Our beautiful lil'
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November 05  |  December  |  January  |  February  |  March  |  April
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January 31

Today was Kahlilla's first day at school and she was really happy to be there.



Must teach the teacher how to spell!!




It was also Indigo's first day back


January 30

Lilla had a doctor's appointment today and we found out a few things:

=> Kahlilla's blood suffered a little following the radiation treatment, with her platelets being slightly lowered

=> It was confirmed that there are low numbers of tumour cells also in Kahlilla's bone marrow

=> This additional cancer does not alter the treatment

=> Kahlilla's will be treated with MIBG therapy every 6-8 weeks depending on blood count recovery

=> Kahlilla's treatment was confirmed to be curative rather than palliative

January 28

Beautiful days spent with Lill's cousins and Pete.



Happy to play with her cousins (Lewis and Gareth)




Happy to sit on Pete




Happy to play with Col on Pete


January 26

Kahlilla's heart melted when she awoke this morning to find the kittens snuggled up together.



Cuddly kittens


January 25

Aunt Georgia and Charli came to visit and all the girls had a wonderful day....



At the cafe...




Offering comfort...




Milkshaking together...


After drinks there is always time for a splash..



There is nothing better on a hot day, than having a dip in cool clear water.




Maybe there is one thing that is better ... watching Kahlilla running.
(Although she does look a little concerned, she is without pain)



January 22

More great days. Mum is glowing, Indi is as crazy as ever, Colin is working too much and Kahlilla is walking normally.



Luxurious deep bath with her mum


January 21

Did we tell you all that the girl's now have a second kitten!!!!!. He is a burmese just like Booshka and he is a he.

His name is Dennis.



Booshka cuddling her new friend Dennis


January 20

Lovely times for our family this week. Kahlilla was allowed back into the house, although she must still avoid prolonged contact with Sputnik.



Very happy to be back on her super tramp


Unlike England at the moment, it is not raining again, so there have been plenty of warm days spent at the beaches around our incredible island.



Beachcombing and splashing


January 16

A huge day for Kahlilla today, who went on a huge boat looking for seals. Lill was also asked to Captain for the day.



Just cruisin'




The seals were so close




Aye Aye Cap'n


Q. Why are pirates called pirates?

A. Because they Arrrr

January 15

Today was special for Kahlilla and her Mum, because it was the first time they have been together in 6 days. Lill was so pleased to see her Mum, and she was totally understanding about close proximity being harmful to little Sputnik. So quick hugs only.

In the late afternoon, we all went to the beach and had some lovely times.



Lill's favourite surf beach ... the one with the big pebbles and small waves




Back in the carpark we had fun in the setting sun making crazy long shadows.




Most of Lill's radiation is concentrated in her leg, so we thought it OK for Sputnik to receive a quick kiss.


Nellie


Take a look at this gorgeous pregnant woman...



Amazing, arty pregnant lady photograph.




An incredible, beautiful lady.


January 14

In the morning, it was off to the hospitals with Nanny for a full day of radiotherapy, tests, scans and doctor's appointments ... and a little Captain Starlight thrown in also.



MIBG scan




Lill with the Captain


Kahlilla was so strong and patient during the radiotherapy session, and she remained perfectly still during the MIBG scan by falling asleep.

The results for the day were all good...well.... mostly good. The MIBG scan showed up tumours in her left leg above the knee and below the hip. There are also small tumours in her abdomen near the site of the surgery that removed the old tumour.

The good news is that the MIBG was taken up very well by the tumours, indicating that they should respond well to the treatment.



Once back at home, Lill was relieved to be reunited with her kitten.


January 13

Kahlilla journeyed into town with her Nan, spending the night at Aunt Jessica's house.



Fun in the bath with Auntie Jessie


January 12

Still in isolation at Nan and Pop's house, Kahlilla had another happy day with neither pain nor pain killers.

Here is a lovely photo from Friday when Kahlilla went to the catherdral/castle after she was discharged from the hospital. Saint Patrick's is a beautiful, incredibly old catherdral that was built over 100 years ago!! It is rumoured to be the oldest in the world!! (Although there may be one in Rome slightly older)



May your light always shine, Miss Blyss


January 11

Kahlilla had a good night in hospital with her Poppy. Yesterday, the MIBG radioactive liquid was administered into Lill's blood over 15 minutes and caused no side effects and today she was also feeling just great.

