LILLY'S DIARY
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February 28
Lilly slept in then had a beautiful relaxing day with Mum. In the
evening, Lou came to visit and the girls gave Colin a cake and sang Happy Birthday
for tomorrow.
February 27
Lilly had a beautiful day with Mum while Colin made a rare appearance
at work. Lilly is feeling good and her wicked sense of humour and love
for life is back in full force. She played on the trampoline, fed the
chooks and collected 7 yummy eggs. Poppy came to visit in the evening which
always makes Lilly happy. It is the most adorable sight when Lilly laughs and
giggles without the aid of a tickle. Such a pure and natural
expression of happiness.
February 26
Up early for a huge day. First we all went to Luna Park for an event
for cancer kids and families organised by Challenge. Lilly and Indi had a
ball and Lilly finally got to ride on the Merry-Go-Round again. It was a
beautiful sunny day, we met other kids and their families and the girls
had such a good time, just perfect.
Many thanks to Challenge and its volunteers for organising such a
fantastic day. You can read all about them at www.challenge.org.au
After Luna Park we went to the zoo for another special event. The bald
gang organised a twilight gathering at the zoo and it was incredible.
Thanks to Steve for organising everything and for the friendships and generous
support the club is giving Lilly. You can read all about them at
www.bald.com.au
We walked around the zoo looking at the butterflies, reptiles and
elephants. We were having such a good time when Lilly fell over and smacked her
forehead on the concrete path, giving her a cut and a huge bump. A
caring ranger helped her get first aid. Lilly only cried for a little while
and she was quite happy when she got a band aid on her forehead. The
ranger took us to the giraffe compound where Indi fed a leafy branch to the
enormous male giraffe. He got so close to Lilly and Mum and Lilly was
in awe. His head was bigger than Lilly. Such an incredible moment to
share with the girls.
In the evening, there was a concert by a Kylie impersonator and as soon
as the music started, Lilly started to boogie. She didn't stop smiling.
This girl is so full of life and so many people commented on how gorgeous
and happy she is. Indi loved the concert too and a kind lady named Jodie
got us backstage for a photo session with "Kylie" Lilly wasn't sure what all
the fuss was about but Indi was so excited.
The girls collapsed in the back of Ice Block as we headed home after
the busy day.
February 25
Lilly is doing brilliantly. She romped at Rhyll beach with Indi and
Bells - building sand castles and stomping on mum's. Had a fantastic dinner at
Poppies where Lilly ordered and rejected 3 cheese and biscuit serves and two
vegemite toasts. Thank Buddha for naso gastric feed tubes!
We find out on Wednesday the results of her scans.....coincidently on
Colin's (39th) birthday. May be the best birthday ever. He deserves it. X
February 24
Lilly had a great day just enjoying being at home. We had dinner with
Lou and Bells and Toli then we all went to Red Rocks beach and Lilly loved it.
She got her feet wet, made a sand castle with Mum and climbed over the
beautiful red rocks. Lilly's strength is returning to her legs and she
gained confidence running through the sand and retreating from the
waves.
February 23
We hauled Lilly out of bed early for her final scans. She was given a
general anaesthetic using the gas mask which totally freaks the girl
out.
She stopped fighting after 20 seconds and then they drew bone marrow
from her hips and gave her a full body CT scan. Lilly came out of the
anaesthetic very distressed and angry, but Mum soothed her and she
slept for an hour or so. When she woke Lilly was fine and insisted on going to
the Starlight Room, where she met the cast of The Lion King which was very
exciting.
We packed up and hit the road and got back home to wonderful Phillip
Island after more than 2 weeks away. Lilly wanted to go and visit Nanny and
Pop and especially wanted to see her sister Indi again. It was good at
Nanny's house. Lilly ate a sausage and rode her bike, then it was time to go
home and collapse in Lilly's beautiful bed after such a huge day.
Lilly is a child of the earth and we ask the angels to fill her body
with beautiful energy and white light so that Harry Potter can be strong and
run around Lilly's body saying "Expecto Petronum"
Lilly is a child of the earth. Lilly is very special. Lilly is
totally loved. Lilly is going to be OK and she is going to live a beautiful
life making people feel happy and loved.
Some nights we say the above prayer to Lilly and she closes her eyes
and seems to be at peace. Tonight Lilly asked to hear "Lilly is a child of
the earth".
