Friday 26 February 2010 - Treatment Day 58

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

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

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

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."

Monday 22 February 2010 - Treatment Day 54

Mum's Internet wasn't working since last night so we had to go to the service centre to get it fixed so that she can continue working from home. It turns out the sim card of the modem was faulty and needed to be replaced. I had some fries from Carl's Jr for lunch.

After that, Mum bought some new DVDs for me. She bought me Princess Anastasia, James and the Giant Peach, Dr Seuss The Cat In The Hat and Dora The Explorer: 'Undercover Dora'.


After that I said I wanted to play with Omar and Emma so we went to grandma's house. I had a really good time playing with my cousins while Mum worked on her laptop and made phone calls. We also bugged aunty Lina to try out the chocolate fountain before tomorrow's party, so she melted some chocolate and we dipped biscuits in it. We had a lot of fun with the fountain.



Later I asked mum if grandma's neighbour was going to sell their house. I said I wanted to buy the house if they were.



QOTD: "I hate germs because they make me sick."

Sunday 21 February 2010 - Treatment Day 53

Mum called my school principal, Tok Mummy, to ask if we could quickly have the party as soon as possible while my blood counts are good and before I get another infection. Tok Mummy said yes so we're having it on Tuesday.

I started reading George's Marvellous Medicine today, it is another book by Roald Dahl. Mum had bought it for me. I'm beginning to see why she liked Mr Dahl so much when she was little, his books are a lot of fun to read. I am really enjoying this book, it is about a boy who believes his grandmother is a witch and he concocts a special medicine for her.

Saturday 20 February 2010 - Treatment Day 52

I got a nice surprise today. Dr Lin said I could go home as the Amphocil was working and I didn't have a fever anymore. He had also increased the dosage back up, and my body didn't shiver or have a fever either, which was good. But he told mum that I would need to come back on Sunday or Monday if the fever came back.

Mum and dad were really pleased. Mum said it felt like breaking free from prison again. But when we got back, we saw that the plants at home had died again. But mum said she didn't mind.

Mum's friend aunty Sharon, has a brother whose job deals with bacteria and fungus and stuff. He checks hospitals and stuff for bacteria. So she got him to come to our house today with some swabs to see which places has a lot of bacteria, so that hopefully I won't get sick again or at least not for a few more months.

I got another surprise today, a package arrived from aunty Elisia (mum's friend). She'd sent me some lovely books for my birthday. One was Pippi Longstocking, which aunty Elisia said she loved when she was a little girl, and another was Kitchen For Kids which contained wonderfully scrumptious looking recipes for kids including Triple-Tier Fudge Cake and Strawberry Fudge Layer Cake.

Blood counts:

Haemoglobin 11.3 (13.0-18.0)

Platelets 741 (150-400)

Neutrophils 89 (40-74)

Today's bill: RM15,055.72

QOTD: "Can I go to school for my birthday party now?"

Friday 19 February 2010 - Treatment Day 51

Dr Lin said he would start me on a new antifungal today, called Amphocil, so that he can give me a higher dose to speed up my recovery so that I don't have to stay in hospital for so long. He says I can probably go home on Monday and that I can take the Amphocil in chemo daycare if I still need it next week.

Grandma came to babysit me for a few hours while mum and dad went to the nearby Subang Parade shopping mall to buy books and toys for me. Dad also needed some more clothes for the hospital stay. Mum bought me some more Little Miss books and Enid Blyton's The Magic Faraway Tree series. Mum said she liked the Magic Faraway Tree series when she was a little girl. They also bought me a crystal fairy dreamcatcher to make and a Puppy Pinball machine. Mum also bought some dim sum from the hotel next to SDMC and I had a little bit.

The Amphocil was a bit strong, and it made me shiver and have a fever. My temperature was 38.3. Dr Lin gave me a smaller dose, and after that I was fine.

My skin's been peeling a lot lately, especially on my hands and feet. Mum thinks it could be the Ara-C chemo which can cause your skin to peel, so she bought some more organic hand cream for me, as I've had to use quite a lot.

Thursday 18 February 2010 - Treatment Day 50

I had a high fever again today of 39.5 degrees. Dr Lin came in really early at 9am and said I'd need to go back on the Ampho B antibiotics through my IV, as the Voriconazole tablets weren't working.

Dad asked how long I'd have to stay in hospital for. Dr Lin replied that he dared not say it as we would get shocked. I was extremely unhappy at the idea of having to stay here for a few more days. After that Dr Lin gave me my Ara-C chemo for the day.

Grandma and grandad came to visit. Grandma had made me some nasi minyak. It was really good. Mum went home for a bit to do some work on her computer, something about women and caning. She also made some porridge with cod and scallops for me. After she came back to SDMC with the porridge, I fell asleep, but she had to do some more work and make some more calls. So she did her work in the dark.

Mum said that Jasmine, one of our cats whom mum had given up for adoption after I became ill, had managed to find her way back to the house. Mum almost didn't recognise her because she was a lot thinner. She used to be really fat. The new family doesn't really want to keep her so mum says she may need to send her to an animal shelter unless she finds her a new family.

