Our beautiful lil'
LILLY'S DIARY


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April 30

Another busy schedule for Lilly. Her chemo starts on Tuesday so we intend to maximise her healthy time. Mum and nanny took Lilly back to visit the monks while Colin, Uncle Craig, Auntie Jess went for a ride in Uncle Damian's new boat - the Lilly Blyss is now seaworthy. What an incredible morning. Lilly would have loved the seals.



The monks had prepared a healing ceremony for Lilly and Mum was very touched by the love and care the monks showed her. They even accepted a photo of Lilly promising to pray for her daily. The day was filled with chanting and learning and heaps of playing. Lilly even joined in with a drum troupe from Brasil and picked up the beat very quickly.



Today was such an amazing day full of peace and power, and Lilly racing around tirelessly as usual, winning hearts as she went. Each of the monks said farewell to Lilly, pressing their foreheads against hers - such beautiful moments. We went to Nanny and Pops for a yummy dinner and we met up with Indi who has been on a Challenge Camp - for siblings of kids with cancer. Lilly did not slow down all evening but when we started the car to drive home, Lilly crashed after her busy weekend.



April 29

Lilly and Mum and Uncle Craig went to Churchill Island today to see the Gyuto Monks from Tibet. They did some incredible chanting and they painted a beautiful mandala using coloured sand.



Lilly had a wonderful day with Mum and Uncle Craig.



The monks were so beautiful and kind. They have an aura of strength and gentleness about them and Lilly loved being near them, saying "Those men in the red dresses are my friends"



Later in the afternoon, Lilly went to her cousin Charli's 1st birthday party. It was a huge family reunion and Lilly enjoyed being surrounded by her uncles and aunties.



April 28

Lilly had an incredible day with Uncle Craig and Mum. They walked to the beach with Lilly in her funky new sunglasses and made sand castles and generally played and played and played.





Lilly had such fun, getting her legs buried in the sand , then getting her feet wet.





This evening was yet another joyful time with Lilly. She is full of energy and getting very very cheeky. She did however, protest and scream at the prospect of having a bath, then she hopped in with Colin and didn't want to get out - crazy kid. When it was all over Lilly fell straight to sleep cuddling her new Tweety Bird.



April 27

Lilly had a big sleep in, then she had another busy day doing plaster casts with Mum - painting them all pink of course - she is such a girl! Lilly loved playing on the trampoline for ages with Mum, making the most of the sun before it disappears for a few months. Making the most of Lilly's health before it disappears for a few months also. Mum and Lilly went to pick Indi up from school, then it was time for da shopping!!! A few da's have been lost or chewed recently so it was time for reinforcements. Lilly picked a red and a blue one. Then they rushed home just in time to meet Uncle Craig who had driven all the way from the Otways to see Lilly. Lilly screamed with delight when she saw her Uncle and she jumped into his arms, then raced around the back yard playing chasie and Hide and Seek, yelling and giggling all the while. This evening it was dinner at Poppy's house where Lilly was so full of happiness and energy jumping all over Poppy.

It is so amazing to see her in such excellent health. We found out today that Lilly will start her chemo next Tuesday. It is hard to imagine her connected to her drips being fed drugs that will cause her to be so ill. So we don't try to imagine this and instead we totally enjoy the moments we have with our gorgeous little girl now.

Lilly has been receiving so many beautiful gifts from her Chemo Angels. She looks forward to checking the mail and she excitedly rips open each letter and package. One day we will find the time to acknowledge and thank each of these angels for their loving thoughts and gifts.

April 26

Lilly had a great day. It started with walking Lewis and Gareth to school which was very exciting walking amongst all the school kids. Lewis introduced Lilly to his class and he did such a good job explaining about Lilly's illness and why she has no hair and why there were pipes coming out of her. Lilly showed all the kids her cut - that got their attention alright.





