Kahlilla Blyss's Journey - Lil's Diary (May)

Please have a look at the November and December diaries. We have finally rewritten them and Lilly's first few weeks are described a bit more coherently.

Lilly will look and feel like this again very very soon.
Please note that no animals were harmed in the shooting of this footage

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Please scroll down for some new photos
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May 31

A crazy night with a 4am nightmare and tantrum when Col told Lilly that she was OK and safe. Lilly was so furious that she screamed and screamed and could not be calmed down. It is said that this therapy can cause mood swings and depression and the swing came about 5 minutes later when Lilly was all sad and affectionate and pleading to be hugged. Talk about a heart breaker and Col's heart would have melted if not for the huge vomit a few minutes later. Lilly was woken at 8.30am for a temperature test and she was wild once again - throwing her dummy this time - very serious indeed.

We spent the morning packing up the room, and playing hot potato with Mum.

We have accumulated much over the past 4 weeks and it took a few trips to the car to take care of it all. Lilly was given a platelet transfusion and her TPN feed was whittled away to nothing and soon all was disconnected. Lilly was so excited at the prospect of leaving the hospital and going to our new big house in the city.

Bye Bye hospital bed

We walked to our new appartment at the Bone Marrow Donor Institute in the beautiful sunshine and Lilly was very pleased to be on the outside. Mum had arranged all Lilly's toys and teddys in a corner by the window and it all looked very special. Mum was starting to feel a bit sniffly so it was time for her to leave and have a few days rest away from the patient. When Lilly found out Mum was leaving she was distraught and she cried and cried. Once Mum dragged herself away, Colin put Lilly in her pram and they went for a walk to try to find Mum and ask her to come back. It was a bit cruel but after 90 minutes and a very nice walk, Lilly asked to go back to her new house. Lilly saw a thin crescent moon tonight. It was barely visible in the twilight. Trust Lilly to find her moon. She has not seen it in 4 weeks and she was thrilled to spot it tonight.

Nanny came to visit this evening just as Lilly was ready for bed. Let's hope she sleeps better away from the hospital.

May 30

A big midnight vomit was the only interruption in Lilly and Poppy's good night's sleep. Lilly was awake at 7.30am with the builders and she was raring to go. Not even a change of boobie dressing could dampen her energy. There was the usual shower protest but once in, Lilly refused to get out, enjoying the warm water. The afternoon was filled with tea making, movies, stories and games. Lilly is not as sad as yesterday but she is very emotional and short tempered. The doctor saw Lilly today and said that her neutrophils are not excessively high but they seem stable enough, so she will be leaving the hospital tomorrow.

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Lilly will leave the hospital tomorrow!!!!
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We hardly believed what we were hearing. Lilly's intravenous feed will be reduced to zero by this evening and she will be discharged after a meeting with the doctor tomorrow. There are still a few months of hospital day trips for blood tests and outpatient visits for transfusions, but Lilly's treatment is essentially over with. It all seems so unreal and I am sure it will hit home properly tomorrow after the consultation with the ... ummmm... the consultant and we find out the full story.

Lilly slept for a lot of the afternoon and was a bit cross when Mum and Colin came in. Her annoyance was short lived and soon she was cuddling Mum. Poppy said goodbye and Lilly played with Mum and Col... and did a huge vomit. Her tummy is still not right yet Colin stayed with Lilly tonight and the girl was going at full steam until 11pm at which time she crashed. Sleep well little girl. Enjoy your last night in hospital.

She's got the whole world, in her hands - well ... feet at least

May 29

A good nights sleep for Lilly and Poppy. With less pumps now operating, there are less beeps and alarms and hopefully better quality sleep for Lilly. Lilly did, however wake at 3am again with a huge vomit. When it was all over and Poppy wiped her mouth, Lilly said "I'm alright now Poppy, you can go back to sleep". Poppy woke at 4am to the sounds of a little angel singing. Lilly slept through the Monday morning construction noise and woke at 9am. Our girl is feeling pretty healthy apart from a cough and a runny nose - small potatoes after recent ailments.

The morning was filled with movies and the making cups of tea. Lilly wanted to hop in a wheel chair and go to the Starlight Room and was so sad when Poppy told her she is not allowed to leave her room. Her afternoon was then rather sad, in fact if Lilly was an adult you would say she was a little depressed. Not unreasonable, given that she has been in this room now for 4 weeks. Stir Crazy is the expression. We need to keep Lilly's spirits high as her health gets better.

This afternoon was a combination of 5 minute sleeps and 5 minutes of playing... UP DOWN UP DOWN UP DOWN UP DOWN UP DOWN UP DOWN .. Poppy's arm is sore from winding Lilly's bed up and down so often. Poppy and Lilly made a paper butterfly which went into the scrapbook, then Lilly played with dinosaurs and watched her dinosaur DVD. She is OK... still a bit sad but OK. More of Poppy's stories and Harry Potter DVD went a long way toward brightening Lilly's evening.

Lilly's taps... this is nothing... there were 2 sets of taps a few days ago.

May 28

Apart from an early morning vomit, Lilly slept like a log. Colin woke up at 10am after hearing what sounded like an angel singing...it was in fact Lilly singing "Frere Jaques" What a nice way to wake up and what a big sleep in - no construction works on a Sunday. Lilly was a bit cranky when Nurse Kate came in to check her blood pressure, but she snapped out of it was soon her normal cute self. Lilly opened all her presents again that Yasmin gave her yesterday. They were contained in a fairy bag that was bigger than Lilly.

After that we hid under blankie and played with Lilly's magic (fibre optic) rainbow light which was so much fun. Then it was hot potato time with the big globe ball. The fun was cut short by the daily finger prick. Lilly crumbled for a few seconds then selected a finger and gritted her teeth. When it was all over, Lilly gave Colin a finger prick. She swabbed the finger, said 1, 2, 3... then pressed the clicker, collected the blood in a tube and put on a band aid. Colin wasn't as brave as Lilly but Lilly was such a caring little nurse that soon it was all over and he felt better.