Wednesday 17 February 2010 - Treatment Day 49

Dr Lin came in really early today. He came in at 9am and I was still asleep. This is because I had to wake up at 6am and have an early breakfast because I couldn't eat after 7am. My breakfast came at 7.10am though, so I just had some milk, and some potassium syrup. I went back to sleep after. I was going to be sedated for the chemo injection into my spine. I also had my Ara-C chemo today.

I had a slight fever at 6am, my temperature was 37.9. So Dr Lin said I had to stay one more day. I was very upset. And I wasn't very happy at being sedated and having the chemo either. And I wasn't pleased at being rudely awoken at 6am by a nurse who announced that she was going to take some blood from me. I think I woke the entire hospital up. The nurse quickly left and another one tried to do the same thing.

Mum had salmon quiche and berry pavlova for lunch, which aunty Sarah (her friend) had brought for her. She'd also brought her daughter Jaya's toy kitchen for me to play with until I get my own one. I haven't seen it yet but mum says it's got pictures of the Disney Princesses and it even talks when you play with the knobs. She also got me Dora and horsey sticker books, and a new DVD -- Jack in the Beanstalk. I liked the sticker books and I wanted to watch the DVD straightaway.

Aunty Lilian (mum's friend) got me some new books too -- Little Miss Bossy and The Magic Word and a new recipe book Cooking For Girls. I started reading Little Miss Bossy on my own right away, and looked at pictures of burgers and other food in the recipe book after that.

I asked mum when I could go home, and she said "esok boleh balik"
(Maybe you can go home tomorrow) if I didn't have a fever and I said I didn't know what esok meant.

Blood count:

Red cells 11.8 (13.0-18.0)
Platelets 515 (15-400)
Neutrophils 63 (40-74)

QOTD: "Why is there no writing on the presents to say who they're from?"

Tuesday 16 February 2010 - Treatment Day 48

I started reading Charlie and the Chocolate Factory last night. I read two chapters. Dr Lin was late today, so I read 10 more chapters while waiting for him. I really enjoyed it. Mum said Roald Dahl was her favourite author when she was a little girl and she'd read every single book of his.

I found out that 10 per cent of royalties from the sale of the book funds and supports special paediatric Roald Dahl nurses in the UK who care for children with epilepsy, blood disorders and acquired brain injury. You too can do your bit by buying his books, it'll say on the back if the book's royalties are donated to the Roald Dahl charities.

Dr Lin said I will start on an oral antifungal antibiotic called Voriconazole today, and I won't need to take Ampho B through an IV anymore. Mum later found out that there are a lot of side effects to taking Ampho B through IV, which you can read about here: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682643.html

But he said that Ampho B covers a wider spectrum of fungi than the tablet, so he will need to monitor if the Voriconazole tablet will work on me. If it doesn't, I will have to stay in hospital for a few more days.

I was in a good mood after, because Dr Lin said I can probably go home tomorrow after chemo. I watched Mr Bean and I laughed a lot and I asked mum a million and one questions about Mr Bean. She said I was almost my usual self again.

I had a small bite of some pancakes and a slice of bread and butter for breakfast. Grandma came with some home-made nasi lemak for lunch.

I wore my new pyjamas today, which mum had bought for me. They were size UK 7-8.

QOTD: "Didn't Mr Bean go to school when he was younger? Why doesn't he have a father and mother? They could teach him a few rules."

Monday 15 February 2010 - Treatment Day 47

My fever's all better now, and Dr Lin was happy. He said the Ampho B is working because I have a fungal infection and the Ampho B fights fungal infections. My temperature was normal again, at 36.2.

He tried to get me to smile again today but I just refused. He asked me about the writing on my T-shirt. It says "All Wild Girls, Greece" and has a cartoon of three girls wearing swimsuits on it. He told mum he wanted to see the cheerful me, like how I was before I got ill, and mum said he'd never seen that before.

He noticed there was a lot of hair on my pillow, and told mum she might want to get all my hair shaved off.

As I'm all better now, he said I can start taking my 6-MP chemo tablet again tomorrow. I asked if I could go home today, but he said I needed to stay in hospital to make sure I'm ok. He said I can probably go home on Wednesday after I have my Ara-C chemo done, and the chemo injection into my spine. I wasn't very happy.

I felt a lot better today, so I did some maths with mum and dad. Mum asked me if I really wanted a dolls house I saw in the ELC catalogue and had said I wanted a few days ago. I wasn't sure but I said she could buy it for me.

Later aunty Lina and my cousins came by to visit. Aunty Elena (aunty Elisia's sister, mum's friend) got me a new dvd, the Fantastic Mr Fox. I had two hardboiled eggs for breakfast, minus the yolks, and some fried chicken for dinner. Mum had asked him if I could still eat fast food and junk food, and he said yes. He said there were only 2 conditions, that the food I eat is clean and cooked.

Mum found out today that another chemo baby, TH, who was ill and had been in hospital for 11 days last week, had had a fungal infection too. We saw her in chemo daycare just before I had my chemoport op. She was probably the 1st to get ill before Stephanie. Mum had spoken to her mum, and they'd only been sent home on Friday.

