Our beautiful lil'
LILLY'S DIARY


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We have a special present for all our very lovely friends around the world. It is a short video of Lil' singing "We are one". Please have a listen, it is absolutely beautiful!!
The movie is 8MB, so if you have a slow internet connection it may take a while to download.
Click here to play the file. Or simply right click the file and save target as.
Thankyou!

March 31

Lilly slept well and woke up happy and did not vomit. Any day without an early morning vomit is bound to be a good day. Today was the Golf Day for Lilly run by The League of Bald Headed Men, of which Lilly is a member. It was a great day but such a shame Lilly could not be there. She would have loved riding around in an electric golf cart with Mum looking at the beautiful scenery.

Instead, Lilly had to be content with excitedly watching the helicopters from the playroom window which is not such a bad consolation. In the evening, the nurses took a blood sample and disconnected Lilly's lines and she was free once again. The surgeon said Lilly was looking great and she should be home tomorrow.

March 30

Lilly woke at 4am with a huge vomit. She is so precious as she carefully secures her nose tube in place with one hand and holds her dish in the other. Poppy came in this afternoon and Lilly had such a great day. She had so much energy playing chasie and hide and seek - still attached to her drip lines and towing her trolley behind her.

Auntie Jessie came to visit in the evening which was really nice also.

Colin's friend, Biggles came to visit and it was more hide and seek. It was incredible to see Lilly crawling under the benches in the kitchen in search of a great hiding place, given that her surgery was only 6 days ago.

Lilly looked after Poppy overnight and she kept Poppy awake until after midnight when she finally gave up and collapsed.

March 29

Lilly started the morning with a huge vomit and followed up with a few more during the day. Nanny spent a lovely day with Lilly, while Colin went to work and Mum went home for a rest. Colin came back late in the evening so Nanny could go home. Lilly was so tired after her busy day with Nanny and slept well.

March 28

Lilly slept well until 5am when a she woke with a painful cough. She was moving so carefully and she looked sore and tender, which brought another dose of Panadol. Since she was awake, the nurse started pulling Lilly’s catheter out. The catheter is a thin tube that goes into Lilly’s Woji (Short for wojina) and into her bladder. It was necessary with the epidural because Lilly had no feeling in her lower body and therefore could not squeeze the appropriate muscles to have a wee. So with the epidural gone, the catheter had to go also. The problem was that the tube was taped to Lilly’s upper, inner thigh and hurt so much when it had to come off. There was so much tape there, so Lilly hid under blankie with Colin and screamed and screamed.

When it was all over, Lilly made sure her blankie was covering Colin then fell asleep. So kind. Colin went to work for the first time in a while and Mum looked after Lilly for the day. Lilly woke up very happy, so Mum took her to the Starlight Room in her wheelchair for a performance by sea creature things – very special.

When the pain started to show, Lilly came back to her bed for some more Panadol. The pain stayed, however and Lilly’s temperature started to rise. She was feeling very ordinary by the time it reached 41 degrees. The doctors suspect a urinary tract infection. Bloody Hell… what next for this poor little angel?

March 27

Lilly slept well and when the pain team came to visit, she was sitting up in bed, so they decided to turn off her epidural and switch to an oral pain killer. Jay came to visit today with his Mum Bron. Jay had a neuroblastoma tumour removed from his body a few years ago and Lilly seemed to soften when she knew that Jay used to have a black balloon in his tummy also, so she allowed him to sit on her bed and watch Spy Kids with her.

A quick ride in the wheel chair took Lilly downstairs for a chest X Ray, she has developed a nasty cough. On the way back to her room, Lilly asked to go to the playroom. She was so happy playing with jigsaws and reading books. Auntie Georgie and Charli came to visit which really brightened Lilly further.

Lilly nearly jumped to her feet when she heard the helicopter outside, pleading to have a look. We helped her to her feet and she walked to the window that overlooks the helipad. She was not quite tall enough so we lifted her onto the window sill where Lilly held onto the window frame and stood all by herself gasping at the huge helicopter. The surgeon walked in at this moment and asked where Kahlilla was. When he saw her standing on the ledge he said “I don’t believe this!” Colin thought he was in trouble for being so adventurous with Lilly, but the doctor was so pleased to see Lilly on her feet and full of enthusiasm. He believed that she was well ahead of the healing process.

