Friday 28 May 2010 - Treatment Day 148

I told mum yesterday that I wanted to go to school again today but I was a bit tired and I woke up quite late so I didn't feel like going after all.

Dad picked me up in the evening.

QOTD: "If mum sells me to another parent, they might not know I'm sick. Then they won't take me to hospital."

Thursday 27 May 2010 - Treatment Day 147

Mum went to Singapore today. I've been to Singapore a few times too. That's me in November 2007 when I was 3 years old. I was at the rooftop of Singapore's Vivocity shopping mall. We took the cable car from there to Sentosa island which you can see in the background. Now there is a new Universal Studios theme park there which just opened in March this year. I can't wait to get better, then I can go.

I felt like going to school again, so I went to school with Omar and Emma.

Tomorrow is a public holiday. Dad isn't working tomorrow, so he came to grandma's to pick me up after work. But I didn't want to go home because I wanted to play with Omar.

QOTD: "Charlie and The Chocolate Factory is a really great story."

Wednesday 26 May 2010 - Treatment Day 146

I went to school today. Tok Mummy gave me some new Oxford Reading Tree books - Kipper and The Giant, In The Garden (Stage 6) and Red Planet (Stage 7). I chose them myself.

Later, I played my favourite game Cooking Mama on my DS Lite today. You can cook all sorts of yummy Japanese dishes in it.

I am sleeping over at grandma's house tonight. Mum is going to Singapore tomorrow. Mum thought it would be nice for me to go on holiday too as I am on a break at the moment before I start my 6-month 'Protocol III' chemo regimen on 2 June. Dr Lin said it was fine if mum wanted to take me to Singapore. But dad said it was too risky because Singapore is too crowded. And he can't come because he has to work.

Aunty Vanessa, Sarah's mum, said that we should go on holiday if we can. She said one of the most important lessons she learnt after Sarah got leukaemia is to make the most of each day and to enjoy every moment of it.

Mum is worried I won't be given my meds properly if she isn't around to supervise. She cut up and prepared all the tablets that I need to take for the next 7 days. But she'll be back on Saturday.

Under Protocol III, I will start on a new set of drugs, as well as Vincristine which I have had before.

QOTD: "I love mum so much, I don't want her to die or burn. But dad always lies, he will be on fire."

Tuesday 25 May 2010 - Treatment Day 145

Mum worked on her computer again today while I played.

I got bored again so mum called for the home tutor to come in the afternoon to teach me some Bahasa and Maths.

Later in the evening, aunty Lih Yi (mum's friend) popped by with some yummy cakes for me from Etoile, and a tube of Ezerra cream from aunty Pauline for my rashes. It's an anti-eczema cream and does not contain parabens, which could cause cancer.

I had to start taking B Complex and Neurobion (which is also from the B Complex family) today because I will be having the Vincristine chemo drug next week. Vincristine caused some nerve damage in my legs the last time I took it. I couldn't walk and I had to crawl up the stairs at the time. My neurologist Dr Sofiah said taking B Complex and Neurobion will help to prevent it this time.

QOTD: "You're the greatest treasure of all, mummy."

Monday 24 May 2010 - Treatment Day 144

I didn't do much today, I just played at home while mum worked on a story about something called subsidies.

My cousin Omar came over after school. We ate some organic gingerbread cookies and played on our PSPs.

I took some more 6-MP to make up for the ones I'd thrown up while I was in hospital last week.

QOTD: "Why is Beyonce singing about a beautiful nightmare? Nightmares are bad dreams."

Sunday 23 May 2010 - Treatment Day 143

I was tired again today, so I just mooched around at home. I did a bit of arts and craft with my new fairy diary.

Mum gave me some Bactrim tablets and 6-MP chemo tablets to make up for the ones I had missed or thrown up while in hospital.

QOTD: "Justin Bieber is a boy? Then why does he sound like a girl?"

Saturday 22 May 2010 - Treatment Day 142

I finally got discharged today. My MTX levels were still on the high side at 0.53 as of 8am, so Dr Lin gave me 2 folinic acid tablets to take at home. I had to take them at 6pm and midnight.