Sunday 14 February 2010 - Treatment Day 46

My temperature went up to 40.1 degrees at 3am today. Mum says I never used to be so ill, my temperature never hit 38 before I got leukaemia. I was really healthy before this, and even if I caught a cold, I would always get better after a day or two. I'd never spent a day in hospital before.

Some of you have asked how I got leukaemia, or what causes it. Actually, nobody knows what causes it yet, although there are several theories which you can read about if you google them. But they remain theories and are yet unproven. And it is also unproven that it is hereditary. Dr Lin says he doesn't know what causes it, and he says he wouldn't have to be a paediatric haematologist and oncologist if he knew.

Anyway, Dr Lin came in early today, wearing a red shirt, instead of his usual blue and white striped shirt, because it is the Chinese New Year. Mum and I wished him a happy chinese year. We watched a lot of fireworks through our hospital window last night, as we have a good view this time. It was a great show.

Dr Lin said I had a fungal infection, and that he would start me on Ampho B today. He said I should be better by tomorrow. Mum asked him how I got the infection. She was really puzzled because she works so hard to maintain extremely high standards of hygiene in the house and sanitises everything I am about to touch. But he said it is in the air.

Mum later found out that when patients with cancer receive chemotherapy (drugs used to kill cancer cells), normal cells in the bone marrow are often temporarily damaged or destroyed. Since the bone marrow produces cells that fight infection (white blood cells, or leukocytes), chemo makes us more susceptible to infection. These infections are usually due to bacteria or fungi.

The nurses said that baby Stephanie, an Indonesian patient of Dr Lin's is also in hospital for a fungal infection. She was admitted before me. I often see her in chemo daycare, and I saw her a week ago, before I developed a fever.

Grandma and grandad came by to babysit while mum and dad went out for lunch. They had lobster. They brought back a piece for me. Earlier, dad had bought me some of my favourite toast from CoffeeBean. I played masak-masak and my Princess Secrets boardgame with grandad. I also watched Willy Wonka and the Chocolate Factory, mum had bought the dvd for me yesterday.

Because I am taking Ampho B, I have to take another medicine called KCL. Ampho B can cause potassium levels to drop, so I have to take KCL to counter that. It tasted horrible so I was really unhappy about having to take it. But it is important and helps your body work, including the beating of your heart.

Saturday 13 February 2010 - Treatment Day 45

I kept bugging the nurses and Dr Lin again about wanting to go home. But my temperature was still extremely high today, at 39.8, so he said no again. He said my blood counts today were up a bit but I still needed to stay here because I was still having a fever.

He said it might be a fungal infection instead of a bacterial infection, and he may have been giving me the wrong gunpowder, but he needs to wait for the blood culture results before giving me the right gunpowder. He said I need gunpowder called Amphotericin B to fight a fungal infection.

Mum went out for a bit while dad took over her shift. She said she needed to go home and do the laundry and get a few things. She hasn't been home since Thursday.

She said it was ironic though, because when she got to her car, the car wouldn't start. The battery had died. It had been in the carpark for too long. Plus it was overdue for a major service by over a month. She hadn't been able to take it in to the service centre for servicing. So she had to call in a mechanic to change the car battery. Unfortunately the mechanic was not familiar with her type of car, and her car alarm kept going off after that.

So then mum went to Bangsar to get some stuff I wanted from ELC. With the car alarm still going off. But she managed to get around it by using her GPS car alarm instead of the original car alarm. She also got me some new pyjamas because I've grown so big lately and my old ones are too small.

Uncle Saiwan (mum's friend) sent some yummy Baskin Robbins Strawberry and Cheesecake ice-cream and lots of Chinese New Year goodies like traditional Chinese cakes, biscotti, fruitcake and chocolate. I really enjoyed the ice-cream. After that I had rice and fish for dinner, followed by Popeye's fried chicken for supper.

Blood counts:

Red cells 11.9 (13.0-18.0)

Platelets 140 (150-400)

Neutrophils 43 (40-74)

QOTD: "When I go home, I want to go straight to school so I can have my party."

Friday 12 February 2010 - Treatment Day 44

I told mum I wanted to go home today and I kept asking the nurses too everytime a different one came in to check on me. Then Dr Lin came in and when I asked him, he said "The answer is no." My fever still keeps going up and down so I have to be monitored in hospital. My temperature was 39.2 at 4am this morning. Dr Lin said I might need to be given a medicine called Bactrim to prevent pneumonia, which is when your lungs get infected by germs. Dad said pneumonia is very dangerous for anyone with leukaemia because their immunity is really low.

My blood counts are down, so I am really susceptible to infections. Dr Lin told me I don't have enough soldiers in my blood to fight the bad germs in my blood so I can't go home. But he says he's given me gunpowder to fight the germs, and we just have to wait until my blood can produce more soldiers.

He ordered a blood test to be done tomorrow, and if I have enough soldiers, then I can go home. Otherwise we may be in hospital for a while. I remember my friend Sarah being in hospital for 11 days when she had a fever in December.