Mum came to visit in the afternoon and Lilly was so pleased and gave her such a big cuddle. Mum told Lilly a story about Lilly and the nasty fox who was trying to eat the chooks, then there was a huge tickle session and it was just gorgeous to hear Lilly giggle. She has the most adorable chuckle. After the fun and games, Lilly had a bath!!! Her first bath in a long while and it wasn't so bad ... after the usual protesting.

Lilly seems so healthy and her blood results are great with a total white count of 1.1, of which 0.6 are neutrophils. She does, however not have 2 platelets to rub together so another transfusion was given. Platelet production is expected to recover slowly so there is no cause for concern. Poppy came in the evening and Lilly was really happy to see him, so Mum and Colin said goodbye and went to Phillip Island for a rest.

Uncle Darren came in to visit which was pretty special and Dave told Lilly stories of seals and the ocean. Lilly had such a nice evening with Poppy and Derek and she fell asleep in peace after her busy day. Lilly's feeds were increased a bit more overnight to 30ml/hr. She can leave the hospital when she is tolerating 45ml/hr.

May 27

A great sleep for Lilly but still with the 3am coughing fit and vomit. She woke so beautiful and bright eyed, all happy and playful and her first request was to make a cup of tea, then a video, then a sleep, then a video, then a sleep, then a game, then a story, then a sleep, then a video, then a sleep. The blinds and Lilly's bed have been raised and lowered about fifty times today and it is only 11am!! and we will gladly do it another fifty times for Little Princess Fickle. When we thought she was finally asleep, Lilly started singing "We are one, but we are many...." So very very sweet to hear her singing again.

Tea anyone?? Is this the cutest tea lady ever??

Yasmin came in to visit Lilly in the afternoon just in time to see Lilly waking from a big sleep. Yasmin did her fund raising walk for Lilly a fortnight ago, and today Yasmin had presents for Lilly and Indi and a big cheque for Mum which will sort out our petrol and parking for quite a few months.

Blowing bubbles with Lilly's new bubble blower thinggy

Lilly received a stack of Tweety stuff including a hat, a poster, PJs, a shower kit with a robe and slippers which Lilly will love wearing after her next shower. Thanks very much Yasmin for your care and love for Lilly. Lilly likes you.

She won't smile for yasmin ...

...but she likes her pressies

The remainder of Lilly's day was filled with games and stories and DVDs and..... A finger prick!!!! Lilly was so upset when she heard the bad news and her little face crumpled . But she dried her tears and gave the nurse her finger singing out "I'm ready now" After that we played Hungry Hippos, then it was time for an early night. Lilly's white count and neutrophils both increased considerably today and she is feeling great, although there was a big vomit later in the evening.

Lilly's tender finger pricked finger battling away at Hungry Hippos

May 26

Another good night's sleep with only one vomit, although Lilly did get very annoyed with the nurse who woke her to change her nappy at midnight. Lilly woke up feeling good and full of energy and had a great day with Mum. They watched movies, made some faces with crafty bits, decorated inflated surgical gloves and made the complusory cups of tea. Lilly even got out of bed and sat on the seat by the window and decorated the glass with stickers. They danced to Lilly's favourite ABC CD and Rocked Around The Clock like crazy people. Well as crazy as you can get whilst sitting up in a hospital bed. Lilly's new friend, Megan, also visited for a while which was really nice for Lilly.

Lilly playing with an excellent present from Angel Jennifer and Enzo

The doctors were very pleased with Lilly again who is showing signs of rapid improvement. Her total white cell count is 0.8, 0.3 of which were confirmed neutrophils!!!! No mistake this time. Lilly is on the scoreboard at last. The doctors were so impressed that they stopped all of her antibiotics which removed 2 more tubes from Lilly's IV collection. Lilly's platelets are low again and she will need another transfusion soon. Apparently the platelets are the last blood component to come good after a stem cell transplant. Lilly also kept doing her lung and breathing physiotherapy. Her recent tummy bloating made her take short breaths all the time so this helps her to expand her lungs fully. She is such a good girl.

Lilly showing Physio Phil how it is done... with pink bubbles of course

By the time Colin came to visit in the evening both Mum and Lilly were worn out. It is hard work being so busy and hard work also trying to keep Lilly from getting bored. Colin got a big squeezes from his girls, then Mum went for a well deserved rest. Lilly then went straight to sleep.

Hat swapping in Lilly's cold, windy, filtered air room

May 25

A peaceful night for Lilly apart from a couple of vomits. Lilly is on a trickle of food into her tummy and it will take a few days to get accustomed to it again. The doctor said that once her neutrophils elevate and appear steady, the antibiotics will be stopped and once Lilly is holding down food, the intravenous (TPN) feeding can also be stopped and she can leave the hospital. This may happen within a week!!! He did also mention that the neutrophils detected yesterday were actually not detected. Not to worry though, Lilly is feeling very well which is the main indicator at this stage.

It was another busy day for Little Miss Energy. We had dinosaurs, tea sets, DVDs and books. The girl is so nice to spend time with. Lilly fought off her drowsiness for as long as possible but drifted away at about 2pm for a beautiful afternoon nap.

Lill's tiara is a bit of a crown of thorns on her bald head but she can still manage a smile

There were still no neutrophils from today's blood tests but Lilly's total white cell count was up to 0.5 - almost double that of yesterday. There was a huge poo which is a great sign although not so great for Mum to clean up. Lilly's belly button has sunken ever so slightly below the surrounding skin, so her digestive system is working well and her tummy is getting smaller. There were no vomits and no blood noses which surely must impress Lilly no end. Mum looked after Lilly tonight and all was well and good.