Colin’s cousin Anne and her husband Rob came to visit all the way from Jersey (Old Jersey) which was so nice and Lilly enjoyed their company. Then Indi, Nanny and Lainie came to visit and Lilly was so excited but she soon lay down on the mattress, demanded her blankie and dah and drifted off. We thought she was in a bit of pain but she wouldn’t let on.

Colin lifted Lilly into her wheel chair an hour later and Lilly yelped and cried. Once back in her bed, she was given some Panadol and she soon fell asleep. Such an exhausting day.

Lilly woke a few hours later feeling good so the nurses removed the epidural hose that was till in her spine. Removing all the sticky tape was traumatic but soon forgotten and Lilly had a wonderful playful evening, then she fell asleep with her new enormous butterfly balloon tied to her wrist.

March 26

Mum took over at 6am and Colin went to sleep. He is getting a bit of a cold which is no good for Lilly's healing. Lilly’s feeds through her nose tube were started this morning. The feed rate is very slow because her tummy and associated bits were moved about during surgery and food has to be gently introduced. Poppy came to visit which always makes Lilly smile.

Lilly can sit up without assistance so Mum put her in a wheel chair and Lilly played Hide and Seek with Poppy, hiding under her magical brown blankie in the middle of the corridor. So much yet to learn (That is - Us learning from Lilly)

Lilly has started to grow new eyelashes. Full rows of blonde lashes about half a millimetre long are clearly visible on each eyelid. Can’t keep this little kid down.

March 25

Mum took over at 6am and Lilly slept on until 9am, still uncomfortable but not too sore. Her temperature is still around 39 degrees but Panadol is keeping Lilly quite bright. Nanny came in to visit and looked after Lilly for the morning. Mum looked after Lilly for the afternoon while Colin slept.

Lilly is rolling by herself and feeling better, even waving her her arms to "Rock around the Clock" She did a little fart tonight then said to Colin 'Was that you?' Such precious moments.

March 24

Lilly had a blood transfusion overnight in preparation for her big day. Nanny and Poppy came to visit and when Lilly was taken to the pre op area, there were lots of people in green scrubs and Lilly knew something big was about to go down. She asked what was happening and Mum told her that the black balloon was coming out of her tummy today. Hearing this, Lilly was calm and totally trusting. As the anaesthetic was dripped in, Mum asked Lilly to sing a song and she sang...

You Are My Sunshine
My only sunshine.
You make me happy
Blah blah blah blah.
You'll never blah blah
How much I love you.
Please don't take my sunshine away

Such a gorgeous moment. She knows all is OK. The wait was very emotional for everyone. This kid is too nice to have to go through this.

The surgery lasted 4 hours and Lilly was wheeled into recovery with an epidural, an arterial line into her wrist, a catheta, a canula in her ankle and a huge cut across her tummy and left side. The surgeon was very happy with the result, in fact he said that he really enjoyed the operation. The tumour was fully removed and no other bits were affected.

When Mum and Colin went in to see her, Lilly asked for her blankie and dah. Our Lilly is OK!! Lilly was weary and sore and she held on to Mum's finger with both hands and fell asleep. It was one of the most beautiful moments we have ever witnessed.

Lilly was wheeled up to her room and she fell asleep. To ensure the epidural was working, the nurse ran ice up her body until Lilly woke and protested. Lilly slept for a while then woke with a 40 degree temperature. She was sore and very uncomfortable, saying "I can't roll over - please help" Mum lay down beside Lilly and Lilly smiled, and Colin went to Ron's House and slept soundly for a few hours knowing Lilly will be OK.

Lilly looked after Colin tonight. She wasn't in pain but was confused about not being able to move her lower body due to the epidural. Colin rolled her on her side and lay beside her and Lilly put her head on his boobie and fell asleep. It was an uncomfortable night with Lilly asking to be rolled every half hour, but she slept well and was not in any pain.

March 23

Up early for a busy day, the lastr day Lilly will be very active for a while. We jumped on a tram and went to the aquarium which was fantastic. Lilly loved all the fish tanks, especially the one with all the clown fish - Nemo's brothers and sisters. The sharks and stingrays were also Lilly's favourite albeit a bit scary at first.

