Our beautiful lil'
LILLY'S DIARY


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P.S. Over the other side of the world in the UK is my little friend Samantha Hughes. She was born on the same day as me and also has Neuroblastoma. Sammy is still receiving chemo and we would love you to visit her website and send her your love and positive energy. She is a very special girl!.
Visit Sammy by clicking here

Samantha Hughes
This is a photo of my special friend Samantha






                      Lilly is heading back to this state of blissful innocence



June 30

Lilly was due for a change of boobie sticky today, but there was no trip to the hospital, because the district nurse came to Lilly. Nurse Emma was very kind and patient as Lilly crumbled and procrastinated and it all went well in the end. Tonight was a big night at Nanny and Poppy's and it was nice for everyone to be together with Lilly's Auntie Georgie and her darling Charli. The girls went wild and had a very energetic evening as the grown ups tried to relax at the end of the week.

June 29

Mum took the girls out for the day and they spent a few crazy hours at AMAZE N' THINGS. Lilly was a bit freaked out by the various optical illusions but she loved the crazy mirrors and the giant spiral.



We all had a nice evening together playing and having a bit of a wrestle. Have to toughen these girls up somehow. Lilly decided that she was going to have a shower without screaming and she found it most enjoyable, as did did Mum and Colin.

June 28

Today was a TV free day for the girls. Mum took them down the main street and they bumped into their cousins - Lewis and Gareth! They all went crazy because they were so happy to see each other again. Back at home, the girls helped Mum make nori rolls which was a lot of fun also. In the evening we all went to visit Claire, Gavin, Lewis and Gareth and the kids went wild once again.

June 27

We needed a big sleep after watching the Socceroos lose their world cup game at 2am. Lilly, however, had other ideas with an early morning plop. She is so beautiful and bright eyed when she wakes up, politely asking for help to get her nose tube unplugged and some assistance to the lavvy.



   Poppy came to visit tonight and Lilly shaved his head with such care





   Lilly and her Poppy



June 26

Poppy has volunteered his Mondays to look after the girls so Mum can go to work and have a little break from her angels. It was a pity the weather was cold and rainy so they were confined to indoor activities, but Lilly and Indi had a really nice day with Poppy all the same. This evening Lou, Bells and Toli came to vist and the kids had a riot dressing up and dancing to some groovy new kids songs "HELLO HELLO... IT'S GOOD TO SEE YOU..." Thanks Alf, we hope kids all over the world are rocking to your songs very soon.

June 25

Sunday. The day for a sleep in and a rest. Not possible when little Miss Ploppy wakes early yelling out "HELP... I need to do a poo!!" She is regaining her pride refusing to drop a jobbie in her nappy - just as she did 12 months ago, before the chemo made Lilly too ill to get out of bed to go to the loo. Bless her little bottom.



The girls had a great day, especially when mum made a cubby house cinema, which is basically a bed spread draped from the couch to the tele, but very exciting nonetheless.

Lill is just so vital and gorgeous, enjoying every minute. We think the top up of red blood cells last week has helped to restore her energy levels. She looks great, she is kind and sweet and her little sense of humour is developing at a tremendous rate. Lilly also ate quite a bit of food today... some bread for lunch and some pasta at dinner time. All covered in soy sauce mind you. She asked for books to be read to her this evening and we got through four of them before she announced that she was ready for bed.



            Miss Pinky and her Collie Daddy



June 24

Nanny and Poppy came to visit and the girls are always happy to see the oldies. Lilly was looking fabulous in a blue tracksuit getting in the spirit of the World Cup. Aussie Aussie Aussie Oi Oi Oi !!!





Nanny and Pop kidnapped the girls and took them shopping for a new TV and the girls went crazy in the kitchen section. They do appreciate their ovens and fridges. The gang zoomed up to Emerald to visit Fred and Chris who have sports cars, motorbikes and a few horses that Lilly liked very much. Lilly had a giggle fit when Freddie was teaching Lilly how to eat by shoving a heap of biscuits into his mouth then speaking and spluttering them all over the table. It was then over to visit Aunt Jess and the girls enjoyed playing with (tormenting) her little dog, Preslie. It was late in the evening when Poppy carried a sleeping Lilly and placed her in her own bed. Such a happy, busy day. Mum and Colin missed the girls but enjoyed the peace and managed to do a few jobs around the house that are just not possible with two demanding (but lovely) girls.

