Our beautiful lil'
LILLY'S DIARY


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January 31

We all slept in. Col went off to work while Lilly had a lovely day with Mum and Indi. Lilly had her overnight nose feed but she still had a healthy appetite during the day and a craving for "Egg in a Cup" Luckily the chooks are giving three eggs a day and it is also fortunate that Mum does perfect boiled eggs with yummy, runny yolks, just how Lilly likes them. Lilly did a big vomit in the afternoon which was a bit of a worry. Mum thought it a good idea to give Lilly a way of visualising and relating to her treatment, so she told Lilly that there were lots of Harry Potters running around inside her body. The Harrys were all casting spells to make the black balloon go away "Expecto Petronum" Lilly quite likes the idea and she takes great delight in telling everyone. We found out that Lilly's little friend, Willow, died a few days ago. Willow had a very rare strain of cancer and we met her during Lilly's first stay at RCH. We all felt so sad on hearing about Willow and hearts go out to Chrissie and Kevin who must be feeling so indescribably hollow and lost.

January 30

Lilly is OK!!! Her blood is improving with neutrophils up to 0.62, but her
platelets are still low so they gave her a transfusion then let us go home,
but not before Lilly and Indi played in the playroom and the starlight rooms.
Good for Lilly to have happy memories of the hospital for when she next
visits.
On Lilly's insistence, we drove Ice Block straight to Poppy's house on Phillip
Island. Lilly had a nice evening with Poppy laughing and playing and eating.
We then went home and Lilly snuggled into her beautiful bed. Let's hope we
can have some precious moments at home before the next chemo session
begins, in fact we are due in at RCH this Friday but Mum is trying to
postpone until Monday so we can have the weekend on the island.

January 29

Lilly slept until midday then had a happy day with Mum and Indi, Loo, Bells
and Tolly. So nice to see all the kids playing together and dancing to "Rock
around the clock" I think Lilly appreciates some degree normality even if she
is sitting in a hospital bed.
No vomits today and Lilly even ate some food! Thank goodness for Mum's
bacon soup. Her neutrophils are up to 0.26 Lilly looked after Col tonight and
she refused to sleep, preferring to watch a movie and read "George and the
Dragon... named Harriet" instead. When that was all over Lilly was content
to be cute and playful being tickled and hiding under brown blankie, giggling
whilst Colin searched the room looking for her.
She was due for a finger prick at midnight so we just stayed awake for it. No
point sleeping for an hour then being rudely awoken and pricked and stressed.

January 28

Lilly slept well despite a 1am vomit. She had a good morning with Mum and
Indi, then she slept all afternoon. Colin watched over Lilly tonight and Lilly
had a nice evening after she cried and cried for Mum for half an hour. She
played and danced ("I like to move it move it") and watched sections of her
favourite movies. Lilly is becoming more affectionate and tonight she was
cute and playful and cuddly. Mum and Indi came to say goodnight and they
both received kisses and cuddles from Lilly. She even asked Col to make
spoons and fall asleep with her. You can't help but love her dearly. Lilly's
platelets are low and will get a transfusion if her bone marrow is not showing
signs of boosting platelet numbers. Lilly's white cell count is slowly climbing
up to 0.5 today but her neutrophils are only at 0.06.

January 27

Lilly was OK today except for a huge runny jobbie that flowed upwards out
the front of her nappy and covered her pipes and taps. What a job cleaning
that up, then making it all sterile again. Poppy cared for Lilly tonight and she
kept him awake till all hours insisting that he dance to the theme music of
Hairy Maclary. Lilly's white cell count started to register today at 0.1.

January 26

Colin underestimated how much wee wee a nappy can take and Lilly
removed her own nappy during the night - clever girl. She awoke to wet
sheets and did not want them changed, so Colin picked her up kicking and
screaming while the nurse changed the sheets. Lilly was so upset
demanding for Colin to unhand her. When this did not happen, Lilly used
her last line of defence - she did a wee! Rule One - Put a nappy on Lilly
prior to stressing her out Rule Two - Bring a change of shorts. Both rules
were broken by Colin. You would think it was his first day on the job! With
a new nappy, dress and sheets, Lilly had a truly happy day, and wearing
a pair of scrubs pants from surgery, Colin had a happy day with her.

