Our beautiful lil'
LILLY'S DIARY


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This lighthouse has been an enourmous source of strength for us and Kahlilla. When she was in hospital she was continually reminded that she will soon go back to this special place. The lighthouse is a reminder of happy times and a symbol of hope.

Please read about Lilly's 2006 Lighthouse Holiday - (July 4-7)




July 31

Kahlilla woke with a big cough and a slight temperature, so it was off to visit the doctor who found an ear infection and a chest infection. Despite this, Kahlilla still managed to have a wonderful day with Mum.

July 30

Kahlilla had a fever at midnight... 40.7 degrees. After many phone calls to Mum and Nanny and the hospital, Colin dragged Kahlilla out of bed and took her to the hospital on Phillip Island with Nanny. She was so good and trusting with the doctor who found nothing seriously amiss, however he strongly recommended that Kahlilla had a blood test at another hospital on the mainland. Kahlilla was very concerned asking what was going on. We told her that we have to take some blood and Kahlilla crumbled and cried. Then she wiped her eyes and said "Let's go home, I am almost happy now" ... Almost a Monty Python moment. Poor kid, trying not to feel sick so she can go back to bed. Some Panadol was given to manage the fever.

We drove to the next hospital and the doctor was so kind and gentle. We held Lill's arm while he drove the needle in and drew the blood. Kahlilla cried and cried. She then curled up with her blankie and slept whle we waited for the pathologist's report. There have been instances of failing blood production in stem cell transplant patients months after bone marrow appears to be healthy. The concern is that Kahlilla's white cell count and neurtophils were low. At 4am, the results came back and Kahlilla's blood was fine, slightly better than her tests from 10 days ago. We thanked everyone and headed for home where Lilly slept and slept.

Colin was woken at 1pm by Kahlilla singing in her bed. Such a relief to see her so happy and without a fever. We got dressed and drove into town to meet Mum, then we met the skin heads from the League of Bald Headed Men. Today was the annual bowling event. The girls had a bowl and it was a lot of fun, although Kahlilla became tired toward the end of the day and not in the mood for photos.





   Blossum the Possum came bowling and we managed a photo for her journal

On the drive home, it rained and rained and it was so good to be home. Mum and Indigo fell asleep while Colin and Kahlilla watched a movie. It was nice to see kahlilla brightening up again. It is easy to take her health for granted, especially with her being so healthy of late. We have to remember that she she is still at a delicate stage in her life and we need to do our best to keep her away from germs and illness.

July 29

A lazy Saturday for Kahlilla and family. In the evening, we invaded Nanny and Poppy's house for the most incredible lamb pie dinner while Mum went out for a night on the town. Kahlilla was very happy and incredibly cute all night, although she started to fade at 8.30 and we hastily said our good byes and put the little girl into her own bed.

July 28

3 year old kindy today for our Kahlilla Blyss and she loved every moment. She is so confident with loads of personality and she fits in perfectly. Before her diagnosis and during her treatment, Kahlilla was ill and lacking energy and it seems that now we are witnessing her true vibrant self so full of life and happiness.

Kahlilla was especially thrilled when she was selected to take Blossum the Possum home for the week. Blossum is a fluffy toy, nevertheless, we have to care for it and write a journal about what Blossum gets up to…. Stay tuned for the adventures of Lilly and Blossum. We will find a picture of a real possum for any readers who know not what one is.

At home, the girls were barely able to stay awake for dinner after such a hectic past two days.

July 27

Today is Musical Munchkins day, and Kahlilla was so good at it. She was attentive and did everything her teacher told her to do. She is the star student. The fun had to end and it was time to jump into Ice Block, pick her sister and head for the hospital. It is a long way to go for a dressing change so Mum asked Megan to meet them at the hospital and spend some time. The Starlight Room had closed, so Mum and Megan kept Indi entertained and Kahlilla distracted, which was relatively easy because at the chemo day centre Christmas in July. There was Christmas food, Christmas trees and a couple of presents each for the girls. Such a nice surprise.