Mum told him I was very upset at being in hospital on my birthday. Dr Lin and the nurses wished me a happy birthday and he told me that I have to be more mature now that I am older, and stop groaning every time he sees me. He tried to iron out the frown lines on my forehead with his fingers and tried to make me smile. But I wasn't very obliging.

Mum asked if the steristrip on my neck could be taken out now, as it's been a week since my op and Dr Lin had said the stitches would have healed after 7 days. He said yes. I wasn't very happy at all at the idea of having the steristrip taken off and started screaming. He said the ceiling will fall down. Mum made a nurse take it off for me. I didn't let her and the nurse didn't take it off at first but mum made her do it. The nurse said the whole hospital could hear me screaming.

I was upset since yesterday because I kept thinking about the party I'm supposed to have today. Mum had gotten the chocolate fountain ready and everything. I was worried my school friends would have the party without me so I called my principal Tok Mummy and told her that I will be having the party after I get better, so she musn't have the party today. She said of course, and she said that the whole school missed me loads. She said my friends had already brought presents for me and that she would try and send them over.

Aunty Carolina and my cousin Aliya came later, and they brought an entertainer as a special birthday present for me. My cousins Omar and Emma came too. The entertainer was really good, he made soooo many balloon sculptures for me -- ladybirds, flowers and flower bracelets, umbrellas, swords -- and he also performed magic tricks and he gave everyone lots of cool stuff. Aliya couldn't stay though, she started coughing when she came to see me, plus aunty Carolina had to leave to pick Aliya's sisters Janna and Monira up from nursery.

The entertainer's name is Richard Tong. He also made some balloons for Sarah, who has been staying on the 2nd floor since Sunday. She was doing a special 24-hour chemo on Sunday and kept being sick after that so Dr Lin didn't let her go home. She was really happy with her balloons.

I got 2 new cookbooks from Aliya and Janna and Monira, and Omar and Emma bought me a toy cake mixer and an ice cream sundae set.

I got a really bad headache after an hour and a half of the magic show and needed to take a nap so the entertainer left after that. We didn't get to cut the Mermaid Ariel cake that aunty Lina had helped to order for mum. But I woke up at night and was hungry so mum and I cut it together and I had some.

QOTD: "I want to go home."

Thursday 11 February 2010 - Treatment Day 43

I had a very high fever last night of 38.9. Mum gave me paracetamol and sponged me down with tepid water for an hour and it went down to 37.5. It went down further to 37.1 after that. The nurses had told us before that if I have a temperature of 38, I have to be taken to hospital immediately. But I think dad forgot.

Mum took me to hospital in the morning. It's my birthday and I wasn't very happy to go to hospital at all. Mum put her packed suitcase, which she always has on standby, into the car, just in case we get admitted. Mum said there were three kids with a fever/cold/flu last week in chemo daycare so she thinks I may have gotten it from one of them.

She said it was ironic that she goes to bed at 3am sanitising the whole house twice a day every day but in the end I might have gotten sick in hospital. Grandma said it might also have been from the malls.

I had scrambled eggs for breakfast before leaving the house. When we got to chemo daycare, the nurses said we should come in immediately next time if my temperature hits 38. They took blood for a blood test, and also a blood culture test to see whether I have a bacterial or fungal infection. But the results will only be known after 3 days.

The nurses called Dr Lin first to ask whether I should be admitted and he said yes. I was really unhappy, because I'm supposed to have a small party at school tomorrow with my friends.



Grandma made friends with one of the mums who went out and bought roti canai for her son and for me. Dr Lin came in really late at 1.30pm today, so I spent the whole morning playing with my DS Lite. I also listened to my Spanish and French CDs.



My red cells were low so I needed a top-up. Dr Lin also gave me two antibiotics called Meronem and Amikacin, and some hydration. They were given through an IV into my chemoport.



Aunty Lina came to pick up grandma, and she brought me nasi lemak and McD for a late lunch.



After I got settled into my room, aunty Ida (mum's friend) came to visit. She bought me the ELC Rock Star Guitar that I told mum I'd wanted. I was really happy. She also brought lots and lots of sushi for us and she had even ordered pizza delivery. It was like a real party.



Blood count:

Red cells 9.3 (13.0-18.0)
Platelets 135 (150-400)
Neutrophils 35 (40-74)

QOTD: "I want to go home. Right after this bag of hydration is finished."

Wednesday 10 February 2010 - Treatment Day 42

I had to go to hospital again today to see the paediatric neurologist Dr Sofiah. I wasn't very happy to go to hospital and I told mum I didn't want to see Dr Lin. He likes to put me to sleep or poke needles into me and give me injections or take my blood. Mum said we're only seeing Dr Sofiah.

We had to wait a long time for our turn at Dr Sofiah so in the meantime I played with my DS Lite and pored over the latest ELC toy catalogue. There were lots of cool stuff in there.

Dr Sofiah said my blood test showed that my postassium levels were fine, so that wasn't causing the weakness in my legs. My creatine phosphokinase (CPK) levels were also ok. When there's high levels of CPK, it usually means there has been injury or stress to the heart, the brain, or muscle tissue.