May 24

An enormous poo at 3am woke Lilly who was then wide awake for a screening of her favourite bideo of the moment - Ferngully. 30 minutes later, she was fast asleep and didn't wake until 10am. Even the hammer drills vibrating through the walls at 7.30am from the renovations on the next floor, could not stir this sleeping beauty.

Lilly's midnight cinema

Dr Mel and Dr Ida came in for a checkup and were very pleased with what they found. Lilly helped Dr Mel place the stethescope on her tummy and Dr Lilly even listened to Colin's heartbeat.

The diagnosis : Lilly's digestive system has started to crawl along and her tummy has reduced in size. Her belly button has receded and is no longer an outie nor an innie - more of an inbetweenie. There are signs of neither fever nor infection and Lilly's chest is clear. The big news is that neutrophils have made their way back into Lilly's blood... not very many neutrophils but it is such a relief. Let's hope there are a few more tomorrow.

Once the doctors departed, Lilly went crazy with her new found vitality. She grabbed the camera and took photos of just about everything in the room. She made a crocodile hand puppet with a mobile phone case and made cups of tea with her Cinderella tea set. She was all smiles and giggles and it was so beautiful to see.

The crash came just after midday and Lilly slept after such a hectic morning. We said a quick thankyou to Harry for working so hard making the beautiful white jelly, and to Lilly's angels for giving Harry the beautiful energy and white light. Jellio in the Bellio

Later in the afternoon, the nurse had to wake Lilly and she was so upset. Even when Mum came to visit, Lilly didn't cheer up. In fact she was angry and hostile toward Mum telling her to leave. When Mum left, Lilly was very concerned asking if Mum went back home. She was so upset saying she wanted to give Mum a big hug. Luckily, Mum was just outside and Lilly gave her such a big squeeze when she came back into the room and they played and laughed together for ages.

Lilly's smile was taken away a bit later when it was time to replace the injection port in her tummy. We decided to place the new one in her thigh thinking that it was the least likely place to get hit with the barrage of jobbies currently brewing inside Lilly. Lilly was so frightened and so brave as usual and it was soon all over. After the drama, Lilly opened a present from Angel Shannon in America. It was a packet of dinosaurs and Lilly just loved them and she played and played with her beautiful little imagination going crazy.

In the evening Lilly and Mum had a lovely time and Mum was overjoyed to spend some happy times with her little girl. Getting Lilly into the shower was the usual fight, however once in, she didn't want to leave and she stayed under the water for ages and got very cross when the water was finally turned off, but Lilly did like her fresh clothes and sheets. Lilly only managed a few minutes of Wallace and Gromit before drifting off to sleep. Lilly woke after a few hours, played some tunes on her piano for Colin then drifted off to sleep once again. She is just optimising her new health and energy.

We over did the photos today but it was just fantastic to see Lilly so happy, giggling, laughing... normal.

May 23

Lilly woke at 3am with a sore tummy then slept restlessly until 6am when she awoke with a bomit. It was only a phlegm vomit but the effort started a nose bleed. Lilly's platelets are very low with a count of just 12 - a healthy count is in the order of 200. Lilly had a tired morning with blood dribbling from her nose and bloody bile getting sucked from her tummy via her nose tube. She does however have a few more white blood cells now up to 0.3 - a count of 3 is considered healthy.

Today was procedure day which entails changing Lilly's boobie dressing and her nose tube tape which was caked in dried blood. Lilly was her usual scared and brave self and accepted her lot. Her tummy is better today, a bit sore but not as bloated. All other vitals are good and her temperature has been normal for several days now. Nanny came in to look after Lilly and Poppy went home. Lilly was so upset, crying and pleading for him not to leave her. Needless to say Poppy had teary eyes also as he rode his motorbike back to Phillip Island.

Colin looked after Lilly this evening and was greeted with a blood filled vomit and a subsequent blood nose. When all was cleaned up, Lilly started to watch a DVD while Colin read his book. Lilly then insisted on reading Colin's book to him, so he joined her on the bed and Lilly rested her head on his leg and proceeded to read, giggle and smile for photos. It was such an incredible burst of sunshine to see her so happy for a little while.

Oi baldy ... gimme back my bookmark or I'll bloody your other nostril

The fun was soon cut short by a huge runny poo - from Lilly , not Collie. The jobbie flowed upwards and out the front all over the injection port on Lilly's tummy - Refer Feb 16 for some Deja Vu. The port was cleaned well enough to administer the injection, but the dressing was covered in plop and the whole thing had to be pulled out much to Lilly's distress and protesting. She refused and refused saying "Later" and "Not ready", then she gritted her teeth and said "OK... I am ready now" Such a great little kid is our Lilly. With no neutrophils, the last thing Lilly needs is poo near an injection site. She was exhausted after all was extracted and cleaned up and she slept so peacefully. Bless her darling heart.

May 22

Lilly had a peaceful nights sleep, although she did push out 2 bomits and a nose bleed. In the morning Lilly was feeling well and she sat up to watch a bideo. The doctors had their daily poke and prod and concluded that Lilly's intestines are still not functioning very well, but she is not uncomfortable nor in pain, so they are still not greatly concerned. In fact they reduced her morphine further. Lilly's white blood cell registered again today but there are still no neutrophils, which we figure is not so critical at this stage because neutrophils fight infections and Lilly appears to have no infections at the moment.. White cells will assist her healing in general so bring on the whities!!.

Lilly alternated all day between "Hmmm... I think I'll watch a bideo" and 30 minutes later "Hmmm... Had enough... I think I'll go to sleep now". 30 minutes later "Hmmm... I think I'll watch a bideo" etc etc etc It was a good day with Poppy today, watching 30 minutes of nearly every DVD in the collection and listening to Poppy telling his stories. All of Lilly's vitals are good and she is feeling better and drinking plenty of water. Some pooh is starting to appear in her nappies. Hopefully her system is starting to work.