Fritz came to visit, as did Greg and Craig. We all sang and danced, played &
read books. Uncle Craig even told one of his magical stories. Fritz got a
hug from Lilly when said goodbye and Colin got his first kiss from Lilly in
many weeks. The photographer from The Age took a thousand shots of
Lilly and she was smiling and looking totally cute. Mum and Indi arrived in
the afternoon and Lilly and Indi made cups of tea for everyone. Auntie
Jess visited in the evening and watched the electrical storm with Lilly and
Lilly gasped at each lightening bolt. Lilly ate a little and drank a lot today.
She did two of the runniest jobbies ever seen as well as a little vomit.

January 25

Lilly slept well but woke up with a huge vomit, just as we thought she
was getting better. She picked up however and proceeded to have a
brighter day with normal temperatures. She was so good for the nurse
who came in to take blood samples. Nell and Colin were interviewed by a
journalist from The Age newspaper, for an article on Lilly. She is going to
be famous. Lilly was looking after Colin tonight and she had a great time
playing with Play Doh, singing about the Little Green Frog -
"Lah de da de dah", and dancing to the Hairy McClary theme music.
When it was getting late and Lilly told Col to keep his voice down because
there were kids trying to sleep in the other beds. Such a kind, considerate
little girl.

January 24

Lilly's feeds were continued after a fresh dose of anti vomit medicine.
Nell had a blue with the nurses over where Lilly's blood should be taken
from - Lilly psyched herself up for a finger prick, but the nurses wanted
to find a vein. Nell insisted they use Lilly's central line (The big pipe and
tap system going into her jugular) There was a standoff but Nellie stood
her ground. Someone has to fight for Lilly. Imagine sticking an unnecessary
needle into her arm without Angel Cream - for skin numbing. Lilly's nose
tube got blocked today when her feed was disconnected for a 10 minute
shower.
Lilly was given medazalan in the evening and when she was nice and trippy
and giggly, they dragged the old tube out and shoved a fresh one - all
32 cm of it. It was hard to watch as we held her arms and Lilly protested
albeit feebly due to her sedation. We should all get nasal-gastric tubes
inserted just to appreciate what Lilly is going through and maybe care for
her better. After the trauma of the nose tube trauma Lilly blissed away on
her little high for a few hours. She was just like a few months ago - happy
and sweet and amazed by everything. We will have her like this again soon.
Lilly was so mellow that she even ate!!!! Fish cakes, mash and a piece of
broccoli "I ate a little green tree" Lilly picked up a piece of cheese, grinned
and said "Cheese Gromit" then ate the cheese. It is great to see that her
education is progressing despite her time in hospital. Uncle Craig brought
Indi and Lilly was so happy to see her big sister. Nanny stayed with Lilly
tonight. Only one small coughing vomit today.

January 23

The overnight feeds were met with vomits so they were stopped and the
IV fluids into Lilly's blood were increased. Lilly is sad and hungry but feeling
a bit better after the blood transfusion overnight. Lilly's temperature just
topped 38 and they decided to start preventative antibiotics. We wanted
to wait and see her temperature again in 30 minutes time because she has
had so much antibiotics over the past 6 weeks. She dropped to 37.4 but
the antibiotics went ahead anyway.

January 22

Up early to a vomiting Lilly. She had a horrible morning with the same
strained vomits with an empty tummy. She is poisoned with chemo, has
had no nourishment, little fluids. How awful Lilly must be feeling, especially
since it was 40 degrees outside. We decided to panic, so we called RCH
and they told us to get to a hospital. We got to Monash Medical Centre
and Lilly was pampered by caring doctors and nurses. They determined that
Lilly's nose tube was still in the right place in her stomach, but her blood
counts were low, so she spent the night in hospital with Mum receiving IV
fluids and a blood transfusion. They tried to feed her through her nose tube
but she kept vomiting. The plan is to feed her via her blood then slowly
start feeding her tummy some time tomorrow and keep her under
observation until the vomiting stops. We think she fell asleep feeling
better than this morning.

