It's The Climb

Wednesday 20 April 2011, Treatment Day 474

2011-04-20T21:59:00.000-07:00

Mum didn't work today. I woke up a bit late and just watched tv in the morning. I had toast and Milo for breakfast, and noodle soup for lunch, with shredded chicken, bok choy and carrots. I don't like chicken or carrots much so I didn't eat those. I didn't eat much of the bok choy either because as I was going to eat it, Bibik said there was a fly and she took it away.

After lunch, I did some work. Mum had bought me some French and Jawi workbooks that came with CDs so I tried those. The French CD worked but the Jawi CD was blank or it wasn't working. So I just tried to read the book but it was a bit hard for me.

After that I felt tired so mum told me to take a nap. But I never ever take naps ever. I was hungry so mum took me to Sushi King. I had a plate of kani mayo, some chawanmushi and some deep-fried squid.

We went to Bangsar Village after that. I bought a new book at MPH, The Revealing Story of Underwear, which is all about the history of underwear.

Then we had dinner with aunty Li Lian and aunty Adeline at Plan B. I had spaghetti carbonara, which I didn't like, and a turkey ham and cheese toasty. That was quite nice. I also had a vanilla shake.

Then we went to the Grocer and I got a Smarties easter egg. It was a big chocolate egg with lots and lots of smarties inside it. We don't celebrate Easter but it looked yummy. I ate some in the car. I also made mum buy some Pilsbury pancake mix, it is the one which Tok Mummy, my kindergarten principal buys, to make pancakes with, for the kids. I like her pancakes.

On our way home, I got hungry again so I got mum to buy me some french fries. It's one of my favourite things to eat but mum doesn't like me eating too many fries. She says potatoes and fried food can cause cancer.

When we got home, I had a bath and listened to some Taylor Swift. I made a drawing of her too. I like Taylor Swift.

QOTD: "Why is there thunder and lightning when it rains. I think it's because the weatherman is angry. God is angry."

Tuesday 19 April 2011 - Treatment Day 473

2011-04-19T23:59:00.000-07:00

Mum worked again today. I didn't do much, and just watched tv and played with my toys and looked at my Charlie and Lola calendar.

I had an apple and some baked fish in turmeric and olive oil for lunch. I was still hungry after that so mum bought me some McDonald's french fries.

I did some Maths after lunch. When I got tired I listened to some Taylor Swift songs on my CD player.

For tea, I had spaghetti and cheddar cheese. We'd run out of parmesan cheese which is my favourite.

Then I had rice and pomfret fish for dinner. Dad made me do some Science work after that.

After mum finished work, we all walked to the park and mum jogged for a bit while I played at the playground. On our way back, me and dad bought some ice lollies. Mum made me take a shower after that because I was so sweaty. I haven't had a shower in a while, because I had a needle in on Monday and the chickenpox injection on Saturday and another needle in last Monday. I don't like to get water in my plasters.

I had to wait for two hours before eating my 6-MP chemo tablets because they have to be taken on an empty stomach. So I played some Gardening Mama on the iPad until midnight.

QOTD: "Who is Queen Elizabeth? Her birthday is April 20."

Monday 18 April 2011 - Treatment Day 472

2011-04-18T23:44:00.000-07:00

I had chemo today. It's the second dose of Vincristine after the first dose last Monday. Mum was working but she had to take me to SDMC. Dad couldn't take leave and grandma had to go to the Indonesian embassy again for her helper kakak Mila's visa.

When we were halfway there, mum remembered she forgot to put Emla cream on my port before leaving the house. When she said that, I cried because then it would hurt when the nurses put the needle in.

When we got to SDMC, mum told Nurse Siti to put some Emla cream on first. It takes about one hour to take effect so Nurse had to wait before inserting the needle and taking my blood.

Mum made some calls for work while I made a monkey puppet from my Charlie & Lola magazine. I also looked through my new cupcake book to choose which cupcakes to make next time. The nurses asked when I was going to make cupcakes for them. After that, I played with my Nintendo. Mum gave me my lunch at noon, she'd packed fried red snapper, steamed broccoli and rice. But I didn't really feel like eating so I didn't finish it.

Dr Lin came in at around 1 o'clock. We got to see him at around 2 o'clock. He asked if I was alright after having had the anti-chickenpox injection and if I had started growing any spots. He told mum that the incubation period was three weeks anyway so if I was going to get chickenpox, it would be after three weeks.

He said he would be going on holiday for the whole month of May. I will see him for my next blood test on June 6 instead of in two weeks time. He said my blood counts were fine and to continue with my 6-MP and MTX chemo tablets as usual. He told mum to bring me straight to SDMC if I have a fever in the meantime. Then he gave me my Vincristine. He asked about the netbook mum was using and asked if it was very different from my iPad. Then he went to see other patients.

There were three other patients in chemo daycare today. Two of them were from the Middle East. One was a girl older than me and one was a little boy named Mohamad. His mum wore a long black outfit that covered her face and everything except her eyes. I asked mum what she was wearing.

Then Nurse Siti took my needle out and gave mum the bill. We finished at around 3pm. After we left, mum realised she forgot to take my blood test results.

I got hungry after that so I got mum to buy some KFC for tea on the way back. At home I asked Bibik to fry some keropok lekor. I had spaghetti and cheese for dinner at 7.30pm. At night, I did some work but after a while my head hurt.

Then I drew a picture of a ballerina.

I had my 3/4 tablet of 6-MP and five Methotrexate (MTX) tablets at 10pm. I was hungry again at 11pm so mum made some peanut butter and chocolate rice on toast.

Mum asked me when I was going to take off the big bandage on my back from the spine injection. She said it's been a week already. So I slowly took it off all by myself. It was the first time I'd ever taken it off all by myself. Mum said I was a really clever girl.

QOTD: "I want to go to Paris and see the Eiffel Tower. Paris is the city of love. It does look romantic."

Sunday 17 April 2011 - Treatment Day 471

2011-04-17T23:13:00.000-07:00

Didn't do much today. Mum was working. Dad played computer games. I watched tv and played some games on the computer and iPad.

Bibik, our helper, had gone out for the day. Mum gave me a sliced apple to eat. Dad made me my lunch of rice and fried pomfret.

I felt like eating meatballs for dinner so dad took me to Ikea. Mum didn't have time to make meatballs with me today. Dad also bought some frozen meatballs, a jar of lingonberry jam and some of the brown sauce, so we don't have to go to Ikea next time I want to eat meatballs.

Saturday 16 April 2011 - Treatment Day 470

2011-04-16T23:09:00.000-07:00

Mum worked today. Aunty Lina called around noon, saying that Omar had suspected chickenpox. He had one spot on his face, and they went to see Dr Jack, a GP at Plaza Damansara. He said it looked like chickenpox.

Mum called Dr Lin and asked him what to do. He said chickenpox was very dangerous for leukaemic patients. This is because their immune systems are low. He said I needed an injection to prevent me from getting chickenpox. He told mum that we must not play around when it comes to chickenpox and that it could seriously affect the lungs. He had to check with the hospital pharmacy if the injection was in stock because there are not many available and it is very expensive at RM1,300.