But she said the nerve conduction test showed a slight delay in the motor nerves (messages through nerves) in my right leg (right peroneal B Fib-Ankle). The measurement recorded was 33.18 velocities m/s while a normal reading would be 40. But she said it wasn't very serious.

My F Waves (messages that travel between the limb and spine) were absent from some parts of my legs (left peroneal, tibial and right peroneal). But she said it is only temporary and she tested my reflexes again and said there was an improvement from last week.

Mum said my legs were a bit better now and I could walk up the stairs without having to crawl on my hands and knees. Dr Sofiah said I could also do exercises called physiotherapy to get better faster.

Mum told her that my neck was also a bit stiff because I keep tilting my head to the opposite side of my new chemoport which is on the right side of my chest. I am still getting used to the chemoport inside my body. Dr Sofiah said I need to slowly learn how to turn my neck to the right again.

After that I was really hungry so we went to the cafeteria and I had rice with fried chicken.

I felt like playing with my cousins Omar and Emma again so we went to aunty Lina's house to play while mum worked on her computer. I ate noodles and prawn crackers while watching Charlie and Lola dvds and then I had a headache so I had to lie down for a bit. I had a low-grade fever so mum gave me some paracetamol.

There was rice for dinner, and butter prawns but I didn't feel like eating. On the way back, I asked mum if she had found a chocolate fountain yet for my birthday party in school on Friday. She said aunty Lyza (her friend) had kindly lent us her chocolate fountain for the party and 3kg of chocolate. I was really happy. Mum and I discussed what to get for the fountain. I said I wanted marshmallows. Mum said aunt Lyza also suggested some fruit and breadsticks.

QOTD: I want marshmallows for my chocolate fountain. But you have to buy the sticks to dip them with. Else everyone's hands will be sticky from the chocolate.

Tuesday 9 February 2010 - Treatment Day 41

I was really bored today so I told mum I wanted to go somewhere. It was her day off so she said we could go to aunty Nora's house and see my new cousin. Before that, we checked out some more toy kitchens on the Internet, and we saw a really pretty pink one at the Great Little Trading Co (above).

Aunty Nora's baby was really cute. I told mum he looked like his dad (mum's brother). He hasn't got a name yet.

Aunty Lina and my cousins Omar and Emma were also there. I hadn't seen them in a while. We watched Princess and the Frog on my dvd player. Then I said I wanted to go to the Toys R Us and ELC stores at Bangsar Village. I wanted to see if ELC still had the nice toy kitchen that mum saw a year ago. So aunty Lina and mum took us. But ELC didn't have the kitchen anymore.

I had a bad headache while we were there though and I said I wanted to go home. But before that I wanted to have spaghetti and fries at Marco's first. Then we had a look at some clothes at Adam's. Mum wanted to get some new pyjamas for me, because I've outgrown all my clothes, but I had another bad headache so we had to go home.

Monday 8 February 2010 - Treatment Day 41

Mum and I went to hospital again today. I was supposed to have my 5th dose of Ara-C and the IT chemo injection into my spine. But mum forgot to stop me from eating. I need to be sedated for the IT injection so I won't feel a thing. She said she'd gone to bed after 3am because she was working on her computer on a story -- something about frogs and parties --and had forgotten to stop me eating when I woke up at 7am. I had lots for breakfast -- cornflakes, scrambled eggs and toast.

She only remembered at 11am just as we were about to leave the house. She called the nurses at the chemo daycare and they said I should stop eating and just come over anyway.

Dr Lin was a little late today, so mum and I watched my new Ponyo DVD.

I used my new chemoport for the first time today. I was a bit nervous but the nurses took off the steristrip over the incision over my chest and inserted a special needle into the port to take some blood. The nurses said it wouldn't hurt but I wasn't very happy at all.

My red cells were a bit low so Dr Lin said I couldn't do the Ara-C this week. And I couldn't do the IT because I hadn't fasted. He said to come back next Wednesday after the Lunar New Year, for the IT, Ara-C and a blood transfusion. I also had a low-grade fever of 37.8.

Because I have a fever, Dr Lin said I must not take the 6MP chemo tablets for three days. I can take them again from Thursday, but instead of taking three quarters of a tablet for 6 days and then a quarter tablet on Sunday, I can only take half a tablet until I see him on Wednesday.

Mum and I also went to the hair salon to get new haircuts. My hair's been falling a lot, and dad's been complaining that the whole house is covered with my hair. So I needed to get a really short style, like that singer Rihanna.

Aunty Aida (mum's friend) got her stylist Ashley to open up just for us, even though her salon is normally closed on Mondays. Mum doesn't want to take me to a salon in a crowded mall. Her friend aunty Janica who can come to the house, is a bit busy this week because she's fully booked up until after the new year. Mum couldn't find any other stylist who could come to the house.

Mum also cut off all her hair because she said she wants to look just like me. She said Ashley was really good, and she was really pleased with our new hairstyles. If anyone wants to go, the salon's called Modish and it's just after the Garden International School in Mont Kiara.

