Kahlilla Blyss's Journey - Lil's Diary September

In full uniform

Kahlilla picked a flower for her new teacher... "Apple" we told her.... "Apple"

November 29

We all spent the warm evening at the nearby surf beach. Indi caught some waves and Lill paddled in the shallows and giggled and smiled.

The trouble came when a bee decided to take shelter in Lill's towel and as Mum was drying Lill's leg, the terified bee stung Lill just above her left knee. There was an "OUCH" and a quick tear, followed by the usual band aid, and it was all over

November 26

Kahlilla has just returned from a wonderful holiday in Queensland. The purpose of the trip was to attend the wedding of our close friends, but there was time for a visit to Dream World also.

On the plane

Very exciting

Having a rest from all the excitement

Normal kids .................. Crazy kids

Kahlilla's family

November 21

We took Kahlilla to the Peter MacCallum Institute today for a discussion with Melbourne's leading radiationer. It was a good meeting and we feel that MIBG treatment is the best course of action for Kahlilla.

It will involve sessions of intravaenous radiation about 8 weeks apart, with scans in between each. The number of sessions will depend on the scan results, however 3-4 are expected. Short term effects are minor, as are long term effects with little evidence indicating that this treatment causes infertility or further cancers.

November 20

Kahlilla was exposed to Chicken Pox at the recent camp (yet again), so we had to rush her to Melbourne to a hospital that could administer the appropriate precautionary injections.

Before we told her we were going for a needle

After we told her we were going for a needle.... welll... OK... so these pics were taken on different days but she was so sad when we told her and this is such a sad, wistful photo. Look at Lill's lovely hair, eyebrows and eyelashes

At the hospital Kahlilla was so frightened but so very brave. While we were waiting in the treatment room, we turned off the lights and made shaddow puppets using the the little ear probe light thinggy as a fine light source. Kahlilla makes a particulary good butterfly.

After many butterflies were greeted, kissed then eaten by several geese and snakes, the TWIN needles finally arrived. Lill copped one in either hip and it was just rotten to witness. True to form, she dried her eyes, thanked the doctor and smiled.

November 19

Our girls did indeed have a wonderful time on their camp, with the highlights being helicopter and pony rides for Indi and Lill respectively.

Happy to be back at home with her Mum

November 18

Our home has been awfully quiet over the past few days, because Indigo and her sister have gone away on a children's camp. 3 nights away from home.... what an enormous event for Kahlilla. We hope they are OK and enjoying every minute.

The camp is organised by Challenge, who have been an incredible support for us during this journey over the past 2 years.

Some photos of our new child...

Sparkle's Body

Sparkle's Heart

November 15

More happy days for Lilly Blyss

Sweet Girl

November 11

We have all just finished the Relay For Life, which is an annual event at many locations around the country to raise awareness of cancer and also raise funds for its research.

Lilly with her Nan and Pop - Cancer survivors were given red sashes
(The sign above reads HOPE)

The aim is for each team to keep their baton moving around the sports oval for 24 hours. It was a beautiful occasion and there were plenty of fun things for the kids to do.

Lill with guinea pig

Lilla's favourite attraction was the petting zoo. The calf in the above photo was responsible for several accidents. The first was a huge poo waiting to be stepped in...

Yuck.... Gross

The second accident was when the calf trod on Kahlilla's foot, leaving a deep hoof print.... ooooooowwweeeee!!!!

The nice ladies in the medical tent were so kind, putting ice on the indentation and soon the pain subsided. That was one heavy calf.

Before too long, Kahlilla was back with the animals

In the evening, there was a candle service, where candles were placed in white bags to celebrate the survivors and brown bags to remember those who have lost the battle.

Mum, Lill and Lou

It was happy, loving, friendly, sad event shared by the wonderful people on our incredible island.

Beautiful Child ... May your paper bag always be white

November 7

Kahlilla has been generously giving out butterfly kisses with her new eye lashes.... surely the most beautiful feeling in the world!!!!

But wait!!!! (Tee Hee... I said butt)

Kahlilla's hair has started to grow back. She has the softest downy hair... just like a peach, and it is also the most beautiful feeling in the world!!!!

We are all constantly stroking and petting her ... softer than a koala.

Lill has been so fun and full of energy, climbing the walls (and the flue)

Dancing on the wood heater

November 6

More beautiful days, hindered only momentarily by a chest infection, one spiky 39 degree fever and a persistent cough during the nights....Kahlilla lets it all wash over her and she is just as affectionate and lovable each morning.