After a few minutes, he called mum back and said that they had it, so we could come now. Luckily they had it, as it is a weekend, and he wasn't sure what we should do if the hospital didn't have it. He said to mum that "Things always happen on a weekend!" Mum agreed.

He said the effects of the injection would last about two to three months. So if I get exposed to chickenpox again after that, I'll have to have it again. But the injection would help to prevent chickenpox or I would at least get a not so serious form of chickenpox.

Click here for more information on chickenpox and the dangers.

I didn't really understand what it all meant and cried when mum said it was very important that I get this injection today. I wasn't sure if it would hurt or not. Some injections really hurt, like the Aspa chemo injection that must be injected into the leg muscle. And I'd wanted to go to the Curve with dad to enter a lucky draw for meet & greet passes for Justin Bieber. We already have tickets for the concert. But we had to go to SDMC instead.

Dr Lin had gone home by the time we got there but he had told mum to go to the Emergency Room and get the injection done there.

I had my temperature and blood pressure checked by a nice nurse. Dad had to go and buy the injection from the pharmacy. It is called Varicella Zoster Immune Globulin. There are further details on it here from the Centers of Disease Control and Prevention (CDC).

I got hungry after we waited for an hour. I ate a bar of Cadbury's dairy chocolate while waiting and did some Maths and Jawi, the Arabic alphabet, work on the iPad.

Finally the nice nurse called me and got me to lie on a bed and she gave me the injection. She did it really slowly so as not to hurt me too much but I just told her to hurry up because she was doing it too slowly.

After that was done, I got hungry again so dad took me for a late lunch at 3pm at Sushi King. I had salmon teriyaki, udon noodles, two plates of kani mayo (crabstick and mayonnaise sushi), chawanmushi and iced lemon tea.

Mum went out in the evening to get a copy of The Edge weekly for work. It wasn't in any of the newsagents near our house. In the end, she found it at the MPH bookshop at Great Eastern Mall. She hadn't planned on going to a bookshop. She ended up buying lots of books, including a new cupcake book for me that came with a cupcake stand, and lots of workbooks on Maths and Jawi.

I decided to try a McDonald's cheeseburger for dinner. I've never eaten one before. I used to hate beef. But I'm starting to not mind eating beef now. Dad bought me the cheeseburger without any pickles, vegetables or sauce. I can't eat raw vegetables because of the chemo and I don't like pickles or sauce. Then I was still hungry so I had a Nestum donut after that. I'm on steroids again this week so I have been extra-hungry.

QOTD: "So what if I get chickenpox. I don't want the injection. I've never tried it."

Friday 28 May 2010 - Treatment Day 148

2010-06-07T07:46:00.000-07:00

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

2010-06-07T07:44:00.000-07:00

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

2010-06-07T07:37:00.000-07:00

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

2010-06-07T07:35:00.000-07:00

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

2010-06-07T07:33:00.000-07:00

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

2010-06-07T07:32:00.000-07:00

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

2010-06-07T07:27:00.000-07:00

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

2010-06-07T02:13:00.000-07:00

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

2010-06-07T02:12:00.000-07:00

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

2010-06-07T02:09:00.000-07:00

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

2010-06-07T01:45:00.001-07:00

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

2010-06-07T01:45:00.000-07:00

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

2010-06-06T15:16:00.000-07:00

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

2010-06-06T14:14:00.000-07:00

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

2010-06-06T13:10:00.000-07:00

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

2010-06-06T12:59:00.000-07:00

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

2010-06-05T13:59:00.000-07:00

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

2010-06-05T13:56:00.000-07:00

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

2010-06-05T13:50:00.000-07:00

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

2010-06-05T13:48:00.000-07:00

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

2010-06-05T13:41:00.000-07:00

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

2010-06-05T13:40:00.000-07:00

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

2010-06-05T13:36:00.000-07:00

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

2010-06-05T13:32:00.000-07:00

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

2010-06-05T12:00:00.000-07:00

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

2010-06-05T11:09:00.000-07:00

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

2010-06-05T03:00:00.000-07:00

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

2010-06-05T02:50:00.000-07:00

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

2010-06-05T02:20:00.000-07:00

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

2010-06-05T02:00:00.000-07:00

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

2010-06-05T01:55:00.000-07:00

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

2010-06-05T01:50:00.000-07:00

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

2010-06-05T01:42:00.000-07:00

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

2010-06-04T21:31:00.000-07:00

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

2010-06-01T20:12:00.000-07:00

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

2010-04-24T22:43:00.000-07:00

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

2010-04-24T22:28:00.000-07:00

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

2010-04-24T10:54:00.000-07:00

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

2010-04-24T10:15:00.000-07:00

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

2010-04-24T10:07:00.000-07:00

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

2010-04-24T10:00:00.000-07:00

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

2010-04-24T09:40:00.000-07:00

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

2010-04-24T09:39:00.000-07:00

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

2010-04-24T09:12:00.000-07:00

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

2010-04-23T09:27:00.000-07:00

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

2010-04-23T09:00:00.000-07:00

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

2010-04-23T05:09:00.000-07:00

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

2010-04-21T08:36:00.001-07:00

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

2010-04-21T08:36:00.000-07:00

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

2010-04-21T08:30:00.000-07:00

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

2010-04-21T05:46:00.000-07:00

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

2010-04-19T09:52:00.000-07:00

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

2010-04-19T09:42:00.000-07:00

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

2010-04-19T09:24:00.001-07:00

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

2010-04-19T09:09:00.000-07:00

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

2010-04-17T23:32:00.000-07:00

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

2010-04-17T20:24:00.000-07:00

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

2010-04-17T09:03:00.000-07:00

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

2010-04-16T03:54:00.000-07:00

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

2010-04-16T02:32:00.000-07:00

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

2010-04-12T08:35:00.000-07:00

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

2010-04-10T09:02:00.001-07:00

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?"

Saturday 27 March 2010 - Treatment Day 87

2010-04-10T09:02:00.000-07:00

I had lots of fun swimming in the hotel pool with Omar and Emma today. Nurse Lee says it's ok for chemo patients to swim in pools as long as they are chlorinated and freshly cleaned by the poolman. That means no dead bugs or debris floating in it. The chlorine kills off all the germs. Though grandma says that chlorine is probably bad for cancer patients and could encourage the build-up of cancer cells. I didn't swim too long anyway. Mum later read somewhere that chemo patients shouldn't swim in saltwater pools or the ocean. I want to go to places like Sunway Lagoon but mum says no way.

Later, we built sandcastles and collected seashells on the beach. I had my favourite spaghetti and vanilla milkshake for dinner.

QOTD: "When it's low tide you can find lots of crabs on the beach. But can daddy find a lobster to kill and eat?"

Friday 26 March 2010 - Treatment Day 86

2010-04-10T09:00:00.001-07:00

I was really happy today, as mum and dad decided that we could go to Port Dickson again until Sunday. They said it would be a nice treat for me before I start my long chemo on Wednesday. I am not looking forward to that at all. This time grandma and tok (grandad) decided not to come along.