   Kahlilla and her fairy wand... so nice to see her hair growing back

Once the medical procedures were over, it was all happening at Megan and Alf’s house. The kids had so much fun and they were amazed at the abilities and personality of Luca the cat. Luca can open doors just like Slinky Malinky in Hairy McClary. Thanks very much to Megan and Alf for their love and support and music over the past few months. Mum dragged the kids away when it was time for the long drive home.



   Megan, Alf, Indigo and Kahlilla



July 25

We heard the most incredible news this morning...

SAMANTHA HUGHES NO LONGER HAS CANCER IN HER BONE MARROW

Samantha was born on the same day as Kahlilla and also HAD Neuroblastoma. Please visit her website and let her know that the incredible love, faith, strength and patience of Samantha and her family has finally paid off.

Please visit Samantha by clicking here

Kahlilla enjoyed another sunny day with Mum. Mum didn't enjoy the day as much because she had a nasty visit to the dentist. The carnage was witnessed by Kahlilla, who will never complain about having to brush her teeth ever again.



   Kahlilla curled up in her basket for the night

July 24

Kahlilla had a sensational Monday with her Poppy. They went into town for their respective coffee and Babycino. It was so nice sitting at the cafe by the sea on such a sunny day with the ocean was so so blue. Together, they walked up the main street to visit Mum for a while, then they visited Rosa at Pino's Italian restaurant. With the socialising over, it was time to venture into the toy shop. There was a 4 year old party going on in the back room that Kahlilla insisted on gatecrashing. She barged in and introduced herself and won hearts. When she left the party, Kahlilla gave her fairy bread to the seagulls.

At Poppy's Kahlilla helped light the fire and there she sat, listening to Poppy's wonderful stories. It was such a fun day full of games and laughter... and food. Kahlilla ate and ate and ate which is such a good sign.

July 23

Kahlilla typed a few words a few days ago on this website. (July 20) You may have thought it was all gobbledegook, but allow me to translate. Kahlilla asked "What does LOVE start with" and we pointed to the "L" key. So she typed "L". She ended up typing this ...

lbmmciibah

L=Love
B= Blankie
M = Mum
M = Magic
C = Colin
I = Indigo
I = Indigo (She hit this key twice)
B = Blankie
A = ??? (Bugger... I forgot... But it was extremely cute)
H = Harry Potter

This evening was spent at Nanny and Poppy's which is always a great occasion for Indi and Kahlilla. The food is always yummy and the fun and good times are guaranteed.

We heard some news today about a boy named Kye, who was in hospital with Kahlilla 2 months ago. Kye has a neuroblastoma tumour behind one of his eyes and was responding well to chemo, but recently it has started growing again. Please devote your thoughts, prayers and good wishes to Kye because we believe that love and positive energy were a major factor in Kahlilla's fight.

July 22

Indy had one of her friends over and her name was Lilli. Things got a little confusing after a while, so we tried Big Lilli and Small Lilly, Hairy Lilli and Bald Lilly, Lilli Jade and Lilly Blyss. Our Lilly finally settled the issue reiterating that her name is KAHLILLA.

The weather has been warm and sunny so we spent much of the weekend outdoors playing on the trampoline, looking after the chooks and preparing the vegie garden for the planting of carrots and beetroot in a few weeks time. We believe one of the contributors to kahlilla's vitality is fresh vegie juice, so the vegies will be coming from our garden very soon.

July 21

Kindy day today and Kahlilla had such a nice time.



   Doing the cuddly toy dance



   Getting her reading glasses under control before story time



   Wearing magical dress up costumes



   Washing up after a busy day at Kindy

Tonight we went out for dinner because it was Mum's birthday and it was such a nice evening with the kids and friends and friend's kids. Good food and wine too... we seem to be approaching normality... whatever that is! Nell is the driving force in our family. She organises everything and she is the main reason that Kahlilla is so healthy with her research and commitment to the preparation of the various brews and concoctions for Lill. Her endless love for her family is just incredible to witness and be a part of.