Back to Ron's house for a rest. Lilly was watching a DVD and Colin got a bit emotional and Lilly gave him a big squeeze and said "Don't cry, I love you" Needless to say, this did not help stop the tears.

Lilly had a quick play in the Starlight Room, then we were admitted to the 4th floor in a surgical ward. Lilly had a playful evening with Nanny and Poppy. They even escaped to the downstairs foyer for a while. After a few blood samples and tests, Lilly slept with Mum watching over her.

March 22

We started to pack the car and Lilly knew what was going on straight away. We got to the hostable and had a quick ultra sound. Colin wanted a final check that the tumour was still there, given that the last scan was 4 weeks ago. Hope springs eternal afterall.

The tumour was still there, so we went to see Dr Waters who explained what was going on and what was about to happen. He said that less than half the kids get to this stage after the first chemo sessions - ie bone marrow clear, bones clear and tumour down to a manageable size. He also reminded us that there is still a 75% chance that the cancer will return within a few years.

Then we saw Mr Taylor, Lilly's surgeon. He was very confident that Lilly's tumour was not very complex and all should go smoothly when he removes it tomorrow. He did say that the scans can only show so much and all will be revealed when he opens Lilly up. The plan is to make a large cut from belly button to underarm and spread her ribs in order to get two hands in and have a good look. The adrenal gland is above the kidney and a few organs have to be moved aside in order to get a good look at the tumour and start cutting. The tumour is inside and around Lilly's adrenal gland and the gland will be removed. Pretty guesome thoughts but great news.

March 21

Lilly slept late after a night with a few nightmares. None of the fish were doing backstroke after their first night in the tank. Lilly was pleased. Lewis and Gareth came to visit for a while to look at Lilly’s fish tank and play in her hammock. Indi organised a huge craft session for everyone and lots of excellent crafty things were created. No one wanted them to leave. Lilly and Indi wish the boys lived on the island.
The girls then got a lesson in oral hygiene as Mum went to the dentist for the first stage of a root canal. This is what happens when you don’t clean your teeth as a child.
The afternoon was spent lazing in the back yard lying on brown blankie watching the clouds roll by. Lilly is so beautiful and content to lie still and enjoy the moment.

March 20

Lilly woke early crying out that she needed to vomit. Colin tried to hold Lilly’s nose tube but he didn’t do a very good job and it came half way out during Lilly’s second heave. With a mad panic, it was pushed back in and Lilly was so upset. She hopped out of bed and cuddled up to Mum and felt better.
After brekky, it was off to the fish shop to choose some fish. Four were found to be suitable and they were soon enjoying their new home in Lilly’s tank. After that, it was lunch at Mad Cowes with Lewis and Gareth. After that it was dinner at the pub for Jenny’s birthday which involved lots of running around and playing with all the other kids. Such a hectic schedule.
We found out today that Lilly’s MIBG scan was clear, indicating that there is no more cancer in her body, although the MIBG scan cannot detect very small clusters of cancer cells. We meet with the oncologist and surgeon on Wednesday to find out how to remove the dormant tumour that remains in her left side and how to keep the cancer away.

March 19

Everyone slept in today. Lilly woke up and started singing her song again. We all had a lazy day at home. In the late afternoon, Lilly insisted on getting her feet wet, so we all walked down to the beach and got our feet wet. Lilly buried her own feet and made a sand castle. Mum and Colin went for a swim, but Lilly got a bit concerned without Mum so we all dried off and went home.
Lilly had a big vomit a few hours after going to sleep. We were totally unprepared because she has not been ill for weeks. Some vomit got on Lilly’s beloved brown blankie which had to go into the wash. Luckily emergency yellow blankie was an acceptable substitute.

March 18

Happy Birthday Kahlilla Blyss.

Lilly woke early and we all lay in Mum’s bed singing Happy Birthday and Lilly blew out her candle over and over. Then it was time for presents and Lilly was so excited. She unwrapped her fish tank and gasped when she saw the colours of the fluorescent rocks and the castle. “Princess Fiona lives up there” declared Lilly pointing to the highest room in the tallest tower. Lilly pointed out that there were no fish and she was told that the fish shop isn’t open until Monday. The next present was a mini hammock wrapped up and hanging under the back veranda. Lilly loved it and immediately lay in it then asked for her pillow and brown blankie.