I love the beach.

Thursday 25 March 2010 - Treatment Day 85

2010-04-10T09:00:00.000-07:00

I had to go to Dr Lin's clinic today at SDMC to do a blood test. I wasn't very happy at all. I hate having my chemoport poked at. And the needle looks so much bigger than a normal one. It looks like a meat-hook which butchers use. Anyway, mum said Dr Lin really wanted to see me. She said he missed me because I haven't been to SDMC for so long.

Today, the nurse spent more than half an hour trying to get the blood to come out but she couldn't get any blood to come out at all. She tried and tried and tried but the blood just didn't come out. This always happens. The nurses at chemo daycare and the wards always mumble and grumble something about chemoport positioning. They sometimes have to take the needle out and try again. It really hurts. The nurses never know what to do because I refuse to lie down when they do it, and I struggle and scream if they try to pin me down. So they let me sit up. Sometimes it helps the blood come out if I raise my arm but that didn't do the trick this time.

So the nurse had to take the needle out and try to put it back in again. But the blood still refused to come out. Mum and the nurse were both extremely stressed by then. I was just crying a lot. I got cold so they had to get a blanket to wrap me up in.

In the end, I had to go to the blood lab and the lab technician had to do it. I screamed when the nurse suggested they take it from my arm. So the lab techie, abang Ram, took it from my finger. He just pricked my finger a little bit and the blood dropped bit by bit into a tiny bottle. He gave me a sweet. But I don't really like sweets at all so I gave it to mum.

Nurse Lee said maybe the chemoport was blocked and maybe I had a small blood clot in it, because mum told her this sort of problem happens all the time. Even the paediatrician at the A&E took half an hour to get blood from me the last time. It's very painful and traumatic for me and everyone. So nurse Lee said the nurses would put something in next time to unblock the port. I wasn't sure I liked the sound of that but mum said it is just like water.

After the blood test, I went back to Dr Lin's office. I smiled when I saw him. I don't know why. He was so shocked. He said he'd never seen me smile before.

My blood counts were good so he said I can come again next Wednesday for a 24-hour Methotrexate (MTX) chemo. You can read about it under my chemo list on the left or here. It basically kills off all the cancer cells that like to hide in the brain or spine. The other chemo drugs can't do that.

I normally have MTX as an injection into my spine. But this time it will be given through an IV drip into my port and it will run for 24 hours. I will have to be warded for at least 4 days to make sure my body flushes out all the MTX by then, because otherwise it will be toxic to my body.

Dr Lin also showed mum a new study that had just come out, on all the paediatric leaukaemic patients from Malaysia and Singapore. He said it was fresh out of the oven. He said it showed that standard risk ALL patients did very well and that 93 per cent of patients recovered. He added that the 7 per cent who did not, also included one patient who hadn't died of leukaemia but had died in a car accident.

Later dad asked mum what happened to the 7 per cent, because he wasn't really listening or he didn't really hear. She said they didn't make it.

Dr Lin said I will also need to fast on Wednesday from 4am because I'll be having my MTX injection in the spine (otherwise known as a spinal or an intrathecal or IT procedure) and a bone marrow biopsy. A BM biopsy is when they remove cells or tissues from my hip. I will need to be sedated because both the injection and the biopsy are very painful. The BM hurts more than the IT.

Mum said she hopes she will remember to make me fast this time. She sometimes forgets because she says she has a lot on her mind.

I have to start eating the 6-MP chemo tablets again, and an antibiotic called Bactrim which will help prevent me from catching pneumonia. Dr Lin said chemo patients are very vulnerable to pneumonia, and it can be dangerous for them. So I have to take 3/4 of a tablet of Bactrim every Thursday and Friday twice a day.

I also have to take 1/2 a tablet of 6-MP everyday from Thursday to Sunday and then 1/4 of a tablet everyday from Monday to Wednesday. But if I have a fever, I have to stop taking it. Mum was not terribly thrilled with all the complicated instructions. Dad stopped listening. Even the pharmacist downstairs didn't understand Dr Lin's prescription and had to call him up twice to reconfirm the dosages.

Dad bought a daily tablet box which has boxes marked Sunday to Saturday - AM and PM - so that I would be able to take my tablets correctly. After all the hullabaloo with the blood and the tablets, I was starving so I ate a hotdog at the 1901 stand downstairs.

After that, mum and dad took me to look at ELC toys at Bangsar Shopping Centre. Mum bought me a pretty pink CD player for me to play my favourite CDs like Zee Avi and Taylor Swift. We had a very late lunch at 3pm at Chillis after that.

Later mum took me to aunty Ashley's hair salon at Mont Kiara, to get all my hair shaven off. Mum didn't really want to, but dad kept saying my hair looked a mess. Most of the kids in chemo have shaven heads anyway so I didn't really think it was such a big deal. I think mum was more upset than me. Aunty Ashley opened up late especially for us, so that there were no other customers. She said I looked really healthy today. The last time I went, I had my neck permanently slanted to one side and I couldn't even walk properly because of the nerve damage in my legs due to the chemo. Lots of people who were outside the salon had stared at me that time, and mum got angry at them.

Blood Count:
Haemoglobin 15.7 (13.0-18.0)
WBC 5.0 (4.0-11.0)
Platelets 160 (150-400)
Neutrophils 15 (40-74)

QOTD: "Why does Dr Lin have so many cards in his office saying 'Dr Lin is No. 1', and 'Thank you Dr Lin'? And there is one card saying Happy Father's Day. Maybe somebody gave him the wrong card. He is not a daddy. Is he?"

Wednesday 24 March 2010 - Treatment Day 84

2010-04-10T08:59:00.000-07:00

That's me at Port Dickson's Army Museum. The photo at the bottom was taken today. The photo on top was taken last year when I went with mum and grandma.

We had to leave Port Dickson and go home today. I have to go to hospital tomorrow for a blood test. I was very very upset. I didn't want to go home, and go back to hospital. I don't really want to have to go to hospital ever again. But mum said I have to, and when I'm all better, I can go on holiday again.

We stopped by at the museum on the way back. It's at the Port Dickson army camp. It's got lots of cool stuff -- trains, jeeps, tanks, helicopters, fighter jets, video shows, sounds of horses and gunfights, a tunnel and even a photo of grandad! It's my favourite museum ever and we stop by every time we're in PD.

Tuesday 23 March 2010 - Treatment Day 83

2010-04-10T08:56:00.001-07:00

I had breakfast with grandma and grandad today. Then I went swimming with Omar and Emma and had a really good time. I haven't had a good swim since I got leukaemia. Grandma says the chlorine in pools is bad for me. But I didn't swim that long anyway, just 40 minutes or so.

Monday 22 March 2010 - Treatment Day 82

2010-04-10T08:55:00.000-07:00

I was really excited today. I finally get to go on holiday because I am not having any chemo this week at all. But mum said we shouldn't go very far in case of emergencies so we're only going to Port Dickson, which is an hour's drive from KL. We're staying at the Thistle Hotel. We go to Avillion every year so dad said we should try somewhere new.

