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."

Friday 23 April 2010 - Treatment Day 114

I wanted to go to grandma's house today to play with my cousins Omar and Emma. So we went to grandma's, and mum worked from there.

When we went back home, I showed mum a new game I was playing with my dolls and teddy bears and bunny. I pretended I was Dr Lin and that they were all my patients.

I named my bunny Sarah after my friend Sarah who also has ALL. I put her to sleep by injecting ketamine into her chemoport, and then I did a Bone Marrow biopsy in her hip and an IT injection into her spine. Then I put a bandage on to make it feel all better.


QOTD: "When it's my birthday, I'll make a wish. I'll wish that I was better."

Thursday 22 April 2010 - Treatment Day 113

Mum had to go to the doctor today, she is having a bad cold and headache. So she is taking the day off today.

She's not sure whether she got it from me though, or whether she caught a different strain from when she went out to Hulu Selangor on Saturday. The nurses had told her before that it would be challenging if I caught 2 separate infections at the same time.

It is flu season though, there were a lot of cases in SDMC last week. The head nurse had advised us not to go out much and just stay in our room. The room next to us had a sign on the door saying "Droplets caution" or something like that. Everyone going in and out must wear masks and sanitise their hands. There are lots of H1N1 cases coming out in the papers too, H1N1 is a superbug and could make you very sick.

QOTD: "You don't have to stay away from me, mummy. I have a runny nose and you have a runny nose. We are the same."

Wednesday 21 April 2010 - Treatment Day 112

I visited Tok Mummy and my friends at school today. There was a new boy, his name is Ryan. He had a birthday party in school today to celebrate his 4th birthday.

Mum checked my rash, she hadn't seen me since Monday because I'd wanted to sleep over at grandma's house to play with Omar and Emma. She'd given grandma all my medicines for me to take. But grandma hadn't given me the Clarityn syrup on Tuesday and today. The Clarityn is for my rash. She said I have too many types of medicine to take.

Mum said my rash was still red today and I said it hurt when she pressed very lightly on it with a piece of tissue. So she gave me one more folinic acid tablet to try and clear up the rash. She didn't really want to, because it might kill off the chemo, but she did because I said the rash really hurt. She also gave me the Clarityn.

Later me and daddy finished off the mermaid doll that I'd started making a long time ago.

QOTD: "Why is New York called the Big Apple. Do they have pictures of apples there or something? And why does New York have the Statue of Liberty? Does New York have a Mcdonalds? What shops do they have there?"

Tuesday 20 April 2010 - Treatment Day 111

Uncle Sean passed mum some new dvds for me today. They were The Tooth Fairy, Shorts, The Spy Next Door, Fame and Old Dogs. Thanks uncle Sean!

Monday 19 April 2010 - Treatment Day 110

I showed mum a rash I had on my back, near my chemo injection in the spine (IT). (Yes, I still have my bandage on from Wednesday, I never let mum or anyone take it off, even in my sleep. I'll wake up and start screaming if you try. So mum always has to wait til the next chemo appointment to get the nurses to take it off or til the next BM or IT injection when I'll be put to sleep under ketamine).

Anyway, she didn't like the look of it. I had had another similar rash on my tummy after the 1st high-dose MTX but she had thought it was due to the diapers I wore at night. That one dried up fairly quickly but this one looked a bit nastier. I had a few new rashes on my arms and under my feet too.

She was worried because Dr Lin is going on 2 weeks leave starting tomorrow so she called chemo daycare and told Dr Lin about the rash. He said it could be because of the MTX and said he would write a prescription for Clarityn and folinic acid. So mum and I went to SDMC to collect them after I had scrambled eggs for lunch.

We had a slight problem with paying the bill today though. Normally dad's company pays for everything (we just have to pay an extra RM50 for each night we stay in order to get a single room which the company doesn't pay for. Dad needs the extra space to sleep on the floor and mum says I need the privacy if Dr Lin does my Bone Marrow biopsies or chemo injections in the room or any other invasive and painful procedures. Mum also finds it difficult to work on her laptop and make calls in a single room but impossible to do so in a double-bedded room. She says it's like trying to work in a cupboard that's cramped and has a circus going on in it).

