Our beautiful lil'
LILLY'S DIARY


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December 1

Lilly’s dressing is full of blood so Mum takes her to the Phillip Island Medical Group for an inspection. The doctor heard a faint crackle in Lilly’s lungs which could be a chest infection so Lilly arrived at the RCH emergency by ambulance which was all very exciting.

A blood test confirms that Lilly is neutropenic, which means that she is deficient in a type of white blood cell called the neutrophil, which fights infections. She also has a fever so she has what is referred to as febrile neutropenia and she feels terrible and keeps asking to go home. Lilly is once again connected to pumps and pipes which feed her antibiotics, platelets and fluids.

Lilly needs her boobie dressing changed, so she is doped with a sedative called Medazalan and she has gorgeous 3 hours feeling all drunk and stoned. During this time her dressing is changed which was so stressful for Lilly that she wet the bed. She is finally admitted and sent to an isolated room on 5 West at 4.00pm, Lilly still under the influence of the sedative and she wanders around her bed staring in wonder at everything until she blissfully falls asleep at 5.00am.

December 2

Col slept by Lilly’s side overnight. Lilly woke up very upset and was tired and frantic all morning calling for Mum. The oncologist came to say that there was some ambiguity in the bone scan from last week and that the cancer has not actually spread to Lilly's bones. This is great news because neuroblastoma is harder to treat when it is in the bone.

The news didn’t cheer Lilly up, however and she wouldn't let Dr Fiona check her dressing or listen to her chest. She was really stressed and angry and screaming her loudest screams ever. Lilly was so frantic, that she weed on the bed which made her even more upset, so Dr Fiona siad she would try again later. Mum arrived a few minutes later and enveloped Lilly in a gorgeous cocoon of love and peace. The bond between Nellie and Lilly is so beautiful, especially the sort of soothing power seen today.

Auntie Jess minded Lilly while Mum and Col went to a meditation seminar, then both Mum and Col slept in Lilly’s room for the night.

December 3

Lilly is better today. Jess and Ben came to visit and Lilly had a little bath.

December 4

The chemo has killed Lilly’s mouth and throat bacteria and she has developed a sad cackle in her voice. Her temperature is hovering around 39 degrees.

December 5

It was a tough night for Lilly, feeling poorly and pining for mum. It was a tough day also with her temperature greater than 39 degrees all day. They started her on antifungal antibiotics. The cackle in her voice is getting worse. She must feel so awful.

December 6

Last night was Lilly’s worst night yet and she wet the bed twice - poor thing. Lilly is so sad. So utterly miserable. The doctors started her on morphine to ease her pain and she received another blood transfusion. The antifungal medication can cause ear damage if dosed too high, so Lilly must have regular blood tests. So Lilly had a crappy night, woken up twice for finger pricks. Lilly was so good, giving the nurse her finger at midnight, despite a temperature of 41 degrees and a heart rate of 195 bpm (Lilly is hooked up to a heart rate monitor overnight) She must feel terrible but she is still kind to the nurses.

December 7

Lilly awoke in a fury, with a burning fever and a sore mouth. She was sad and angry and she sat on the bed dribbling, crying and boggies streaming from her nose. Her entire head was leaking. She was so forlorn and desolate for an hour after waking up and she cried and cried.

When Mum arrived, she tried to console Lilly, running fingers through her hair but Lilly was furious and yelled and pushed mum away. Nell moved away with a clump of hair in her hands and reality king hit us and blasted away all remaining traces of denial.

Nell cried and when Lilly saw it and reached out to dry mum's tears. They had a big cuddle and Lilly said sorry for making mum cry. How sweet and kind is this girl? She is only 2 yet she comforts Mum during what was the most painful morning of Lilly’s short life. So Col cried.

Lilly's day went downhill with fever, no eating, no drinking - not even swallowing spit. She slept most of the day and was constantly irritated by hair in her eyes, fingers and her da. Uncle Dan and Georgie and Charli came to visit and they really brightened Lilly's room with their kind presence. Dan went back home to get some clippers just in case we decide to cut Lilly’s hair.

Lilly had a bath in the evening and heaps of hair fell out, all clumpy and yuk so Col clipped her hair and gave Lilly a No.1. Lilly was a bit unimpressed at the time but I think she liked the final result. She looks great with a bald head and she should be more comfortable now. We put Lilly back into nappies tonight and she was again unimpressed. Her fever still over 38 degrees.