We then went to RCH for Lilly's usual weekly 5 minute procedure. She was so good as Nurse Simone flushed her hickman lines but when she realised that we had to change her boobie sticky, Lilly's face crumpled and she just folded in a frightened heap - poor little girl. It must be awful to have to clean the tube sticking out of her chest and feel the tugging sensation. But Lilly was so good. She stopped crying and held Colin's hands and let the nurse do her job. When it was all over Lilly got a sticker which she gave to Colin - bless her darling little heart. Then it was off to the Starlight Room!!! Lily was so excited and equally shattered when she found the door locked She pulled herself together and we played in the outdoor playground instead. Lilly especially likes the water wall.

Later in the day, we returned to Phillip Island and Lilly was so pleased to see Mum after more than 24 hours without her. Lilly visited Poppy at work which is always such a thrill. At home there was time for a quick play outside with Indi then it was dinner and bed.

April 25

Lilly and Colin went to Colin's farm today while Mum had a quiet day at home. We rode the motorbike (now renamed as SPIRIT) The kid is so fickle. Claire, Gavin,Lewis and Gareth came to visit which was lovely because Lilly just loves the boys. We all went for a walk and Lewis saw a grey kangaroo sitting under a tree. The roo was scared and tried to move away but its leg was broken and twisted. It was so sad so see such a beautiful animal in such distress. We called the injured wildlife service who came at once and decided to call a vet to have the kangaroo put to sleep. Lilly stroked the kangaroo's head just after she died, telling her that it is OK because it is just a little needle.

We went to Lewis and Gareth's for dinner and Lilly had a ball with the boys playing chasie and watching a DVD before bed. Lilly then played the piano for a while then crashed out after such a busy day. We slept over at Lewis' house and we miss Mum very much.





April 24

Mum went to work day... her first day of work since Lilly was diagnosed in November. Lilly spent the day with Lou and had a wonderful day even though it was too rainy to go to see the pelicans at San Remo pier. We greatly appreciate Lou casting her own sick kids aside to look after Lilly so Nell could have her day at work pretending all was normal once again. Lilly and Lou spent the day visiting friends in Woolamai and playing with their kids. She was fast asleep on Lou's couch when Mum went to pick her up - such a busy day.

We all had a bath this evening. Mum, Lilly and Col - a bit squashy. Again the UK readers are asking what is wrong with three in a bath? "When we were young there were 58 of us in the one kitchen sink!" Mum lit candles and turned off the bathroom lights and Lilly loved it in the warm water. She was so still and peaceful - quite a special moment. After the bath she wrapped herself in her Tweety towel and looked very very cute. Still no word from the hospital as to when Lilly is required for her final chemo session. We are relieved because it gives us another day with our little angel.



April 23

Very cold and rainy today. Indi is on holiday with Nanny and Poppy so it was just Mum, Lilly and Col. We had brekky then went back to sleep. It was a quiet day, a little too quiet, so when the rain cleared we went to the beach for a walk. It was so cold and beautiful. Lilly was so excited sitting on the rocks with the waves splashing around her.



We walked around a few points and played hide and seek and climbed over the rocks. The tide was coming in, so we headed back and caught the sunset reflecting off the water. Such a great place to be alive.



At home we had dinner and Lilly had a boiled egg, her second for the day. The chooks are having trouble keeping up with the insatiable Lilly.

April 22

Some bad dreams for Lilly overnight -so scared and confused - poor little kid. We visited the Farmer's Market on Churchill Island today which is very special with lots of good, organic food and friendly people -especially the lamb butcher and the blueberry farmers. Lilly had her usual "away from home" meal - Sausage and bread. We saw the highland cows which looked incredible in the sunshine then it was time for home. Lilly was exhausted and slept all afternoon.

Once awake, Lilly was so happy and incredibly affectionate giving kisses and cuddles all evening. Mum prepared some yummy veggie juice with loads of garlic and spinach for Lilly. You could smell it a mile away. Luckily it was injected into her nose tube and bypassed her taste buds. Lilly also had two eggs in a cup (egg in a cups?) with runny yolks and yummy toast - her usual "at home" meal.