So the company normally sends the hospital a letter called a Guarantee Letter (GL), which tells the hospital that they will pay for everything. But our old GL had expired so mum called dad to ask for a new one. We waited for maybe more than half an hour but they still hadn't sent it.

Mum called dad again, and dad said they were going to send a GL for the medicine today but they wanted a Progress Report from Dr Lin before writing any more GLs for the next time. So mum asked the nurses to get Dr Lin to write one but he had already left.

After that, we went to grandma's because I wanted to sleep over. I had grandma's fish and rice for dinner, as well as two omelettes. I was feeling rather hungry. Then mum gave me my medicine, including one folinic acid tablet and the Clarityn.

Today's bill: RM85.20

QOTD: "It's time to save the earth. Like at the hotel in Port Dickson that day when all the lights were switched off for Earth Day. You have to go green."

Sunday 18 April 2010 - Treatment Day 109

That's me during my 1st month of treatment in January. I hadn't had my chemoport inserted yet so I've got a canula (a tube and needle) in my hand. The nurses had let me keep it and take it home because I was having my chemo done almost every day. It hurt a lot to put in and take out a canula every day so I was glad they let me keep it. It's all bandaged up to protect it from coming out.

In the video, I'm singing one of the songs from a Barbie doll movie called Diamond Castle. Mum had bought me a sing-a-long DVD of all the Barbie movie songs. It came with a book of all the words to go with the songs, so I was reading it as I went along. I was 5.

Saturday 17 April 2010 - Treatment Day 108

Mum had to go out for work today, she woke up very early at 5am and left after that. She mumbled something about having to go to a place far away called Hulu Selangor to see a circus or something.


Dad also had to go into his office to work. But he took me to my violin lesson first. Aunty Esther was back, and she said she was happy to see me, and that she had missed me.


Then after that, dad sent me to grandma's house so he could go to work. I didn't mind anyway, I wanted to sleep over at grandma's house. But dad forgot my chemo tablets and everything, so he had to send them after he finished work.

Friday 16 April 2010 - Treatment Day 107

Today started off well. Meddina, my old friend from school came to visit today, with her mum, aunty Anita. Meddy goes to another school now. They brought a Mcdonald's Happy Meal for my lunch because I hate hospital food, and a toy chocolate fountain which I had wanted. They also brought some Dora sand art, so mum laid out a picnic rug and we did that on the floor. I also let Meddy watch my Alice in Wonderland dvd with me. Dad had bought it for me last week. Mum was worried it would be too scary for me, but I wasn't scared at all. I really like the movie and I watch it over and over again.

Dr Lin came in while we were having the picnic. He asked how I was doing. He always asks me how I am but I never reply. So mum said yesterday that I should answer him next time with a "Fine, thank you." I said I can say fine, but I didn't want to say thank you. So I did just that today. And he was surprised that I actually replied this time.

Anyway Dr Lin said he was waiting for my MTX level results while I have my 2nd dose of folinic acid rescue at 12.40pm. I'd already been given the 1st dose at 6.40am.

It turned out that my MTX level was even better than during the 1st MTX cycle. It was 0.24 at 12.55pm today. It was 0.34 the last cycle. It has to be below 0.4 before Dr Lin lets you go home. Mum said my runny nose was getting a bit worse so he gave me Atarax and Dexchlorpheniramine syrups to take home for the runny nose and cough.

He also asked if we still had some more of the folinic acid tablets he gave us to take home after the 1st high-dose MTX. Mum said she'd forgotten to tell him that she'd given me 2 of the folinic acid the last time after we went home because I had had a white spot like an ulcer on my mouth.

Dr Lin said ok, but he told mum to try and not to give it next time because it wasn't good for the leukaemia. The folinic acid reduces the chemo effect, and the chemo is meant to kill the cancer cells.

Mum was happy we could go home so quickly but I was a bit upset though because that meant the nurses had to take out my needle. That meant that they would have to poke it back in the next time I have chemo. So I cried and cried and cried.