Blood counts:

Red cells 9.8 (13.0-18.0)

Platelets 136 (150-400)

Neutrophils 46 (40-74)

Today's bill: RM314.95

Sunday 7 February 2010 - Treatment Day 40

I had nasi lemak for breakfast again today. Then I got mum and dad to take me to lunch at TGIF. I was in a good mood, so I listened to my Spanish audio CD. Mum bought it last month but I hadn't felt like listening to it until today. At TGIF, I had ice lemon tea, fish & fries and spaghetti, and then I had vanilla ice-cream for dessert. Mum and dad said Chillie's has much nicer food.

After that I got mum and dad to take me to Toys R Us for some toys and MPH for more cookbooks. I turn 6 this Thursday so mum and dad said I could get anything I wanted. Mum remembered that I had really really wanted a Nerf toy gun set before I got ill, but I didn't feel like getting that anymore. You can see them here: http://www.hasbro.com/nerf/en-us/

I got these:

Musical Freddy and his Flying Fish game (which dad chose and was very excited about) http://www.boardgamegeek.com/image/233229/elefun

Princess Secrets board game (which mum chose)
http://www.getprice.com.au/Young-Learners-Princess-Secrets-Game-Gpnc_232--39578627.htm

and a Barbie fridge which I chose.
http://plamoya.com/en/barbie-glam-refridgerator-p-19018.html

I told mum that I wanted to have a small party with my friends from school, so mum asked Tok Mummy if I could have a party at her place. She said it was fine. So mum bought some invitations. She normally prints out her own but she said she didn't have time to do that this year. I had told her I wanted a chocolate fountain so she said she'd try and get one for me.

I also bought lots of workbooks, stickerbooks and a French audio CD at the bookshop. We went home after that because I kept complaining of headaches.

Grandma and grandad were there when we got home. Grandma made me porridge with cod and scallops. I also had noodles before I went to bed.

Uncle Hizwani (mum's brother) and aunty Nora had had their 6th baby today at SDMC, so mum said we could visit them when we go there for chemo tomorrow.

Mum said we're also getting our hair cut tomorrow. Aunty Aida helped mum to ask her hairdresser in Mont Kiara to open just for us, before we go to chemo, so that no one else will be around. Mum had tried to get a hairdresser to come to the house, but they were either busy because of the Chinese New Year festival next week or they couldn't come to the house.

QOTD: "I want to buy something from Toys R Us."

Saturday 6 February 2010 - Treatment Day 39

I woke up early today at around 7am and had roti canai and nasi lemak which aunty Carolina brought for me at around 9am. I really like nasi lemak nowadays. I played with the Wii until about noon, and then I complained I had a bad headache. Dad said I should take a nap. I didn't really want to. We had KFC for lunch.

Mum looked up some toy kitchens on the Internet. She found a nice one at Vertbaudet (as shown above), but it's not available here. She said she saw a very nice huge one with a fridge and everything, at ELC in Bangsar a year ago but aunty Lina says it's not available anymore. Mum said she saw a smaller one at Ikea a few months ago, about the same size as the Vertbaudet one but in white.

I made crabmeat soup again with dad while mum worked on her computer and made phone calls. I had a very short nap after that.

Then Aunty June (mum's friend) dropped by and gave me a Lisa Simpson doll. It was really cute. She played masak-masak with me for a bit. Kakak Tari (my cousin Aliya's kakak) was with us to help out with the household chores for the day while Aliya and her mum and dad and sisters went to Malacca, and she made me some of my favourite keropok lekor while we played masak-masak. After she left, I had rice and an omelette for dinner.

Friday 5 February 2010 - Treatment Day 38

That's me, being wheeled to the Operating Theatre to have my chemoport put in. Dr Goon makes an incision in my chest, and another one in my neck. It is done under a general anaesthetic so I won't feel a thing. The port sits just under my collarbone on the right side of my chest. The op takes about an hour and a bit. I was really hungry because I couldn't eat anything after 3am. I was a bit nervous but mum and dad were with me.

You can read a bit more on chemoports or portacaths here:
http://www.sir.net.au/portacath_pi.html

Mum and dad had to wait in the waiting room while I had my op. Dad had breakfast while mum worked on her computer. The Internet was a bit slow though. Mum said she was also a little stressed because another family who were waiting there had a dad whose lungs had collapsed and he had to be put on a ventilator and the family were crying and praying. She was relieved when I came out of the OT.

I was alright and it didn't really hurt but I cried a lot because I wanted to go home straight away. But Dr Goon said to lie down until 3pm. The nurse gave me a cup of Ribena to sip but I was really thirsty so I gulped it all down. Then I asked for some chocolate. Mum gave me another new Polly Pocket toy to play with while she went and bought some chocolate. It was the first time I had asked for chocolate since I became ill. I ate it all up.

After we left, I felt fine but I was still hungry. I wanted to eat Japanese so dad took me to a Japanese restaurant for a late lunch. I had tempura and rice.

When we got home, I didn't feel like sleeping, so I played with my Wii.