Just had to throw in a second photo of the adorable school girl

November 3

The girls had some friends over today (Nathan and Kaitlyn) and they were off and racing, having so much fun.

Maskies

Lill made her special Milky Rainbow for her friends

November 1

We told Kahlilla that the black balloon in her leg had not quite gone away yet and she was pretty cool about it.

The Omega Girl

Kahlilla went to her new school today, to get fitted out for a uniform and to meet her teacher for next year.... She starts at the end of January and she is very excited.

School Girl

October 31

Sorry about the delay in relaying news, but I was distracted by a particularly delicious bald kid. We have agreed that should we ever run out of food, Kahlilla will be the first to be eaten due to her intense yumminess.

... The better news is that the tumour has decreased significantly and therefore responding to the chemo.

The other better news is that there is now an alternative to chemo.

The tumour is small enough to be tackled by MIBG treatment, which is similar to having the recent radioactive MIBG scan, only at an elevated intensity. This will give Kahlilla's entire body a mild dose of radiation with any neuroblastoma cells receiving a concentrated blast.

The MIBG treatment will be a once only dose (initially), followed by an MIBG scan and it should have negligible short term impacts, although complications may develop over the years to come.

So we have another choice to make... which is the kinder of the two options???????

October 30

Kahlilla had to have an ultrasound of her kidneys before we saw the doctor, and she did so well.

Kahlilla was so still and patient during her ultrasound

The ultrasound was trying to assess the kidneys, so Lill had to lie on her tummy for a while.

In the afternoon, we saw Kahlilla's doctor and he gave us some bad news and some better news.

The bad news is that the cancer is still showing traces of itself on Kahlilla's latest scans....

October 29

Kahlilla is doing so well.... happy and healthy. Lill went to kindi today having so much fun with her friends.

Tomorrow is the big day with the doctor...scan results.... what is next in store for Kahlilla??

October 28

Yesterday was the birthday of Lill's beautiful friend, Arabella. It was a forest folk party.

October 25

A big sleep in for a tired little girl. Lill and Mum had a wonderful day together and in the evening, we all went to see Indigo's school musical, Aladdin... Indi was just great on stage!

Shhhhhhh

Kahlilla found her name on the hand collection

October 24

The second part of the scan the next day was just fine with Kahlilla lying so patiently still.

We have an appointemnt for next Tuesday, when we will find out the results and discuss the next course of action, which will hopefully be as follows:

Go home, avoid hospitals and be a normal 4 year old !!!

Patient Girl

Luckily, there was time for a quick sheep ride before going home

October 23

The scans were a little traumatic, particularly the needle and the injection of the glowing radioactive MIBG liquid.

When the MIBG was injected a tiny drop spilled onto Kahlilla's pants, but it was quickly cleaned off. During the scan, we were watching the screen and a huge "tumour" appeared on Lill's left thigh!!

After a few heart stopping seconds, it was suggested we remove Kahlilla's pants and scan again. When we did, the "tumour" disappeared and Colin's heart restarted. (Mum could not be at these scans because the MIBG may harm little Sparkle)

Lying still

In the evening we stayed with Lewis and Gareth and Lill was so happy to see them again.

Kahlilla found a flower for Aunt Claire and she kept it in a safe place on the way to her house.

October 22

Lill is booked in for scans tomorrow. The MIBG scan, which is a nuclear scan that highlights neuroblastoma cells in the body, an an ultrasound on her kidneys which will be looking for any damage done to Lill's kidneys over the past 4 chemo cycles.

Please keep her in your thoughts over the next few days.

October 21

Happy days for Lill, who has not had a poorly episode for 3 days in a row.

Chemo can do strange things to a girl

Mum and Kahlilla making a banana and walnut cake ... mmmm ....mmmmmm

October 18

Well Kahlilla is OK, swinging between a perfect, happy, healthy girl to a struggling, brave, poorly girl. Mostly happy though and these times have been taken full advantage of, including a beautiful walk along the beach with Mum and Indi and an exciting hour making enormous bubbles in the front yard.

Bubbly Kids

October 16

Nell and Colin went to have some photos taken of sparkle today. Kahlilla came along also to hold Mum's hand during the ultrasound and tell her all about the jelly and also let Mum know that there is nothing to worry about.

Sparkle looks perfect and Kahlilla (and Colin) was amazed to see Sparkle moving about and rubbings its eyes. Watch this space for a photo.