This time I wouldn't let the nurses touch the bandage at my chemoport at all. I took off the whole bandage by myself. It took about over half an hour. I would have taken the needle out by myself too but the nurses said no, because I wasn't wearing gloves, plus I might injure myself. Mum said it's the nurses' job to do that. But I didn't want to let them take it out at all. The nurses said maybe mum had better hold me down but mum said I didn't like that at all.

I told mum that I didn't want this new needle next time I come for chemo again. It's a new design called a butterfly needle. It feels sharper than the old one which looks like a butchers meat-hook. This one looks prettier and has a yellow plastic cover but I hate it.

That's me sloooowwwly taking off my bandage, sticky tape bit by sticky tape bit. It hurts when you take the sticky tape off because it's basically been attached to me for 3 days.

Today's bill: RM6,002.65

QOTD: "I don't want to take the needle out. Because the next time I go to hospital, they will put it back in again. When I come again, I don't want the yellow butterfly needle."

Thursday 15 April 2010 - Treatment Day 106

We managed to get a single room today so we moved to that one. Though Stephanie had gone home last night, the nurses said another patient would come into our room later. Plus mum and dad had spotted a lot of black mould on the ceiling of the bathroom. As I am immunosuppressed, I'm very susceptible to fungal infections, unlike normal healthy people who can fight them off easily. Mum complained to one of the nurses and the head nurse about the mould.

There were two empty single rooms available but the nurse said that one of them had fungus on the bathroom ceiling so mum said we'll take the other one.

Aunty Sarah (mum's friend) called mum today, she wanted to ask about buying mum's airline credits. We had to cancel our holiday to London after I got leukaemia. But in the end aunty Sarah couldn't buy our credits because she'd wanted to book three Premium Flatbeds to Australia but they cost Rm5,000 each using our credits but only RM3,000 each when booked online using a credit card.

I was a bit bored today so mum asked aunty Lina (mum's sister) to bring Omar and Emma over to play with me. Grandma and tok also came. Later aunty Lina and grandma went out to get mum's car washed before we go home. Dr Lin said I might be able to go home tomorrow night if my MTX levels are good. He said I seemed to be in a good mood today and that I was smiling. He asked me if I remembered my screaming match with him yesterday and me saying "Don't touch me!" I didn't reply.

Nurse Lee came over to chat with mum about my treatment. Mum also discovered why she's been having cheesegrater skin on all her fingers. She thought it was eczema or something due to extreme stress. Mum's never had eczema before but she thought that was what it was. It gets very itchy and painful especially at night or when the weather is hot.

But nurse Lee said that mum must use gloves next time she cuts up my chemo tablets, because they are CHEMO tablets and are very TOXIC. Mum said if it can do that to her fingers, what on earth is it doing to my body, because I'm actually swallowing these tablets. She said it was both frightening and gruesome to think about.

Later at night, aunty Veena's friend kak Long sent over a huge package of frozen scallops which aunty Vee had bought in Kota Kinabalu where she lives. Mmmmmmmm.


QOTD: "I wish mum worked in a toy factory. Or a clothes factory. Or was a boss to workers."

Wednesday 14 April 2010 - Treatment Day 105

Today was a really long day. I had to go to hospital for my 2nd high-dose MTX cycle.

I had to fast first from 7am, so mum gave me a bottle of milk then. We had to leave really early too because I needed to do a blood test first at 9am. Dad wasn't working so he went with us.

They put in a new needle this time, it didn't look like the usual butcher's meat-hook. It looked like a smaller needle and had a yellow plastic cover which looked like a butterfly. The nurses said it was called a butterfly needle. I wasn't sure I liked it. Mum had put the numbing Emla cream on my chemoport before we left for hospital so it didn't hurt that much but it still hurt a bit. You can read about numbing creams here: http://www.acor.org/ped-onc/treatment/treatmentsideeffects.html

As usual I wasn't happy at the thought of people poking me, so I cried and screamed and struggled for half an hour before the nurses could put the needle in. I didn't want them to touch me or put the needle in me.

Dr Lin said my blood count was a little high today. He said it could be because of my runny nose and cough. It's how the body reacts. But he said we can proceed with the chemo today.