Grandma and tok (grandad) and aunty Lina and Omar and Emma also came with us for the holiday. Our rooms are all next to each other's.

That photo up there is of me and Omar discussing which activities to do in the hotel. They have jetskiing, banana boating, sand art, and lots of other cool stuff. But we decided to just go to the beach and build sandcastles instead.

Later I had some rice and fish for tea, grandma had made it at home and brought it with her.

I was hungry again at night so I had fish and chips and a vanilla milkshake for dinner at the hotel coffeeshop.

Sunday 21 March 2010 - Treatment Day 81

2010-04-10T08:53:00.000-07:00

I played with the kitchen again the whole day today. I really really love it. It is the best present ever. Tok (grandad) came over, and I pretended it was my cafe and I took his order and made him sandwiches and lots of other goodies at my cafe. Grandma made me some real fish and rice to eat for lunch.

Dad went out to buy some groceries while mum worked a little bit today. She isn't on duty today but she had to do another story, this time about a man who went to churches.

After dad came back, she went out to shop for more new clothes for me. She also got some organic sunblock and organic mosquito repellant for me, as we are going to the beach tomorrow. I had some waffles for tea.

Saturday 20 March 2010 - Treatment Day 80

2010-04-10T08:41:00.000-07:00

Dad assembled the toy kitchen today, it is such a cool kitchen. I played with it the whole day. Lots of thanks and hugs to aunty Azrinaz.

Dad took a photo of me and the kitchen, on his phone to send it to mum, who is working in the office. She was still busy with the party story.

Later, grandma came to babysit again because mum and dad went out at night. They went to see one of my favourite singers, Zee Avi. I didnt go because mum said it was only for grown-ups. Anyway, it would be full of people and germs, she said. I like Zee's songs Bitter Heart, Poppy and Honeybee and can sing them all. I played with my new kitchen all night until mum and dad came home.

Friday 19 March 2010 - Treatment Day 79

2010-04-10T08:33:00.000-07:00

I received a huge surprise package today. It was a massive toy kitchen, with a fridge and microwave oven and everything. It was a gift from mum's friend HRH aunty Azrinaz of Brunei. She'd had it ordered specially, from London. Aunty Fareen came over to deliver it. But I can't play with it yet because mum said I have to wait for dad to assemble it. I can't wait. Thank you aunty Azrinaz.

Mum had to work today so grandma came over to babysit in the afternoon. Mum made some phone calls to lots of people about some party while grandma and I made a mermaid trinket box.

I was in a porridgy kind of mood so grandma made me some porridge.

Thursday 18 March 2010 - Treatment Day 78

2010-03-23T23:23:00.000-07:00

I can finally go home today. My fever is all better now. But Dr Lin said I'll have to see him again if the fever comes back. I may get a fever again later because my White Blood Cells (WBC) will be very low 7 days after the Cyclo chemo. They only start rebuilding about 14 days after. This is because the Cyclo is very very strong and kills off all the cells. WBC help to fight infections so I will be very prone to infections when my WBC is low.

Dr Lin gave me Fluconazole capsules to take home. They prevent and treat fungal infections in my body. He also gave me Potassium Chloride tablets to increase my potassium levels which are a bit low at the moment, due to the Ampho-B antifungal.

I didn't really want to go home, despite being really fed up of staying in hospital all the time, because I knew the nurses would need to take the needle out of the chemoport. I hate that because it really stings when they rub the alcohol swab over it after they take it out. So I cried when Dr Lin said I could go home. Everyone was puzzled at first but then mum told them why. Dr Lin tried to iron out the frown lines on my forehead.

Mum thought we could go home in the morning after Dr Lin had seen us but my haemoglobin levels were low so I needed a blood transfusion. It took several hours for the blood lab to get the right match for me, so it only started at 4.30pm.

It normally takes 4 hours for all the blood to get into my body but it took a lot longer today because the machine I got today was not working properly and kept jamming up every two minutes. One of the nurses said this was because it hadn't been sent for servicing. The transfusion machines need to be serviced every once in a while. Kind of like a car.

Everytime it jammed up it made loud beeping noises so I had to call the nurses every time for them to reset the machine and make sure the blood was going into my body. So there was a steady stream of nurses marching in and out every two minutes throughout the whole day. This lasted til after 9pm. Mum got a headache.

I was rather hungry today. I had fish, rice and watermelon for lunch, a sausage for tea, fish and rice again for dinner, and lots of hot chocolate in between.

We only got discharged after 10pm, so we got home after 11pm. I wasn't very happy when they took my needle out. I wanted to keep the needle but mum said there would be germs if it's left in for too long.

Blood count:
Haemoglobin 10.00
Platelets 164
Neutrophils 48
WBC 2.0 (4.0-11.0)
Potassium 3.1 (3.5-5.1)

Today's bill: RM6,196.16

QOTD: "I'm pretending I'm camping. Campfire check, sausages check, marshmallows check, the stick to hold sausages and marshmallows check, cold water check. Now I need mustard and chilli sauce."

Wednesday 17 March 2010 - Treatment Day 77

2010-03-18T06:28:00.000-07:00

My fever was completely gone today. So Dr Lin said I can go home tomorrow. Mum was pleased. But then she suddenly realised she needed to get the car washed before that. So she tried to find a 24-hour carwash, because she can only leave when dad comes in the evening after work.

Later, mum went to a parents support group in hospital while grandma came to babysit me. Some mums and dads of new patients and surviving cancer patients came to share their experiences. They discussed a lot of topics, including supplements, diet and whether it was safe to go to public places.

Nurse Lee, who works with Dr Lin, was there to answer questions about supplements and stuff. She said that some supplements and most traditional Chinese herbs can be toxic when they interact with the chemo drugs. These include ginseng, gingko, high doses of Vitamin E, fish oil, turmeric capsules and garlic capsules.

Later she told mum that Dr Lin didn't believe in supplements, even those that weren't dangerous to chemo patients. She said that only multivitamins are recommended, because they contain smaller doses of vitamins.

One of the parents said that perhaps it wasn't advisable to go out at all, in order to prevent infections, even to places that were not crowded. But Dr Lin had told mum that all his patients got infections whether they stayed at home or went out. The nurse later told mum that patients could get depressed if they just stayed at home throughout the entire treatment. I really hate staying at home all the time, I get so bored. I like to go out to the malls and restaurants and check out new stuff.

After that mum went out to get the car washed. She also had the aircon cleaned of fungus. She got me some new clothes and pyjamas while she waited for the car to be cleaned. She also got me a new monopoly game, it was a special Hannah Montana version.

I walked around a bit today to exercise my legs. Mum unplugged my drip which has all the antibiotics and antifungal and hydration. I looked out the window and saw Sunway Lagoon and Sunway Pyramid.

Tuesday 16 March 2010 - Treatment Day 76

2010-03-18T06:07:00.000-07:00

My fever is getting better, I had a low-grade fever of 37.6 today. But Dr Lin said I can't go home so soon yet because I will probably get a high fever again.