February 22
Lilly spent the day with Mum and Uncle Damian at the zoo. Lilly has
not seen most of these animals in real life before and she was amazed. She
especially liked the gibbons, the giraffes and the elephant that was
being washed... and the turtles were her favourite also.
Lilly was sad that the merry-go-round at the zoo was not operating
because she has a special love of them. Life is a series of moments and today
was filled with hundreds of them... all incredible for Lilly. Thanks Uncle
Damian for a fantastic day.
February 21
Up early for Lilly's bone scan. The first stage is a radioactive
substance which they injected into her Hickman line and Lilly greatly appreciated
the absence of a needle. Lilly kept beautifully still on the nuclear bed
for 10 minutes while the soft tissue scan took place. Lilly was told that her
angels will look after her today.
We then went upstairs for her final dose of chemo - vincristine. Lilly
met Bronte who is a beautiful little girl with a black balloon in her tummy
just like Lilly. We hope and pray that Bronte feels better with each day.
After her chemo, Lilly raced into the Starlight Room with glee. During
most of her hospital visits, Lilly is confined to a bed, attached to various
pumps and not allowed to go to the Starlight Room, but today she was
free and she loved it.
Lilly went back to the nuclear department and was given a sedative for
the second stage of her bone scan, during which she must lie still for 50
minutes. The sedative was administered through her nose tube and she
immediately vomited. They gave her another dose and Lilly eventually
became drowsy but when Mum laid her on the scan table Lilly woke and wanted to
go home. She wouldn't keep still and finally had to be restrained with
straps.
So rotten to have to restrain this gentle little girl.
After the ordeal, Mum carried Lilly to Ron's House as Lilly crashed out
in Mum's arms, out cold. She slept for 4 hours then woke in a pool of
dribble.
Lilly and Col went to the park on Lilly's insistence and Lilly laid
down on the grass. She took her hat off, rubbed her head against the soft
grass and said "ohh the grass feels nice" Lilly is a child of the earth.
February 20
Lilly slept in then had a huge day full of games and smiles. She was
so full of energy that it was hard work keeping her occupied. Luckily
Auntie Georgie came to visit.
In the afternoon, the doctors announced that Lilly could go home. This
was very sudden because her neutrophils have not yet recovered, but Lilly's
temperature has been normal and there have been no signs of germs found
in her daily blood tests.
We spent hours moving out of her hospital room due to all the gear we
had accumulated over the past 7 days. Lilly had one final injection into
her tummy which she stressed about but never felt it go in. She was most
surprised when the nurse declared that it was all over.
We went over to Ron's House and Lilly was dying to get out amongst the
kids' playground considering the Starlight Room was closed. She was just
unstoppable. Lilly found a tea set in the cubby house and insisted on
making cups of tea for us. She has had plenty of practice over the
past few weeks in her hospital bed. We played Hide And Seek and Lilly The Scary
Monster in the park for ages. She is a total joy to spend time with,
so full of energy and life. The downside was that she couldn't sleep and
had to watch a DVD to settle down. She has a big day tomorrow with an
early start. The time has come to re scan and assess the success of the
chemo and other remedies that Lilly has been subjected to.
February 19
Lilly did a huge dark flaky poo at 3am. Such a stark contrast to the
usual pumpkin soup jobbies of late. We believe she has pood out her tumour.
Lilly woke at 11am crying for Mum but she was on her feet and dancing
to Rock Around the Clock at midday.
Mum came to visit in the afternoon and Lilly was so happy to see her.
They played a few new games like Hungry Hippos and drew pictures on the Mega
Sketcher.
Lilly did a big vomit and she held her nose tube in place as she
retched. Such a quick learner. Lilly had a stressful shower and a stressful
dressing change. Mum slept a Ron's house while Colin stayed with Lilly.
Lilly has lost all her lower eyelashes and has only a few upper ones.
February 18
Poppy and Nanny looked after Lilly this morning and bought her some
rubber lizards, frogs and spiders that stuck to the ceiling. Lilly loved
watching them with bated breath as eventually let go and fell onto her bed.
Anticip........ation.
Colin looked after Lilly in the afternoon and it was filled with
puzzles, making cups of tea and plenty of smiles. It is amazing how Lilly can
play hide and seek over and over again when she is literally tied to the bed
in a small room.