Nanny came to visit in the evening and Poppy and Nanny gave Lilly a shower. There was the usual trauma before and during the shower, but Lilly felt much better afterwards and settled into her fresh bed, thanked everyone involved, then slept.... for a while. After an hour it was the usual ... DVD, sleep, DVD, sleep... Poppy is fed up with Spy Kids 2. He did, however get a smile from Lilly just after 11pm and he would happily watch Spy Kids 2 one hundred more times for another smile from his Little Princess.

This is a friend of Lilly's named Caitlin, who cut her hair off and raised some money for Lilly. Such a beautiful and unselfish thing for a 13 year old to do. Thanks Caitlin. Lilly likes your new hair cut.

May 21

Lilly's temperature rose overnight, as did her heart rate and blood pressure. Her breathing was laboured with short gasps also, so the midnight doctor was called. Dr Alberto was very kind and Lilly let him wake her up and check her tummy and breathing. The conclusion was that Lilly's tum and chest are still OK. Her tummy is distended but still quite soft which indicates an accumulation of soft stuff rather than solid blockage.

Lilly was breathing easier in the morning and she woke at 9am feeling pretty good. Well good enough to sit up and do her mouth washes, watch Shrek and dance to the opening song (well ... jiggle her arms about a bit), smile at Colin (first one for a while), do a jigsaw, watch another DVD, give Colin a big squeeze, sit in the special weigh chair, get prodded by the very kind Dr Mel, release a big vomit and then some more mouthwashing. After such a hectic schedule, Lilly started to slow down so we changed her nappy and she drifted off into a peaceful sleep.

The mobile X Ray came to take a photo and Lilly was rudely awaken and she was confused and furious. A plate was placed under Lilly's sheets and she refused to lie on it. No amount of reasoning or cuddling could convince Lilly to be still, so we had to pin our poor Lilly down by her arms and legs. Lilly was so distressed. Restraining her is a last resort and it feels so awful to have to do it to her. It was over in a flash, and after a little cuddle Lilly settled back to sleep but kept having bad dreams, crying out "No No No ... I don't need to have one" It was just terrible to rob Lilly of the peace she finds in sleep. The nurse who came in to do a blood pressure test an hour later, was asked to postpone it for as long as possible. On a positive note, Lilly's morphine drip has been reduced by one third. Poppy came in the evening to care for Lilly and Lilly was pleased to see him. She had a quiet night alternating between DVDs and sleep.

May 20

Not a bad night compared to others. Any night without vomits has to be a good one. Lilly was awake and bright eyed at 9am, asking if she could watch a DVD. Her tummy started aching half way through the movie so Lilly lay down for a rest, asking for a story. Colin thought it as good a time as any to tell Lilly about Princess... The Missing Chook. Lilly is a big girl now and she had to be told sooner or later. She took the news reasonably well, made easier by the fact that Princess was, afterall, the chook who pecked little girls hands.

Fast asleep in her wooly hat

Lilly slept for a couple of hours and woke just in time to see Mum walk into her room. Such a nice way to wake up. At 1pm, Lilly had a normal temperature without panadol for the past 18 hours. This is an encouraging sign, especially since today's blood tests showed no evidence of neutrophils again. Lilly's viruses should be out of control by now... but they are not. 1pm also signalled 24 hours without a vomit.

So how is Lilly? She has a lot of phlegm and a heavy cough. Her mouth seems very healthy although her tongue is a bit white with thrush and her lips are dry but not cracked. Lilly constantly picks and peels away the dead skin on her lips. Lilly's tummy is more bloated today and is causing her acute pain at times. Her gut/colon/intestines have stopped working in that they are not sweeping the waste along the pipe to her botty. The nutrients in the TPN feeding go straight into the blood stream and bypass the stomach, but the liver sees a lot of food to be processed so it increases bile production. Since Lilly is not eating, the bile accumulates until it is sucked out or Lilly does a big vomit. Enough of the medical lesson. The bottom line is that the doctors have had a good look and are not too concerned at this stage although Lilly's tum is bloated and the skin feels very tight.

Lilly played with her tea set this afternoon and did some colouring in. Not for very long but it is very nice to see that her imaginative side is alive and well. Lilly had a very reluctant and stressful shower with much pleading and screaming, then it was into a clean bed with fresh clothes for a peaceful sleep, albeit it with short gasps for breath and little groans. Let's hope Lilly can sleep well, because she is totally over being woken during a blissful sleep for blood pressure and temperature tests and she is starting to let the nurses know how she feels.

Warming up after her shower

May 19

Yet another night of beeping pumps and routine obsevations by the nurses. Lilly got more sleep than Poppy, having this ability to nod off back to sleep straight after any midnight interuption. Poppy went to work at 5am and Mum's watch started. Lilly received another blood transusion and 2 bags of platelets. The daily blood test revealed no improvement in white blood cells.

Lilly's poor tummy was worse today, so full of fluid that her belly button has changed from an "innie" to an "outie". Her morphine was increased to help reduce her pain as much as they dare at this stage for such a little girl. Today was a big radiology day with chest and abdominal X Rays, plus an ultra sound. Lilly's chest is still clear, which is always a relief to hear, but she is retaining plenty of fluid in her large intestine. The doctors believe that her system will soon start to work normally, especially when blood cell production improves. Ironically, Lilly has an insatiable thirst, asking for water every 10 minutes. We hope she does not burst.

A kind and compassionate lady named Megan came to visit Lilly today. Megan brought lots of yummy organic food and helped care for Lilly, doing a great job as Lilly's drink monitor all afternoon. It is important that Lilly doesn't drink too much. Lilly took an instant liking to Megan and she loves her new teddy named Ally.