Mum didn't have to work today so she decided to go out and go shopping. She says she still needs to buy a lot of new clothes for me, because my old clothes are really too tight. I used to be the sort of girl who could still fit into her old pyjamas that were meant for 12-18-month-old babies. Despite being 5 years old. But because of the steroids I took last month, I need to wear clothes for at least 8 or 9 year olds, even though I am only 6.

Grandma came to babysit while mum went shopping at Gardens. Grandma made me some yummy porridge so I had that for lunch. I hate hospital food. Even the plain rice tastes yucky and I don't like to eat it.

Mum bought me some new tops, bottoms, dresses and underpants. But she says I still need a lot more. She also bought me some new books - Roald Dahl's James and the Giant Peach and two sparkly Lil Miss books. She also got me a new pasta cookbook and a Fashion Modelling CD-rom game.

Monday 15 March 2010 - Treatment Day 75

2010-03-15T00:46:00.000-07:00

Dr Lin said he would start me on Ampho B so that I could go home quickly. Mum asked if I could go home tomorrow and he laughed and said that's not what he said. He told mum that he suspects that my chemoport is infected. So far the blood culture has not grown any bacteria or fungi.

I had a fever again at 6am, this time it was 37.9. Mum gave me paracetamol to make my temp go down but it came up again to 37.8 at around noon. I woke up really late today, around 11am, maybe because I felt really tired from the day before. I didn't have much of an appetite, and didn't eat breakfast or lunch. I just had two cups of milo and lots of water.

I played computer games like Barbie and Polly Pocket during the day while mum worked on her laptop. Later, Dr Lin gave us some really good news. He said my results had come back from Singapore and it showed that I had Standard Risk ALL. This is the lowest risk category for ALL. He said he was aiming for all his Standard Risk patients to be completely cured of leukaemia. Because sometimes cancer patients can become ill again even after they get better.

I started reading Harry Potter and the Philosopher's Stone today. Uncle Kumar (mum's friend) had given me the book.

Sunday March 14 2010 - Treatment Day 74

2010-03-15T00:08:00.000-07:00

I had a fever of 39.5 just after midnight so mum and dad took me to SDMC at 1am. I took some paracetamol before that so my temperature went down to 37.9. The doctor at A&E called up Dr Lin who said I needed to be admitted. I wasn't very happy at all. I wanted to go home straightaway.

The doctor at A&E took some blood from me for a blood culture which will tell whether I have bacteria or fungi in my blood, or not. If there is bacteria or fungi, it'll grow in about 2 to 3 days. Doctors and nurses always tell me to lie down and close my eyes when I have blood taken out, but I don't want to. I want to sit up, look at the needle, and help to hold the connecter. They're always surprised.

We got settled into the hospital room at 2am. I wanted to watch the Disney channel but mum said I had to go to sleep. Dad went home. Luckily mum had brought her suitcase with her already, which had all my stuff, and hers.

Since they don't know what's wrong with me, they started me on Amikacin and Meronem antibiotics first. My temperature went up again, this time to 38.6, at 5pm.

We were supposed to have a small party for grandad today because it is his birthday tomorrow. But I couldn't go because I had to stay in hospital. So grandma and grandad brought the food and the cake to hospital after the party. There was a lot of food -- nasi briyani, mi bidali and blackforest cake. They are all grandad's favourites.

Aunty Nora brought me some Mr Men, Little Miss and Powerpuff Girls books. I really liked them.

Saturday 13 March 2010 - Treatment Day 73

2010-03-13T07:05:00.000-08:00

I mooched around at home today because mum said I shouldn't go anywhere as I'd just finished chemo and I was susceptible to germs. So I stayed at home with dad the whole day while she went to the office to do some work. She needed to get into the office system and the Maxis broadband is just too slow to do that. Before she left, she made me take some propolis, manuka honey and vitamin c to boost my immunity. I wasn't terribly thrilled.

It is the 1st day of my 2-week chemo break and I thought I'd be able to go out and do stuff and check out some malls or something. But mum said everywhere would be too crowded as it is the 1st day of the school holidays and it is also a Saturday. I wanted to watch Disney on Ice but mum said the place would be a cesspool of germs.

Later I felt a bit tired so I had a nap in the afternoon. Dad took my temperature and he said I had a low-grade temperature of 37.6. So he gave me some paracetamol.

Mum had to do a story about a man and a Chinese association today. After work, she bought me some new tops with buttons down the front so the nurses can put needles into my chemoport easily. She also got me a pretty flowery headscarf. She says I need a whole new wardrobe because I have grown bigger by 2 sizes, and I need a lot of tops with buttons down the front, but she hasn't had the time to shop properly.

Friday 12 March 2010 - Treatment Day 72

2010-03-13T06:06:00.000-08:00

I had my 2nd round of Cyclo today. We had to go to hospital really early because it takes 8 hours to finish. Mum had to work so dad took the day off. Mum sent dad and I to hospital and then she went back home to work. She had to do a story about a king, his 2 queens and 2 princes.

Because I was stuck in hospital the whole day, mum packed me a lot of stuff to do. She packed me another doll-making kit, so dad and I did that. She also packed me my Strawberry Shortcake doll & swing, lots of books, and my DS Lite.

Dr Lin said I was doing well. Dad told him my temperature was 37.4 this morning but he felt my forehead and said I was fine. The nurses had taken my temperature earlier too, and it was normal. He strongly suggested that I shave all my hair off. He always asks mum about it, and mum always mumbles something in reply.

Mum was very late in picking us up, so I got very bored and upset while waiting. She said there were massive traffic jams all over the Klang Valley, plus it was raining. It took her over an hour to get to hospital while it usually takes 30 minutes.

I wasn't very hungry so I didn't eat much today. Mum bought roti canai for breakfast but I wasn't hungry. I just had plain rice for lunch. I munched on some seaweed in the car on the way back. Then I had a handful of fries and a strawberry smoothie for dinner. Mum says I have lost my ravenous appetite after I stopped taking Dexa.

Blood count:

Haemoglobin 12.8

Platelets 384

Neutrophils 62

Today's bill: RM1,509.35

QOTD: "If I don't sleep near somebody, I'll get bad dreams. Like me changing into a boy. That's a very bad dream."

Thursday 12 March 2010 - Treatment Day 71

2010-03-11T04:56:00.000-08:00

I had my last dose of Ara-C for the week. There were only 2 kids in chemo today, including me. It was really quiet today. It was really noisy yesterday when chemo daycare was full. Mum told Dr Lin I'd taken 6-MP for 29 days already. I'm supposed to take it for 28 days. So he said I can stop taking it now. But he said I was doing really well.

Aunty Vanessa, whose daughter Sarah also has ALL, congratulated us for coming to the end of the 1st phase of our chemo. This is because I will be having my 2nd round of Cyclo tomorrow. It marks the end of the 1st phase. The next phase will start in 2 weeks time, after a break with no drugs. Cyclo is the 8-hour chemo, which I had for the first time about a month ago. I didn't react too well, and got an infection after that, and had to stay in hospital for 10 days.