So he gave me my IT MTX injection in the spine. They had to put me to sleep first, which I wasn't very happy about. I didn't want anyone to touch me at all.

Before that though, I started vomiting, probably due to gastric because I hadn't eaten since 7am. Mum asked the nurses to give me the anti-nausea medicine Kytril. But it was a bit late because the pharmacy needs time to prepare it so they went ahead with the IT first and gave the Kytril to me later. But I vomited anyway because it was a bit late. Later mum read that Kytril's use on children has not been thoroughly researched yet, and it may have some side effects.

After Dr Lin put me to sleep, he got a bit of a surprise because my bandages from the last BM and IT were still on my back. Mum told him it's because I refuse to let anyone take them off even in my sleep. Even though mum says old bandages will have lots and lots of germs on them. So he said now is probably the best time to take them off.

But the good news is that Dr Lin told mum and dad that I'm still in remission. That means that he can't see any cancer cells in my body.

After that, they started me on a hydration drip before the MTX. I had to wait for a room. The nurses said that the hospital was all full and that there were no rooms available. There were lots of sick people, and even one H1N1 case on the 4th floor. Luckily I will be on the 2nd or 5th floors. They said I might need to take a 4-bedded or 2-bedded. Mum and dad didn't look too pleased. The nurses said I could take a VIP room but it would cost RM500. Mum and dad said that was too expensive.

So we had to wait. Mum made some new friends in chemo daycare. There were two boys named Danish in daycare. One was having a relapse for the 2nd time, so this is the 3rd time he is having ALL. The 1st time was when he was 2 years old, the 2nd was when he was 6. Now he is 9 and he has got it again. His mum said Dr Lin was discussing a bone marrow transplant with them, as he has undergone chemo twice.

The other Danish was having a bacterial infection in his tummy. This means that he had a bad tummy ache and needed to go to the toilet all the time. He has ALL too.

And aunty Vanessa was also there, with Sarah, for her Aspa injection in the leg.

Finally we got a bed, it was in a 2-bedded room. Luckily it was with another patient of Dr Lin's, Stephanie the Indonesian baby. She also has ALL. The room was a bit cramped but it was Stephanie's last day doing the MTX so she went home after 7pm. So we got the room to ourselves for the night.

Later mum and I watched Breaking the Magician's Code on AXN. Mum didn't really want to watch it but I wanted to. I asked mum why the magician wanted to reveal his secrets and spoil it for everyone. She said it was so that everyone would know their tricks. I also saw an ad for women's razor blades and asked her if women shaved under their arms and why.

The MTX made me very cold again so I wore a fleece robe that aunty Shalya (dad's sister) had bought for me. She had bought me some clothes but they were all too small except for the robe. She didn't know I was a size 8 now instead of a size 6. But I'm shrinking slightly because I've had no appetite now that I'm not taking steroids anymore. But I will be taking them again during the 3rd chemo protocol. I'm on the 2nd protocol right now, it will be completed by the end of May.

Anyway mum had to turn the airconditioning off because I was just too cold. Luckily we have the room all to ourselves otherwise some other patient or parent might complain that it was too hot. And you can see in the photo that I have socks on. I very rarely like to wear socks. You can ask mum. Ever since I was a baby, she's bought me sackloads of socks but I always pull them off or just refuse to wear them. Unless it's gym day at school. So you can tell that I'm really really really cold.

Blood counts:
Haemoglobin 11.6 (13.0-18.0)
WBC 9.9 (4.0-11.0)
Platelets 177 (150-400)
Neutrophils 64 (40-74)

Weight: 18.6kg (-0.2kg)

QOTD: "Don't touch me!!!!! I don't want to sleeeeeeeeeeeeeeeeeeeeep, I don't want to sleeee.....zzzzzzzzzzzzzzzzzzzzzzz."

Tuesday 13 April 2010 - Treatment Day 104

Mum came back today. I told her I missed her. She said she'd missed me more. She said the hotel she stayed at was quite nice, she said to ask dad if he would take all of us there after my next chemo which starts tomorrow.

I went out for dinner with dad and Aunty Shalya, she bought me a Merliah Barbie doll.