December 8

Nanny and Pop came to visit and Lilly had a better day. Poppy looked after Lilly tonight as Lilly's fever died away a bit.

December 9

Lilly woke up distressed and angry. Such fury from a little girl who has previously known little anguish. She was yelling at mum and hitting mum and it was heartbreaking to see when there is very little you can do to help or take her pain away. Lilly still has mouth ulcers - poor baby. Her voice is all crackly, like that of an old lady. We noticed Lilly's eyelashes falling out today. Her beautiful long lashes.

Lilly kept saying that she won’t get better and will never go home. Being a child, Lilly only knows the present and we were worried that she could only imagine herself, sick in this isolated room, so we showed photos on Lilly’s TV using the digital camera. There were photos of home, the beach, the chooks, Lilly’s room and Lilly’s friends. We kept telling Lilly that she will soon feel better and that we will be home soon.

December 10

It was a rough night for Lilly. She refused to wear a nappy and she wet the bed. Lilly was miserable today. She had a huge tantrum that lasted for an hour, telling Mum and Colin to get out. She tried to escape getting halfway out of bed and it was heartbreaking having to restrain her. She was easily overpowered and Lilly was just so desolate and forlorn.

Later in the day Mum got the make up out and Lilly painted Mum’s and Col's faces and we caught the first smile from Lilly in a while - almost a giggle. Lilly is still not eating or drinking. She tried some ham and chocolate but her mouth and teeth were too sore. We may take Lilly home tomorrow if her temperature stays down.

December 11

A better night for Lilly and she was happy to see mum in the morning. In the evening, we were told we could go home and Lilly was terrified at being disconnected, thinking that they were going to pull her taps and pipes out of her body. Once we convinced her that this was not going to happen, she brightened a little. She picked up further when the 4 pumps and tubes were removed. She picked up more as we left the room. She smiled when we got outside and she was grinning when we got in the car.

During the Motor Bike GP, there were thousands of bikes on Phillip Island and Lilly would point to a bike and say "Oh ... Motor Bike" "Oh ... Motor Bike" "Oh ... Motor Bike" etc etc etc. As we drove away from the hospital this evening, a bike overtook us and this little voice could be heard from the back seat "Oh ... Motor Bike" It was such a gorgeous sound. We know she will be OK. The road ahead is going to be hard but Lilly will be OK.

Lilly had a drink of water in the car then fell asleep. She was upset when we arrived home and she wouldn't get out of the car because her sister, Indi was not there. Indi has been spending most of the last few weeks with Nanny and Poppy.

December 12

Lilly slept well in her own bed but we had a difficult day because Lilly was grumpy and angry. She ripped her nappy off and deliberately did a wee in Mum's bed. Both Nell and Col got mad at her and we felt so guilty - Lilly went through hell for 11 days and we can't begin to know the mental impact on her. We have to be infinitely patient. Wee wee is Lilly’s last fragment of control of anything in her life.

December 13

Lilly was better today. We spent a few hours at the beach getting our feet wet and making sand castles. Mum noticed a lump under Lilly’s chin, which was a bit of a worry. We are also worried that she has hardly eaten a thing since the chemo started three weeks ago and she is losing so much weight.

December 14

Lilly was better again today, almost acting like a normal kid. She had fun, riding her bike at poppy's house.

December 15

We made a quick visit to a Chinese medicine clinic in Northcote to pickup cough medicine and B12 herbs, then we drove to RCH and went up to the Oncology wards. Lilly was not impressed and she pleaded and pleaded for us to take her home. Lilly was given a bed, then she received hydration for 5 hours. After that, the chemo - Vincristine , Doxorubicin , Cyclophosphamide started coursing through her veins.

December 16

Lilly slept well but woke up miserable with her face all swollen. The decision was made to insert a Naso-gastric tube. Lilly was sedated and we winced as 32cm of plastic tube was fed into Lilly’s nose. It was awful watching her protest and gag. She was so good with the nose tube that we also changed the dressing on her Hickman entry wound. Again, Lilly was a champ so we rewarded her by ripping off the dressing covering the incision in her neck.

Lilly then had an ultrasound done on the lump under her chin which turned out to be just a jaw infection. Lilly’s was still under the influence of the sedative and she played and giggled and ate her hospital food! Even the string beans! Col and Nell had Japanese food and a night off, while Poppy watched over Lilly.