June 23

Up early for a Lilly's fortnightly trip to RCH. Liily and Indi hopped into Snowflake and Mumm drove in to melbourne. First there was the finger prick whick Lilly took in her stride. A little frightened but very brave. Then there was some free time and Lilly made a beeline for the Starlight Room. Lilly's favourite Captain Starlights were there and they were so happy to see Lilly also. A singing dance troupe were on the stage and Lilly climbed the ramp, stood in between two of the singers, held their hands and started grooving. She was having such a good time and was sorry to have to leave to go and visit her doctor.

Lilly's doctor was very pleased with her progress but announced that she needed a blood transfusion. The blood was ordered but it took a while to be delivered from the blood bank, so it was back to the Starlight Room for more fun and dancing with Indi. When it was time to go back upstairs and Lilly was so good with her transfusion, sitting patiently for 3 hours, reading books with Mum and watching a DVD. Finally it was time for a change of boobie sticky and Lilly was a champ. Scared but so brave as usual. We figure that if you are not scared you can't be brave. before long it was all over and Lilly slept all the way home in Snowflake.

We have to take this opportunity to thank everyone who donates blood. The human body is a blood factory and if you take some out, the body replaces it within a few days. Lilly has had countless transfusions of red blood and platelets thanks to these incredible people who give blood.

June 22

Another big sleep in for our Lilly, but Mum was so disappointed because she just loves waking up early. Mum quickly organised the girls with dress ups and dancing. Lilly chose a lovely pink number and called herself Mrs Pinky.



Lou, Bells and Toli came for a visit and it was an afternoon of trampolines, playing, laughing and chook chasing. The girls went into town and played in the new AUTO toilet in the main street. It talks to you and everything. Lilly was quite amused, especially with the “thinking music” that is played to you while you are seated.

Lilly had another very stressful bath tonight. She just has this fear of getting wet or cold or naked... not sure which. She was trembling when she emerged from the bath and Lou held her and put her hands on Lilly's and did a little Reiki/zen thing and Lilly calmed down so quickly, remarking how warm Lou's hands were and how her trembles were going away. Thanks Lou Lou.

Thanks to everyone for writing such beautiful messages to Lilly and her family. OK OK OK ... I accept that Lilly is a lady and ladies are entitled to be a bit irrational at times, especially so with Lill due to the enormous amount of poison that has passed through her little body over the past 7 months. I think we are starting to realise that the emotional recovery may lag behind that of the physical. Lilly needs love and infinite patience and a lot of spiritual healing and guidance. Although we believe that she is our spiritual guide. She is such a sweet person. When I come home from work she runs up with a beaming smile and wraps herself around me and holds on giving me such a loving squeezy hug. She is my beautiful friend.

June 21

Poor Lilly woke up vomiting at 4am and made a huge mess of her bed. Normally we wake up and get a bowl just in time but we were fast asleep. Lilly was so upset thinking it was her fault. She was even more upset when Mum told her that brown blankie was covered in vomit and yellow blankie would have to do for the rest of the night. Lilly would not hear of it, insisting that Mum clean up brown blankie with a face washer and put it back in Lilly's bed. Lilly has had a few episodes like this lately where she becomes totally irrational and unreasonable. Mum is concerned. Colin reckons Lilly is just a female!!

Mum took the girls to visit Tex and Xander which made for a hyperactive afternoon. Mum was a bit on edge because Lilly had been bruising easily due to her low platelet count and a fall may cause serious internal bleeding. Lilly didn't care and just carried on being an excited kid running amok with other excited kids. Later in the day, Mum and the girls went to the cinema to see an awesome movie called THE MARCH OF THE PENGUINS. Lilly was enthralled and when two penguins rubbed their heads together during an affectionate moment, Lilly called out "That is just like Mum and Colin"



June 20

A huge sleep in for the girls today with no sign of Lilly until after 10. Mum played with girls until it was time for her dreaded dental appointment. Indi went along to the surgery to witness first hand the consequences of not looking after your teeth when you are young. Poppy came to visit tonight and we all had fun making pizzas.