Mum found out today that I have been having a runny nose since Monday after I went out with dad on Sunday. She wasn't happy that nobody had told her. I didn't have a fever though, so I didn't need to be rushed to hospital.

But I am having the 2nd high-dose MTX chemo tomorrow, so mum unpacked her holiday gear and repacked for hospital.

QOTD: "What happens when you're famous? People ask you for photographs and autographs. You get to sing on stage, you get to write songs. You get people to work for you, design the show, make the music. I saw it on TV."

Monday 12 April 2010 - Treatment Day 103

Besides making sure I don't get exposed to germs in the house and the other places I go to, mum also has to make sure the food I eat doesn't have any bacteria in it especially when I have a low white cell count or Neutropenia. I have to follow a Neutropenic Diet.

According to the dietitician at SDMC, I have to avoid these:

1. Takeaway/hawker meals that are precooked and kept warm
2. Food from opened cans or bottles that has been opened for a while
3. Food from damaged cans or bottles
4. All bakery products that are more than 2 days old and not stored in the fridge
5. Products reheated more than once
6. Pre-prepared sandwiches
7. Dried fruit
8. Undercooked/raw products
9. Products more than 1 day old
10. Raw nuts and seeds
11. Uncooked coconut/coconut milk
12. Uncooked vegetables/ any vegetables/fruit with blemishes, bruises/ raw vegetable juices
13. Fresh fruit juices that has been prepared and left aside for a while
14. Fried ikan bilis that is more than 3 days old
15. Dried meat
16. Uncooked, processed and cold cut meats
17. Unpasteurised milk
18. Soft cheeses
19. Cheese topping on pizza, lasagna and bakery products
20. Yoghurt, sour cream, cream products
21. Unboiled water
22. Fruit juice and beverages from stalls and hawkers (sugar cane, young coconut, cendol)
23. Soft serve ice cream, sundaes, commercially made ice cream, cotton candy
24. Mayonnaise, tartar sauce, salad dressing and kaya
25. Raw honey
26. Opened bottle of chilli sauce/ketchup unless cooked together with food
27. Ready made sambal from hawkers
28. Yellow mee/noodles and yee mee

That's quite a lot of stuff. It's sometimes difficult to avoid all of them. But I guess we have to try our best.

Chemo patients with Neutropenia also need to avoid crowded places, people with cough and flu and other infections, cuts, flowers and plants as they may be a source of fungal infections, and should ideally eat a high protein diet.

The dietitician recommended a milk formula called Pediasure for me, she said that it has the highest amount of protein compared to other formulas. So mum bought some for me. But I don't like it as much as my usual milk. But mum said this milk is much better, especially since I don't have much of an appetite at the moment.

I asked why I couldn't drink my usual milk. Mum said the factory had burned down, just like how the Vitagen factory had burned down last year. It couldn't make any purple-flavoured Vitagens for a month.

Sunday 11 April 2010 - Treatment Day 102

Mum went away today. She's coming back on Tuesday. She's gone to stay at a hotel in Cyberjaya in Cyberview. She had planned to go to Bangkok to visit aunty Elisia but she said there were lots of angry people protesting there, plus grandma thinks mum shouldn't go too far in case I have to go to hospital in a rush.

Dad took me out for a Japanese dinner, before sending me to grandma's. He was supposed to be on leave tomorrow to take care of me, but he couldn't get leave so he has to go to work tomorrow. (Note: The above photo was taken a few months ago).

Saturday 10 April 2010 - Treatment Day 101

I went to my violin class for the first time since I got leukaemia. I told mum I missed going to my violin lessons and she said I'm probably well enough to go again. My teacher, Ms Esther, is away so another teacher taught me today, Ms Antonella.

Mum had already told the school that I'd been away doing chemo for 3 months, so the teacher did a lot of basics and revision. I really enjoyed the lesson, and I had forgotten how much I'd liked making music and playing the violin.

I was rather hungry after the lesson though, so I had some roti canai for breakfast.

