go to sleep for a while, so they can't fight
the goobers. The subsequent blood tests are to check if the Goober Soldiers have started to wake up yet.
Kahlilla understands perfectly.
So, Monday's blood test showed that Kahlilla's platelets are once again very slow to recover.
Platelets help with clotting the blood after a cut or a bruise, and a low platelet count does not make you feel
unwell. So all we have to do is wrap Kahlilla up, keep her away from scalpels and ensure she does not get her
fingers trapped in any doors (or something equally unlikely). In fact, when Kahlilla removed the band aid
the next day, she was still bleeding from the finger prick. She was then told of a different soldier in her blood...
The Crusty Soldiers. These soldiers help stop the bleeding after a cut by making the blood go crusty.
On Tuesday, Kahlilla trapped her fingers in a door .. at the hinge end... the end where the hand gets squishled the
most. Poor Lill was screaming while Mum was wondering why the door wouldn't close properly.
Kahlilla's bones must be made of rubber because the door closed fully but nothing was broken. The bruising was
only minor and there was no uncontrolled internal bleeding. After a couple of hours, the pain subsided
and Kahlilla got on with her day without another word. She is a tough kid.
Mum saw the gap in Kahlilla's chemo schedule and siezed the opportunity to whisk the girls away for a little holiday.
They are presently with Uncle Craig at Cape Otway, spending time with baby kangaroos, waterfalls and lighthouses.
Later in the week, they continue on to Warrnambool to join in on the biggest kids festival you have ever seen.
A huge sleep in with everyone waking after 11am... luxury. We eventually emerged and after
a very late brekky, we went for a walk along the beach... all the way to town. It was a cold but sunny winters day and
we were all rugged up. The girls had a wonderful time looking for shells and crabs. Kahlilla walked about half the
trip and was carried the rest. That is about 1.5km (One mile) ... not a bad effort for the patient patient.
The evening was spent by the fire sacrificing marshmallows.
These are the days... and nights.
A very normal few days for Kahlilla Blyss. She was a little stressed with a sore tummy
due to constipation after her latest
hosterbul stay, but once the offending jobbie was coaxed out, Lill was bursting with smiles.
Making a spider web in the back of the car
Look at that!!!
Kahlilla missed her little mouse
We received the call this morning that our little girl is ready for collection!! Her blood test this morning showed a healthy
indication of white cells in her blood, so she should survive in the big world now without antibiotics.
Kahlilla was terrified of having the needle removed from the port in her chest, but once it was all over, she was very happy indeed.
She played with Poppy in the back seat of the car all the way to Phillip Island.
We arrived home to a house full of family and friends and Kahlilla was overjoyed to be home again.
This evening was Kahlilla's fund raising night and it was just incredible. There were so many people there and the atmosphere was
so happy and loving. Vika and Linda Bull were just sensational with their beautiful voices and great band. All the kids were up on stage dancing... Kahlilla
would have loved to have been there.
Kahlilla is so healthy, so the doctors are allowing her to be disconnected from her pump for a few hours each day in between antibiotics....
She was not allowed to roam free around the ward, but she was allowed to leave the hospital, so .....
We ran away as fast as those puppy dog slippers would allow ...
Day or night
When she was back in her room, Kahlilla amused herself making chokky balls..... yummy yummy yum yum
Another nice day for Kahlilla who is in danger of being bored to tears.... She is not allowed to leave her room
Lill did some cooking to keep occupied
Another healthy day for Lill...not bad for a kid with no immune system. She is normally very ill by
this stage, so we are thankful and maximising the moments.
The view from Lill's room. Kahlilla noted that this rainbow was landing right on the princess' castle
Lill's new doll
Mum and Poppy decorated Lill's room with a magicla cubby in the corner
Lill had a visit from our friends from the hills. Thanks Jackie and Larry for paying a visit, and special thanks to
their son, Glen who has drawn an incredible dragon breathing fire on black balloons.