Happy Birthday Nellie

July 20

Today was Kahlilla's big debut at Musical Munchkins where there was much singing and dancing with all the under 5's on the Island. There also plenty of opportunity to make a racket banging tamborines. Lilly enjoyed herself greatly and made a few new friends.

Have you noticed increased reference to Kahlilla rather than Lilly? A few days ago, Miss Blyss said "My name is not Lilly... It is Kahlilla" Our little girl is growing up far too quickly. Kahlilla is also starting to grow hair, with this incredidibly soft fuzz all over her head. She is our beautiful little furry koala.

Here is special message from Kahlilla => " hnnnnnnnnnnnnnnn9 99999088666666666666cfdfffffffffffffx ghhhhhhhhh lbmmciibah"

July 19

Up early for the fortnightly hospital trip and blood test. Lilly was so brave with her finger prick and she was so good when Dr Siong checked her over. He was very happy with her health and these are the results of the tests...

    Neutrophils => 3.5 (100%)

    Platelets => 53 (20%)

    Red blood cells => 79 (70%)

So Kahlilla is a little anaemic and she was on the threshold of requiring a transfusion, but her immune system is perfect!! The biggest news of all is that her wee wee test showed no trace of catecholamines which is an indicator of active neuroblastoma.

So it's So far so good for Kahlilla Blyss

We rushed down to the Starlight Room and Lilly had a beautiful butterfly painted on her hand. Then it was time to go upstairs for a major service on the various tubes around Lilly's person



Lilly had new anti clotting agent injected into her Hickman Line and then new boobie sticky which was yukky but over and done with so quickly with Mum assisting Nurse Gipp.

Next on the agenda was the new nose tube. The dreaded 32cm of plastic pipe stuffed up Lill's nose and fed down her throat and into her tummy. Kahlilla was expecting it but she was so scared beforehand and utterly terrified as we held her arms and legs and did the deed. We have not done this for 3 months and it was truly awful to have to restrain her. We were all a bit shaken afterwards, but Lill got over it quicker than Mum and Colin. We had an option not to replace the tube, so we knew that this trauma was avoidable and we felt terrible for it.

The quandry still exists over whether to remove the nose tube and let Lilly get hungry and therefore start eating properly. We made the difficult decision to maintain the nose tube feeding to ensure Kahlilla remains well nourished during this period of sub standard blood production, figuring that she can't afford to lose weight and nourishment whilst learning how to eat again. After the drama there was time for more play in the Starlight Room and Lilly needed 2 Captain Starlights to keep her occupied, which was just as well because Mum and Colin were drained and a bit sad. Lilly (The Budhist) knows that the past is irrelevant and good times were to had there and then with the Captains... Hide and Seek in particular.





   Blissful Kahlilla with her Mum and Captains Sarah and Jo



We dragged Lilly from the Starlight Room and headed for Collie's farm where there was firewood to be loaded and horses to pat. The chestnut was particularly gentle and Lilly loved her.... or was is a him? (It was wearing a winter rug)







July 18





   Can you spot the difference between the two photos above?



Lilly's nose tube got irrevocably blocked overnight, so Mum whipped it out this morning much to Lilly's horror. When Colin came home for lunch he had to look twice to see what the difference was in Lilly's face which was more incredibly beautiful than ever. Mum and Lilly had a nice relaxing day today which involved much music and dress ups and dancing.



July 17

Lilly had a nice day with Colin. They fed the chooks and found 2 yummy eggs. They visited Mum at work and Lilly made friends with a little girl named Ebony and together they ran around the shop playing and giggling while Colin chased them with the stapler (In a pretend scary kind of way) Poppy took care of the girls for a few hours in the afternoon and then we went to Pino's for dinner and it was nice to see Rosa and eat some yummy Italian food.


Kahlilla's Big Snow trip


We packed up all the gear into IceBlock and headed for the hills. After about 3 hours, we started to ascend Mt Baw Baw and the world started to turn to white. The girls were amazed and excited, and as soon as we stopped the car, they were out stomping in the snow, kicking it, picking it up and Lilly was eating it. Luckily we had already taught her the lesson about yellow snow. We met the good people from Camp Quality, had a yummy lunch and were shown to our chalet.