The nurses are still drawing the contents of Lilly's tum out through a syringe, but Lilly still had a few vomits when her tummy got full. The tummy evacuation technique has been refined to every 2 hours and it seems to have stemmed the vomits. Lilly watched a movie, Mum went to bed and Colin arrived to look after his little sweetie pie. Lilly is in good spirits despite the pain and the multitude of hoses attached to her like multiple leashes. Lilly gave Collie a bald head to bald head cuddle, and fell asleep. Lilly is in a new room with a gale force filtered air system, so Lilly wears her wooly hat to bed. Collie may have to do the same.

May 18

Not much sleep for Lilly and mum overnight, with so many visits from nurses checking the antibiotics and platelet transfusion. Lilly's dosing pumps were working overtime and beeping incessantly. Lilly is a little better, sitting up for a while and reading books with Poppy. She is still feeling pretty awful and there was no increase in Lilly's white cell count, so the fever is still ever present. She received a blood transfusion this afternoon, to make up red blood cell numbers. There is something wrong with Lilly's tummy and intestines and she is retaining fluid and her tummy is distended and sore. The docs gave her a new drug to help her wee a bit more.

Lilly had a happy day despite her discomfort and occasional vomits. She especially liked sitting on Poppy's knee, listening to his stories. Lilly often requests one of the stories that Poppy conjured up the day before. Poppy tries his best to remember the details of the impromptu tales and Lilly is quick to correct him if he makes a mistake. Lilly slept in the afternoon, then woke at 10pm, wide awake and ready for a movie. Toy Story was requested. Enthusiasm for anything is great to see and it is good for Lilly to sit up, but Poppy needs his rest. He is afterall, a Poppy.

May 17

A restless night for Lilly and Poppy with the usual routine interuptions and tests. Not much change for Lilly who is still very weary and sore. A chest x ray showed a healthy chest which is a relief because an out of control respiratory virus can degenerate into chest infections which would not be good news at all. Lilly sat up for a while and drew with Mum ... well she stabbed the paper with the pencil which was so nice to see. Lilly had a very reluctant shower then she sat in a chair all snuggly and warm and managed to smile for a photo.

Lilly had a tummy x ray because the doctors are concerned about the constant reflux of bile and worried that there may be an obstruction somewhere. The x ray showed a build up fluid in Lilly's intestines, so she was given yet another drug to try to sort this out. Lilly's blood count was down today with a reduction in platelets and white cells. A platelet transfusion was given. It is a pity that a white blood cell transfusion is not possible. Lilly went downhill a little in the evening, quite poorly, intolerant, fragile and very sad. Her temperature is very high in between doses of Panadol.

May 16

A better night for Lilly, sleeping peacefully in between the interuptions for temperature and blood pressure testing. She woke at 3am with a sore tummy and Colin rubbed and pressed Lilly's belly for a while which brought instant relief and cries of protest if Colin stopped. After a while, Lilly was given a morphine bolus and she drifted off to sleep, dreaming of pink elephants no doubt.

About a week ago, before Lilly was feeling poorly, she yelled something like this in the early hours of the morning... "Colin... You woke me up... you are too noisy" Colin had been snoring and he asked Lilly next time to yell out this... "Colin... Roll over" A few nights ago when Lilly's tummy was very sore, she couldn't roll over in bed so she would yell out... "Roll me over... Roll me over" in the wee hours of the morning. At about 6am this morning, Lilly yelled out "Colin.... Roll over" Colin jumped out of bed and started to help Lilly roll over and Lilly said "No no no... you roll over... you were snoring and you woke me up!" The most beautiful words Colin has heard in a long time.

After being so ill on Sunday, not saying a word all day and with no sighting on the horizon of an immune system, Lilly was expected by most to worsen. With gorgeous comments like that above, we just know Lilly is getting better and she is going to be OK.

Lilly had to have a blood test this morning via a finger prick and she refused and refused. The poor little girl was so upset. The nurse adopted a stern voice and Lilly finally relented and went about chosing a finger for pricking. Then, in all innocence, Lilly raised her middle finger and gave the nurse a one fingered salute, saying "This one" She flipped the nurse the bird!!! We laughed and laughed.

Lilly was OK today, but only just OK, very tired and sore and occasionally annoyed by fallen eyelashes getting into her eyes. Lilly's tummy is very painful and she can only lie on her side. A morphine bolus brought relief for a while and a chance to sleep. The nurses have been withdrawing the bile from her tummy every few hours and Lilly has been vomiting less and less. She wa, however, particularly upset when it was time for a shower. Her skin must be kept very clean during this immune surpressed period, and it upset Mum and Poppy so much to have to force her into the bathroom for a wash.

It was a weary afternoon and not even the helicopters landing outside could raise a spark and Lilly just lay in bed trying to sleep and keep still. Poppy kept her spirits as high as possible with his wonderful stories and infinite kindness. In the evening it was time for a change of boobie dressing which is traumatic at the best of times. Lilly was fed up with it all but she still managed to grit her teeth and put up with the yukky feelings of peeling dressings away from her skin and the tugging on her chest tube as it is scraped and cleaned. Such a gorgeous little soldier. This morning's blood tests showed that Lilly's white blood cells are now on the scoreboard with a count of 0.2. Hopefully this means that her neutrophils are starting to register also.

This is such incredible news!!

Lilly was quite relaxed tonight and slept easily although her tummy is very sore. We hope she is OK because she has to look after Poppy tonight.

May 15

Another rough night for Lilly being woken up for regular blood pressure and temperature tests and nappy changes - Poor Little Angel. Lilly did an early morning vomit which was dark green and transparent - like dishwashing liquid. This is pure bile without partly digested food or stomach acid. Her vomits are happening about every 6 hours now instead of every hour, which is a blessing because they cause Lilly so much pain in her mouth and tummy.

Lilly woke at 9am looking very bright - well less miserable than yesterday. She sat herself up and watched a Tweety Bird cartoon for 5 minutes before falling back to sleep. Lilly has developed a crackly voice and her hair has started falling out. Later in the morning we cut her fingernails and they were so brittle. We told Lilly that her angels were giving so much love and white light and beautiful energy to her so that Harry Potter can help to make the beautiful white jelly inside Lilly's bones. With a hand on her hip we say...