Next we were off to Nanny and Poppy’s house for Lilly’s party. It was all very exciting and relatives and friends arrived with kids and bikes.
Given that Lilly is so good at riding her trike, Mum organised a bike party. There was bike and helmet decorating, then the court was marked with lanes and street signs and the kids all rode around. Lilly was the star, wearing her new fairy dress, pedalling her trike like crazy with a balloon flying from either handle bar and a huge smile on her face.
There was Pass The Parcel, a treasure hunt and an easter egg hunt, lots of great presents, party food and also a gorgeous butterfly cake made by Auntie Georgie. Then there was the black balloon bursting session where everyone popped black balloons by standing on them, sitting on them, biting them, scratching them and sticking sharp implements into them.
We can only trust to hope that the same is happening to the black balloon in Lilly’s tummy. i.e. … Disappearing, not bursting!
Later in the evening Lilly and Indi went to Auntie Helen’s beach house to play some more with Lewis and Gareth and Maddy and Charlotte. In bed at 10.30pm!!! What a huge day for Lilly.
What a precious day with family and friends.

March 17

Lilly woke up early then woke up everyone else in the house with her loud but beautiful singing. She lay on Mum’s bed and sang “We are one, but we are many….. blah blah blah ….We are Australian” We got this totally cute performance on video and should be available soon on her web site as a FREE download.
It was a busy day, shopping and preparing for Lilly’s birthday party. In the evening we went to the hall at The Adventure Resort and saw the Golden Pride Children’s Choir from Tanzania. These kids were incredible singers with fantastic rhythm and groovy dancing. Lilly stood up half way through the performance, closed her eyes and started dancing. What a darling child. We all left the hall feeling very happy and Lilly insisted on playing chasie, then she lay down and rubbed her bald head on the beautiful grass.
We met Colin’s good friend Squadron Leader Biggles for a while near the beach, then home for Mum’s yummy dinner of which Lilly ate none. Her appetite doesn’t seem to be returning. Then it was straight to bed before her big special day tomorrow.
Lilly’s present has clarified and stabilised nicely and should be ready for its occupants tomorrow.

March 16

Lilly slept well and woke early in her noisy hospital ward. Why do they polish the floors at 8am? With her fever gone, Lilly patiently sat in bed waiting for the doctors to do their rounds. She ended up escaping to the playroom in the new oncology ward and got checked over while she was playing with glitters and glues. The doctor declared her fit to leave, so we left without hesitation.
Lilly slept in the car and was happy to see the blue ocean around Phillip Island when she woke. Fish and chips for tea was great and Lilly played under the umbrellas in the rain with Indi, Bells and Tolly and enjoyed letting the water trickle off the umbrellas and onto her bald head. Pisces.
At home there were more games, a happy bath then bed. Such a gorgeous, happy day. Mum bought Lilly's birthday present today, she will absolutely love it.

March 15

Lou, Bells and Tolly came to visit this morning and Lilly had a great time playing with everyone, especially in the Starlight Room. When the time came to go to the Nuclear Medicine Dept. Lilly was worried and scared. The kids all played in the waiting room and took Lilly’s mind off things.
When it could no longer be avoided, Lilly cuddled up to Colin as the anaesthetist gave her the gas mask. Lilly struggled a bit but gradually weakened and gave herself up to sleep. The MIBG scan lasted for about 45 minutes and Lilly was soon trying to wake up in the recovery room. Mum carried her up to the ward and Lilly gave in to sleep again. After a few hours, Lilly woke with a 40 degree temperature, a racing pulse and low blood pressure. The doctor was a bit concerned so she told us to park in the overnight area.
Lilly was OK despite the temperature, a little irritable but in good spirits. She watched a movie and read a book with Mum. Tonight Lilly looked after Colin while Mum slept at Ron’s House. Lilly lost her last eyelash today.

March 14

Lilly got woken up early to go to RCH with Mum, Indi and Poppy for a MIBG scan. MIBG is injected into Lilly’s veins and is then absorbed by any neuroblastoma cells. Scans are done 4 and 24 hours later to see if the MIBG has accumulated anywhere. This scan will confirm the absence of cancer cells in the bone marrow and bones. It will also determine whether the tumour above Lilly’s left kidney has any living cancer cells within it, because large tumours can shield cancer cells from the chemo. The results of these tests will dictate the next steps.