Fritz and Weenie and the Luecke kids came to visit which was really
nice. Lilly likes Zach. They also left some good food for us.
Lilly slept from 5 -10pm. When she woke she watched her new DVD from
Auntie Lanie. It is a documentary about sea life and there is some stunning
footage of killer whales killing seals, ripping them to bits then
flinging them into the air. Perfect bedtime viewing for the perfect child.
Lilly misses Mum who is still a bit ill.
February 17
Lilly had a restless night with a few dramas, like when they thought
her new nose tube was blocked at 3am. Nanny woke Col up early so he could go
to work.
Poppy came in during the afternoon to help out. Mum still has a bit of
a cold so she must stay away for another day or so. Lilly looked after
Poppy tonight.
February 16
Colin came in to do a shift and Poppy went to work. There was a bit of
trauma when Lilly woke and did a huge vomit that strained and hurt her. The
convulsions were so severe that her nasal tube was forced out of her nose.
This was followed by more drama as the medical tape holding the tube to
Lilly's face was removed. Lilly cried as the tape pulled at her wispy girly
hair just under her ear.
The doctors came to visit and were quite happy that Lilly was OK and can go
home once her temperature subsides and her neutrophils recover. They were
zero today, so Lilly won't be home for at least another 5 days.
Lilly did a huge runny poo which flowed upwards out of her nappy and all
over her tummy. It filled her belly button and covered her sub cutaneous
pipe and tap. Man what a clean up effort. Poor Lilly was so upset and kept
saying sorry. Poo all you want Baby, we will clean up a million times
without a word.
Uncle Dan spent the day with Lilly making cups of tea, using play doh and
generally feeling good. She is not as bright as yesterday but still OK,
just not firing on all cylinders.
In the evening, Lilly was given a sedative via her nose which was very
yukky, but all was forgotten a few minutes later when she was flying high
and blissing away as a warm face washer was run over her head and face.
There is a mural of fairies covering an entire wall in Lilly's room and she
was entranced at the sight.
The sedative was given for a reason and the reason soon became clear when
Colin carried Lilly to the treatment room. Lilly panicked begging for us
not to touch the sticky tape on her booby. Sedated yet lucid. The next 30
minutes were truly awful.
Firstly Lilly's IV pipes were replaced which went well once Lilly realised
that we were not about to rip the tubes out of her chest.
Stage two was to change the dressing on Lilly's booby and Lilly hated it.
Step three was removing the old sub cutaneous line in her tummy and
inserting a new one. This was hard to watch and you could see how rotten it
was for Lilly as you held her arms and hands.
Stage four was the insertion of the new nose tube. Lilly was pleading for
it not to happen as she was laid on her back. As the tube went in, Lilly
gagged and vomited. The look of desperation in her eyes as she choked was
so hurtful to see. The panic she felt as she was choking must have been
terrifying, especially with being too weak to sit up herself. We sat her up
and Lilly vomited some more and cried and cried. Once the new pipe was
taped down, Lilly dried her eyes and thanked the nurses.
Lilly then had a quiet evening watching a video, feeling a bit sad. She
must hate it when she is not in control and people are restraining her.
February 15
Mum woke up feeling crook, so Poppy left work to act as last minute
substitute. Lilly had a nice day with Poppy keeping her spirits bright. An
isolation room became available and Poppy and Lilly moved into a giant
private room - very very nice. Lilly crashed out at 5pm and slept through.
February 14
Lilly had a restless night and woke early with a slight temperature. Mum
took her across the road to RCH for blood tests and a meeting with the
consultant, who sent Lilly down to Emergency for monitoring, where she spent
all day in a small isolated cubicle. The blood tests showed a low platelet
count so Lilly received a blood transfusion. Her temperature continued to
rise and the antibiotics were administered yet again.
Neutropenia generally occurs 7 days after chemo, so we were half expecting
this but half hoping that her excellent health would keep her out of
hospital during her week without an immune system.
There were no isolation rooms available in RCH so Lilly spent the day with
Mum in Emergency. Thanks to Uncle Dan and Uncle Damian for being there to
help out today.
A bed became available later in the evening up on 4 West, which is a newly
refurbished ward - very nice.