December 17

Lilly slept well - Big wee's and No Vomits – well maybe just a little one. She was awake for a few minutes then she slept until midday. Lilly is weary and watches videos all arvo. Her temperature starts to rise then subsides again. Quite a scare as we don’t her to go through another febrile neutropenic episode again. Nell gives acidophilous / bifidus through Lilly’s naso gastric tube, which makes Lilly gag and cry - Nell feels awful.

There is a chicken pox scare in the hospital so an intramuscular injection into each of Lilly’s thighs is required. Lilly is so scared of needles but was so brave during the double injection. Lilly’s persistent cough is a worry but an X-ray shows that her chest is clear. Lilly protested strongly over having a bath then she was asleep in fresh clothes and on fresh sheets by 6:30.

Mum whispered "you're going to get better" and for the first time Lilly nodded!

Lilly is getting used to her new nose tube and seems a lot happier without people trying to force her to eat and drink all the time. She is such a beautiful girl. She has been so accepting this week. Col sleeps next to Lilly tonight.

December 18

Lilly slept well. Indi arrived back from Queensland and we all went home in the afternoon. Lilly slept in mums room with her pump trickling baby formula into her tummy overnight via her nose tube.

December 20

We have decided that Phillip Island is too far away from RCH during Lilly’s neutropenic stage, so we pack the car again and go back to the parents’ accommodation near the hospital (Ronald McDonald House). If Lilly's fever rises while her immune system is not working, it could be life threatening. We sleep better being so close to the hospital.

December 21

Lilly has a nice day at Ronald McHouse playing on swings and watching videos. December 22

Lilly wakes at 5am with a 39 C temperature, so Mum walks her across to emergency and Lilly is admitted to an isolation room on 5 West. Lilly is OK about it and she is proud that she can now do her own mouth washes. It is nice not to have to drag her screaming into the hospital this time.

December 23

Lilly slept well all night and she slept for most of the day. Her temperature is still above 39 C but she does not feel so rotten this time. Poppy watched over Lilly tonight.

December 24

Lilly slept well, but awoke very sad, sore and tired, but not angry and violent like last time (Dec 7th). She has developed a nervous twitch which affects her eyes and mouth every 5 minutes or so.

December 25

Merry Christmas Lilly. What a busy day, starting with a chest X-ray. The fire brigade brass band and clowns came through the wards and they were fantastic but Lilly was frightened. Lilly received so many beautiful presents but was sad and didn't want to open any of them. She did, however accept a platelet transfusion - nice Chrissy present for Lilly. Pop slept with Lilly until 3am then Col and Mum took over the watch.

December 26

Lilly had a sad and whingy day as her Neutrophils dropped to 0.01 – as good as zero. Lilly’s immune system has left the building. Her platelet count is still low so she received another transfusion. A new antibiotic was introduced to combat staph / strep found in blood, making a total of 4 antibiotics being administered at the moment. We should expect rapid improvement over next 2 days.

December 27

We decide to vacate Ron's House because the family next door have vomiting kids. If we get gastro, we can’t care for Lilly, and if Lilly gets gastro, she will be sicker than ever. Lilly’s fever is persisting, so it could be a different virus not targeted by the current barrage of antibiotics. Lilly started vomiting overnight, poor little cherub.

December 28

Lilly awoke with a normal temperature but still feels very poorly. Uncle Dan came to visit which cheered Lilly up.

December 29

Not a good day for Lilly. She was very nauseous, doing little vomits and runny poos. Her nose tube got blocked but nurse Lauren managed to clear it with a syringe filled with Coca Cola.

Meanwhile, at Phillip Island, it was Lou and Prue’s big shave day. So many people gathered around in the main street as their beautiful long hair was clipped then their heads were shaved. They raised heaps of money for Lilly and so many people heard about Kahlilla Donahoo. It was so touching for these two ladies to make such a sacrifice for Lilly and we can't thank them enough. We attracted much attention in the Cowes main street. The Bald Club turned up with cordless hair clippers, several people sat down for a shave which was very touching also. Lilly's Nanny, Jude got a close clip, Colin's Dad, Terry lost his beard of 25 years and Colin lost his enormous eyebrows. It was such a shame that Lilly and her Mum could not have been there. A big thankyou goes out to all the people on Phillip Island and the passing tourists for their incredible support.

December 30

Lilly is brightening up slowly but still vomiting a bit. She hardly recognised Colin without his eyebrows.

December 31

Lilly's neutropenia has ended and she was permitted to leave her isolation room. We went for a short walk, carrying Lilly and Lilly brightened a little. No nausea at all today.

Happy New Year Baby Girl