Later on, aunty Sharon and aunty Eileen (mum's friends) came by to visit, but I was already asleep. Aunt Sharon brought me lots of new cookbooks for me to try out. Aunt Eileen helped mum to buy me a new Coddlelife glass milk bottle and some Earth Mama Angel Baby SLS-free shampoo. She also bought a new activity book+CD for me, and some new DVDs -- Ponyo, Mulan, Enchanted and The Wizards of Waverley Place.

Thursday 4 February 2010 - Treatment Day 37

I went to hospital for my 4th dose of Ara-C today. I had lots of peanut butter on white bread for breakfast, with chocolate rice and coloured rice sprinkled on top. Mum used organic peanut butter which doesn't taste as nice as my usual peanut butter and the chocolate rice helps to make it taste better. I don't even notice it's not my usual peanut butter. I also had a bowl of porridge cooked with scallops. I watched Princess and the Frog while mum cleaned the house and got ready. I was in a good mood so I finally let mum unwrap the huge Minnie Mouse doll that aunt Jess (mum's friend) had bought for me a while ago.

Grandma had to take grandad for a hospital check-up so it was just mum and I today. The nurses took my temperature, I had a low-grade fever of 37.5. They also took some blood because Dr Goon wants to see if my counts are ok, before he operates on me tomorrow to insert the chemoport. They took it from the inside of my arm, and I wasn't very happy at all. Dr Goon was pleased with my counts. The nurses said the counts were "beautiful." So I'll be having the op tomorrow.

I was quite cheerful today and mum said I was almost beginning to be like my old self again. I played with some of my toys before we went to hospital, and I played some games on her computer while we waited for Dr Lin.

Dr Lin saw me playing the games and mum told Dr Lin that my old personality was starting to come back and he said it is because I have stopped taking the Dexa. He also told mum that I should be able to walk normally again three months after we have stopped taking the vincristine. He also said that the hospital has free wifi and that we don't have to use our own modems.

I had KFC chicken and popcorn chicken and fries and rice when we got back. Aunty Carolina dropped by and we made meringue while mum worked on her computer and made phone calls. I really enjoyed making the meringue. Mum said it was really good. Aunty also got me some new cooking toys from Toys R Us. I liked them so much that I played with them the whole night. I haven't felt like playing with toys much for the past week or so. I told aunt Carolina I also wanted a toy kitchen. Mum said I already have one, but it's just that it's at grandma's house. Aunty made me a yummy omelette for tea, and I also had some sushi rice. Later I had fish and chips for dinner.

Aunty Aida (mum's friend) made me some of her special apple pie today. It was really delicious. She even put my initial Z on it. I really liked it, especially the crust.

Blood count:

Red cells 12.6 (13.0-18.0)

Platelets 215 (150-400)

Neutrophils 67 (40-74)

Wednesday 3 February 2010 - Treatment Day 36

It was a really long and tiring today at hospital. I didn't want to go again today. I had woken up at 7am and grandma had made me omelettes for breakfast but when I heard I was going to hospital I went back to bed to lie down. But mum woke me up. She said I won't need to go on Fridays, Saturdays and Sundays but I have to go in today because it is Wednesday.

First we had to see Dr Goon, the paediatric surgeon who will operate on me and insert my chemoport for me. He said there were 2 types, one with lines hanging out, and one which is hidden under the skin. Mum said we'll get the one hidden under the skin. I will be able to shower and swim with it. He said the one with lines hanging out is also prone to infections because it is outside. But he said that with the hidden one, I still need to be pricked a little bit, but with a teeny tiny needle.

When I heard that, I told him I didn't really want to wear anything on my chest but mum said the chemoport means that I won't need to have a canula inserted in my hand each time I need chemo through an IV. They can also take blood from my chemoport.

Dr Goon said he's free on Friday, so I'll need to have a blood test done on Thursday. If my counts are ok, then I can have the operation done on Friday.

After that we went to see Dr Sofiah for my legs. She is a paediatric neurologist. But when we arrived at her clinic, her staff said that Dr Lin had arrived at the chemo daycare and was waiting for me. He was in really early today, at 11am. So we had to go to the old building, as Dr Goon and Dr Sofiah's clinics are in the new one.

Dr Lin gave me my Ara-C through my canula. I told him I didn't want any injections today. He said he wasn't going to give me any. He asked mum if my legs had improved or worsened or were the same. She said they were about the same.

The nurses also took my temperature twice. Mum said my body felt really hot today. But my temperature was normal. The nurses said it could be because of the chemo drugs inside my body.

After that we went back to Dr Sofiah's clinic. We had to wait a really long time. I was really hungry and bored. I was extremely unhappy. When we finally got to see her, she checked my legs and made me walk and do some squats. She gave me some Vitamin B complex and Neurobion (Vitamins B1, B6 and B12). Mum was not very excited about more tablets for me to take.

Then I got sent to do a blood test to see if my potassium levels were ok. Sometimes if you don't have enough potassium in your body, you have problems with your legs too, she said. Or it might be the Vincristine chemo which is known to cause nerve damage in some patients. It is called Peripheral Neuropathy. You can read more about it here:

http://www.cancerhelp.org.uk/about-cancer/cancer-questions/nerve-damage-and-chemotherapy

When we went to the blood lab, I was so hungry that I had three packs of rice crackers. Mum asked if they could take my blood through my canula but the man at the blood lab said no. He felt sorry for me though because I got upset so he just pricked my finger instead of using a needle to take blood from the inside of my arm. It took a long time though because he needed to fill up two tubes. I made quite a lot of noise.