Kahlilla's radiation levels were measured and she was discharged late afternoon. Once outside the hospital, Kahlilla went with nanny and Pop to visit the beautiful places that she could see from her hospital room, namely the gardens and the cathedral (castle).

Kahlilla will live at Nanny's house for a few days until her radiation levels have reduced to a point that is safe for Mum and Sputnik.

In the evening, Colin went to visit Lill and he took a very special friend in a basket. Needless to say that Kahlilla was thrilled to see Booshka again. What a sight it is, to see Kahlilla absolutley bursting with delight.



Kahlilla and Booshka




Kahlilla having a cup of tea with Booshka


It is interesting to see that Kahlilla has had no pain relief today, yet she is running around without a limp. She even climbed the ladder of the bunk bed stepping up onto each rung with her left leg first. Has the MIBG worked this quickly, or is there something else going on?

A scan next week will assess the extent of the cancer but not the effect of the treatment, which is assessed after the next round of MIBG treatment.



Kahlilla's Twin


We are sure most of you are aware of Kahlilla's "twin". Samantha Hughes lives in England, she was born on the same day as Kahlilla and was diagnosed with Neuroblastoma at the same time as Kahlilla.

Sammy went through her treatment at the same time as Kahlilla and went into remission last year, at about the same time also.

The rotten news is that Samantha has recently relapsed in the form of a tumour near her left shoulder. Please spare a kind thought and a prayer for Sammy and please also visit her website and send her your love and positive energy. She is also a very special girl!.
Visit Sammy by clicking here

Samantha Hughes



January 10

Kahlilla slept well with minimal pain, even though her left thigh is noticably larger than her right and it is very tender and sore to touch.

Lill said her good byes to her mum, then she travelled into the city with her Poppy and her Colin. At the Peter Mac Institute, Lill was quite happy and walking around, although she was apprehensive about what was to come. Kahlilla was shown to her room on the 9th floor which she liked (especially the aerial view of the forested park nearby) She crumbled when we told her that she had to have a needle so that the special medicine could get to work against the black balloon in her leg.

Colin had to leave at this point and Poppy will stay with Lill for the most radioactive part of her treatment. The radioactive liquid is injected over 20 minutes, then she is monitored and should be allowed to leave the hospital tomorrow or the day after.

Please keep our dear girl in your thoughts and prayers. We are all a little worried that the tumour is too large now to be managed by the MIBG treatment. The scan in 4 days time will give everyone a better picture of what lies ahead.

January 9

Lill was feeling better this morning and after a consultation with the nuclear specialists, it was decided to postpone any pain mamagement radiotherapy until after the MIBG treatment tomorrow.



Getting tatoos and a laser alignment in preparation for radiotherapy


Even though, Kahlilla must return to the city tomorrow, Mum decided to come home for the night. Kahlilla was so happy to be home.



Happy tears flowed when Kahlilla was reunited with her kitten


January 8

Lill limped into the Royal Children's Hospital to see her oncologist. He was concerned about the rapid growth of the tumour and has recommended immediate pain control radiotherapy. So Kahlilla is booked in at 10am tomorrow for external source radiation on her leg, followed by the scheduled MIBG treatment the following day.

It is all very overwhelming, yet hopeful at the same time. Kahlilla has perfected her limp for optimum pain minimisation and she gets on with it. She is such a beautiful, brave girl.

Many thanks for everyone's well wishes and for the promising stories of MIBG success.

Mum and Lill stayed in the city overnight at the house of our good friends, Megan and Alf, and Kahlilla was very happy to be there.

January 7

Lill started limping 2 days ago and the pain just got worse and worse. Tonight she was in emergency and an X Ray confirmed a detectable tumour in her left leg. She received a shot of morphine into her leg and she walked out of there.

Kahlilla is due for her radiation treatment on January 10th, so the aim is to control her pain until then.

January 4

What an amazing week with which to start the new year.

New Years Day was a scorcher, so we avoided the heat by staying indoors, however we spent most of the afternoon and evening at the surf beach.



Jumping the waves




Colin is weary but Kahlilla is still running




The compulsory sandy mermaid


The rest of the week was spent with family and friends and Kahlilla loved every moment of it.



Kahlilla, Mia and Booshka (The Kitten)






Kahlilla and her gorgeous cousin Charli




Kahlilla and Charli on Uncle Geoff's back



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