"Jellio in the Bellio"

This is Harry's new spell to help Lilly feel better. The new white jelly will take all the yukky soreness and pain away.

The doctors came to have a look at Lilly and she hid under her blankie and yelled at them to go away - such a good sign after being so tired yesterday. After a few minutes, Lilly allowed them to look inside her mouth and listen to her chest. Lilly is very agreeable provided she is in charge. The docs said that her chest sounds great which is unexpected, given that she has two uncontrollable cold and flu viruses. They were concerned about her mouth which is full of sores and some thrush. It must feel so rotten.

Lilly had a mouth wash, then a shower. The mouth wash was willing but the shower happened only after a tremendous amount of resistance and pleading. Afterwards, Lilly cuddled up with Mum in a nice clean bed with beautiful fresh clothes and fell asleep after she warmed up. Not as cold and shivery as yesterday. Hopefully an indication that Lilly is getting better.

Lilly has been on a constant morphine drip for the past few days and occasionally receives a bolus (A quick high dose) when her pain gets severe. Today, Lilly did not need any boluses which is a good sign, although her temperature is stiil hovering around 39 degrees. The doctors reported that her neutrophil count is less than 0.01, which means zero. Neutrophils are the type of white blood cells that fight infections and germs within the body.

May 14

What a rotten night. Temperature and blood pressure were taken every hour and the doctor visited at 2am for a poke and a prod. They are concerned about Lilly’s high temperature and sore tummy, but Lilly’s sleep is also important for her recovery. Such a dilema.

A lovely lady named Yasmin came to visit this morning. Yasmin is doing a fundraising walk around Melbourne for Lilly, visiting favourite places enjoyed by Yasmin’s late mother. Lilly sat up and waved and even blew Yasmin a kiss as she left. After that, Captain Starlight came to visit and Lilly was so pleased.

Lilly went downhill in the afternoon. She has developed a little cough and her face is starting to swell up. We are desparately hoping that the events of December 4-10 do not happen again. But Lilly has no immune system, so the gates are open for all germs and viruses. Lilly just lay in bed very still, moaning softly. Mum rubbed Lilly’s sore tummy again and brought some relief for our little Princess. Happy Mother's Day Nellie.

We showed Lilly photos of home and she was very alert and attentive. We told Lilly over and over that very soon she will feel better and we will go home and see Indi and the chooks and the fish. Soon we will be playing with the garden hose and jumping on the trampoline and sleeping at the Cape Otway lighthouse.

Lilly at rest. Note the Otway Lighthouse photo. Lilly will be back there one day soon.

Lilly had a shower which was so nice but she was very cold afterwards and was shivering for a while under brown blankie refusing to have a hospital blankie placed on top. Lilly’s pain worsened in the evening, especially her sore tummy, so her morphine dose was doubled. She fell into a relatively peaceful sleep at 7pm.

May 13

Lilly woke up very sad and weak and quiet. She has adopted her special method of energy conservation where she says very little and only gives almost imperceptible nods or shakes of her head. The conserved energy is saved for sitting herself up for vomits because every bit of food or fluid entering her mouth or nose tube has come up a few minutes later. It is believed Lilly has ulcerations on her tummy lining which is causing the vomits, so everything is now administered directly into her blood stream, via her Hickman line, including:
- Magnesium and potassium
- Fat and TPN Nutrients
- Stomach lining soother
- Anti vomit medication – 3 types
- Saline solution
- Morphine
- Antibiotics – 3 types

Another virus was detected in Lilly. This one is a flu virus and affects the upper respiratory system. She should feel horrible and fluey soon. In the evening, Lilly’s temperature topped 40 degrees and the pain in her tummy is getting worse. Lilly asks for a firm tummy rub and it seems to relieve the pain. The doctor has been summoned.

May 12

A peaceful nights sleep for our little girl. The morphine has stopped the vomits entirely and Lilly is now comfortable and happier, albeit still weary. Our main goal is to keep all infections away from Lilly and make her next few weeks as bearable as possible.

A boggie sample was taken and it appears that Lilly has a virus not disimilar to a head cold. Antibiotics cannot combat such a virus, therefore Lilly is headed for very tough times. Please hope and pray that her immune system recovers as fast as possible - the only way to bring good health to our Lilly.

The doctors are worried about Lilly's virus spreading so her little room mate, Hayley, had to move to another room. Lilly is feeling more and more poorly but the morphine is helping her rest peacefully. NOT Rest in Peace.

May 11

A rotten night for Lilly, with those strained yukky vomits evey hour. She was so weary in the morning, hardly able to sit herself up for the hourly vomit. Lilly has not developed mouth ulcers as yet and she says that nothing in particular is sore. She just feels poorly and weak and tired and sad. Mum came in to Lilly's room and Mum started to feel sad. Lilly looked Mum in the eye and gave her a beautiful faint smile.

In the afternoon, the doctors decided to start Lilly on TPN feeds. This is where proteins and glucose are given intravenously. This is a bit drastic but Lilly has been vomiting for quite a while now and is becoming under nourished. Lilly did very little all day apart from lying still and trying to vomit. Mum asked if morphine was appropriate and the doctors agreed. It is not necessary for Lilly to suffer.

May 10

Lilly had a restless night.

When Lilly would go to the beach in the cold weather and she wasn't allowed to take her shoes off, we would lift her up and lower her to the water head first so she could get her hands wet. Last night, Lilly had a recurring dream and she kept calling out "Colin.. pick me up so I can get my hands wet" We hope her restlessness was due to beautiful beach dreams.

Apart from that ,Lilly slept peacefully until 6am when she woke with a huge vomit. She just kept going and going until her tummy was empty and her little legs were shaking with each tummy spasm. She did the same a few hours later. It is so rotten to see her like this. She feels so awful.