February 13
Colin came to visit now that he is well again and Lilly ran toward him along
the corridor at Ron's House for a squeeze. Lilly's feet got a bit crossed
and she fell on her face, but she picked herself up saying "Got wobbly legs
Col" then walked up and hugged Colin for such a beautiful long time. How
could a bloke want to be anywhere else but in this girl's arms.
A TV crew and a journalist from The Today Show came to visit Lilly today.
They want to do a story and Lilly was the regular movie star, with makeup
people on hand to sort out the occasional boggie. Lilly was her usual cute,
sweet, gentle self and we hope the camera captured her gorgeous character.
Lilly, Mum and Colin went for a walk in the warm evening to a little Italian
restaurant for dinner and it was really nice to get away from the hospital
area. The walk back to Ron's House took ages with Lilly insisting on
walking on every strip of grass and bluestone step. It is so beautiful to
see her full of wonder at the simplest of things like motorbikes, taxis,
trams and doors. We took another lesson from our little teacher, slowing
down, enjoying the journey and worrying not about the destination.
February 12
Lilly and Indi went to the most incredible fairy party today, but Lilly was
a bit off and spent most of the party in an upset state and very demanding.
Lou took Indi back to Phillip Island for school tomorrow and Mum and Lilly
slept at Ron's House.
February 11
Another fantastic day for Lilly playing with Mum and Indi in the playground
and kids' rooms at Ronald McHouse. Lilly is the healthiest she has been in
months and it is such a blessing to see her finding such joy from life.
Lilly said "You're the best Mum in the world"
Poppy looked after Lilly tonight while Mum went out for a night on the town.
Happy Birthday Lou.
February 10
Lilly is just amazing, showing no evidence at all that she has just had
chemo. Such a happy day with her Mum, full of joy and happiness, playing in
the playground and then over to the Starlight Room at RCH. Lilly is staying
at Ron's House, just across the road from RCH, for a week or so until her
immune system recovers.
Lilly watched Toy Story, her new DVD from Uncle Damien, then enjoyed the
evening with Indi and Nanny. Colin is still unwell and can't visit in case
Lilly catches his cold.
February 9
Another beautiful day for Lilly, although an early morning finger prick
stressed her into a coughing fit and a little vomit. Uncle Damien spent the
day with Lilly and Mum and had a lovely day with the girls.
Lilly was on TV today!!... well it was only the RCH channel but she was
still on the telly!!
Lilly's nose tube got blocked so she had to have it removed and another one
shoved in - all 32 cm of it. It makes you cringe just watching it so it
must be a truly awful experience for Lilly. She then had the dressing on
her Hickman line changed which must be so rotten also, having people tugging
and cleaning the tube protruding from her chest. Finally, Lilly had an
extra injection in her tummy and they left the bits inside her so Lilly now
has a new pipe and tap. She has to get a daily injection for the next 9
days.
Lilly was discharged in the afternoon and spent the evening at Ronald
McDonald House. Or as Lilly likes to sing... "Whose house? Ron's house
Say what? Whose house? Ron's house" See the film DOGMA and you will know
what Lilly is singing about.
Colin came to visit and bring supplies and he got the warmest, longest hug
from Lilly that made him melt. He had to leave quickly because he has a
cold and Lilly's immune system is on the way down and any germ can send her
to hospital for days and days of hell.
We still cannot believe how healthy Lilly is after 2 days of intensive
chemo. There must be some good in the witch's brew that Mum prepares each
day in her mortar and pestle. Hubble, bubble, toil and trouble.
February 8
Lilly slept well except for a few nightmares calling out to "Harry". She
had a happy day, taking the second dose of Cyclophosphamide in her stride.
Where is the nausea? Lilly had music and art therapy, then she was caught
on film singing about the Little Green Frog - "Lah de da de dah". Stay
tuned for her TV debut tomorrow. Lilly then she slept all afternoon, waking
just in time to keep Poppy up until midnight.
February 7
We had to wake Lilly early to get her to RCH and she woke up very bright and
was actually looking forward to going. A far cry from the last hospital
trip on January 11th.
Straight to pathology for a blood test which was very stressful for Lilly
especially when the first finger prick stopped bleeding and they had to use
another finger. She was so brave, loved her two bandaids and even thanked
the nurse for making her better.
After the blood test Lilly made a bee line for the Starlight Room where she
forgot everything and enjoyed the wonder of that magical place.