Grandma had to go and see her doctor again today, so it was just me and mum. I wanted apple juice and snacks after we finished but after we bought those, mum suddenly realised she had run out of cash. This was because she had given money to grandma last night to pay some bills. She didn't have any money in the car either because dad had used it last night. So mum didn't have money to pay for the parking. So we had to cross the bridge to get to the ATM machine at the new wing. Unfortunately the machine was not working. So we had to cross a huge highway and a large drain to get to the nearest bank. I wasn't very happy and mum looked quite furious. I couldn't cross the drain but luckily a very nice old man who was walking past offered to carry me across.

After that ordeal, I felt hungry so I had a hotdog at the hospital before we left. Then I felt hungry again and I remembered seeing a Japanese restaurant next to the bank we went to, so I suddenly had a craving for Japanese. Seeing as it was past lunchtime, we had our late lunch at a Japanese place on our way back. Mum said it was ok because it was totally empty and there were no other people. Good thing too, because my neutrophils aren't very high at the moment. After that, I had waffles for dessert.

When we got home, I got upset because I suddenly remembered that mum said the nurses would need to take my needle out of my chemoport on Friday because I will be on a chemo break for two weeks. If they leave the needle in, mum says there'll be germs. I remembered that tomorrow is Friday. Mum tried to distract me. I made a mermaid doll with a doll-making kit after that. But I couldn't finish it because we couldn't find the double-sided sticky tape.

QOTD: "I don't want to do that again. That wasn't very nice. Crossing the big road, and crossing the drain. It's really dusty. There's lots of cars going very fast. You could get killed."

Wednesday 10 March 2010 - Treatment Day 70

2010-03-10T03:35:00.000-08:00

I had my 3rd Ara-C chemo for the week. Dr Lin came in a bit late today. But I got a really nice surprise, aunty Mel (mum's friend) came to visit me in chemo daycare. She brought me a lot of presents, she got me a pink cash register which had monopoly money and credit cards and beeping buttons and everything. She also got me some chocolate biscuits. Her daughter Heidi had also chosen a really pretty pink headband for me and a fluffy sequin-y pink pen which looked like a wand. I was really happy. I liked the headband and wore it immediately even though I don't have much hair at the moment.

Grandma couldn't come with me again today, because she had to go to see her doctor in the morning, and she had a party in the afternoon. But she came to visit me in the evening.

QOTD: "Grandad's never taken me to chemo before. He can come and see me in chemo one day. But he can't bring his bang-bang, else it might go off and hurt somebody."

Tuesday 9 March 2010 - Treatment Day 69

2010-03-10T02:59:00.000-08:00

I had my 2nd Ara-C chemo for the week today. Dr Lin came very early again today so I was finished by around noon. Grandma didn't come with us today, she had a lot of errands to run.

Mum taught me about times tables today. And I read some more of The Enchanted Wood while waiting for Dr Lin. I had a bit of a headache while waiting for him, but when the nurse brought me some paracetamol, I said it had gone. I said my legs hurt a bit too, so he made me walk a bit, but then I said they no longer hurt. Mr Bean was showing on telly when he came, it was the one where he decorated a Queen's guard with flowers and his teddy bear. Dr Lin laughed and said Mr Bean was really silly.

I keep seeing the trailer for the new Alice in Wonderland movie on television. It is showing in the cinemas. I asked mum if she could buy me the dvd. I already have the Disney animated version on dvd. It looks a bit scary. If I watch the new Alice in Wonderland dvd at home, I can stop it halfway. Mum says it is indeed rather scary for young kids but I really want to see it.

It was such a hot day today. I ate watermelon fruit in the car on the way back.

Today's bill:

RM304.04

QOTD: "Alice in Wonderland has the same actor that's in Charlie and the Chocolate Factory. I saw it. His name is Johnny Depp."

Monday 8 March 2010 - Treatment Day 68

2010-03-07T22:52:00.001-08:00

I had to go back to hospital again for my last block of Ara-C chemo. I wasn't very pleased and made a huge fuss in the car. Mum said she thought the car would explode. I got sick in the car after that.

It turns out I also needed to have the chemo injection in the spine today too. That meant I couldn't eat before the injection. But mum forgot. Luckily I hadn't had breakfast, but grandma had given me a biscuit and some water after I got sick in the car. So even though Dr Lin came unusually early today, before 11am, he said he would need to do my spine injection later, to let the biscuit digest. So I had to wait until around 2pm.

I watched the Oscars while we waited. I was happy that Up won for the best cartoon movie and song. I enjoyed the dancing that they did to the soundtrack but mum didn't recognise the song. I was surprised Avatar didn't win.

After the Oscars ended, I read a bit more from The Enchanted Wood. I also played some computer games.

My blood count was good today, except for my haemoglobin, so I needed to have a blood transfusion too. That took up almost the whole day. I was extremely unhappy. I was already unhappy earlier because they needed to put a new needle into my chemoport. But mum says I can keep the needle until Friday because I need to go for chemo everyday until then.

Grandma's friend, aunty Sharifah and her daughter aunty Intan came to visit me, and brought me a teddy bear, chocolates and chocolate chip cookies.

I didn't really like it when they gave me ketamine to make me sleep for the injection. I tried to fight it. After that I woke up really quickly too. And I got sick a few times again after that. Maybe it was the biscuit that I had eaten just before the injection. Or maybe it was because I hadn't eaten breakfast. Or maybe it was because they nearly forgot to give me the anti-sick medicine.

I wanted to go home straightaway but the blood top-up wasn't finished yet. Mum told me to go to sleep. We went back rather late, at around 6pm. I slept in the car on the way back. I was so tired I didn't wake up when we got home, and I went straight to bed. My legs were tired too.

Blood count:

Haemoglobin 10.4 (13.0-18.0)

Platelets 255 (150-400)

Neutrophils 45 (40-74)

Today's bill: RM2,718.94

Sunday 7 March 2010 - Treatment Day 67

2010-03-07T00:49:00.000-08:00

Mum bought me a new hat today from one of my favourite shops. I don't have that much hair left, and none of my hats fit me anymore. And dad lost my favourite hat, I think. Mum says it's gone into the black hole. It was last spotted in his car.

Saturday 6 March 2010 - Treatment Day 66

2010-03-06T19:51:00.000-08:00

Grandma babysat me today while mum worked. She said it was a bit busy today, with lots of news, something about frogs being kicked before they could jump, and pretenders saying they were sorry, and banned parties splitting from parties. Whatever that means.

I started reading The Enchanted Wood today, a book by Enid Blyton. It is the first of the Faraway Tree series, which mum says she really enjoyed as a little girl. Mum also bought me a big recipe book from the Big Cook Little Cook series, which she managed to find in a bookshop. It came with an apron, shopping lists and cookie cutter. I had really enjoyed reading the little recipe books that came with the dvds. In fact, I'd pored over them so much, that mum says the books have all but disintegrated. But they were a bit fragile anyway.

I have a new favourite song now. It is called Dancing Queen by Abba.

QOTD: "If my tooth falls out, will the tooth fairy give me a coin, or a present? If she does, then that means the tooth fairy really exists, right?"