June 19

A rough night for Lilly with a few runny poos and a huge vomit that had a lot of blood in it. Lilly was so good, holding it all in and calling out for help to get out of bed and go for the toilet of the vomit bowl. It is a bit of a worry though, especially when Lilly complained of a sore tummy. You can't help but recall November 2005.

Poppy took a day off work to look after the girls and ended up taking Lilly to see the doctor following advice from Lilly's hospital. Poor Lilly had to have a blood test and the pathology people would not do a finger prick insisting on a needle instead. Poppy said she was so brave albeit a bit scared. The results confirmed that Lill's platelets are very low but white and red cells are quite healthy. There is no need for a blood transfusion but they told us to be extra careful and make sure Lilly doesn't fall over hard or cut herself. They also told us to avaoid risky situations such a motorbikes... shhhhh... don't tell them about yesterday!

Poppy made up for the morning at the doctors by taking the girls to the beach to look for crabs. They found so many crabs and Lilly was very excited. The girls had a cosy night at home playing by the fire and soon it was time for bed. Very cold night tonight, but Lilly kept warm.



June 18

We jumped in Snowflake today and drove to the farm where there were 2 new horses!! We are not sure who they belong to, but Indi and Lilly were very impressed.







            Lilly feeds the horse while Pete idles patiently in the background!



We rode Pete the motorbike all over the property looking for kangaroos and foxes and cows and Lilly was just thrilled. "Go faster.... too fast... go faster.... too fast" etc etc etc...

John (The old man with the sunshine in his eyes - Van Morrisson) came over for a cuppa and it was so good to spend time with him. His little red car, Suzi, had broken down and the girls were disappointed because they were hoping for a repeat of the fun they had on April 16. We filled Snowflake with Firewood and played some soccer, then it was time to go to visit Fritz. Lilly had a great time playing with the kids of Fritz and Weenie, chasing the cat and playing Galaga (Far superior to Space Invaders).





June 17

Mum was teaching Lilly about bad words and what words are not nice to say, such as HATE, DIE and KILL. Lilly nodded her understanding then said "NEEDLE and FINGERPRICK are bad words too" Indi showed Lilly how to make rainbow milk and Lilly was amazed.



June 16

Lilly went to 3 year old kindy today and she loved it after a curious reception from the other kids. There aren't too many girls with bald heads with nose tubes on Phillip Island. The other kids were very wary at first but Lilly managed to win them over with her bright personality, confidence, sense of humour and silliness. She refuses to let her shiny head and nose tube make her any different from the other kids.

Lilly was so tired after kindergarten and after a dispute with Mum over whether she was allowed to watch a DVD at home, she was utterly exhausted. Lilly slept all afternoon and Mum reluctantly woke the sleeping beauty because they had to go and pick up Indi from school. Her last day for 3 weeks... school holidays... yippeee.

Indi's school is close to Col and Poppy's work, so the girls dropped in for a visit. Lilly asked to sit on the forklift, then Poppy took her over to look at the fish in the pet shop.



June 15

A restful night for Lilly. No vomits and illness for many days now. She has been losing a bit of weight and we have increased her nose tube food. The tube has been in for over 5 months and Lilly must think that eating is optional. The tube is such a catch 22. If we reduce the tube food and she doesn't eat, she will be undernourished at a time when she needs to be 100% healthy. If she gets her daily requirement via her tube, she always has a full belly and is not hungry, so she fails to learn how to eat again.

Lilly went to the library with Mum and enjoyed the endless supply of books. After much deliberation, she finally chose a few to take home. The afternoon was a little uneasy for Lilly as she was strapped in to Snowflake (Col's car) and driven to the hospital for her weekly Hickman flush and dressing change. The traffic was bad and we were delayed enough to arrive at the Starlight Room after it had closed for the day. Lilly was really looking forward to seeing Captain Starlight and she was quite upset to miss out. The dressing change could have gone better beacause Lilly was so frightened and was pleading for us to do it later. In true style, Lill's smile returned a few minutes after it was over as she declared "I have found my happy mood"

We jumped into Snowflake and sped away from the hospital at walking speed. Peak hour can be frustrating when you are in a hurry. And we were in a hurry to go and visit Lewis and Gareth before they went out. Lilly was so happy to see the boys and she ran around playing chasie with her cousins. They were so gorgeous together that you get to see two photos of them.