Lilly was then checked over by Dr Steven and he declared her fit and healthy
enough for another chemo session. Up on the ward, Lilly was impressed with
her new bed and soon made herself at home, then continued to play and giggle
all afternoon. Such a happy kiddo is our Beatrix! She received lovely
gifts from her great uncle Damien in Tasmania - a cuddly devil and a book
about devils.
Lilly was dripped up for a few hours before receiving her chemo
(Vincristine, Doxorubicin and Cyclophosphamide) We waited for her to turn
green but she kept on smiling. Lilly looked after Colin tonight while Mum
got some sleep. Mum and Colin are feeling a bit run down.
We met with Chrissie and Kevin today, the parents of Willow. We can't
imagine how crushed they must feel, suddenly losing their little girl. The
three of them are constantly in our thoughts.
February 6
Indi insisted on taking the bus to school - it is her second week after all,
so Lilly and Mum drove Ice Block to meet Indi at the school to make sure she
got to her prep class OK. Another playful day for Lilly, she is so happy
and healthy and brimming with love and kindness for everyone.
We are dreading taking her back for more chemo tomorrow, starting to doubt
if it is the best treatment for Lilly. She has finally recovered from the
first three chemo cycles even though each one has been so brutal on her
little body. It is so hard to picture her vomiting and feeling terrible
tomorrow. Lilly, however, is not wasting today through worrying about
tomorrow, so we will try to take a leaf out of her book and continue to
learn from our little teacher.
February 5
Very weary day. Lilly got a visit from Maddy and Charlotte then we went to
Poppy's for dinner. Lilly was in such good spirits, playing chasie and
giggling continually. She even had a happy bath - the first one in months.
Mum convinced Lilly to eat her food by telling her the all the Harry Potters
in her tummy will be getting hungry. Lilly thought this was important, so
she gulped down some water also.
Lilly was in an affectionate mood today giving away loads of hugs and kisses
and smiles. Such a darling child radiating love and warmth. Cannot get
enough of this gorgeous kid.
February 4
Lilly spent the day at Waratah Bay at Camp Quality. We were reluctant to do
the whole 3 day camp so we spent a day and evening instead. Lilly had a
wonderful time splashing in the pool, painting, painting Col's face. Mum
painted a flower on Lilly's bald head and Indi painted Mum's face. There
was a party in the evening and we smacked piņatas, had a huge game of Pass
The Parcel and there was also lots of dancing. Lilly had a great time with
Indi and they both crashed when we put them into the car at midnight. Mum
and Col had a nice time also and it was great to meet with the parents and
families of other cancer patients and survivors. Thanks to Leesa for
organising a place for us.
February 3
Lilly had a fantastic day which started with a call from the hospital
telling us that Lilly's platelet count was not high enough yet for chemo.
We are to repeat the blood test on Monday then be admitted on Tuesday. Now
we can spend the weekend together at home... Hooray!!!
A photographer from the Herald-Sun, named David, came to visit Lilly in the
afternoon and he took so many photos. We even went to the beach and got our
feet wet and Lilly enjoyed the attention. She loved the water and the sand
also.
Lilly then had a beautiful evening with Indi, Bells and Tolly. She even ate
all her dinner sitting at the kids table with her friends. Then she watched
a video and crashed out on Mum's bed with all the kids.
February 2
Colin woke up very sick and vomited a lot. This is no good since Lilly is
due for chemo tomorrow and will have no immune system a few days later. To
keep Lilly away from any possible infection, Colin went to work.
Lilly went to the local hospital for a blood test, a very traumatic finger
prick but she was OK a few minutes later. We all had a nice evening
together except for a traumatic bath for Lilly - but she was OK a few
minutes later. Lilly used to love baths, now she is terrified of them.
Colin was OK in the evening
February 1
Lilly and Colin slept in while Mum took Indi for her very first day of
school. Lilly went with Mum to pick up Indi at lunchtime and it was very
exciting to see her sister's new school. After that Lilly came to Poppy and
Col's work for a visit and so many people were happy to see her. Lilly is
looking so healthy, gaining strength and walking around more and more.
In the evening we all had a treat and went out for dinner with Lou, Robyn,
Bells and Tolly, but Lilly started to feel poorly and she had a little
vomit. Lilly was sent home early and at home, Colin was feeling poorly too.
This diary will be updated soon, please check back for future updates.
