Our beautiful lil'
LILLY'S DIARY


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Prior to November 14

Lilly has had a "sick tummy" fever and vomiting for about 5 weeks now. Two doctors have had a look at her and both concluded that it is just a virus going around and some antibiotics should clear it up soon.

November 15

Lilly's fever and vomiting has stopped but her tummy is still sore. Lilly is a beautiful gentle girl but she is not a whinger. One time she fell in the shower and hit her coccyx on door frame on the floor. Lilly screamed so loudly and we laid her on her tummy and stroked her hair to soothe her. Lilly’s entire bottom turned black and blue, but within 5 minutes she got up and said "It still hurts but I am not sad anymore" and she got up and kept playing.

November 16

Mum took Lilly to Dr Jeff Lindenmayer in Selby. He took her persistent tummy complaint very seriously and spent 30 minutes checking her thoroughly. He was concerned so he took some blood much to Lilly's horror.

Later that day, the blood test showed a low haemoglobin count. We were told that this was very serious given that Lilly's diet is good - Mum cooks yummy food and Lilly scoffs it all up... Leukaemia was suspected initially but we would have to wait for the haematologist’s report the following day.

We are devastated... Leukaemia can be fatal.

We are so grateful to Dr Jeff for caring for Lilly and persisting with her until he found the problem.

November 17

The haematologist's report stated that it was not Leukaemia and we breathed a huge sigh of relief. Then we were told that there is still something seriously wrong with Lilly's body, so Mum and Nanny took Lilly to the emergency dept at the Royal Children's Hospital (RCH) in Melbourne.

After an agonising wait at the RCH, a second blood test confirmed the first that it was not Leukaemia. An ultrasound however, detected a tumour close to Lilly's left kidney and our world fell away in an instant. Daddy Col rode his old BMW a bit too fast from Phillip Island to RCH when he heard the news.

Lilly was given her first cannula in right wrist after a distressing sedation with laughing gas where she refused to have the mask held against her face and she screamed and kicked while we forced her. We had to restrain her arms and legs and Lilly looked up and pleaded for us not to do it - totally heartbreaking. She drifted away and the line was inserted into her vein. When it was over Lilly refused to let go of the mask, desperately trying to suck every last molecule of gas. We have created an addict!

Lilly is admitted with a bandage around the cannula on her wrist and a short hose and tap poking out. Then Lilly observed that Harry Potter was in hospital with a similar bandage so it became her "Harry Potter Tap" and she was well pleased. She had a blood transfusion overnight to elevate her haemoglobin. Mum and Col sleep by her side on creaky single sofa beds while Lilly's fever tops 40.

What is this sweet little girl about to face?

November 18

Lilly is put on a drip to hydrate and nourish her, then she has to fast for her first procedure - a bone marrow aspirate and a CT scan. The bone marrow sample is analysed for cancer cells and the very detailed CT scan will depict the size and exact location of the tumour and where it is attached. The CT scan will also identify any other tumours.

Lilly gives a blood sample from a finger prick - 1mL scraped from her finger tip into a small test tube. It was utterly traumatic, especially when the first prick stopped bleeding and she had to be pricked again. We take Lilly to radiology and she gets a general anaesthetic injected into her cannula and collapses in Mum's arms within seconds.

Lilly came out of surgery with a drill hole in either hip where they sampled the bone marrow. Coloured band aids over each puncture wound more than compensated for the pain. Coming out of the general anaesthetic was truly awful. Lilly was so upset and disorientated, throwing herself against her steel sided bed to get away from us. She even threw her brown blankie and dummy (da) onto the floor. Lilly was aggressive and vicious, yelling at us and screaming at us to leave the room.

By the afternoon Lilly had recovered and was racing around the ward on her IV trolley very fast. She made friends with a lovely girl named Madison (Maddy is 7 and has CF) Mum sleeps in the creaky bed and Col goes to his Mum's for a proper sleep.

November 19

Lilly gives another blood sample via a finger prick and is not impressed. Collie holding her arms still as Lilly looks up with her beautiful eyes imploring for you to take her home. Maddy wants to show Lilly the Starlight Room but has to wait for her own cannula to be re inserted. She is upset and Lilly goes over and hugs her - no words are spoken. The kid is an angel. Lilly is stable and allowed to go home in the afternoon after being pushed around on her IV trolley and a quick visit to the starlight room.