The weather was clear and the snow was fresh with good snowfalls only a few days earlier. Lilly colllapsed after the initial excitement and had a nap, so she couldn't join Indigo on the toboggan slope. Indi was a fearless speed demon.



Dinner was taken in the dining room of the main hotel with about 16 other families. It was a 5 minute walk from our room to the hotel, so we rugged up the girls and towed them to dinner on their toboggans.



After dinner, everyone socialised in a large play room and the kids had so much fun running about and meeting new friends. Lilly met a wonderful boy named Liam who was so nice and patient with Lill as they threw a ball to and fro for half an hour. We think Lilly was quite smitten.

We woke up the next morning to the sound of rain on the roof!! Oh no!! Rain is the last thing we wanted. We geared up and braved the elements and watched Indi have a ski lesson. Lilly was very patient but the novelty of the snow was starting to wear off as her face got wet and started to freeze. She still managed a smile however. Indi did so well at skiing.



Back at the dining room for lunch and many people returned wet and shivering, saying how freezing it was. The problem was that it wasn't freezing. It was about 3 degrees and had it been, say 2 degrees colder, we would have all been a lot happier, and it would have been snowing rather than raining. Nevertheless, us die hard Aussies, all went back outside for more after lunch. Lilly hung on to Mum while Colin had a ski.



Tonight was the Snow Ball and everyone had such a great time. Lilly and Liam danced for ages and Lilly was thrilled to bits. It was even better than a dance with the Snow man.



The next morning was warm and sunny and the snow was going fast so Mum went for a ski while Colin and girls took their time getting ready and posing on the stairs for photos etc...



Lilly and Indi had a few toboggan rides and it was so much fun. We were a bit concerned about Lilly's platelets so we held her extra tightly, ensuring that she did not fly out of the toboggan. Indi kept tobogganning, while Lilly and Colin walked up to the ski area to find Mum. It was a long walk with Lilly insisting on stopping at every snow patch and stomping on it. A bit like stamping in puddles but without getting wet.



At the ski area, we found Mum and Lilly was amazed to see Mum gliding down the snowy hill on her skis. Lilly saw Liam with his snowboard and rushed over to give him a hug.



So ended our ski holiday. We packed the car, said our goodbyes to the Camp Quality people and hit the road. Lilly was asleep within a few minutes, exhausted after a fantastic day. It was good that today was sunny because it left the girls with good snow memories.

Camp Quality are a charity type organisation who mainly operate camps for cancer kids and their families. Camp Quality is run by wonderful people and assisted by an army of incredible volunteers. If you want to visit their web site, please click here ==> Camp Quality

July 13

Lilly went a little stir crazy indoors with Mum today, especially with Mum trying to organise all the stuff for our huge snow trip tomorrow. Please drop in again on Sunday or Monday for a holiday summary and special snow photos.

July 12

Lilly and Mum went to visit Auntie Nat and Uncle Damian to have a look at their new baby girl, Darci. Lilly liked her new cousin very much and was so nice and gentle when she held and cuddled her.



On the way home they dropped in on Lou and Bells and Tolli and it was nice for Lilly to spend time with her little friends.

July 11

A happy day with Mum, trying to stay amused while it was cold and rainy outside. Although cold and rainy is good because this should mean that it is freezing and snowing in the nearby mountains where we are going this weekend.

Lilly's cute comment of the day... .

Lilly asked a question and Mum replied with "Ah Huh" .

Lilly continued with "That's the way Ah Huh, Ah Huh, I like it" .

Long live Goldmember and KC and the Sunshine Band!!

July 10

The girls had their usual Monday with their Poppy today and had a great time. They went to visit Alexander but he was not home so the girls amused themselves with Alexander's father's (Robbie) electrical gadgets. What a time they had! There were trains, toys and things that flew. Lilly's favourite gadget was Robbie's reclining leather chair on which the girls played for ages.