It was getting late and we had to say goodbye because it is a 2 hour drive to get home and Colin was getting tired... The World Cup games are on at 2am on this side of the world. Lilly watched a DVD and cuddled up with her brown blankie as Snowflake took us back to Phillip Island. About half way home, Colin had to stop for a snooze and Lilly was so upset asking Colin to keep driving so she could cuddle Mum. She cried and screamed and Colin had to keep driving- can't sleep with that racket going on anyway. After 2 minutes of driving at 30km/hr, Lilly fell asleep, so Colin stopped for a power nap. 20 minutes later we were off and zooming, arriving home safely at 11pm.

June 14

It seems strange relating Lilly's story now that she is at home and heading toward the normal life of a 3 year old. "Lilly woke today'" "Lilly ate her brekky" "Lilly had a poo"" ... etc... Potentially wearisome for the reader. Well, this morning Lilly woke at 6am because she needed to do an urgent jobbie. By the time she was unplugged from her nose tube food pump she was frantic. Finally her bum hit the toilet seat and ... nothing. She pushed and strained and struggled but to no avail. Finally there was this little voice calling out from the loo... "Col.... Can you please come in and squeeze my head" What an adorable little girl. About a year ago someone taught her that you poo easier if you squeeze your head. Oh the things Lilly remembers... Oh the things people teach her!!!

Lilly had a happy day with Mum and it just got better when Gerg and Uncle Craig came to visit... ni!. Uncle Craig is the lighthouse keeper and Lilly is going to visit there very soon. Lill slept all afternoon and woke just in time to hop in IceBlock and go to Nanny's for dinner. Poppy made a yummy dinner and Lilly went crazy with some of the men in her life... Poppy, Col, Uncle Craig, Mr Gerg, Uncle Damian and his little Will. It was such a fun night of being chased by scary monsters, horsie rides and lots of cuddles.

June 13

Lilly woke early which was a shame because Mum and Colin stayed up late watching the Aussies stuff the Japs in the soccer and were looking forward to a sleep in. Due to the crap weather, Lilly may have to wait a few months before playing with the chhoks, so we let the chooks into the house. Lilly was so excited and she walked around the kitchen following Rommy - without assistance from anyone!!! She is such a good girl, walking by herself like that.





                      Lilly is not too impressed about the sharp chook's foot!



Mum and Lilly had such a nice day together, watching a movie, playing games, walking around the garden, bouncing a bit on the trampoline and enjoying life in general. Lou, Bells and Tolly came to visit in the evening and it the place turned into a crazy house. All the dress ups came out and the kids danced about together





                      Lilly, Indi, Lou, Arabella and Tolliman



Even later in the evening, Uncle Damian dropped in to visit Lilly and she was very happy to see her uncle even though she was tired, so she settled in for a nice cuddle.



June 12

Another good day for our Lilly Blyss playing with Indi and just taking it easy and enjoying being out of the hospital. It was cold and rainy again so Lilly helped Col light the fire and she was most pleased with herself. Mum took the girls to visit Nanny and Poppy in the afternoon which was just great. Lilly started to walk tonight without holding onto anyones hands!!! Just small limpy steps but she is starting to remember the freedom of being able to walk and not rely on others for support.

June 11

Such a good night’s sleep for Lilly in her beautiful bedroom. Well under all the gear dumped yesterday, there is a beautiful bedroom. Lilly tentatively settled in to home life, but that all changed when Nanny and Poppy came to visit bringing Indi with them and any caution was thrown to the wind. It was cold and rainy so the sisters played and created indoors and Lilly really enjoyed having her sister about again.



Lilly fed her fish and sat in front of the tank for ages, just watching them. We raced outside in the rain to feed the chooks and check for eggs (No eggs - The chooks are off the lay) Then we raced back in again to huddle by the fire. Lilly walked quite a lot today. Mum taught her how to limp and Lilly was soon standing up straight and hobbling around whilst holding someone's hands. By evening she was standing up alone and taking a few unassisted steps. Her foot is tender but Lilly does not seem to be in any pain. Lilly also ate some food tonight, not much but she enjoyed her mash. Let's hope we can kick start her palate again soon. Another early night for Lilly who was happy and healthy and full of energy today.