They arrived at RCH early, so there was time for a quick play in the Starlight Room. The baton relay for the Commonwealth Games passed through the hospital and the TV cameras were rolling, so Lilly may be on the tele.

The MIBG injection and general anaesthetic went OK. Lilly won’t lie still for the long scan, so she has to be knocked out. Lilly recovered from the anaesthetic very well woke up happy for the first time. She is usually angry and aggressive. It was then up to the ward for a long wait for a flush of her Hickmans line and a dressing change. When the gear finally turned up, it was the sticky that Lilly is allergic to, so the booby sticky will have to be changed tomorrow.

Then is was over to Ron’s house for some dinner and an early night in preparation for the second stage of the MIBG scan tomorrow.

March 13

Lilly’s day started well when Mum came to pick her up from Nanny’s after 3 nights away. The joy in her face was so gorgeous to witness. Lilly and Indi and Colin went down to the pier in Cowes looking for stingrays while Mum slept. No stingrays today, but there were lots of tiddlers. Lilly insisted on removing her shoes and getting her feet wet along the foreshore. She is still so healthy and happy and her legs are getting stronger all the time. So good to spend time with the girls after a few days without them.

March 12

We can’t believe how well and happy Lilla is at the moment. She is an absolute delight. Nan and Indi played hide and seek with Lilla today and she squealed with delight as we hid behind the fence from Indi. It is hard to hide when someone is flat out giggling!! After dinner we sat out on the deck while the girls again rode their bikes and paddled in the shallow water from the sprinkler. Such simple fun, such a joy to be with our Lilla. Our hearts melted when Lilla sang to nan and poppy, “you are my sunshine, my only sunshine, you make me happy when skies are grey, you never know dear, how much I love you, please don’t take my sunshine away.” Hard to hold back the tears!! The girls crashed into bed quite late after watching a couple of videos, excited by the fact that Mum and Col would arrive in the morning to collect their little girls.

March 11

Lilla’s usual breakfast was ordered, scrambled eggs and toast, but she couldn’t bring herself to eat it. Poppy, Nan, Jess, Indi and Lil headed off for a coffee and had a great time on the jetty and playing in the rock pool. It is so heartening to see this precious little girl enjoying life to the full, and it is such a privilege to care for her. We treasure each and every moment with Indi and Lil. Feed time is always a challenge with Lilla, she longs to eat again, but just can’t seem to bring herself to enjoy food like she used to. We never thought we would get such a kick out of seeing Lilla eat a sausage she had helped cook on the barbeque, or be tempted by a couple of grapes or strawberries. Sharing Lilla’s journey certainly puts some perspective back into our life.

March 10

Mum and Col are having a break for the weekend so Lilla and Indi are spending 3 days with Nan and Poppy. Lill and Nan had a great day today, had the usual morning babychino at Madcowes Café then went for a stroll around Cowes. Lill insisted on visiting Time Zone, the big kids fun shed. She rode the racing cars, motor bikes and pressed every button she could find. We collected big sister indi from school and poppy from work and had fun at home together, Lilla and Indi riding their bikes in the beautiful sunshine. After a fun bath, the girls crashed after a big day and couldn’t wait to spend time tomorrow with Aunty Jess and Pez. Poor poppy had a restless night sleeping in Lill’s room in case her feed tube blocked.

March 9

Nice day today with Mum outside in the gorgeous sunshine. Lilly bounced on the trampoline strengthening her little legs. She lazed in the hammock then helped Mum turn the chooks’ compost. It was great fun watching the chookies race around looking for the upturned worms and bugs.
Lilly had a carefree evening playing hide and seek and generally being cute. Lilly ate more food tonight, at least five big spoonfuls of Mum’s yummy dinner. Just the thing for Harry, Ron, Hermione, Hagrid, Dumbledore and Hedwig. It is getting a bit crowded inside Lilly, especially since the addition of the owl. Lilly is so generous, offering Harry to anyone or anything who is feeling poorly, like Mum when she has a headache or the grasshopper that got stood on and was lying on the floor.
We still say that she is a child of the earth each night and thank her beautiful angels for looking after her and loving her. Lilly smiles and sleeps peacefully.

