Our beautiful lil'
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.