Kahlilla visited the local doctor today and he told her she had a chest infection, which accounts for the cough and the bobbie nose and the fever the other night. So it is yet another dose of antibiotics for Lill.

This evening, Kahlilla started burning up again... 40 degrees and shivering. We contacted the hospital and they were rather concerned, mainly about her low platelets, saying that the fever can reduce platelet counts further, at which point there is a slight chance that the coughs and sneezes can then cause a cerebral bleed!!!!.

So we spent a tentative night, monitoring Lill's temperature, tensing up with each cough, ready to call for an ambulance.

October 15

Kahlilla has been mostly well apart from a brief fever last night, when she neared 40 deg C.

Mum took Lill to the local hospital today for a blood test and her finger prick bled and bled and bled, so much that the finger prick lady did not have to squeeze at all which pleased Lill. Once the vials were brimming, a band aid would not stop the bleeding, so Kahlilla's finger was bandaged, which pleased Lill also.

The blood results were comforting, with red cells close to 100% and whites about 25%, which is enough to stay out of hospital but insufficient for us to become complacent with hygeine and close contact with sick people. Lill's platelets were very low, but above the threshold for a transfusion.

October 14

Yet another lovely day, just playing at home. Kahlilla had her first go on the trampoline, now that her legs are getting stronger and stronger every day due to her walking, running and stair climbing. She ran and jumped on the tramp really well although she tired quickly.

Juicing juicy oranges

October 13

The motorcycle races are in town this weekend and Kahlilla just loves motorbikes.

Lill and her Aunt Jess

Kahlilla made biscuits today with her Nanny and they were so yummy.

Typical Lilly bikkie... a smiley face on a love heart

It is Nanny's 21st birthday and we had a party tonight with Poppy cooking the most excellent food.

Happy Birthday Dear Nanny

October 12

Lill has been just wonderful. She spent the last couple of days with her Nanny and Pop and she is enjoying life once more. She is eating well, walking and playing, laughing and smiling. We must get the camera fixed or replaced so she can brighten these web pages again and again with her smile.

Kahlilla's legs are getting stronger each day, however she still politely asks for a little help to climb up steps. As she steps up, her little quads tremble, but she digs in and gets to the top feeling very pleased with herself. We just need the rain to stop so we can jump and run on the trampoline.

It is the Moto GP on Phillip Island this weekend and Kahlilla is getting excited about all the motorbikes roaring up and down the streets. We may make a last minute dash to the circuit to watch the race if the weather isn't too bad.

October 10

Another great day for Kahlilla after a cosy sleep in Mum's bed. She started to slow down in the afternoon, but that was sorted out by a marathon session on the loo pushing out several weeks worth of hospital backlogs.

Col and Lill had a beautiful couple of hours at the swimming pool. So many of her friends were also at the pool and Kahlilla was her usual giggling self, paddling like mad and swallowing water. Good physio for her arms and legs also.

Mum is battling a bit at the moment with the usual early pregnancy symptoms .... nausea, tiredness, headaches, weight gain.It's been difficult to give her all when feeling so rotten. She's 11 weeks on now so things should settle soon.

While in hospital Kahlilla received a package from Catrin and Family from Germany! It really brightened her (and mums) day with all sorts of home made goodies. Thanks beautiful people, your loving support goes a long way.

October 9

A beautiful day at home for Kahlilla, but a sad day also with Lill and Indi's dog being put to sleep due to large tumour in her tummy.

Regan was a 15 year old Australian cattle dog. She was the best dog in the world and can never be replaced. With this loss goes Nells beach walking furry friend who's shared many teary cuddly days with her. RIP Regan ... you outdid most people I know.

Kahlilla said, "I don't want Regan to be dead" . She was really keen to get home to her.

It was a cold night, so we made the roaring fire that Kahlilla has been reminded about for the past 3 weeks .

Very cosy with Mum (Camera flash is broken)

October 8

Kahlilla announced that she wanted to go home when she awoke this morning. We started packing our things, hopeful this would influence the doctor's decision.

As it turned out, the power of positive thinking prevailed once again.... The doctors agreed to discharge Kahlilla provided her blood counts were satisfactory.

The nurse managed to catch Lilly for a blood test. Kahlilla was zooming about in her pram because she can only stand for a few minutes on her thin, wasted little legs.