Aunty Debbie (mum's friend) came to visit me in hospital before I went home. She bought me some new books from my favourite series Dr Seuss, some orange juice and other groceries. I really love Dr Seuss books and I read my new ones straightaway. They were A Whale of a Tale!, Inside Your Outside! and Oh the Things You Can Do That Are Good For You! Mum took a video of me reading one (you can see it at the bottom of this post) but it's a bit short and it's lopsided.

I was still vomiting a lot today though and I nearly vomited all over poor aunty Debbie.

Tok and grandma visited me too, grandma made me some of my favourite rice and fish. I vomited after lunch though, and after I'd taken my 6MP chemo tablet, so mum wasn't sure if I'd absorbed it by then.

Both mum and dad were working today, so tok and grandma helped us pack.

I was so tired by the time I got home, I fell asleep, and mum had to wake me up to take the folinic acid. I really didn't want to but she said I had to.

QOTD: "Are they stopping the water (in the drip)? I can't feel anything (going in my body)."

Weight: 17kg (-2kg)

Friday 21 May 2010 - Treatment Day 141

I couldn't go home today because my MTX levels were very high. I normally get to go home on Friday after starting the MTX on Wednesday. My MTX levels were 2.28 at 11am and 1.54 at 5pm.

Dr Lin said he didn't know why I wasn't excreting the MTX as well as previously, but he says it has happened to other patients before. They excrete it well the first few times and then they suddenly don't during the last cycle. But he said it's very rare. So I have to stay another night.

He gave me higher doses of folinic acid rescue compared to the last cycle. Usually he just gives me two doses of 15mg each. This time he gave me two of those, followed by two more doses of 30mg.

Mum's friend, aunty Nadya, sent us some food delivery from roomservicedeliveries.com. She runs a farm in Pahang so she couldn't come and visit me in hospital. She sent me a Starbucks frappucino and juice, an oyster omelette from Penang Village and some sushi from Sheraton Hotel. But chemo patients can't eat raw food due to the risk of bacterial infections, so mum ate the sushi. I can eat cooked or boiled sushi though.

My friends Meddina and Katrina came to visit and play with me. They used to go to my school, but they've both moved to different schools now. Katrina and her mum brought loads of toys for me: a Mermaid doll and seahorse, a Playdoh BBQ set and a very pretty fairy scrapbook kit. I was really thrilled with all the nice presents.

Later on, aunty Ivy (mum's friend) came over to visit and play with me too. She made lots of nice food and cakes with me using the playdoh. I really enjoyed doing that. She also brought meatballs and fries for us from Ikea. She helped to buy a laptop cushion from Ikea for mum to use in hospital. Mum always finds it difficult to work because she doesn't have a table plus she's worried about laptop radiation, cancer and tumours. The cushion was alright but mum says she might need to buy a proper foldable table to bring to hospital next time.

I was still vomiting today. I vomited right after I ate my evening dose of the prophylaxis Bactrim again. It's such a chore to take the Bactrim because the tablet is quite big and it doesn't taste nice. It helps prevent me from getting a nasty type of pneumonia that immunosuppressed people can get, but it is also used for a lot of other illnesses and infections.

I also vomited all over myself 2 hours after lunch. Mum had run out of clothes for me because I was vomiting so much these past few days. Luckily aunty Anita, Meddina's mum, had brought spare clothes for her so she gave me a Disney Princess dress to wear.

QOTD: "Why is it morning already? I'm still sleepy."

Blood count:

Haemoglobin 10.5 (Normal 13.0-18.0)

Platelets 218 (150-400)

Total White Blood Count or WBC 4.6 (4.0-11.0)

Neutrophils 84 (40-74)

Thursday 20 May 2010 - Treatment Day 140

Dad's friends from his office dropped by to say hello and they gave me a cute teddy bear and a box of chocolates.

I was still vomiting so Dr Lin told the nurses to give me some more Kytril and another anti-vomiting medicine called Maxolon. I was still vomiting in the morning and in the afternoon though. Mum was worried again because I had to take two doses today of the prophylaxis Bactrim to prevent me from getting pneumonia as well as the 6-MP chemo tablet. She was worried that they wouldn't stay inside my tummy long enough to work before I vomited them out.