June 10

We were lucky on Saturday morning to have our friend (and angel) Megan visit. She played with Lilly as the mums went into cleaning overdrive. We were so grateful to have Megan there to be with our Lilly…..thanks Megan.



Colin and his good friend, Sputnik packed the cars as fast as possible. We filled 3 cars!!! Well we have been at the apartment for almost 2 weeks!! Lilly sat on the motorbike and rode with Colin out onto the street.



We then posed for a quick photo with Lilly suggesting we all do a Thumbs Up



Then we were gone... zoom.

At home it was time to stop. We unloaded the gear from the cars onto every bit of available floor space then collapsed. It was strange having Lilly around the house but we will have a great time getting used to her again. Indi is a little bit ill so she was in quarrantine at Poppy's house. Lilly is still reluctant to walk and insisted on being carried everywhere. She was happy to be home and she was very eager to have an early night in her own bed. She even crawled into her bedroom.

June 9

Lilly and mum had a late night at auntie Jessies so getting up early for another hospital visit and inevitable transfusion was very difficult. Lilly braved her way though another finger prick…unaided by an impatient pathologist mind you! We were then seen by Lilly’s oncologist who walked in, checked her over and informed us of some unexpected news...

Lilly can go home tomorrow

Lilly can go home tomorrow

Lilly can go home tomorrow

***********************
Lilly can go home tomorrow!!!!
***********************


**************
Lilly can go home tomorrow!!!!
**************


Lilly has to return for fortnightly blood tests and checkups but she is allowed to leave the proximity of the hospital and go back to living on Phillip Island. It would seem that this adventure is over. Lilly's treatment has ended, she is clear of cancer and her blood is stable enough for her to go home. We must be dreaming. This is unreal... just incredible. Our little Blissful Lilly has survived.

It was totally unexpected but just what mum needed to hear. We were all so tired of the disjointed, unpredictable hospital life so these words were like healing gold dust. The doctor requested one last urine test before we left so Lilly and mum rushed excitedly to the toilet where Lilly pushed and pushed …only to produce an sweet little pink flowery girly fart!!! And no urine!!! She was terribly upset and apologised profusely as mum had just told her that we can go for good if she can wee into the pot. So off to the café for some fluids, an hour in the starlight room and finally Lilly was able to produce the goods!! We whipped past pathology on our way out and walked into the gorgeous sunlight with a new outlook on the day! She now falls into the category of 75% chance of relapse... but we will worry about that some other day. Our beautiful girl is coming home!!!

We met Nanny at the unit where she and Lilly went to the Royal Melbourne Hospital to visit Nanny Eileen ( Poppy’s mum). They had a lovely time and bought some needed sunshine into Nan’s room. Back at the apartment mum and Nanny started disassembling for the return home. There is no better team than a couple of mums for getting a job done. Jude was an absolute machine and worked her butt off to make sure we could get out of there the next morning. Thanks Nanny….we love you soooo much (and Lilly thinks you’re the best nanny in the whooooole world)!!!



Lilly with her great gran

June 8

Lilly had such a big, peaceful sleep with no vomits. We have increased her overnight feeds and she is tolerating it very well. Mum took Lilly to visit Lewis and Gareth today. Lewis was at school but Gareth was at home - injured at school. Lilly likes Gareth but she seemed a little angry and anti social today. Lilly had a big sleep all afternoon and woke just in time for a visit from Auntie Jess which was nice. Mum and Lilly drove Jessie home later in the evening. Quite a big day in the car for Lilly today and not much progress with the walking. Lilly is still very tentative and frightened due to her sore foot and wobbly legs.

June 7

It was back to the hospital this morning for a blood transfusion and Lilly sat in her pram enjoying the tenth beautiful sunny winters day in a row. The transfusion took over three hours and Lilly occupied herself with DVDs and colouring books. Lilly's friend, Bronte came in for her next chemo dose which was really nice... The chemo dose was not really nice ... It was really nice to see Bronte. Lilly is drinking plenty of water and she even ate a few grapes during her wait.