March 8

Lilly slept through and had a big sleep in after energetic concert last night. Indi had a day off school so her and Lilly made beautiful crafty things, although we would call it making a huge mess with lots of glitter. Mum took the girls to the playground in San Remo that overlooks the sea, which was a lot of fun playing on the swings, climbing trees and rolling in the grass. Lilly thinks the grass feels nice.
We had dinner and Lilly ate some food!!! She gets about 700ml into her nose tube each night, but normally eats very little during the day. After dinner, Colin took Lilly to visit Poppy where she played hide and seek, played with Ollie – Nanny’s dog and danced and giggled her way through to 9.30. She is such a delight and she made Poppy and Colin very happy. Once Little Britain was over, we went back to Mum’s. Lilly was ready for bed, but not until she did a big wee wee in the toilet.
Lilly is almost back to only wearing nappies at night now. Lilly was out of nappies altogether before this episode in her life started in November. She is also gaining strength in her legs and can almost stand up by herself.

March 7

Lilly slept through the night with neither pain nor nightmares. She bounced out of bed and got on with the day. She played with Mum, fed the chooks and squeezed up some fresh vegie juice. They were both pretty weary after all this so they relaxed for a while before picking up Indi from school.
Lilly and Indi dressed up as fairies tonight and put on a concert for Mum and Colin. What a great performance. Lilly and Indi had a bath and Lilly did not protest, in fact she enjoyed it. Her second bath in 3 months that she hasn’t cried about. Lilly barely (pardon the pun) stayed awake long enough for Mum to dress her in her super suit and lay her head on the pillow.
We found out today that Lilly’s tumour is operable! Great news. There is a vacancy in surgery on Thursday this week, or she can wait until the end of next week. Given that it isn’t urgent, we chose the later date because Mum and Colin are going away for the weekend so Lilly will have to wait. We also want to wait for the MIBG results so we can better understand Lilly’s situation and fully appreciate the risks and consequences associated with surgery.
Lilly is down to one eyelash on the upper eyelid on her right eye. It is just perched there waiting for the others to grow back. It is as if this defiant rebel eyelash is giving the finger to chemotherapy, saying “Is that the best you’ve got?”

March 6

We stopped Lilly’s feed into her nose tube at 1am and kept water going in until 3am We then woke Lilly at 7am and walked over to the hostable for her bone marrow harvest. We are always totally open with Lilly when she has procedures: eg finger prick, little needle, change the sticky on her booby etc... However, we weren’t sure how to tell her that she was about to have dozens of drill holes into her hips so we said nothing. Lilly knew something was going on though, and was very concerned.
We met the anaesthetist then we took Lilly to pre op. She was very upset and protested as the sedative was injected into her Hickman line. Her protest was short lived as she drifted off within seconds.
Lilly came out of her anaesthetic very upset but dosed up on codeine and consequently too out of it to complain too much. The anaesthetist said that he prescribed morphine in case Lilly is in pain when she wakes up later in the day, because the extraction sites can be very bruised and sore.
Mum picked Lilly up and cuddled her for a while and she drifted off to sleep - Lilly not Mum. She then carried Lilly up to her bed on the ward where she slept for a few hours.
Lilly woke after a few hours, lifted her shirt and said "Look at my two new band aids … can I watch Wizard of Oz?" She is amazing, no pain and no complaining. It appears that the surgeon was very gentle on Lilly as he made the repeated injections into her hips.
We met Lilly’s oncologist, Dr Waters in the afternoon and he said that the bone marrow harvest was a success with a good quantity of marrow being extracted. We commented on the care that the surgeon must have taken with Lilly and Dr Waters accepted our praise. We never realised that he occasionally donned the gown, mask and gloves. Lilly has been booked in for her MIBG scan in 8 days time.
Lilly had to have her lines flushed, her booby dressing changed, her nose pipe dressing changed, her injection port in her thigh and the cannula in her wrist removed. She was a bit frantic but bravely prevailed through each trial and was well pleased about the new array of band aids that resulted.
Lilly was discharged in the early evening and we loaded up Ice Block and headed for home once again. Mum made a yummy dinner and Lilly played for a while then crashed in her beautiful bed. It is hard to believe that she is so happy after such a serious, busy day.