Friday 9 April 2010 - Treatment Day 100

That's me with my newest cousin, Naim. The photo was taken in the 2nd week of Feb, a few days after I'd had the operation to insert my chemoport. The chemoport is on the right side of my chest, and I was going around everywhere with my neck stiffly to my left because I was afraid of hurting my neck. The chemoport is attached to a big artery in my chest and also a big vein in my neck. Grandma was afraid I'd look like that forever if I didn't re-learn how to move my neck again.

Mum had to try hard to get me to move my head normally. She moved my carseat to the other side of the car so that I would have to move my neck in order to talk to her. She would also move my dvd player to my right so I'd have to turn my neck. She also made me do neck exercises everyday so I would practice turning to the right. After a few weeks, I finally got used to it. But it wasn't easy and it took a lot of effort. But I can now move my neck properly again.

Thursday 8 April 2010 - Treatment Day 99

Here's an article mum found about studies which suggest that chemo patients should not take high amounts of Vitamin C. It seems that the vitamin protects cancer cells from being killed by the chemo drugs. Good thing I don't like supplements then :S

http://www.medicinenet.com/script/main/art.asp?articlekey=93137

Wednesday 7 April 2010 - Treatment Day 98

That's me reading to the class at my school. I haven't been to school in a long time, and I didn't have chemo this week so mum asked Tok Mummy if I could come over for 1 or 2 hours, and if there were any sick kids. Tok Mummy said I can come anytime and that everybody misses me.

It was also Katrina Ava's birthday, and her mum brought in a cake and some party goodies.

One of the teachers, Ms Noor, gave mum a bottle of juice for me. She said it's got lots of antioxidants, which are believed to protect cells from free radicals which are thought to cause cancer.

Later mum went to Ikea and bought lots of new furniture for the house. She also found an organic shop at the Ikano shopping mall called Just Life, and bought me some organic wheatgerm, lollipops, ramen noodles, crisps and lip balm. The shop also stocked organic makeup bedsheets, pillows and clothes. They gave mum a free bottle of organic tomato ketchup.

Tuesday 6 April 2010 - Treatment Day 97

I went to grandma's house today, and played with Omar and Emma.

QOTD: "Why should I ask daddy if I can go to grandma's house? He's not the boss of me. Mum is."

Monday 5 April 2010 - Treatment Day 96

The white spot on my lip is getting better. But mum said it's still there, so she gave me one more folinic acid tablet. You can read more about folinic acid here: http://www.netdoctor.co.uk/medicines/100001383.html

But she said we probably don't need to see Dr Lin, because it's getting better. I was relieved when she said that. I hate going to hospital. I can hardly see the spot myself, but mum says you can see it if you look carefully. It doesn't hurt anyway, and I'm still kind of eating normally, although I don't eat a lot nowadays.

I watched all the Punky Brewster dvds today. I really liked them. I didn't watch them in order though. Mum said I should, because then I'll know how Punky got to be adopted by the old man. I didn't really know what she was talking about at first.

QOTD: "I wish I dream about when I am better. I want to go to Ikea and eat Ikea food when I am better."

Sunday 4 April 2010 - Treatment Day 95

A white spot appeared on the side of my mouth today. Mum thought it might be one of those mouth ulcers that Dr Lin warned us about, that the high-dose intravenous MTX can cause.

She asked if it hurt. I said it hurt a little bit. So she gave me one folinic acid tablet and said we might need to see Dr Lin tomorrow if the white spot is still there.

Aunty Carolina (Aliya's mum) gave us a stainless steel colander today, it's for draining all my noodles and pasta. Mum had told her we'd needed one, as she'd binned all our old plastic ones. There's not many plastic utensils left in our kitchen now, mum is trying to ban them.

QOTD: "I dreamt a very good dream. I had long hair and tok (grandad) touched it and said I was beautiful."

Saturday 3 April 2010 - Treatment Day 94

Mum's friend, aunty Debbie, came to visit today. She brought me the Punky Brewster Season One boxed set which she'd ordered specially from Amazon.com, a get well card, a Little Miss Sunshine doll, and a new floppy hat and stickers from my favourite shop Accessorize. Punky Brewster was a show which was on tv when she was a little girl and she said she liked watching it and that it was a good story.