Friday 5 March 2010 - Treatment Day 65

2010-03-05T09:40:00.000-08:00

I told mum I wanted to go to school today, but just for an hour. I miss school, and my friends and Tok Mummy. I even packed some of my newest books into my Charlie & Lola schoolbag (which mum's friend aunty Eve had bought for me last year before I got ill), because I wanted to show them to Tok Mummy.

So I woke mum up bright and early so that she could send me to school. I even showered and got ready all by myself. But when we were almost there, I changed my mind. I didn't feel like going to school anymore. Mum had already called Tok Mummy twice so she said Tok Mummy was already expecting us. She called Tok Mummy again, who spoke to me on the phone, but I told her I didn't feel like going anymore. Tok Mummy said it was ok, and that maybe I could come another time.

While I was showering, I told mum I couldn't remember how the chemoport got inside my chest. I asked mum how it got there. She said Dr Goon had put it there. I asked how. She said I had had an operation. I said I could remember that it was in a room where everyone wore blue outfits and blue shower caps and one of them had put a canula into my ankle but I couldn't remember anything else after that. I said I had gone to sleep and I couldn't feel anything. She said that was good. Then I asked when they would take the chemoport, and I asked how it would be done. She said it would be taken out when I feel all better. I asked how it would be taken out, and she said I would have another operation.

I told her I didn't like being asleep when they do the bone marrow biopsies though. They give me a drug called ketamine. When I had the chemoport put in, they had given me a general anaesthetic.

I told mum that when I wake up from the ketamine, mum and dad look green and purple. The pictures on the wall also look very small and far away. I can also see goblins coming out of the ceiling.

Stayed at grandma's today, as mum went out for the evening. But grandma got the timings for my chemo tablets mixed up and had to call mum. Mum tried to go through it with grandma, but I'm not sure if grandma ended up getting even more confused.

Thursday 4 March 2010 - Treatment Day 64

2010-03-05T09:20:00.000-08:00

I had to go to the dentist today, because my teeth hurt. But the dentist said my teeth were in very good condition, and that one tooth was starting to become a little loose. He gave me some multivitamins and a mouthwash. Mum wasn't terribly excited. They're yet more things to add to a litany of things she has to remember to give me.

After that mum had to work. She did something about tea parties and the Internet and Putrajaya. I watched dvds and played computer games. Then mum and dad went to dinner at Kirishima and Delicious while grandma and grandad babysat. I called mum and dad every few minutes because I missed them. I asked them about where they went to, and what they were eating, and what type of Japanese food they had ordered. I really like Japanese food.

QOTD: "Where is New York? Is it near Hollywood? Because they have some rock stars in New York too, like in Hollywood. I saw it on TV. You know, when you get near to Hollywood, there is a sign that says Hollywood."

Wednesday 3 March 2010 - Treatment Day 63

2010-03-03T09:23:00.000-08:00

Mum's modem didn't work again so we had to go to the Maxis service centre. Again. They keep telling her it's working fine but this time, she insisted they change the modem. So they said they could upgrade the software instead. But then they discovered that the software couldn't be upgraded, and then they told mum the modem had been attacked by a virus. She told them that she knew all along there was something wrong with the modem but that they wouldn't listen.

After that I was hungry, so mum bought me some keropok lekor from the Satay Bar. She also got two durian pancakes from a stall called Durian Durian which sells cakes and other sweet things made with durian. I said I wanted a pancake because it smelled nice. But I didn't finish it because it had too much durian in it.

After that I wanted to go to grandma's. She said she once knew how to fold all sorts of things out of paper when she was younger. She made me a few things with my origami paper, baskets and other things. But mum forgot to take photos again. The above picture was taken off the Internet.

After work, mum went out for a bit to send aunty Lyza's chocolate fountain for fixing. Aunty Veena is having a chocolate fountain party this weekend for her nieces. The fountain didn't work during my party and I couldn't use it in the end. But the repairman managed to fix it.

Tuesday 2 March 2010 - Treatment Day 62

2010-03-03T09:07:00.000-08:00

Mum didn't work today. I played for a bit then I got bored and asked if we could go out. Mum took me to a bookshop at a mall that wasn't very busy. I bought lots of new books including some Little Miss books.

I had fillet-o-fish for lunch today, and then I had nasi lemak and waffles for tea.

After that, we went to grandma's house and I played with my cousins Omar and Emma. Mum went to Bangsar and got me more books, including some by Asha Gill on recycling. She also got me the book version of Fantastic Mr Fox by Roald Dahl. I had told her I wanted the book after her friends aunty Elisia and aunty Elena had bought the dvd for me.

Mum also bought me some origami sets. Origami is the traditional Japanese art of folding paper into all sorts of shapes such as birds and fish and stuff. Aunty Eve had folded a paper box and lots of stars which she had put into the envelope with my Big Cook Little Cook dvds and I really liked playing with them. I told mum I wanted to learn how to fold stars too. I wanted to give one to grandma, to grandad, to dad, and to Tok Mummy. But the origami sets we got were a little too difficult.

Monday 1 March 2010 - Treatment Day 61

2010-03-01T05:36:00.001-08:00

I was very cheerful today because I didn't have to go for my chemo. I woke up late, and then watched some of the Big Cook Little Cook DVDs again.

Mum said her Maxis modem wasn't working again so we had to leave the house and go to the service centre. But for some reason, the modem worked when they tested it. It always does that. Mum says it is a conspiracy.

After that I had some keropok ikan at the Serai Satay Bar. At first I wanted my favourite keropok lekor but then I changed my mind. Mum had a teh tarik. We also bought lots of Dettol wipes, mum said we'd run out of them. When we got home, mum's modem didn't work again. So I had to go to grandma's because mum needed to go to her office to work on a story about politicians and oil.

Mum had to teach grandma how to give me my chemo tablets, she's never done it before. I have to take three quarters of the 6-MP tablet once a day everyday. And preferably 1 hour before meals or 2 hours after. And never with milk.

Sunday 28 February 2010 - Treatment Day 60

2010-03-01T05:23:00.000-08:00

Today was mum and dad's 8th anniversary. It was also my cousin Afifa's birthday. She had a special feast and prayers at a surau or prayer hall near her place, which was also to celebrate the arrival of her new baby brother Naim. I couldn't go though, because I had just finished a block of chemo yesterday and mum said I was very susceptible to germs, and there would be lots of people there. So everyone else went except for me and mum. I watched the Big Cook Little Cook DVDs again while mum cleaned the house. Uncle Hizwani (mum's brother) said they also had special prayers for me.

Later I went to grandma's house while mum and dad went out for a special dinner and massage. They hadn't had time to plan a proper celebration for themselves this year as they've been very busy. This time last year, we all went to Australia. But we probably won't be able to go on any holidays until the middle of next year or even after that. But dad says we may go to a quiet isolated beach or something when I have another chemo break in a few weeks time.

Mum still has RM5,734 worth of airline credits if anyone is interested in buying any.

Saturday 27 February 2010 - Treatment Day 59

2010-03-01T04:52:00.000-08:00

I had to go for my Ara-C chemo again today. This time mum and dad took me, dad said his cough had improved today.