We even went for a walk up the corridor to look at the beautiful scarves that some kind people had made for the cancer kids for the winter. Lilly tried them all on and finally decided and a soft wooly pink number.



Once the transfusion was complete, it was time for a change of boobie dresing and Lilly was so upset and frightened. The old sticky sometimes clings to the tube coming out of her chest and it must feel rotten to have someone tugging away at it then cleaning it. Lilly cried and cried and just refused to let it happen and got so upset that she did a big vomit - mushy grapes - nice. After about 20 minutes, Lilly declared that she was ready and she moved her hands away. It was very traumatic and really horrible to see our Lilly in such distress.



Once it was all over, we ran away from the hospital and played in the park for a while, enjoying the afternoon sun. Lilly's foot is a little better and once we returned to the apartment, Lill stood up straight and with some support she took a few steps. We all cheered and Lilly smiled. Now she just needs confidence to walk and limp and not be scared that it will hurt. Mum brought Lilly's trike for her to pedal around the apartment. Don't forget that Lilly's legs are very weak from her 4 weeks in bed and the past week sitting on her bum. We had such a nice evening watching The Princess Bride and trying to stop Lilly from revealing the story line to Mum.

Lilly with her new scarf in the afternoon sun

June 6

Lilly had to go with Poppy to the hospital today and she was not impressed and she let Poppy know it in no uncertain terms. Once outside the apartment, Lilly saw the water flowing out of the hole in the ground and down the road from the burst water main and she was happily distracted. She is always fascinated with water.

At pathology, the clown doctors were on hand to distract Lilly from her finger prick and they did a great job because it was over before Lilly knew what was going on. Lilly was upset that she was not allowed to go to the Starlight Room and Poppy had to reluctantly drag her upstairs to see the doctor. Lilly's doctor was again pleased with her progress although her white count has dropped and she again has no platelets. Mum arrived and instead of waiting at the hospital for Lilly's platelets to arrive, Lilly insisted they return to the apartment to show Mum the burst water main.

Once back on the ward, Lilly kicked back in an arm chair beside her friend Bronte and they received their respective intravenous brews. Bronte also has Neuroblastoma and we hope and pray that her next chemo session is her final chemo session.



Lilly and Bronte

Once the transfusion was complete, Lilly and Mum returned to the apartment and Lilly was disappointed that the water main was all fixed, but all was forgotten when they went upstairs to make pizzas. Lilly was in a loving and playful mood and when Colin came to visit, he got the warmest hugs from his girls. Mum gave Lilly a beautiful face massage and Lilly just loved it.



June 5

Lilly had such a nice day with Poppy today which included a trip to the playroom, lots of books and Poppy stories, a few movies and a long walk out in the beautiful sunshine. Lilly found out today that Poppy's old school stands beside Harry Potter's school... she was most impressed. Back in the apartment, Lilly was starting to crawl about and becoming more independent. Good to see Lilly exercise a bit and get the blood pumping but not good to see her foot unfit for walking. Lilly will have an X RAY tomorrow.



Lilly and her Poppy

June 4

Lilly woke up early and in a great mood. She was so happy to spend time with Mum and there were lots of cuddles and tickles and whispered "I love you" 's



We made the most of yet another sunny winters day in Melbourne and walked to the Vic Market for an organic food shopping spree. Lilly had a wonderful time enjoying the change of scenery especially the camel rides and the Cuban band playing on the street corner. Lilly did not ride on the smelly camels but she wiggled in her pram to the Cubans. We bumped into Lilly's friend Prue and Lilly was so please to see her and get a little cuddle. Prue is one of the girls who shaved her head for Lilly back in December. Back at the apartment, Lilly played with her toys on the balcony and enjoyed the afternoon sun.



In the evening, Lilly helped Mum make pizzas and she even ate the cheese of a few slices - very yummy. Lilly is so healthy at the moment. She is tolerating more and more feed each day and she looks great and feels happy... and the hair on her head is starting to sprout again. What more do you need in life?



Supervising the operation of the pizza oven on the balcony whilst playing her piano

Lilly was so tired by 8pm but she knew Poppy was on his way so she stayed awake until he arrived. Then she was so excited that she stayed awake even longer. Lilly loves her Poppy.