April 21

Mum woke up to find the last of Lilly's new fish in the mouth of Spotty, the biggest fish in the tank. Four little skeletons littered the floor of the tank. Lilly was amazed when she saw the carnage, saying that Spotty was naughty, but we can't take him back to the shop. Quite a philosophical response from a little girl. She then had a really happy day with Mum, playing, cooking and baking cup cakes.

Lou, Bells and Tolly came to visit this evening. Lilly was so excited before they arrived, racing around and burying her head in brown blankie. When everyone arrived, Lilly had so much fun with her little friends. Desert consisted of Lilly's cup cakes covered in chocolate and frozen banana creamy stuff. Yum yum yummy, in Lill's tummy. The kids stayed up watching Lilly's favourite Wallace and Gromit episode - Gromit and the Naughty Penguin.

April 20

Lilly made the most of not having to go hospital today by sleeping in till 10am, then she had a lovely day with Mum. It was cold and very windy and Lilly cruised the island dressed in a hat and jacket. She went down the main street with Mum and so many people stopped her and told her what a great singer she was. Then it was off to the pet shop for some chook food which, luckily for Colin, is right near his work, so he wandered across when no one was looking and spent some time with Lilly and Mum. Lilly chose 5 little fish for her fish tank. These new fish will stay together in a litle school and Lilly was so excited and eager to put them in her tank at home.

This evening, Nanny and Poppy came to visit and Colin gave Poppy a haircut - with Lilly's help. Then Lilly insisted on having her hair cut too, so we pretended to cut Lilly's hair and she was pleased. Mum would have been most irate had we not pretended because Lilly's hair is just gorgeous. Lilly was so full of life today, almost hyperactive. She ate and drank so much today - just like a normal kid! No word from the hospital today so it seems that we have another weekend together. Maybe we will go camping!

April 19

Up early again to drive 2 hours for 15 minutes of hospital procedures. We are just a bit over it. Lilly was so good today. She went to the nuclear medicine dept for a kidney function test which involves injecting some radioactive gear into her wrist. The needle was yukky and Lilly was very upset but when it was over she got a colourful band aid and thanked the doctors and nurses. Then we let her loose in the Starlight Room and she had so much fun painting and playing hide and seek. We met Bronte who also has neuroblastoma and is almost Lilly's age. It was good to talk to Bronte's parents, Andrew and Natalie and we hope that Bronte responds to her treatments and returns to perfect health very soon.

After a while we had to go for a blood test to see how well Lilly's kidneys were removing the radioactive substance and Lilly was so brave for Nurse Simone who gave Lilly so many stickers when it was all over. Back to the Starlight Room and Lilly ran through the doors. Her first running steps in such a long time. She watched a video on the huge screen then it was back for the second blood test. When it was all over we jumped into Snowflake (Ice Block is getting a new stereo fitted today) and Lilly slept all the way to the island where we stopped at Brucie Baby's service station. Bruce and Pam had found a toy flower for Lilly that sings "You are my sunshine..."

At home Lilly ate a boiled egg from Romy the chook, she drank heaps of water and juice then she ate a sausage. We haven't seen her eat so much for so many months. She is such a delight to be with. Her hair is starting to grow and it is the softest thing to feel - like kitten fur. Lilly is playful, happy and so loving and caring. You just want to squeeze and cuddle her and feel her goodness.

April 18

Up early for Lilly's big hospital visit. We met with Dr Waters who informed of us of all the latest news:

- Lilly's tumour was comprised mostly of dead cancer cells and the tumour was completely removed

- There is no need for radiation therapy

- Lilly's last stage of chemotherapy will start in a few days time

- This chemo will be very strong and last for about 5 days and during this time she will probably become very sick

- Once this chemo is finished, Lilly will undergo a stem cell return procedure to assist her bone marrow to rejuvenate

- Lilly's immune system may take many months to recover and start producing blood cells again

- Lilly will have a kidney function test tomorrow which will dictate the amount of chemotherapy given in her final stage

Once all that was over it was straight to the Starlight Room to play with Indi. Lilly had a big hug for Captain Starlight Sarah. Everyone congratulated Lilly on her singing performance during the RCH Good Friday Appeal. Lilly then had to go upstairs for a new dressing on her boobie because the exit wound has been knocked and has been bleeding. The dressing change . was really traumatic for Lilly because it took a few minutes to scrape and wipe away all the old blood and her pipe was tugging on her little chest and pulling out a little bit. She was so brave and she screamed and screamed in order to take her mind off . the yukky clean up job. As soon as it was all over, Lilly wiped her eyes and thanked the nurses. She is such a joy to be with.