Before we go, we meet Dr Marty and he tells us the story so far, confirming that there are cancer cells in Lilly's bone marrow. The type of cancer is neuroblastoma. Dr Marty tells us frankly that this type of cancer is aggressive and treatment has had mixed success and currently has a 20% survival rate. Our already crushed world falls away a bit further.

Lilly has to go back to RCH next week for more tests and biopsy surgery, so we headed back home to Phillip Island for sun, sand and fresh air in our new car - ICE BLOCK (Don't look at us, Lilly chose the name)

November 20

We spend a gorgeous day together especially at Red Rocks beach. Lilly enjoyed herself standing knee deep in the beautiful water and blissing away. Lilly does not mention her sore tum nor does she have a fever. The biopsy surgery is postponed and we get an extra day at home... nice.

November 21

Another perfect day together - no tummy pain and no fever.

November 22

Up at 5am for a 9am appointment in the RCH nuclear dept. Lilly gets a butterfly IV with no anaesthetic OUCH! and a yucky shot of a radioactive isotope that will establish her kidney function before she starts chemotherapy. She has a blood test after 2 hours and another 2 hours later to see if the kidneys have filtered out the isotope dope. At 2pm, Lilly gets another yucky shot of a radioactive isotope (MIBG) that is absorbed by neuroblastoma. After 24 hours, the radiation will have gathered at any neuroblastoma cells. If the doctors can prove that the tumour is neuroblastoma also, they won’t have to cut our Lilly open to take a sample of the tumour.

She has to drink a few drops of iodine to stop the isotope being absorbed by her thyroid – yuk. We all stay the night at Terry and Fran's and have a few visitors including Helen and Craig who give Lilly a little reiki healing. Lilly spews all over Col at 9pm and again at 2am Lilly has a rotten night - sore tum and a slight fever.

We tell Lilly that she has a black balloon in her tummy and that we are all going to help to make it go away. The balloon is yucky and it is making Lilly feel sick. Lilly replies that the balloon is not yucky, it is just sad.

Many natural healers believe that the cancer should not be hated, because hatred and fear are destructive forces that can hinder the healing processes. How can a 2 year old be so wise?

November 23

Up early for a 2am breakfast because Lilly has to fast before her MIBG scan. We have to attend an audiology exam at 9am which requires a long drive in peak hour but Lilly is very tired and still a bit sick so we postpone and put Lilly back to bed. We cruise in calmly at midday for the MIBG scan with a very hungry Lilly – empty stomach after last night's vomits Lilly is sedated and she drifts off to sleep while watching Monsters Inc.

The scan takes about 45 minutes and she sleeps blissfully through it all. She then keeps sleeping in the recovery room for 2 hours. Lilly wakes up a bit sad and hungry, so we get her whatever food she wants then we drive back to Terry and Fran's for dinner and bed.

November 24

We have to wake Lilly at 2am for a bottle and some snacks. Colin and Craig wake her at 5.30am for another bottle - she has to fast after 6am for the midday sedation and bone scan. We go to the nuclear dept for another isotope injection. Mum put angel cream on Lilly's arms in the car so the needle doesn't hurt as much, but it is still a piece of steel entering her body and it is yuk.

Lilly implores for us to stop the doctor from hurting her which is absolutely heartbreaking. Lilly then has a scan while conscious - just a quick one but very disconcerting all the same. This will scan the softer bone tissues. She soldiers on and thanks the radiologist and doctor afterwards - such an incredible kid - so very nice.

Lilly is again sedated at midday and goes to sleep for a final scan - a full skeletal scan to determine if the cancer is in her bones. We all head back to Terry and Fran's again for dinner and bed.

November 25

We woke Lilly at 2am for a bottle, then she had to fast once more for today’s operation. We got to the hospital at 7.00am for surgery to insert a double lumen Hickman. Lilly was scheduled for 9.15am however, an emergency delayed Lilly until 11.30am by which time she was starving.