Next on Poppy's itinerary was a coffee at Mad Cowes and the girls had big babycinos. The cups were so big that Lilly could put her whole fist inside - which she did, squeezing her marshmallow like a sponge. Next there was a visit to the hardware which gives Lilly a chance to play with all the water features in the garden centre, then there was a surprise visit to Mum at her shop, and Mum was so happy to see her little girls (It should be noted at this point, that both Indi and Lill are taller than any other 6 year olds and 3 year olds, respectively, on the island.)

Back at Poppy's house, the galahs were fed just before Lilly collapsed for a late afternoon sleep, which was probably Poppy's strategy all along. How can a man make use of the stuff he buys at the hardware with Lilly the energetic, galloping around under his feet?



   "Thanks for the great day Poppy"



July 9

Lilly was up and dancing with Indi this morning with a look of pure happiness on her beautiful little face. It seems so unreal to look back only 7 weeks ago to when Lilly was so ill and hardly able to raise a smile. It is such a joy and a blessing to share her life with her after coming so close to losing it.



   Lilly having a happy shower



We watched the TV story about Dylan Hartung tonight and felt incredibly moved and very sad for all the kids who are still struggling with this devastating cancer. We told Lilly that the boy on TV had a black balloon in his tummy but he is still a bit sick. Lilly said she would give him Harry Potter to make him better. Best of luck to the Hartungs, peace and love and good wishes (and Harry Potter) to you all.

July 8

Such a lazy day after our exhausting/revitalising holiday. We slept, ate and unpacked. We all sat down and looked at the photos from the holiday and it was just great to remember the special times.

Colin stutters a little and as he was putting Lilly to bed he asked "Hey L L Lilly Are y y you my f f riend?" To which Lill replied "Y Y Yes, I I I am" Cheeky monkey.

July 7

We arrived at RCH just in time for a quick blood test before Lilly's fortnightly doctor's consultation. Lilly was unimpressed but was as philosophical as ever as she surrendered a digit for the usual finger prick. Her blood tests came back very positive with a healthy white count and a small increase in platelets and reds, so the doctor decided not to do a blood transfusion. This is such a promising indication of Lilly’s recovery.





Indi and Lilly played in the Starlight Room for a few hours and Lilly had a great time with Captain Starlight. We had to drag Lilly away and take her upstairs for a change of boobie sticky and a flush of her Hickman line and she was her usual scared/brave/gorgeous little self.



   Indigo playing in the Starlight Room, waiting for her sister to return



We hopped into IceBlock and battled peak hour traffic all the way to Lewis and Gareth’s house for dinner and more hyperactivity. It was so nice to be there and watch Lilly play with her friends, enjoying life.


Our Otways Holiday


Tuesday

The girls were so well behaved and patient on the big drive to the lighthouse and 5 hours later, we arrived safely in IceBlock. When Lilly caught her first glimpse of the lighthouse she squealed with delight. She was just so excited. It was a big part of her motivation to regain good health and we used the old lighthouse photo to visualise our Lill all healthy again.



Uncle Craig was waiting for us at the Lighthouse Keeper's cottage with hugs and smiles and a raging fire in the grate. He took Lilly for a quick ride on the special lighthouse motorbike which was very exciting. A few minutes later, Lou, Bells and Tolly arrived and the excitement rose to another level. Uncle Craig immediately took charge of the kids and entertained them while the cars were unpacked. Uncle Craig had planned a monster theme for the week and he even wrote a few monster songs keeping the girls enthralled with his guitar and silly songs. Although it all fell in a heap when he was told that monsters don’t really exist. These kids are growing up too fast.



Once we were organised, the first item on our itinerary was to climb the lighthouse. It was so beautiful in the setting sun, with a cool breeze but we were all snuggly and warm in our hats and jackets. Lilly was in blissful heaven standing at the top on the lighthouse looking at the beautiful rugged coastline and the sunset. We all then went back down for a big photo session in front of the lighthouse. It is so good to be here.



   Spot the happy bald kid








Wednesday

After a big sleep in and a yummy breakfast, Uncle Craig took us on a guided tour of the nearby forests. Firstly we went to see koalas in the eucalyptus trees close to the sea. Lilly complained of wobbly legs so Mum and Lou carried her.