QOTD: "Why isn't anyone else sick? Why am I the only one who's sick?"

Wednesday 19 May 2010 - Treatment Day 139

I went to hospital again today and started my last 24-hour high-dose MTX cycle. It's the yellow liquid in the tube in the photo. All that is going inside me. Dr Lin also gave me my spine injection. They both kill the cancer cells that are hiding in the brain and spine.

I usually tolerate the MTX quite well but I didn't do too well this time and kept vomiting the whole day, even though Dr Lin had given me the anti-nausea medicine Kytril. I'm still taking my 6-MP chemo tablets every day, but I was vomiting the whole day so mum was worried that I was vomiting out my chemo tablet.

Aunty Francis (dad's friend) came to visit me and gave me lots of stickers and a sticker book. I like stickers.

QOTD: "You can tell the nurse that I just did a poopoo so she can write it down. Whenever I poo or wee or eat or drink, they write it down."

Tuesday 18 May 2010 - Treatment Day 138

I was bored today so I asked mum if I could have some friends over to play. Aunty Li Lian (mum's friend) came over and brought her twins, Zhen Li and Zhen Yi. She also bought some groceries for mum: a bag of rice, cream and mushrooms. I had some strawberries and cream for tea.

She also brought ingredients to make a trifle (sponge roll, jelly crystals, custard powder) and we made it together. I had a lot of fun making it.

QOTD: "I had a nightmare. I was a spy and a bad guy chased me and injected me with poison."

Monday 17 May 2010 - Treatment Day 137

I didn't do much today. Mum was very busy working on several stories about the media, whatever that is, and sand and stuff. So I just did my own thing.

QOTD: "I'm pretending I'm Medusa. When you look into my eyes, you become stone."

Sunday 16 May 2010 - Treatment Day 136

Mum and I went to Bangsar Village to meet aunty Li Lian, aunty Elisia and baby Hallie. We had mum's favourites at Bisou: apricot ripple cake, a mini pavlova and a lemon-frosted vanilla cupcake. Mum forgot to take photos so this photo of Bisou's mini pavlova is taken off her friend uncle Sean's blog: www.eatdrinkkl.blogspot.com.

We were supposed to go to the optician's in Bangsar to tighten my frames because the screws are very loose but mum forgot in the end. So they're still loose.

QOTD: "Why is the shop called Zara? Don't they know it's my name?"

Saturday 15 May 2010 - Treatment Day 135

Mum worked today. I went for my violin lesson, and had toast and tea at Coffee Bean next door after that. It's my favourite place for toast and tea.

At night, mum took grandma, aunty Nora and aunty Lina to the spa for a belated Mother's Day treat.

QOTD: "Mummy, how come you didn't give your mum anything for mother's day? You can give her soap or a kiss or give her what she wants."

Friday 14 May 2010 - Treatment Day 134

Mum went out for dinner with some friends. Aunty Ivy had bought me a lot of dresses, pyjamas and hats from Vietnam. They were really pretty.

QOTD: "When I grow up, what will my husband look like?"

Thursday 13 May 2010 - Treatment Day 133

Mum and I had lunch with her friend aunty Elisia with baby Hallie. They live in Bangkok but they were here on holiday. We had dim sum and pasta at Eest. Aunty Elisia gave me a Roald Dahl cookbook and some yummy organic carrot-scented Beatrix Potter shower gel.

After that, I went for my violin lesson with Ms Antonella. I was hungry later, so mum and I went to eat yong tau foo. I happily ate soup for the first time in my life. Mum was really surprised and pleased. I usually hate soups and sauces and I refuse to eat them. I usually like all of my food plain - from rice to pasta to noodles. But I quite liked the soup I tried today. Mum said she'd make better and healthier soups for me at home.

After that I went to grandma's house. Mum and dad went out to see the Broadway theatre show West Side Story.

QOTD: "Why did aunty Elisia give me another book? She's already given me two before. Is it because she's very generous?"