The surgery was successful but Lilly’s emergence from the anaesthetic was horrible - angry, sore, disoriented. The Hickman is an IV inserted in Lilly’s jugular vein by cutting a window in her throat. The tube is then run under her skin from her neck to the right side of her ribcage where the tube comes out from an exit wound, splits into two short pipes and dangles near Lilly’s belly button. Fairly gruesome really, but essential for several months of intra venous fluid delivery.

Lilly has a sore neck and is curious about these two tubes coming out of her body but she soon accepts her two new special Harry Potter pipes.

There was no bed available in the cancer (oncology) ward, so Lilly was given a bed in the orthopaedic section full of noisy kids with broken arm and legs. It was very hard for Lilly to rest and sleep in the middle of the day. She is OK - just tired and sore. Later in the day, Lilly was moved to an isolation room in 3 West, nice and private and quiet and heaps of room for Lilly’s new presents. The start of Lilly’s chemotherapy was postponed and she was given a few litres of IV fluids overnight. The chemo drugs are very poisonous and the liver, kidneys and bladder must be flushed prior to the start of the chemo

The doctors then told us the situation:

· Lilly has a malignant tumour in her adrenal gland on her right side just above her kidneys

·The tumour is comprised neuroblastoma cells and is about the size of a kidney

·The cancer has spread to her bone marrow and bones, making it a Stage IV cancer

·The prognosis is that there has been mixed success treating Stage IV Neuroblastoma, and the survival rate is about 1 in 5

November 26

Up early for a ride on Lilly’s IV Trolley, followed by a big brekky of toast and vita brits. Lilly received her first chemo drug (Vincristine) after lunch with no reaction. The second was a bright red liquid called Doxorubicin and the third was Cyclophosphamide. The vomiting started one hour later. The reflex was so violent that the vomit shot out a few feet and Lilly wet the bed. Lilly was mortified and crying and she kept saying sorry. She has been out of nappies for a few months now and is very proud of her dry bed each morning.

Nanny and Pop and Auntie Jess came to visit which cheered Lilly up. She then slept from about 2.00pm to 7.00am, waking every hour or so to have a wee wee. The chemo is accompanied with 140mm/hr of fluids for dilution so Lilly always needs to wee. Luckily we brought the potty.

November 27

Lilly is OK today, happy, quiet and very hungry but no appetite. We offer her every food possible, but Lilly only manages a single grape. We are frustrated over the food situation but we are told that it is quite normal and not to worry – for now. Lilly is given her second and final dose of chemo for this stage and keeps vomiting. She falls asleep at 1.00pm and she is transferred up to the oncology ward. She has 10 wees overnight - all in the potty - such a good girl.

November 28

Lilly is still vomiting every time she takes a sip of water. Her haemoglobin is low, 84, so she will get a blood transfusion. Transfusions are usually given once the level drops below 80 but since Lilly is going home it is best to boost her haemoglobin count. The transfusion takes 4 hours, then Lilly was disconnected from her drips and pump. We are heading for the door when the nurse remembers that she is yet to give Lilly an injection to stimulate white blood cell growth. Lilly is so distressed at the subcutaneous shot into her delicate little tummy Lilly was fed up and hungry on the drive home as we jammed ourselves into Ice Block which was packed with 7 days of accumulated gear Great to be home – Lilly drank some rice milk before bed but it came up a few minutes later. Poor kid.

November 29

Lilly’s dressing on her Hickman line was itchy and her overnight scratching caused her exit wound to bleed. Mum took her to the hospital on Phillip Island for change of dressing, which was Ok but it looked a bit dodgy. Lilly is hungry but refuses to eat. She does, however have a good thirst for water and apple juice. She has a drop of milk at 6.00pm, then - booooouy - 300ml of vomit.

Lilly is doing good wee-wees all day and night but no poo as yet, so we gave her a dose of dufolac. Lilly’s temperature is high at 7.00pm, after a vomit, so we call RCH and they advise us to go to Wonthaggi Hospital where a doctor checks her over and tests her blood. Her temperature drops and we take Lilly home. We have to be cautious because about a week after chemo, Lilly will lose her immune system and a high temperature indicates an infection which can be fatal if left untreated.

November 30

Today was a good day for Lilly. Her appetite has returned and she spent the day running and playing, having a great time with her sister Indi at Poppy's house. We are a bit concerned about her Hickman dressing, which is filling up like a bag full of blood, and a rash is developing around it.