Then the rain started so we naturally headed into the rain forest. We walked into the mysterious redwood forest and both the kids and adults were amazed at the beauty of the trees and the magical stream running alongside with a tree bridge.





   We found a little angel in the redwood forest



The kids wanted to get their feet wet and the chilly water took their breath away but it felt so nice and fresh. Mum nearly had a nervous breakdown stopping the kids slipping on the mossy rocks and losing them downstream. A bit over reactive but we don’t know how Lilly’s platelets are faring, so a heavy fall in a forest stream miles from anywhere would not be ideal.



The kids posed for photos in this beautiful part of the world, then they dried their feet and headed back to the cars stopping only to look at the incredible mushrooms growing on the forest floor.



The next stop was Triplet Falls where the kids walked for miles and miles around the beautiful rainforest and down to the waterfalls. Lilly’s first waterfall and she was absolutely captivated. She also walked and walked and climbed so many steps. She is getting so strong.





   A bit blurred but still gorgeous ... both waterfall and kids



When it started to get dark, it was time to descend into Melba Gully and look for glow worms. As we walked along past the huge tree ferns, Lilly said “Wow… This place is beautiful” The kids were very excited when they saw the glow worms. Thanks Uncle Craig for showing us such incredible places today.

Thursday

A cold and rainy day, so we relaxed indoors for most of it. When the rain did stop, Mum made huge bubbles with the kids and Lilly went for a ride on the bicycle.



Brooke and Angel came to visit from next door and all the kids went totally crazy.



We all climbed the lighthouse again and Lilly walked up nearly half of the steps all by herself…. Well holding onto someone’s hand in case she fell backwards. At the top of the lighthouse, it was so windy that you could hardly walk against it. Lilly was a bit frightened so we went inside and climbed into the light itself, a place where few people are allowed to go due to the delicate nature of the old crystal lenses. The consolations for the cancer survivor. Lilly was wide eyed inside the crystal lens in a magical world of magnified and refracted rainbow light.







We went for a coffee and Lilly had a babycino and a marshmallow. Such a special treat for a girl on a low sugar diet.



Lilly said “Bonjour” to a French family at the café and she met their 11 year old son named Ilan. Ilan had neuroblastoma when he was 2 years old. Ilan’s father gave Lilly a wink and told us not to worry about relapse. “Enjoy life and find happiness everywhere” What an incredible coincidence! It gave us such hope to see Ilan alive and healthy 9 years after his treatment. Lilly and Ilan then compared scars – Lilly’s on her left and Ilan’s on his right. Lilly waved and said “Au Revoir”



   Collie Daddy and the Little Miss Blyss



Friday

Up early to get on the road to get back to Melbourne in time for Lilly’s doctor’s appointment. A crappy way to end a fantastic holiday. We all had such a great time and a much needed rest.

July 3

Mum's day off today, so the girls spent the day with Poppy while Mum went to work. We are not sure what they got up to but Lilly was exhausted when she returned home.



We are going away for a few days to Lilly's lighthouse at Cape Otway. We are actually staying in the olde lighthouse keeper's cottage. The girls are so excited. Tune in on Friday for a holiday round up and lots of photos.

July 2

It was another cold day but we made the most of it when the rain stopped by walking down to the beach, where Mum tried out her new super sized bubble wand thinggy. It worked a treat and the girls were thrilled as they chased bubbles that were bigger than them. Like giant transparent worms.



We buried Indi up to her knees and then Lilly kept pushing her over and they both had giggle fits.



Lilly really loved these few hours at the beach. She got her feet wet, running away from the incoming waves. Her legs are getting so strong now. She played in the rock pools fascinated by all the sea life (snails and crabs) and she sat for a while and made a sand castle.

   Winter time at the beach is awesome!!



We sat around the fire tonight and we hooked up the camera to the TV and looked at the photos of today. Such nice times with the family all together again. These are the days.

July 1

It was a quiet day indoors for Mum and the girls due to rainy, windy weather. Colin arrived home in the evening with a new load of firewood and we all huddled up around a roaring fire reading books and playing games.