The next few months are going to be hard on Lilly. She is so in love with life and she is just unstoppable at the moment. It just doesn't seem right to take her away from that and drag her through the depths again. She is tough and healthy though, and she will be OK. Please keep her in your thoughts and prayers.

April 17

What a chilly night. Lilly woke up on the hour saying how cold she was, so she pulled her blankie up to her neck and cuddled up to Colin. Indi and Mum just froze in silence. Lilly woke at 6am and wanted to get up. As soon as she left the bed she froze and hopped back under the covers. This commotion woke Mum and Indi who left their camp beds and also dived under Lilly's covers. Somehow we all fell back to sleep with the four of us squished in the bed. Any UK readers will wonder what all the fuss is about. Four in one bed! LUXURY!

The sun came up and warmed the tent and we were off and running. Mum made the most delicious bacon and poached eggs on toast, then Colin got the motor bike started. Lilly was terrified of the bike a few months ago but today she jumped on the front, held onto the petrol cap and smiled as we putted around the property. Mum took the girls for a ride too, with Indi on the back and Lilly on the front. We all had such a great time.



Terry and Franny and Auntie Georgie and Charli came to visit. John dropped in again to say hello which was so nice. Before we knew it, it was time to go. Colin took the girls for a trailer ride and gathered some firewood with Terry, while Fran and Nell packed up. We jammed everything back into Ice Block, stopped at Fritz's for a while to drop off the tent. Lilly especially likes Zach, Fritz's youngest boy and she gave him a big hug when it was time to leave. Lilly and Indi fell asleep within minutes of hitting the road. Poppy made us a yummy dinner then it was home to unpack and sleep in our own beds in our warm house. Everyone loved the camping trip.

April 16

Up early to quickly look for easter eggs, then finish packing for our big overnight camping trip. It is all very exciting. The continuous rain over the past few days has cleared and the sun is almost out. This should be fun but could also be a disaster. Stay tuned....

The Big Trip....

We drove straight to Fritz's house to grab his tent as we have not yet invested in one, then straight to Colin's property in Macclesfield. Erecting the tent was a joke as there were no instructions and we had no idea what it was supposed to look like. John Thomas dropped in to say hello and we soon got our heads together and got the tent sorted. The girls loved how we built a house just like that and they were soon playing and shrieking inside it. Lilly took an instant liking to John who is sweetest and kindest man we know. John took the girls for a joy ride in his little jeep with no roof - Lilly was so excited.



Lilly and Indi collected firewood (twigs) and we soon had a blazing fire albeit a bit smokey due to the recent rain wetting all the twigs. We had a cuppa with John then Mum made a yummy dinner on the camp stove. The night was cold and we sat around the fire wearing hats and coats, playing guitar, eating easter eggs, singing songs, toasting marshmallows and looking for strange shapes in the coals of the fire. Lilly loved the amount of stars that were visible and she stayed awake just long enough to see the huge full moon rising over the trees. Mum and Indi and Colin stayed up for a while then it was time for bed. Colin slept with Lilly on the big mattress while Mum and Indi had a bunk each. It was very very cold and we were all rugged up fully clothed in sleeping bags and under a mountain of doonahs (Duvets if you are in UK)

April 15

An odd day for little Kahlilla today. She was fine when she woke up then she quickly went downhill, feeling sick then tired, then just sick and tired. She hopped back into bed after a little vomit and she slept from 10am until 4pm. When she woke up she was fine and full of energy. She spent a few hours at Nanny and Pop's in the evening which was a lot of fun. Back at home Lilly stayed awake until late then slept. A very sleepy day, although these fleeting periods of feeling sick are a bit of a concern.