Dr Lin said I was getting better and better. He saw that I was playing computer games while waiting for him. He said I won't have to come in for chemo next week, because he will be on leave. Mum asked if it was safe, and he said yes, otherwise he wouldn't say so. But he said I would need to take my 6-MP chemo tablets every day as usual.

I had roti canai for brunch while waiting for him, he came in very late at 1.30pm because he had a lot of patients at his clinic. The nice aunty who bought me roti canai the last time had bought some for me again. But it had egg and I didn't feel like eating egg today so I just ate the plain parts. Dad bought me another plain roti after that because I was still hungry. The aunty's son goes to chemo daycare but she says Dr Lin hasn't found out what is wrong with him yet. His platelets are very low, but she says that his bone marrow biopsy shows that he does not have leukaemia.

I wasn't very happy after chemo, because the nurses had to take the needle out of my chemoport. I can only keep the needle for about 4 days and my next chemo is only due on March 8. I screamed so loudly that they could probably hear me from outside.

After that I had some fish and chips for lunch. I also had some nuggets. The screen on mum's phone wasn't working very well anymore, so dad had to send it to the shop for repairs. Mum's Maxis modem wasn't working today either so that needed to be fixed too. The shop said it was ok but when she got home it didn't work again. So she decided to go to the office to work.

I had a big surprise when I got to grandma's house. Aunty Eve (mum's friend), who lives in London, had sent me a package of five DVDs of the Big Cook Little Cook cooking programme for kids. Mum had told her I'd wanted them. I was so excited that I watched all of them straightaway and read all the little cookbooks that came with them over and over.

Today's bill: RM368.54

Friday 26 February 2010 - Treatment Day 58

2010-02-26T20:14:00.000-08:00

Today is a public holiday -- the birthday of Prophet Muhammad -- and chemo daycare is closed. But I still had to go for my Ara-C chemo as scheduled, because it is in my treatment protocol. So Dr Lin gave it to me at the A&E department. Dad didn't have to go to the office today, and I wanted him to take me to chemo, but mum said he musn't because he has a bad cough.

Dr Lin asked me why I never smile or talk when he's around. I didn't really reply. He asked mum if I was normally chatty, and she said yes. He asked me if I was his friend, and I didn't reply either. Mum told him it's because I don't enjoy having the chemo done. He said nobody does.

Mum told him my skin was peeling but she had given me lotion, and he checked my hands and feet and said they looked ok. She said I'd complained of leg pain yesterday but I said my legs were fine now and maybe it was just because it rained heavily yesterday. Dr Lin said I spoke English really well. Mum said yes, but my Malay is rather poor.

After that I went to play with my cousins Omar and Emma while mum and dad went to Ikea to buy some new furniture. Mum also bought some more new DVDs for me: She bought Charlie and the Chocolate Factory, Alvin and the Chipmunks, the Hunchback of Notre Dame and Harry Potter and the Sorcerer's Stone.

I'd brought my pink guitar to grandma's house. Aunty Ida had bought it for me at ELC. We played with it the whole day. Aunty Lina had also bought pink Ikea tables for me and Emma to do arts and crafts on, and we played on those for a bit. I was really tired after that and I fell asleep in the car on the way home and didn't wake up until the next morning.

Today's bill: RM417.44

Thursday 25 February 2010 - Treatment Day 57

2010-02-25T08:45:00.000-08:00

I had to go to hospital again to get my 2nd dose of Ara-C for the week. I am getting really tired of going to hospital so I wasn't very pleased when mum told me. The nurse had let me keep the needle in my chemoport yesterday though, so it wasn't too bad. They didn't need to poke me again today.

Chemo daycare was really full of sick kids today, so we had to wait outside for our turn. I didn't get to lie on a bed. It rained so heavily on our way back home that I couldn't even see the roads. Mum said it was raining cats and dogs and elephants.

My cousins Omar and Emma came over to play with me and my new birthday presents while mum worked on her computer. Aunty Lina had come to let our cleaner in while we were out.

The three of us made some funky window art stuff which can cling to windows. I made mine all by myself and stuck it on mum's sliding door. She didn't even need to help me or anything.

Today's bill: RM310.54

Wednesday 24 February 2010 - Treatment Day 56

2010-02-25T08:27:00.000-08:00

I had to go back to hospital today for another block of chemo again. I wasn't very happy at all, and I told mum I just wanted to talk to Dr Lin and that was it. I didn't want any blood or medicine or water to be put into my chemoport. I don't like it at all. Mum said she would tell him.

But the nurses took blood from my chemoport for a blood test. And my counts were ok, so I had to do my chemo. It was the Ara-C chemo. I was really hungry while waiting so I had rice and fish which grandma had made for me. I was also bored so I did some of Tok Mummy's books and I read George's Marvellous Medicine again.

Grandma told Dr Lin that I had told her I'd wanted to be a chemo doctor like him when I grow up. He smiled and patted me on my cheek and said I could be anything I wanted to be provided I have the determination. He asked the nurse if he was right. She dutifully said yes.

After that, I had to go and see Dr Sofiah again. She made me walk about her office, and even run and jump. Mum was surprised to see that I could do a little of both. Dr Sofiah said my legs were much better and that I didn't need to take any more vitamin B. But she said I would need to take them again when I have to do the Vincristine chemo in a few months time.

On the way back, I was sick in the car. After that I was hungry again, so mum got me one of my favourite donuts from Big Apple on the way back.

Blood counts:

Haemoglobin 12.5

Platelets 501

Neutrophils 63

Today's bill: RM697.44 and RM366.05

Tuesday 23 February 2010 - Treatment Day 55

2010-02-25T08:06:00.000-08:00

I had my birthday party in school today. I was really excited, and I even dressed myself and chose what jewellery and shoes I wanted to wear.

I had a lot of fun in school. I hadn't seen Tok Mummy and the other kids for a long time. Everyone seemed excited to see me. We sang some songs together. I could remember all the words and even all the hand movements and everything. After that I cut my birthday cake, which was a pretty pink butter cake with a picture of all the Disney Princesses and a pink castle on it. We had lunch and mum and aunty Lina gave out heart-shaped marshmallows and biscuits dipped in melted chocolate. Ustazah, my religious teacher, read out a special prayer for me at lunch.

My favourite part was unwrapping the presents. Mum made me unwrap everything carefully so that we can reuse or recycle the wrapping paper to do our part to save the planet. She likes making me do that. She also makes us separate our rubbish at home.

I got a lot of presents. I got a microwave which made noises like a real microwave, lots of arts & crafty stuff, books, a Barbie hair braider, a Barbie Lego set, a Strawberry Shortcake doll on a swing and lots and lots of other cool stuff.

Tok Mummy gave me four new readers to read at home, and she'd also made me some activity books so that I don't get too bored at home or while waiting for Dr Lin in hospital.

On the way home, mum and I talked about tooth fairies and she said there might even be a hair fairy who gives presents to kids who lose their hair.

QOTD: "If my tooth falls out, I want to know if the tooth fairy really exists. But I don't think there is such a thing as a hair fairy."