Lilly had a sleepy day and her temperature hit 39 in the afternoon and antibiotics were started soon after. Here we go again. Here's hoping that her stem cells cause the prompt re establishment of Lilly's bone marrow so some new white blood cells can join in the fight.

May 9

A rough night for Lilly. Her feeds resumed and so did her vomits. Her feed rate was reduced which helped. Lillly's tube was blocked again by morning. Lilly played all morning until Mum came to visit. Lilly had a bath and felt great in fresh clothes that did not smell of corn. Lilly had a sore boobie.

Mum couldn't clear Lilly's nose tube, so it was time for a new one. Lilly was sedated for her trauma session. She had to have a new nose tube, a change of boobie dressing and an injection port injected into her tummy. All three procedures went well, even the new nose tube. Lilly gagged a little but did not vomit. Lilly said "It hurt but I am alright now" She then enjoyed her sedative for a few hours, blissing away. Lilly's neutrophils have reduced to zero. Her immune system has left the building.

Lilly was OK this afternoon. She was a bit nauseaus on occasions, but she managed to keep some nose tube food down. The stem cell transplant is making Lilly do the ripest corn farts. Poooo weeee. What a champ. When not trying to vomit, Lilly was all smiles and songs. She slowed down a bit later in the day but brightened when Mum came to visit. The doctor says that if she continues to keep her food down, she can leave the hospital for a few days and stay at the special bone marrow apartments nearby. That would be an unexpected treat.

Colin arrived while Lilly was sleeping and Poppy went home. Lilly woke after a little sleep and asked "Where is Poppy? I like Poppy" Mum visited and Lilly was very happy to see her. It was raining so hard and Mum took Lilly to the window to look for lightening. Lilly alternated between feeling OK and sitting up, then feeling like being sick then lying down. Lilly did not vomit tonight although there were many attempts. She must be feeling pretty lousy. Lilly started watching a movie then she fell asleep. The sweet corn aroma is subsiding.

May 8

Still some vomiting overnight. Lilly's tube became blocked - for good this time, so sometime today the tube will be replaced. The positive side to this is that the vomits became less frequent when the feeds stopped due to the blocked tube. Lilly had had enough of the bed and insisted on sitting on Poppy's lap where she read books and drew pictures. So gentle and beautiful. Lilly gave herself her own medecine and the nurses were very impressed.

STOP PRESS : Mum saved the day by unblocking Lilly's nose tube, using the Nurse Paula technique!! Yipee for Mum !

Hurry Hurry!! Our sick little Lilly needs her stem cells

At midday, it was time for Lilly's stem cells to be returned to her precious little body. She went in to the treatment room with Mum and Poppy, where her stem cells awaited her arrival. The essence of her physical being inside one small sterilised bag. It was quite an emotional time for Poppy and Mum. The stem cells smelled of sweet corn . Lilly didn't see what all the fuss was about - she just wondered what the corn smell was.

There were no adverse rections to the stem cells and Lilly drifted off to sleep for the afternoon. Nanny and Auntie Jess came to visit later on and everyone had a lovely evening full of stories and Spy Kids 2. Lilly slept peacefully at 10pm.

May 7

A few vomits overnight for Lilly but not so bad given that her feeds have been stopped and her tummy is empty. There is just a little bile but Lilly still feels yukky. There was a little vomit at 3am, then Lilly heard the helicopter and was so excited saying that she hopes the sick little boy or girl is OK. One more vomit at 4am then Lilly slepy until 10am and woke up so bright and happy. She had a beautiful shower, did some craft with hayley, read books and did her mouth washes - such a good girl. Lilly started to fade in the afternoon with a few empty vomits and she laid down feeling pretty bad but she drifted off into a peaceful sleep after hearing about Lilly the beautiful dragon again.

Lilly woke after a few hours, happy but weary. She went for a little ride in a wheel chair, then we were told that Lilly can't leave her room anymore - well not until her immune system has recovered. Lilly was very upset, so Poppy's visit was timed perfectly because Lilly was so happy to see him. Lilly had a nice evening with Poppy reading books and watching movies in fast foreward mode in order to get to the good bits and avoid the scary bits. This is a good thing because Harry Potter and the Dragon is a very long movie and Lilly needs her sleep. Lilly looked after Poppy tonight.

May 6

A rough night for Lilly Blyss and Nanny. Her nose tube became blocked twice and she was woken up by the unblocking process which invariably ends up with a solid lump rocketing down the tube and into her tummy. She vomited on both occasions. In the morning the tube was again blocked and couldn't be cleared, so Lilly will have a new one inserted today - Lilly's worst nightmare. Nanny cheered Lilly showing her photos of home and better times. Lilly smiled in appreciation as she continued to vomit from her empty stomach. The last of the chemo drugs will end this afternoon.

Great news... Lilly's tube was unblocked thanks again to Nurse Paula giving directions to Lilly's nurse via telephone. Such a relief. Lilly slowed down a lot today but not too sad, except when nanny dozed off and Lilly had to tell her to stop snoring. Plenty of vomiting all afternoon until her tummy was empty and Lilly was very weary. Lilly had a happy shower in the evening and her eyes continued to sparkle. She vomited while watching Wallace & Gromit and Lilly remarked that vomit sounds like Gromit. Lilly had trouble sleeping so Colin told her the story about Lilly the beautiful dragon...

There once was a beautiful dragon named Lilly. She was such a happy dragon but she started to get a bit sick because she had a black balloon in her tummy. The doctors and the angels and Harry Potter all helped to take the black balloon away and Lilly the beautiful dragon felt so much better.

But Lilly's Mum was worried that the black balloon may come back, so the doctors gave Lilly some special medicine that keeps the black balloon away but also makes Lilly the beautiful dragon feel a bit sick. So Lilly the beautiful dragon asked her angels and Harry Potter to try to make her feel better.