January 21

Lilly was wide awake at 7.30am. Good for her but not so good for Nell
and Col who were due for a sleep in. Lilly was a bit moody but mostly
bright in the morning. Mum went to RCH in the afternoon while Lilly slept
and when she woke she was desperate for Mum. She was so upset and
she cried and cried. Lilly then spewed her guts out. Out came all the
water and juice she had been sipping with such explosive force, that it
splashed out of the vomit dish and onto Lilly's blankie. Her little body was
heaving and shuddering as she convulsed, letting out little wails as she
inhaled. We were warned that this was the most nauseous of the chemo
drugs. When it was over, blankie had to be washed and without her brown,
haggard, life supporting blankie, Lilly was inconsolable. She wept and wept,
not even Austin Powers and Mini Me could cheer her up. Luckily it was 39
degrees outside, so the blankie dried in 10 minutes on the line. Mum came
home and put Lilly to bed and her world was OK once again, except that
she vomited again. Has this girl absorbed any fluids at all today? She
hasn't eaten for 5 days and is getting more emaciated. We decide to
panic tomorrow if the vomiting continues.

January 20

Lilly awoke at 9am again with a huge vomit. Well it would have been
huge, if she had eaten anything over the past 4 days. Instead it was a
gut wrenching series of spasms and gasping for breath while some spit
and mucous is coughed out. She must feel so rotten. After a few minutes
she wipes her mouth and says "Can I watch a video now?" Lilly tried to
watch her new movie but was interrupted every 30 minutes with waves
of nausea... poor little squirty. We gave Lilly a bath and she hated it,
yelling and struggling - Lilly used to love baths. She also hates having
nappies changed preferring to wear the full morning nappy for as long as
possible. She should be getting better by now because the chemo is only
active for a few days before her little liver and kidneys purge out the
poison.

January 19

Lilly awoke at 9am vomiting. What a crap way to start the day. We
visited Claire and Gavin and their two boys this morning, but Lilly felt ill and
not even her beloved cousins Lewis and Gareth could cheer her up. We
went home and Lilly laid down feeling pretty low and sad and tired. Lilly
is drinking lots of water but not eating. We tried to feed her through her
nose tube but she vomited after a few minutes. The vomits are these
strained dry reach type sessions that are awful for us to see and must be
just rotten for Lilly to go through. Mum bought a new movie - Willy Wonka,
which Lilly loved except she fell asleep half way through. Find some peace
in sleep baby girl. Mum decided to shave her head as soon as Lilly woke
up! What a brave mummy. The sun was shining and Nanny and Poppy
came to visit, as did Lou, Bells and Tolly. We put a chair out in the back
yard and took some before photos. Mum checked with Lilly one last time
to ensure that it was OK to cut off Mum's thick, long hair. Lilly nodded
and Col started clipping. A few minutes later it was all off and Mum looks
gorgeous, although she feels a bit strange. Lilly approves.

January 18

It was a rough night in hospital for Lilly, vomiting a lot. She had a quiet,
sad day dry reaching all the time. Poor poor Lilly. We stopped her feed
pump. Her final drip had to continue for 24 hours after the last chemo
session, so at 8pm Lilly was disconnected from all the tubes and pumps.
After that, we had to change the dressing on the exit wound on her
chest (just to cheer her up) This procedure is not so painful but the
sticky bandage has to be peeled away while the tube entering her chest
is held tight so that it doesn't get pulled out. Then the nurse has to
clean the entry site with a swab and those bits of dried blood can be
stubborn. It isn't nice thinking about it. Imagine being held down while it
gets done to you! Lilly was so brave so we held her down again in order to
change the tape that fastens her nasal-gastric tube to her cheek. Then
for a finale, the nurse gave her a jab in the thigh. Lilly was so upset but
when it was done she asked, "Is it finished?", wiped her eyes and thought
about something else. Such a brave girl. Lilly's neutrophil count has only
dropped to 2.8 so we have a few days before she is neutropenic, so we
are going back to Phillip Island for a while. We packed up Ice Block and hit
the road. Lilly loves leaving the hospital and she likes leaving Melbourne
because we drive through the tunnel. Lilly slept after the excitement of
the tunnel, and her head hit her pillow in her beautiful, familiar bed just
after midnight.

January 17

Lilly slept in late again. We had to wake her to prick her finger for her
daily blood test. At first she refuses with all her might, but a few minutes
later she bravely extends a finger and allows the pain to begin. Just a
little bit of control retained by Lilly. Lilly is hungry but refuses to eat
anything. She is feeling poorly and the vomiting started in the afternoon.
After keeping the chemo at bay for 4 days, it has finally caught up with
her. Dr Waters speaks with Nell and explains that there was some initial
confusion but the cancer has indeed been in Lilly's bones from the start.
He also mentions that bone involvement is either bad or very bad. We are
shocked, sad, upset and angry all at once. How can such an error in
interpreting the bone scan be made? We are assured that the treatment
doesn't change and the prognosis is still as good given the promising
response to the chemo so far. Lilly gets her final dose of chemo
(Cisplatin) in the evening and goes to sleep feeling lousy.