I was really happy when she came but I got upset when the nurses came to take the needle out for me to go home. I cried and cried and struggled with the nurses for nearly an hour. I didn't let the nurses take the bandage off, I did it all myself, while the nurses told me to do it carefully. when the bandage was off, I let the nurses take the needle out. It was painful, and it stung when they swabbed my port with alcohol so I cried again. Aunty Debbie asked mum if it was like this, me struggling and crying for an hour, every time. Mum said yes. Aunty Debbie told me I was a very brave and strong girl.

Dr Lin gave us folinic acid tablets to take home. He said that if I develop any mouth ulcers, then mum should give me one of those, and then take me in to see him the next day.

Friday April 2 2010 - Treatment Day 93

The nurses took blood from me today to check my Methotrexate (MTX) levels. It was 0.37 umol/L. That's good because it should be less than 0.4. Dr Lin said my body has been excreting the MTX very well so it should go down even further after the folinic acid rescue. So he said I can go home tomorrow after the 3rd dose of intravenous folinic acid.

Mum was pleased but I cried because I didn't want to have the needle taken out of my port. It hurts.

Mum had to go to see her doctor again to check on her urine, so grandma came over to SDMC to babysit. It was also mum's day off, so she decided to go to Bangsar to buy me more clothes and some groceries. She also got me a new DVD, the Lizzie McGuire movie. She was feeling rather sleep-deprived because sleeping in hospital is very uncomfortable and the nurses come in every 2 hours in the night, so she said she needed to sleep the whole day today. But she couldn't sleep at home because there were contractors there fixing the roof and driveway so it would be noisy.

In the end she didn't find anywhere else to sleep. She did a urine test and the doctor said she was still having a UTI so she had to take some more Bactrim until Sunday.

Thursday April 1 2010 - Treatment Day 92

My 24-hour MTX drip ended today. I will be given 3 doses of intravenous Folinic Acid after that, the 1st dose being 48 hours after the MTX, with the 2nd dose 6 hours after, and the 3rd another 6 hours after that.

The folinic acid is to "rescue" my body from the toxicity of the MTX. If the levels of MTX in my body remains high 48 hours after, it could damage my organs and cause ulcers.

They will also do a blood test tomorrow to see if I have flushed out the MTX. If I haven't, then they need to keep me for longer.

Dr Lin said my bone marrow biopsy yesterday showed that I am still considered Standard Risk ALL. He said this was really good news. He had had one patient who was initially standard risk but later became Intermediate Risk. But he added that maybe the first result might have been a mistake.

Because I am standard risk ALL, I only need 2gm of MTX/m2. Intermediate and high risk patients need 5gm/m2. Since I had quite a low dose, I didn't really have any side effects from the MTX, except that it made me feel very very very cold, and I shivered a bit today. Mum had to turn off the airconditioning and Dr Lin said my room was very warm. But Dr Lin said the shivering was ok as long as I didn't have a fever.

Later I had some blood stains on my robe after I went to the toilet. Mum thought maybe it was old blood stains from yesterday's BM and spine injection.

I have to keep my urine everytime I go to the toilet because the nurses have to check that the PH level is normal and that I am flushing out enough amounts of water. I have to pee in a bedpan and mum pours it into a measuring jug because the nurses need to see how much urine I've produced.

My urine is bright yellow, the same colour as the MTX drip. Mum lets me wee in my diapers at night because I am attached to the drip all day and all night long, so it's too much hassle to unplug it and drag it around with me to the toilet and plug it back in. One time when I went to the toilet with the drip, a bottle of saline fell on the floor and broke. The nurses had to change the bottle. So if I wee in my diapers, the nurses just have to weigh my diapers. Mum says I have to go through too much anyway without having to be bothered about going to the toilet everytime I need to wee. She says it's not a bit deal at all. When I'm on the MTX, I need to wee very frequently, about once an hour.

Later on, there was a huge blood stain on my bedsheets. It turns out my BM wound is still actively bleeding. So the nurses changed the bandages for me. I wasn't very happy at all. It hurts when they take the bandages off.