Wednesday 12 May 2010 - Treatment Day 132

I was bored today so mum asked the tutor to come again. Omar also came to play. He also sat with me for a bit during the lesson but he got restless.

QOTD: "We won't be alive for real in heaven. I want to be alive for real."

Tuesday 11 May 2010 - Treatment Day 131

Mum had to work again so I dug out some more Maths books for me to do.

Mum didn't know what to do with me so she called a home tutor to come and teach me Maths and Bahasa so I wasn't that bored. I had wanted Omar to come and learn with me, but his mum was busy and couldn't send him to the house.

I had two big pieces of fish and rice for lunch today.

QOTD: "If I get the flu again, mum will have to do all the work. Pour me the medicine, give me the medicine..."

Monday 10 May 2010 - Treatment Day 130

I didn't do much today, so I was very bored. I dug out some maths workbooks which mum had bought for me to do in hospital last week but I hadn't felt like doing them then. Chemo makes me very tired and sleepy sometimes.

I couldn't do some of the harder maths questions so I got very frustrated and upset. Mum was trying to work but she couldn't concentrate with me screaming the whole day so she called for a home tutor to come tomorrow and teach me. I can't go to school much because I am immuno-suppressed from the chemo and there is the risk of infection from other kids who might have runny noses or chickenpox, plus I sometimes have chemo every day so I have to miss school a lot.

I ate 3 pieces of fish and rice for lunch today. And toast with organic peanut butter and chocolate rice on top. Later I had Japanese for dinner with mum and dad. I'd waited the whole day for dad to come home and play on the wii with me, but when he came home he was all grumpy and cranky and wasn't in the mood to play.

Mum said she'd run out of fish so she went to the supermarket to buy lots of fish and my favourite organic bow-tie or duck feet pasta. They're actually called Farfalle but they look like duck feet to me.

Dad bought me some badminton racquets so we played at the park down our street for a bit. That was fun.

QOTD: "I like my dream. I dreamt I had a boyfriend."

Sunday 9 May 2010 - Treatment Day 129

I wanted to go on holiday before my next round of chemo on 19 May but dad said he had to work this week because his colleague has cancer. So he took me on a day trip to Putrajaya instead.

It was Mother's Day so I made mum a card. She said it was beautiful.

QOTD: "I don't want you to get old mum, because then you'll die."

Saturday 8 May 2010 - Treatment Day 128

I went for violin class today. Mum worked. Then I stayed over at grandma's (mum's mum) because I missed her.

QOTD: "I wish I can go back in time and change my sickness so I won't be sick anymore."

Friday 7 May 2010 - Treatment Day 128

My cousins Omar and Emma (mum's sister's kids) came to play with me today.

Then I went home after 8pm. My MTX levels were really good, at 0.17. They have to be below 0.4 before Dr Lin lets you go home.

I took out the plaster and gauze around my needle as usual. I never let the nurses do it. That's the needle that they put into my chemoport.

Then I was hungry on the way back so we had dinner at Sushi King.

QOTD: "If I get a cat or dog when I'm better, I want to name it Percy or Sizzles."

Today's bill: RM5,888.10

Thursday 6 May 2010 - Treatment Day 127

Dr Lin asked me how I was today. Mum told him I was fine, just that I'd vomited last night but it could've been due to gastric because I hadn't eaten anything the whole day. He told her I'd complained a lot when he put me to sleep yesterday for the MTX injection in my spine (IT).

Mum also told him that she'd given me two folinic acid after the 2nd round of high-dose mtx because I had some rashes but they had dried up now. He said the rashes could have been due to something else, and that I'd flushed the mtx out of my body very well, so theoretically I shouldn't be having any side effects like ulcers or rashes. He told mum to try and not to give me any more folinic acid.

Aunty Francis (dad's friend) came over to visit and did some arts and craft with me. We made a sparkly pink tiara. She also got me some stickers which I decorated my nails and fingers with. She also brought some pizza and spicy chicken wings.

Dad bought mum some perfume for Mother's Day.

QOTD: "I want to go to the future so I can see my kids."

Wednesday 5 May 2010 - Treatment Day 126

I went for my 3rd high-dose Methotrexate (MTX) with mum, dad and jidda (dad's mum). I have to do 4 rounds altogether in 2 months.