As it turned out, her blood was not satisfactory and she was in need of a red cell transfusion. 6 hours later, we had the car (borrowed car because IceBlock has a serious illness of its own and is at the car doctor) packed to the roof with Kahlilla tucked away in the back seat amongst pillows and doonahs, and we were zooming. We would have snapped a very cosy photo had the flash on our camera not fizzed a few hours earlier.

May last night be Kahlilla's last overnight stay in any hospital for.... the next 80 years or so.

October 7

Kahlilla had a peaceful sleep, waking once again in a happy mood. After demonstrating some vomit free eating, the doctors allowed a few hours absence away from the ward. Kahlilla chose the playground.

Matchstick legs

Back in her room, Kahlilla was ready to try out her crazy new doughnut pillow chair thing.

This skinny girl weighs less than she did 2 years ago before she was diagnosed

In the evening, we were transferred to a different room... with a great view of Melbourne.<

October 6

Kahlilla awoke at midnight asking for water, which she vomitted immediately. She awoke again at 3am a changed person. Her eyes were clear and the requested water stayed down this time.

Lill slept late, finally waking in a beautiful soft mood. She ate half an apple, cut into waffer thin slices, and she drank so much water. She also giggled quite a lot.

Kahlilla's laughter => Glorious sights and sounds

October 5

A terrible day for Kahlilla. A day of sore tummies and relentless vomits. Lill's white cells have not increased at all and she is feeling very ordinary indeed.

If she does not start eating and keeping food down very soon, Kahlilla is headed for a nose tube. The dreaded nose tube... only slightly more desirable than starvation.

Finding peace in sleep in between vomits

October 3

Lill ate some food again today.... some yummy pasta lovingly cooked by Mum. Lill has not vomitted for 2 days now, which is a great sign that her digestive tract is healing itself. The aim now is to decrease her intravaenous nutrition and increase her mouth food.

Lill also has a few more white blood cells.... not many but a few more than yesterday. Her cough is still persisteing but the aching throat has calmed down a little.

October 2

Kahlilla had a rotten night and a lousy day, although she managed a few smiles throughout.

Lilla and her hose collection attached to her arm and chest

Overnight she received blood transfusions which called for repeated blood pressure tests, waking her each time.

In the morning, one of her hoses had loosened and fallen off, so her port needle had to be changed.... after only one day ..... Bugger.... it is bad enough changing the needle once a week.

In the afternoon, we wheeled Kahlilla downstairs for her CT Scan. Putting her under the anaesthetic was quick but frightening for Kahlilla. The scan was over quickly and she was soon in recovery. She awoke briefly, cried then fell back asleep. She has emerged from all of her previous general anaesthetcs very badly, feeling disorientated, frightened and furious. We tip toed around her, letting her sleep, hoping that the effects would dissipate as she slept, after which she would merely awaken from a long sleep.

The results of the scan depicted a normal stomach and small intestine. They also reported no change at the site of the surgically removed tumour above her left kidney. This is a relief as this is a likely place for cancer cells to start up again.

Lill ate half an apple today.... and it stayed down.

October 1

A much better night, with a few almost vomits and plenty of sleep. Kahlilla ate about half an apple this morning ... her first food in about 9 days. Let's hope it stays down.

The nice lady from the coffee merchants at the market gave Kahlilla this gorgeous mug.

The doctors are still concerned about Lill's digestion, so they are organising a CT scan for tomorrow of her tummy.

There is also some concern over why there are low sodium levels in Kahlilla's blood, so hopefully the answers can be found with a few more scans and tests.

Kahlilla's white cells have also retreated, so we are still waiting for the resurgence of her immune system. All things considered, the little... sorry..... big girl is feeling better and making the most of feeling better.

Nanny's Summary

Colin has computer problems so just a quick update from Lilla’s nan.

Kahlilla has had a very difficult few days as she continues to fight infections. The doctors have said that if they isolate any further infections, they will consider removing her port, as this may be the source of infection.

Poppy has spent the past 2 weeks at the hospital helping care for Lilla and it is so hard to see her having to fight so hard for what should be every child’s right – good health.

Col’s message today said that “her white cell count is finally improving. Lilly is feeling ok …. She even shed a happy tear a while ago”. An improvement in white cell count is fundamental to her ability to fight infections.

Even though she has been very sleepy from the morphine, she doesn’t miss a thing. The mum of another child was sleeping and turned over in the night, making a familiar sound as she stuck to the uncomfortable vinyl chair. Lilla declared “you farted Poppy” much to the amusement of all in earshot. Bless her little heart, even though she is really unwell, she never fails to bring a smile to all around her.