January 16

Lily slept in late. She is slowing down now as the chemo starts to
envelope her in nausea. This evening she receives two chemo drugs,
Cisplatin and her final dose of Etopiside.

January 15

Lilly slept well except for a few coughing fits. There is only one other
child in her ward so it is nice and quiet. Lilly woke up very bright and
happy but was soon brought back down with a finger prick. Lilly cried and
cried for about 10 seconds then she got on with her day which consisted
of playing, reading and walking around the ward with her IV trolley in tow.
Lilly slowed over the day, ate very little and slept all afternoon. The chemo
has taken Lilly's appetite so Mum juiced up a blend of carrot, beetroot,
spinach and parsley and squeezed it into Lilly's nose tube. Luckily for Lilly
she was not required to drink it. Lilly had a boggy free day. Her past 8
weeks have been a constant run of boggies and boxes of tissues. Lilly is
given Cisplatin and Etopiside in the evening.

January 14

Lilly slept well and woke up smiling. Where is the nausea we saw last
time? Nanny and Pop and Tam and Arden come to visit and Lilly has a
nice day only feeling a bit yuk towards the end. Lilly is given Cisplatin
and Etopiside in the evening.

January 13

Lilly had a big sleep in, then we played in the starlight room for a while.
We met Dr Marty and he gave us the results of the scans: A urine test
displayed no evidence of neuroblastoma activity. One bone marrow
sample was clear of cancer. The other bone marrow sample seemed to
be clear but there are a few odd looking cells that will be identified
on closer analysis over the next few days. The CT scan showed that the
main section of the tumour has decreased by about 30% and the smaller
section by about 70%. The bone scan showed a significant reduction in
skeletal involvement We were overjoyed, although the doctor was reserved.

Then it occurred to us that we were told 6 weeks ago that there was no
cancer in the bones. Dr Marty tells us that this cycle of chemo involves
different drugs than the last two cycles and is likely to make Lilly more
nauseous that before. This chemo will also be administered for 5 days
instead of two and Lilly will be in hospital for at least 7 days. We ask if
Lilly can start chemo tomorrow so she can surprise her Auntie Jess at her
21st birthday party tonight but permission is denied Lilly is once again
admitted and then given her first dose of Cisplatin after a few hours of
saline drip to dilute the chemo waste and flush her kidneys, liver and
bladder. Lilly spent the afternoon with Uncle Craig and she was in a playful
and giggly mood. It is heartbreaking knowing that we are about to take
away her smile and again plunge her back into the depths of sadness and
pain. Mum's potato, corn, bacon and chicken soup was a winner and Lilly
scoffed a whole bowl.

January 12

Lilly was unimpressed at being woken at 7am but not as bad
as yesterday. We stopped her food pump at 4am and her scan was
delayed until 11am so she was very hungry. They gave her the gas and
she was away for another CT scan and a bone marrow aspirate. We saw
Lilly an hour later in the recovery room and she was upset but not angry
and violent like the last time. She did like the two new bandaids over the
drill holes in her hips. She was monitored for an hour, and Lilly ate some
yummy organic grapes and strawberries and watched a movie. We had a
big sleep in the Motel then Indi came with Auntie Jess and Biggles came
to visit with Noah and everyone went to the starlight room, except for
Lilly who was still asleep. Later in the evening, we went to the Fitzroy
Gardens. We saw the dolphin fountains and had a lovely time playing in
the fallen oak leaves. Beautiful, happy, giggling moments with Indi and Lilly.

January 11

We had to wake Lilly at 7am to make a 10am appointment at RCH.
We had to drag her to the car because she did not want to go back to
hospital. As we drove, Lilly was pleading for Col to stop the car and
turn around and go home again. It was really horrible. Lilly's appointment
was postponed for an hour so we went and played in the starlight room.
When we got to the nuclear medicine department, Nurse Pip looked after
Lilly with such kindness. The radioactive injection was traumatic because
it bloody well hurts. Then they expect Lilly to lie still for 10 minutes
while the machine whirs close to her face and body for the initial scan.