High-dose Methotrexate is a long drip (Dr Lin also gives me MTX in the form of a spinal injection), so what the nurses do is get me started on the drip in the paediatric chemo daycare first, while I wait for a hospital room. It takes hours for a room to be ready. I have to be warded in hospital for a few days so that they can make sure I am ok and don't get ill from the high dose MTX.

I also had to starve from 7am today because I have to have a chemo injection in my spine (IT). Dr Lin puts me to sleep for that so I don't feel the pain as much. But it's still uncomfortable and sore when I wake up. And I hate going to sleep because I get bad dreams sometimes.

It was jidda's first time seeing me do my chemo. Dad went to work, and mum went out for a bit.

I didn't eat the whole day even after I woke up from the IT . Mum had packed me some animal-shaped pasta and my favourite bow-shaped (farfalle) pasta. I call them duck-feet pasta because I think they look like duck feet. They also look like butterflies sometimes. She'd also packed me loads of snacks like edamame, rice crackers, chocolate and cashew nuts. But I didn't eat any.

I screamed and cried as usual when they tried to insert a needle into my chemoport for the drip. It hurts when they prick my skin. I told the nurses I hated the new butterfly needle.

Mum gave me some organic rosemary and thyme crackers later at night, and a donut. I liked the crackers. I must've been really hungry because I gobbled everything up a bit too quickly. I got sick after all that, and the vomit dripped off the bed and onto the floor.

Mum couldn't find my new Cinderella crocs shoes after that. She asked me where they were but I said I didn't know. The nurses found it in paeds daycare the next day.

Blood count:

Haemoglobin 12.5 (Normal 13.0-18.0)

Platelets 354 (150-400)

Total white blood count 2.0 (4.0-11.0)

Neutrophils 23 (40-74)

Tuesday 4 May 2010 - Treatment Day 125

I went to Lake Club with aunty Lina and Omar and Emma. Mum worked today, she did a story about some baby hatch place opening soon.

The kids' pools are cleaned every Tuesday and Thursday mornings so mum said it was ok for me to swim today. I like the pool slide at Lake Club, it's huge. Grandma's pool doesn't have a real slide, just a small one.

We swam, went to the library (I love the library!), and ate a banana split and lots of roti canai and ice cream.

Later mum took off the bandage that Dr Lin had put on my back after the injection in my spine. I don't like having it taken off and will scream and scream and scream if anyone tries to. So usually it stays there for days and days or weeks and weeks until the next spine injection and all the nurses will ask why I didn't have it taken off yet.

But mum has discovered a rather sneaky way to take it off. Today while I was in the shower, when she lifted my top up, and my head and hands were still entangled in the top, she quickly pulled off the bandage. It was a bit easier to take off because it was wet, but it still hurt a lot and I wasn't pleased.

QOTD: "It's so wrong but it's so right? Why is it wrong if it's right?? She kissed a girl?? Eww! Why did she kiss a girl??"

Monday 3 May 2010 - Treatment Day 124

Mum worked today. She did a story about a blogger who revealed some secrets on his blog.

I spent the day at grandma's.

I wanted to go to Lake Club to swim but aunty Lina told me the pool was closed.

QOTD: "I love mummy the way she is."

Sunday 2 May 2010 - Treatment Day 123

Jidda (dad's mum) came to visit me at home today. She asked dad about my chemo, what it entailed, how long it was for and whether it had finished. She asked whether mum worked, what I do everyday and whether I go out.

Later grandma (mum's mum) came over with my favourite rice and fish, with aunty Lina and Omar and Emma. We played the whole day.

Then mum and dad took me and Omar for a Chinese dinner at Lake Club. I wanted to go swimming at Lake Club today but mum said it was raining so I couldn't go. I was a bit disappointed.

QOTD: "I can't wait to be 7 because then I'll be better."

Saturday 1 May 2010 - Treatment Day 122

Mum worked today and did a story on oil in the sea.

I played at home the whole day but got bored in the afternoon so dad took me for an early Japanese dinner.