June 3

A beautiful sleep for Lilly and she woke at 10am. So good not to be woken up before your body is ready. Lilly had a boiled Rommy egg for brekky and it was very yummy and Lilly ate almost all of it.



Aunt Jess came to visit and we all went for a walk... well Lilly was in the pram. Some careless pram work caused extensive damage to a parked car - but the Lilly was OK.



Lilly showed Aunt Jess Harry Potter's school and it was very exciting and not as scary as last time. They walked all over the place in the beautiful sunshine. They even went to the funky electronics shop to get Indi a present for her Birthday on Monday... a remote controlled electric clown fish for chasing the fish in the tank at home. Lilly was very excited at the prospect for shooing away Spotty if she tries to eat any more little fish.


       Thanks for visiting Auntie Jessie

Lilly's foot is still sore and she is refusing to walk and refusing to crawl claiming sore hands and demanding to be carried everywhere. Needless to say there were a few moments where Lilly demanded to be carried 10 feet across the room and Colin refused. Lilly, it is time to get off your bum and crawl and do some exercise.

Lilly had a nice bath then straight to sleep at 7pm. Mum came to visit later in the evening just in time for a big vomit. Poor Lilly had such a sore tummy and an hour later she pushed and pushed and squeezed out a very difficult midnight jobbie. Her tummy was all better and she went straight to sleep.

June 2

A much better night for Lilly with no vomits due to the reduced feed rate. There is no point stuffing Lilly full of food if it makes her vomit. Her digestive system is clearly recovering very slowly and we have to accept that Lilly may lose a bit of weight over the next few weeks.

We had to wake Lilly at 8am in order to get to the hospital in time for her doctor's appointment. She was not impressed. We waited for ages at the doctors, then we had to go for a blood test and Lilly was so scared but so brave with her finger prick. The doctor was very happy with Lilly and her blood production progress. Her total white cell count is 3.5 and her Neutrophils are 2.1, which is almost as good as it gets. Her platelets are low, so another transfusion is required. Lilly's platelet production should be normal in a few weeks time.

We went went home via the nice garden at the hospital to see Lilly's water wall. It was pumping and Lilly was so pleased. We walked back to the apartment in the lovely sunshine and Lilly had a little sleep. Waking her before she was ready to wake up was pretty rotten for Lilly but her platelets were awaiting her arrival. Lilly was so patient in the hospital, mainly watching Wallace and Gromit, she also tried some of the hospital rissotto and quite liked it. Good to see her with an appetite. The transfusion finished at 7pm and we walked home in the dark. Well Lilly sat in her pram, with a very tender foot. The doctor checked her foot today and declared it free of fractures. She just needs to rest it for a day or so until she is ready to put weight back on it.

We had a nice evening with lilly crawling around the house dressed in her fairy outfit. She was in a totally adorable, affectionate mood. Her love is its own reward for everyone caring for her.



June 1

Lilly slept so well and up until 6am it looked like a vomit free night. There was so much of it and poor little Lilly trembled and shook with each heave. Then she wiped her mouth and went back to sleep. Later, she woke up singing then had such a nice day with her Nanny. They hopped in the pram and went for a long walk in the sunshine and got a bit lost. They went past the big old church that Lilly thought looked like Harry Potter's school. Lilly went inside Hogwarts for a look but it was a bit scary. Lilly was a bit frustrated today because she was not allowed to pat any dogs or pick any flowers, just in case there are any germs about, but it was good to get outside all the same.

Lilly fell over yesterday and hurt her ankle and has refused to put weight on it since. She was no better today and it is becoming a bit of a worry. She may have to have an X Ray tomorrow when we visit the hospital. In the meantime, Nanny carried Lilly to the various parts of the house at which Lilly wanted to be. Nanny carried Lilly into the bath which was really enjoyable. Colin came back in the evening and Lilly was in such a gorgeous and playful mood. Lilly particularly enjoyed trying to grab Col's white kangaroo tail and she laughed and giggled.


       May Lilly's smile never cease

Lilly went to sleep easily but did a little vomit soon after. We have decided to reduce her feed rate and try to avoid the vomits. She will get a little undernourished but that is for the best until her tummy starts to work a little better.