April 14

Today is the Royal Childrens Hospital (RCH) Good Friday Appeal, and we are watching the broadcast on the tele. Lilly has been on a couple of times singing "You are my sunshine..." Very gorgeous indeed. She is a TV star. The Appeal runs all day, so tune in and you may see Lilly performing.

We made the most of the sunshine and walked to Red Rocks Beach where Lilly made sand castles and got her feet wet. She looked great with her blue cape and bare bum. It was beautiful at the beach but the dark clouds were gathering so we made a run for it. The rain came when we were half way home and we all got soaked, so we lit the fire and lit the BBQ and had yummy sausages, then watched more of the Good Friday Appeal, cheering everytime Lilly was on the tele. The evening was nice with Auntie Jess visiting for a while bringing loads of easter eggs. Lilly is so healthy and she is loving every minute. We should stop worrying so much and do the same.

April 13

A peaceful night's sleep for Lilly. It seems that yesterday's vomits were a short lived illness thankfully. Mum and Nanny drove Lily to RCH for a fresh dose of Heparin and a change of boobie dressing. Another 2 hour trip for a 5 minute procedure - The price of living on beautiful Phillip Island. All the nurses were busy so Lilly had to be content with 2 hours in the Starlight Room. Can't help bad luck!! Lilly is especially fond Captain Starlight and was very pleased to see alll three of them today.r.

Lilly was a bit anxious when the time came but she was so brave as they peeled the old sticky away from the tube coming out of her boobie. After that Mum met the lady from Channel 7 who gave her a DVD of all the TV adverts that Lilly is starring in at the moment. Then they all went for dinner in town - after a final visit to the camping shop to get some last minute items for our big overnight camp this weekend. Mum and Lilly took Nanny home then Lilly played Hide and Seek with Poppy and Uncle Dan which was fun and a little bit scary at the same time.

April 12

Lilly had a rough night with a few bad dreams but she woke up bright and happy. Prue came to pick up Colin for work and she got a big hug from Lilly, so she stopped and played for a while. Lilly is such a delight and Colin explained that this is the reason he is often late in to work.

Mum and Lilly went to Churchill Island for the working horse festival, which Lilly would have enjoyed so much more if she wasn’t suddenly sick.

It has been a few months since Mum has seen so much vomit. On the way home Lilly visited Poppy and Colin at work which raised a smile on Lilly until she vomited again. Poppy held the spew bag while Lilly held her nose tube.

Tonight Lou, Bells and Tolly came for dinner and Lilly slept. About an hour later, Lilly woke and was feeling much better. 10 minutes later she was playing and dancing with the other kids and having a ball. It is so nice to see her gorgeous beaming smile return. She even hopped in the bath with the three kids and enjoyed herself.

Lilly’s eyelashes are so long now. Colin got his first butterfly kiss from Lilly in many months. After being without lashes for so long, it appears that she is wearing eye liner. It is so striking and very very cute.

April 11

Lilly woke early again today, just when Mum needed sleep. Lilly spent the day with nanny and they went to visit Auntie Lainie at her farm. Lilly sat on Pete the Pony and loved every minute. We all had an early night. We all have to get healthy and stay healthy before Lilly’s final round of chemo and bone marrow transplant.

April 10

Lilly slept late today then had a nice day with Mum who is now feeling a bit sick. Lilly spent the afternoon with Nanny and had a great time. We all met Lilly at Nanny’s house for a yummy dinner and lots of running about and playing with Poppy. Lilly spotted the moon shrouded by the clouds and was very pleased with herself.

Lilly was filmed a few weeks ago for the RCH Good Friday Appeal and she stars in a couple of ads on Melbourne TV at the moment. Just a glimpse of Lilly but her face takes up the whole screen. Our little star.

April 9

Lilly’s internal alarm clock went off again at 7.30am. We needed sleep so Lilly got to watch Madagascar in her cot on her portable DVD player and Mum and Colin got 2 more hours sleep. Lilly and Indi went to Chloe’s birthday party today so Lil went berserk on the lemonade and cheezels (banned otherwise) Then Nanny and Poppy came to visit and Lilly just ran around and played like a normal kid.