QOTD: "If I have little hair, will everybody still know I'm still me, I'm still Zara?"

Friday 30 April 2010 - Treatment Day 121

I helped mum bake some banana bread today.

I don't like bananas and I don't like cake much but this time I ate some banana bread because I helped make it.

QOTD: "I'm not grown up yet to die."

Thursday 29 April 2010 - Treatment Day 120

Mum worked today. I had a violin class with Ms Antonella, to catch up on the stuff that I'd missed for the past few months.

I had yong tau foo for tea. I ate soup for the first time in my life. I used to hate soup and I always refused to try it, even in school when Tok Mummy serves it for lunch.

So mum was happy about that. A lot of the chemo mums were telling mum to give me soup. They give their kids soup because you can put a lot of healthy stuff in it and it's easy to eat when you don't have much of an appetite due to nausea or due to the chemo.

QOTD: "How does God build things without touching?"

Wednesday 28 April 2010 - Treatment Day 119

Mum didn't work today. She took me to see my eye doctor in Sunway Medical Centre, Dr Chin Pik Kee for my twice-yearly check-up. I had rice and fish for lunch while waiting. Mum had a coffee at Starbucks.

Dr Chin was shocked to see me looking so different. She asked mum what had happened to me since my last check up in October. Mum told her I had leukaemia.

After that I told mum I wanted to do some arts and crafts so we went to Get Crafty at the One Utama shopping mall. I decided to make a Princess sign. I had a lot of fun.

After that we had tea at Sushi Zanmai. I had rice and chawanmushi. I wanted a crabstick roll but they didn't have any today. After that we spent some time at the MPH bookshop and mum bought me some new books.

Then we went clothes-shopping. It was a really fun day.

QOTD: "I don't want mummy to die. Grandma says everyone must die."

Tuesday 27 April 2010 - Treatment Day 118

I'm slowly getting used to drinking my new milk now.

My nutritionist at SDMC recommended Pediasure, as it contains more protein than any other brand, and it's good for picky eaters and chemo patients whose appetites are poor.

I miss my old milk, but mum said the factory burned down, plus it'll make me sick.

Monday 26 April 2010 - Treatment Day 117

Aunty Nadya came to take Jasmine (yep, that's her pic) and her new kittens. Mum had found her a new home when I first got sick but she'd somehow found her way back to our house, and by that time, she was having kittens already.

Aunty Nadya lives in Pahang, which is very far way, so hopefully she won't try to find her way back.

I was a bit upset and cried. I told mum I wanted to keep one kitten.

But mum said I can't have any pets because chemo patients can't be exposed to animal poo.

So I said I wanted a kitten at grandma's house, but mum said grandma already has too many cats.

QOTD: "If I get a cat or dog when I'm better, I want to name it Percy or Sizzles."

Sunday 25 April 2010 - Treatment Day 116

I went for my favourite Japanese lunch today at my neighbourhood mall. It's not very crowded so mum and dad let me go there when I feel like having Japanese.

Later, mum and dad went to see Kelly Clarkson in concert. I got upset and cried because mum said I couldn't go. She said there would be too many people, and the stadium would be filled with germs.

I like Kelly Clarkson. Mum sent Kelly a message on Twitter to come to Malaysia again so that I can see her sing when I get better.

Mum took a video recording of Kelly singing. But it was so short. I asked her why she didn't record the whole concert. She said she wasn't allowed to but she managed to record a quick one when they weren't looking, towards the end of the concert.

Saturday 24 April 2010 - Treatment Day 115

Mum worked today. She works every Saturday now, ever since I got sick, so she can get a day off on a weekday like Wednesday to send me for chemo and take care of me or entertain me or just hold my hand during chemo. But I have chemo 3 to 4 times a week, so most of the time she's busy working in hospital while I have chemo. I wish she didn't have to work.

I went to violin class in the morning. Ms Antonella said I would need extra lessons to catch up on what I'd missed during the past 4 months.

After that, my cousin Aliya came over to play with me.

QOTD: "Why do people like to spell kids and hits with a z. Like Kidz and Astro Hitz. It's wrong. It's supposed to be with an s."