March 5

Lilly had a bad night, waking up with bad dreams and calling out for Mum. Her temperature subsided at midday and we were allowed to leave the ward and go to Ron’s house where Lilly raced around in a toy car. She is a lot harder to catch when she plays chasie in her red car.
Lilly had a little sleep then woke up to a huge vomit. She held her nose tube as usual but the vomit was so severe that the tube came up from her tummy and popped out of her mouth. Lilly was freaked out. Colin was freaked out. The tube was going into Lilly’s nose and out her mouth! Lilly was panicking as Colin pulled the whole thing back through her nose and out.
Mum took Lilly back to the ward for a new nose tube and it turned out to be worse than the last one (See Feb 16) The tube seemed to go into Lilly’s wind pipe instead of her tummy pipe. Lilly ‘s breathing was laboured and she wheezed and panicked. The tube was only pulled halfway out and Lilly gagged and vomited. Mum managed to sit Lilly up and compose her as the nurse pushed the tube down and into her tummy. Lilly was so distraught.
In true style Lilly got over the trauma within a few minutes and she went down the street for a curry with Mum and Colin. She enjoyed the change of scenery and a nibble of a poppadom.
We got a camp bed for Lilly and we all squashed up and slept in our little room at Ron’s House.

March 4

Lilly woke at 4am with a 39.5 degree temperature. A phone call to RCH settled our fears a bit and we kept her at home under close watch. Lilly’s temperature was still hovering around 39 degrees later in the morning, so we took her to the local doctor. There was no obvious cause for the fever so he advised us to go to RCH later in the day for blood tests. Thanks to Dr Powells for being so gentle with Lilly.
Lilly slept for the rest of the afternoon at home while all the gear was packed. When she woke, we asked Lilly what DVD she wanted to watch in the car and she was very concerned asking “Why? Where are we going?” The kid is too smart. She was very upset at the suggestion of going to the hostable and she cried and cried.
At RCH, her fever persisted and low haemoglobin was detected. Lilly was admitted and a blood transfusion was ordered.

March 3

Nanny came over to visit and took Lilly for a coffee, then to the jetty for an adventure….they were gone for hours!
Tonight we all went to Prue’s birthday party. Prue is one the lovely friends of Lilly who shaved her head in December to help Lilly. Indi and Lilly had a ball playing and dancing. They crashed at 11pm, while Mum and Colin hung on until 3am.

March 2

Lilly slept until 11am after partying last night. Lilly and Mum had lunch with Nanny then they had a lovely walk along the beach at Rhyll. Colin got another fantastic surprise when Mum and Lilly visited him at work, then they picked up Indi from school and went to visit Tanya. Such a busy day socialising.
Lilly had a very reluctant bath then scored an early night. Mum had to give Lilly her first GCSF injection in her thigh and Lilly was unimpressed.

March 1

Colin got a beautiful surprise when Lilly and Indi gave him a beautiful present - The Biography of Billy Connolly. We packed our stuff and headed off to the hospital at 11am. Lilly's appointment was at 2.30pm but we had to allow some extra time for a finger prick blood test and at least an hour playing in the Starlight Room.
At 2.30 we met with Dr Waters confident yet dreading at the same time, but mainly positive and hopeful. We were given the incredible news that Lilly's bone marrow is now clear of cancer and her bones are also clear of cancer. Lilly's tumour has also decreased significantly. This is the intention of the chemo program but it is not always achieved. What a relief! The plan from here is to harvest Lilly's bone marrow and store for future use. Then the surgeons will review Lilly's CT scans and determine if the tumour is able to be removed. Before any surgery, Lilly will undergo an MIBG which will do a final scan for Neuroblastoma to confirm that all is still OK.
Before going home, Lilly had to have the dressing on her boobie changed which was frightening but Lilly was so brave. A new sub cutaneous port then had to be inserted into her thigh. Lilly was scared but she chose the location, cried for a few seconds then just wanted to know what sort of band aid she got this time. Lilly needs to have twice daily injections to stimulate white blood cell growth prior to her bone marrow harvest next week. We went straight from the hospital to a party on Phillip Island celebrating the torch of the Commonwealth Games passing through the area. The party was on the foreshore and it was huge, with music and fireworks. We told Lilly it was all for her. She loved dancing to the music although she thought the fireworks were too loud and a bit scary. She also loved seeing Nanny and Poppy there. The kid is literally glowing.

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