So we say thanks to the doctors and the angels and Harry Potter and Mum for keeping Lilly full of vitamins and good food, and soon Lilly the beautiful dragon won't feel sick anymore and will be able to go home to her beautiful bed and then get her feet wet at Red Rocks Beach. We also ask Lilly the beautiful dragon's angels to love her and look after her and help her have a beautiful sleep. zzz...

May 5

Lilly slept well apart from the nappy changes every 2 hours and Colin's snoring. She did, however, wake at 7am with a huge vomit. There was so much of it - poor kid. True to form, she brightened immediately and went to see if the playroom was open. It was open and Lilly played for a few minutes before doing a yukky empty stomach vomit. Picking herself up again, she had a nice long shower and felt much better. She is just amazing. One of her chemo drugs has stopped and the other two have 24 hours to go. She is withstanding the fury of the chemo so bravely.

Nanny brought Indi into the hospital to visit and Lilly was really happy to see her, although kids at school are more likely to be carrying germs so Lilly won't be able to see Indi much when her immune system disappears in a few days time. Mum took Indi for a night on the town and Lilly minded Nanny for the night. Lilly was very tired and fell asleep early.

May 4

Lilly woke with a surprise at her new room. The room is very modern and is fed with filtered air from a HEPA filtration system. Her room mate is a little girl from Tasmania called Hayley who has the same cancer as Lilly and is on her final chemo prior to a stem cell return - just like Lilly. Lilly wasted no time in hopping out of bed and exploring her new ward, half walking, half riding on her trolley. She then had a 30 minute shower, such a nice change from the usual screrams of protest. During her shower, two Captain Starlights knocked on the door and Lilly excitedly invited them in. She was so happy to see them, absolutley thrilled she was. Captain Sarah returned later with a beautiful teddy with the softest fur. She said it reminded her of Lilly's hair.

The rest of the day was so busy, doing painting and craft with Hayley and opening presents! Lilly got a parcel from Luca the Tabby Cat containing a lovely pink skirt and jacket to be worn when Lilly is all better. Lilly slept for 4 hours this afternoon. She is feeling the chemo and slowing down a little. Colin arrived just as Lilly woke up and Lilly showed him the parents' room with the giant TV. Nanny dropped in to surprise Lilly which was a nice surprise. After that Lilly's boobie sticky had to be changed which was not a nice surprise. Lilly yelled and screamed and trembled as the tape was peeled away from her skin and tube. It must feel so terrible as the tube tugs on the skin on her chest. On completion, she dried her eyes and sat quietly to watch a movie. 20 minutes later she was fast asleep.

May 3

Lilly slept peacefully all night, despite nappy changs every 2 hours due to the constant flow of fluids into Lilly's blood stream. We had the vomit kit all prepared but it proved unnecessary. Lilly's nose tube blocked and she was about to have a new one installed when Charge Nurse Paula declared that she rarely changes nose tubes due to blockages and with the aid of a surgical clamp, a tiny syringe and a mighty push, the tube was cleared and Lilly was spared the trauma of having it replaced.

woke up very happy and wanted to get out of bed and go for a trolley ride. She was very brave for her finger prick, then she played with Play Doh with the other kids. Lilly made a lovely angel necklace and did some fun music therapy with Beth - the music therapist.

So the sun set on Day 2 of Lilly's final battle without a chink in her armour. She had a great day with Mum but she was disappointed at not being allowed to leave the ward and go to the Starlight Room and the gardens. If Captain Starlight is out there somewhere, Lilly would really love a visit. Lilly was transferred up to the new ward on the 8th floor as she slept. Very nice indeed.

May 2

Up early for the start of Lilly's final stage in this difficult battle. Mum arrived at the hospital early enough for some playtime in the Starlight Room. We met Bronte's parents, Natalie and Andrew and her sister, Molly. Bronte is having her black balloon removed today and we are hoping and praying that it all goes perfectly. Lilly played with Molly in the bubble pipe corner and Lilly said "Molly is my friend"

After as much procrastination as we dared, we went up to Oncology where Lilly was expected half an hour before. She was immediately connected to a saline drip, in order to flush her and dilute the upcoming chemo drugs. She will receive three chemo drugs continuously for 5 days. Sunday is her day of rest, then her stem cell return takes place on Monday. Lilly has 3 syringe pumps, a quad IV pump and a food pump all connected to her trolley. It is the largest collection of hardware we have seen on her trolley but it didn't stop our Lilly from taking it for a trolley ride up the corridor.

We were dreading today, wondering if this last chemo and stem cell return is essential or just an necessary precaution. Lilly is likely to become very ill over the next 2-3 weeks. We have resolved to commit to this final therapy and trust that the intention of the doctors is pure and that the drugs will act to rid Lilly of her cancer totally - and any nasty side effects don't detract from the absolute loving intention we have toward Lilly's recovery. No more dreading and no more hating the chemo. Lilly, our teacher, isn't bothered. She will take it in her stride and in a few months will be fighting fit once again. Having said that, she was still fighting fit at the end of Day 1- and very very cheeky.

May 1

Mum had a day at work and Lilly spent a wonderful day with Nanny. They started the day with a coffee and a babycino.

Nanny and Lilly went for a walk along the pier, then it was back home where Lilly rode her trike up and down Nanny's street for ages. She is so clever at riding her bike and her legs are becoming stronger and stronger.

In the afternoon, Lilly went to visit Colin and Poppy at work and she was so excited to see Prue and Leesa. Poppy was in an important meeting but it didn't stop Lilly from wandering in and giving Poppy a cuddle. Lilly and Indi played this evening and Lilly had a long shower without getting upset - in fact she actually enjoyed herself and did not want to get out. She drifted off to sleep with a smile - her last night in her own bed for a while. Hopefully it will be weeks rather than months .

Lilly is such a darling child ... With gorgeous eyelashes!