Glen's dragon doing the hard work while Kahlilla sleeps
Another excellent day for our Lilly, who ate and played and ate and giggled and ate and ate and ate!
Sunday evening is the night of the big musical event and charity auction on Phillip Island for Kahlilla. We are crossing our fingers that she will be
well enough to be out of hospital and come along and have a dance.
If you are interested in joining the fun (and you are near Melbourne), please call Lou on 0410 020 355
Kahlilla is OK... in fact she is more than OK, she is absolutely shining! The doctors identified
the bug in her system, administered the appropriate anti biotic and the girl is just fine.
Her temperature has been normal and she has been enjoying every day in hospital, thanks mainly to Mum keeping her
entertained and keeping Kahlilla's mind buzzing away with things to do and new things to learn.
In a week or so, the course of anti biotics will be complete and she may be allowed home.
Indi had her birthday party today and she had so much fun even though her sister could not be there...
Stay tuned for some photos.
A special THANK YOU to Carolyn and Tracey at PARTY and PLAY at the toy shop in Cowes, for donating the party and looking after
Indigo's friends, ensuring that they all had a ball.
What an extraordinary few days for us!!!
We came home from the hospital on Sunday with
Kahlilla still having a slight fever. This was a concern because when her temperature starts to rise 3-4 days after chemo,
we know it is time to head back to the hospital for anti biotic treatment during her 2-3 week period without an immune system.
If her temperature is already elevated, how do we know when she is in danger of becoming seriously ill?
We successfully tried not to worry too much, ensuring that Kahlilla had a fantastic time during her few days away from
the hospital. It has turned cold, so we had evenings by the fire, Lill and Indi helped Mum decorate Indi's birthday cake
on Monday. Indi turned 7 on Tuesday and we had a great party with Nanny and Pop in the evening.
Kahlilla slept late on Wednesday morning and awoke with a 40 degree (104 deg F) temperature. She was burning up
but appeared to be quite bright and calm.
This was serious stuff because her white cell count was due to be almost zero, so Mum and Nanny rushed Lill to the
hospital. In emergency, Kahlilla reached 41.4 deg C with a heart rate of 205 bpm (Beating her personal best of
41 deg C at 195 bpm on Dec 6th 2005)
Soon after, Kahlilla started to shake and shiver uncontrollably and her blood pressure dropped to an alarming
level. It was at this point that Colin (on his way into the hospital with the suitcases) got the call to drive faster
because Kahlilla's immediate future was a little uncertain.
Fluids were administered and a blood transfusion was started and Kahlilla started to respond just as the doctor was about
to rush her up to the intensive care unit. Over the next few hours, Kahlilla's temperature dropped a degree, her blood
pressure rose a little and her heart settled into a peaceful 170 beats per minute. With an acceptable level of well being
restored, Kahlilla opened her eyes and wearily tried to sit up. Bless our little battler.
With the likelihood of an untimely death no longer a serious threat, Mum and Colin excused themselves to attend
an awareness and fundraising function for Kahlilla while Nanny looked after her grand grand daughter (N N N Not stuttering)
The drive to the function was silent as we sat in the car somewhat stunned
by what had just happened. Did Kahlilla almost die!?! Near death by chemo!!! How ironic.
The function was just incredible and we must thank our friend Megan for organising such a brilliant evening. It was
a lot of fun and just what Nell and I needed. Sincere thanks also to the staff of the National Bank for being so supportive and
Kahlilla had an enjoyable evening, relaxing and watching a bit of tele. By the time she collapsed at about 11pm, she was
content and smiling, as if today never happened.
We are all home again after a fairly uneventful few days of chemo... medically uneventful
anyway. Life with Kahlilla is always full of events...even when she is plugged into a pump on a trolley.
Playing the "Slide under Mum's legs" game
Racing up and down the corridors with her nanny in tow
Dancing while the flowerpot sings "You Are My Sunshine"
Cooking up a storm in the play room