April 8

Lilly woke at 7.30am. She knows not the meaning of weekends. We walked to the main street today to do some shopping and it was good to stretch the legs. Lilly walked a little but spent most of the time in the pram. We saw Nicky at the kids clothing shop where Mum used to work when life was normal, and we had a coffee with Brucie Baby and Pam at the servo. It started to rain as we were about to head home so there is a big thank you to Rhiannon from the hardware for driving us all home.

Mum made a yummy dinner then we turned out the lights and turned up the sound and watched Harry Potter and the Goblet of Fire, or as Lilly calls it – Harry and the Dragon.

April 7

We had to drive to RCH today just to get Lilly’s Hickman Line flushed with fresh Heparin, an anti clotting agent. A 2 hour drive for a 2 minute procedure. Ah!. Nevertheless, we made a nice day of it with a good 30 minutes in the Starlight Room. Lilly has rather taken to one of the Captain Starlights and she gets so much joy being there. After that we went to the camping store to buy a few more bits and pieces for our upcoming camping expedition – just one night away - as a practice. Then we had Vietnamese food in Victoria Street which was really nice. The girls crashed in the car on the way home after such a big day.

April 6

Lilly woke early with another vomit. She is so healthy, which makes the vomits a bit puzzling. Maybe the volume of her overnight feeds into her nose tube is too much, so Mum started rationing her daily quota over the afternoon. The morning is taken up with water and veggie juices.

Poppy made dinner tonight and we all went there for the evening and it was especially nice to see Auntie Georgie and little Charli. Lilly had a great time running around and laughing with Indi and Charli.

April 5
Lilly woke with a huge vomit, then went on to have a really happy morning with Mum. It rained and rained today so activities were confined to indoors. Poppy came over in the afternoon and spent some beautiful time with Lilly. Lilly is a bundle of joy and Colin got the biggest squeeze from her when he arrived home from work.

Mum made yummy bacon soup which is Lilly’s favourite, but she ate very little. We are worried that Lilly has been conditioned not to eat due to the dependence on her nose tube.

April 4

Lilly slept well and slept late. She had a wonderful day at home with Mum just being a happy kid. Her hair is starting to grow and her eyelashes are really long now. She is just such a nice kid.

April 3

Lilly slept so well in her own beautiful bed, then spent a lovely morning with Mum. Lilly spent the afternoon with Nanny and Poppy and she loved every minute. Lou, Bells and Tolly came for dinner and it was so nice. Lilly is so happy and full of energy and it is gorgeous to see.

April 2

We reported in to the nursing station at the ward first thing and they were surprised we were still at the hospital. Apparently they just wanted Lilly close by for one more night just in case she took a turn for the worse. In a flash, Ice Block was packed and we were off. This stint has been a bit trying because Lilly recovered so quickly from surgery and has been mostly healthy and happy in hospital. She is due for strong chemo soon and will be spending a few months in hospital possibly very sick. We just want some time at home.

We dropped in on Lewis and Gareth on the way home and Lilly was so excited to run around with all the kids being normal. At home Nanny and Poppy had cleaned the house, made dinner and lit the fire. So good to be home.

April 1

Another great day for Lilly except that the surgeon visited in the morning and said Lilly was looking great and she should be home tomorrow. So it was a day of fun and games in the Starlight Room brightened when Nanny, Poppy and Indi arrived.

Today, there were no medications given, no blood pressures taken, no temperatures taken, no obs at all and we were left wondering why we all weren't at home. Mum got pretty fed up by evening so we took Lilly and Indi across to Ron's House for the night. Lilly had a ball running amok with all the other kids. So far, there has also been no result from the biopsy of Lilly's tumour. We have decided to stop worrying and have a good time. Having said that, if the biopsy shows active cancer cells near the edges of the tumour, Lilly may be due for radiation therapy which is pretty harsh treatment and a bit of a worry.


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