Wednesday 31 March 2010 - Treatment Day 91

I had to go to hospital really early today to start the 1st of 4 intravenous Methotrexate (MTX) chemo cycles. The MTX chemo runs for 24 hours but each cycle lasts between 4-7 days depending on how fast your body can flush out the MTX. The slower you flush it out, the longer you stay in hospital, because high levels of MTX can damage your organs.

I had to fast because I had to have a bone marrow biopsy, and a chemo injection into the spine. They're both painful so Dr Lin puts me to sleep, that's why I need to fast. Dr Lin told me to fast from 4am. You should normally fast about 4 hours before being put to sleep. Mum also put the numbing Emla cream on my chemoport so it wouldn't hurt so much when they put the needle in.

Dr Lin came in quite late today though, at around 1.30pm so I was starving by the time he came. The nurses said next time I should fast from 7am.

Dr Lin normally gives me enough ketamine (sleep drug) for my body weight. But I hate going to sleep and I normally fight the drug. This time I really didn't want to sleep and I tried so hard to keep my eyes open. I woke up before Dr Lin was done. Mum said the whole world could hear me screaming. The nurses had to run and get more ketamine to top up. Mum said next time she'll ask Dr Lin to give me a bit more than the recommended dose for my body weight since I'm so strong and hate to sleep so much.

I was supposed to lie on my back for at least 2 hours after, to stop the wounds from bleeding, but I hate lying down. I got up after less than half an hour. But I couldn't go home yet. I was doing the 24 hour MTX and needed to be warded for a few days.

I also vomited quite a lot after waking up. They forgot to give me the anti-nausea medicine. It's called Kytril. So mum asked the nurses to give me some after I was sick. So I stopped vomiting after that.

My hospital room wasn't ready until much later though so I had to wait in chemo daycare for a while. Dad came at night. He had bought me a new toy, a Portable Sony Playstation. It's just like the one my friend Matthew has. He is 7 years old and is also doing chemo at SDMC, he has AML (Acute Myeloid Leukaemia).

Matthew and I swapped my Nintendo and his Playstation last Thursday at Dr Lin's clinic when I had to do a blood test. We had fun that day. Although we both hate having our blood tests done.

Blood count:

Haemoglobin 14.5 (13.0-18.0)

WBC 4.3 (4.0-11.0)

Platelets 508 (150-4000

Neutrophils 38 (40-74)

Weight: 18.8 kg

Tuesday March 30 2010 - Treatment Day 90

Mum was working today. But she had to go to a clinic at 6am this morning because she was up all night, going to the bathroom. She had blood in her wee and it turns out she had a UTI. The doctor gave her the same antibiotics I have to take, Bactrim.

Monday 29 March 2010 - Treatment Day 89

On top is a photo of me in the 2nd week of my treatment, after I was discharged from SDMC.

The photo on the bottom is of me several weeks after, before I had my chemoport installed. You can see I have a canula (a needle attached to a tube) in my left hand. They also took blood from my right arm. I can't remember why anymore. You can normally take blood, as well as put in drugs, from the canula. As you can see, I wasn't exactly in a happy mood then. I was on the Dexa steroid so I was always grouchy and unhappy. It probably didn't help that they poked me in two different places. My face was all puffed up too from the Dexa.

I've stopped taking Dexa for now, but will be on a higher dosage in the next chemo cycle. I was hungry 24 hours a day while on Dexa. Mum is not terribly excited at the thought of me being on a higher dose of it. She did nothing but cook all day when I was on it. And I was anti-social and in a foul mood all the time and ignored everybody when they tried to talk to me.

Sunday 28 March 2010 - Treatment Day 88

We left Port Dickson today. It's been a lot of fun. I didn't want to leave but dad said I could come back again after the next chemo cycle maybe.

As usual, I asked mum to stop by the Army Museum again on our way back. That place is a lot of fun. I especially like going through the communists' tunnel. It's scary yet exciting. And I like looking at tok's photo in the museum.

Me, Omar and Emma had ice-cream and cheezels in the museum cafe before going back. Omar wanted to go back in my car, we played on my Nintendo on the way back.

QOTD: "When will I be a fashion designer? Before I have children?"