Lilly refused to lie still, so we had to we used seat belts and hands to
pin her down. So sad for Lilly. Three hours later Lilly gets a sedative
but she wakes up on the scanning bed and starts to wriggle about all
distressed, poor kid. A second sedative sends her away with the fairies
and the scan is completed. We all stayed in a motel tonight. We had
Vietnamese food in Victoria St then to the Victoria night market which
Lilly loved because it was a party just for her. Lilly was an angel, eating
strawberries and dancing in front of the musicians. Such a cute kid.

January 10

Lilly woke up so fresh and happy. Her wicked sense of humour has
returned and she is giggling without being tickled. She is such a beautiful
person. She is not as photogenically cute as 10 weeks ago due to her losing
her golden hair and being so thin with a saggy eye and a crooked smile, but
within her frail body is the same kind, gentle and loving little girl that
we have seen growing up for the past few years. She is still so beautiful.
It is sad to think about putting her through the next round of chemo in a
few days time, just as she is loving life again. W can only trust to hope
that the scans over the next few days show a reduction in the cancer.

January 9

Yet another lovely day with Lilly. A photographer from "Coast" , a
local magazine, came to take some shots of Lilly for an upcoming feature.
She is quite the celebrity but eventually got fed up with the paparazzi
following her around the yard. We had dinner with Col's family to
celebrate Granny Franny's birthday where Lilly ate and drank, laughed and
played. We then walked down to the beach after dark. It was very exciting
making sand castles, burying kids and playing in the water until a big
wave came and bowled Tolly over. Today was the first day in 7 weeks that
Lilly has not watched a movie.

January 8

Another gorgeous day with Lilly, who is gaining strength and laughing
more and more. She is still a bit weak and is not too keen on walking
because she says that her legs are all wobbly. Lilly wanted to get her
feet wet, so we went to Red Rocks Beach and had a special time with Lilly
and Indi, playing on the rocks, looking for crabs and making sand castles
and tunnels.... And of course we all got our feet wet.

January 7

Lilly woke up smiling. We all went into the living room and there were
presents under the christmas tree which made Lilly smile even more and
made Indi race around in an excited frenzy. Merry Christmas Lilly and
Indi!!!!! A bit late but the girls can't read the calendar anyway. Lilly
carefully opened each present, played with it for a while then rested
then opened the next present.
This is going to a gorgeous, long day. We met Col's family at the beach
in the early evening and Lilly got her feet wet. Then she sat on the sand,
made a sand castle and ate a grape. This is the first piece of food Lilly
has swallowed in over 5 weeks!!! Such a fantastic moment. Lilly was on a
roll eating the entire bunch of grapes then spaghetti later on. Then she
played with her sister and her cousins. So beautiful to see her enjoying
life again.

January 6

Lilly has more energy today, slowly feeling better. It was a warm day and
we went to Red Rocks Beach for a while in the evening. Lilly and Indi sat
on the sand watching over Mum and Col who went in for a swim in the
beautiful warm water.

January 5

Another sleepy day. Lilly seems a bit sad.

January 4

Lilly slept all morning, slept in the arvo and crashed out at 11pm after
a quiet, subdued day

January 3

Lilly came home from the hospital today. She gets scared about being
unplugged from the pumps and leaving her bed, but after a few minutes
she wants to go home. At home, Lilly is on antibiotics and she is feeding
via her nose tube. So nice to be home.

January 2

Another day out of the room. We ventured outdoors today into the Peter
Rabbit playground where Lilly stood up and shuffled around a bit. She
loved the water wall - typical Pisces. We dragged her trolley across the
playground and Lilly went up into the cubby house and down the slide, very
tentative but grinning all the way. Such a joyful moment for Mum and
Collie too.

January 1 2006   -  Happy New Year Lilly

Lilly's white cells are growing again, so the doctor allowed her to leave her
isolation room. Lilly could not walk - she has been in bed for about 30 of the
last 38 days and her leg muscles have wasted away. We carried Lilly with her
trolley and IV pumps in tow. Such a relief to leave the room and get out of the
ward for a while. Lilly sat on a kids ride in the hospital foyer and smiled.


This diary will be updated soon, please check back for future updates.