After that I had to do something called a nerve conduction study. A nice lady washed my feet and put some wires and stuff on them. She told mum it would be painful because they conduct electricity through the wires to see whether the nerves in my feet were working properly. Mum made a face. The test took a really long time. But I didn't say anything or cry. Mum asked the lady if I could feel the electricity. She said I could. Mum said I was really brave.

After that I was really hungry so I had rice, fries, sausages, fried chicken and Milo at the hospital cafeteria.

When we got back, I said I really wanted to make the ice cream cookies today so grandma helped me make them. Mum said they were really really absolutely delicious. She ate quite a lot of them. I only ate one. Then I asked grandma to make me some omelettes. And I tried cornflakes with milk for the first time. I normally don't like cornflakes. I had two helpings.

I was really tired so I had some milk in my new WeeGo Life Factory bottle and then I went to bed. It was 6pm. Aunty Carolina popped by after that to drop off some really pretty heart-shaped cookie moulds for me and some stainless steel tongs for my favourite spaghetti, as well as my favourite yoghurt and my favourite sushi rice. She also got me my favourite toasted bread from CoffeeBean. I used to have breakfast at CoffeeBean every Saturday after my violin classes. But I've stopped going for violin this year. Mum says maybe I can go again in one or two months once I feel a little bit better.

I woke up at 10pm because I was hungry. Dad made me some fried eggs. I also ate the sushi rice aunty Carolina bought for me. I played for a bit on my Wii. I haven't played with it in a long time.

QOTD: "When I feel better, I want to go to Sunway Lagoon."

Today's bill: RM622.04 (Dr Sofiah)

Tuesday 2 February 2010 - Treatment Day 35

I went to hospital again to get my Ara-C. The nurses had let me keep my canula yesterday so I was really pleased.

I had cheese sandwiches for breakfast before we left the house. We got to hospital at around 11am and I told mum and grandma that I just wanted to say hello to the nurses and then go home straightaway.

I got really bored so I looked at a cookie recipe book while I waited for Dr Lin. The nurses looked at it too. Mum told them I was really into cookbooks nowadays. I told mum I wanted to make ice cream cookies when we got home. She said I can make them with grandma, because she has to work on her computer when we get home. I asked if we had all the ingredients at home. She had a look at the recipe and said yes.

Dr Lin came in at 12.30pm. He said the ice cream cookies picture in the book looked really interesting. He asked if I could make some for him. I didn't reply. I made some grumbly noises. He smiled and said I'm always grumbling. He asked mum if I was always like this. She said no, and that I was a really bright and happy and cheerful girl before I became ill. She said my face had puffed up a lot too, and he said it was due to the Dexa and that it would go away now that I'm not taking it anymore.

Mum asked him if he could check my legs. I've been having difficulty walking lately. I can go down the stairs at home but I have to crawl on my hands and knees to go back upstairs. I also fell a few times yesterday after going home from hospital.

He asked mum when she started noticing it. She said she wasn't sure but maybe since I got ill. It actually started after I began the chemo. He said maybe I need more exercise because I've been doing nothing but sitting on the sofa or lying in bed for a month. He checked my reflexes and said that I had no knee reflex but I still had my ankle reflex. He made me walk a bit in the ward and do one or two squats. I could walk ok but I couldn't get up from the squats without needing help.

He said neurological problems are some of the side effects of the Vincristine drug. He made me an appointment to see a neurologist. He said the effect is temporary but he might reduce the dosage in the next chemo cycle when I need to be given Vincristine again.

Tomorrow I'll finally be meeting Dr Goon, the surgeon who will be inserting my chemoport for me. I really have had enough of needles.

My lips bled a lot today due to the chemo, and I was rather anxious while waiting at the hospital for Dr Lin so I chewed all my fingers. I still chewed on them at home until they bled and stained my t-shirt. Grandma bought me a few new lip balms from Body Shop and mum wrapped up all my fingers in plasters.

I was really tired today so I went to bed at 6pm. I fell asleep in my room. I normally don't like to sleep in my room much. But grandma said she'll sleep there with me, so I didn't mind.

I woke up later around 9pm or 10pm and asked for some spaghetti.

QOTD: "When we get to the hospital, I just want to talk for five minutes, and then I want to go home. I want to go home at 11 o'clock."

Monday 1 February 2010 - Treatment Day 34

I went to SDMC for my 8 hour Cyclo chemo today. It is an IV drip. Actually the Cyclo is just a small bottle and it doesn't take 8 hours but it is so toxic that the nurses need to give me lots and lots and lots of water or hydration before and after it, to protect my organs.

I had a blood test first. The first nurse put a needle in my right hand because I told her to put it in my right hand but she couldn't find a vein. It really hurt and I wasn't very happy at all. Another nurse had to do it, and this time they put it in my left hand. I was so anxious about the canula being put in that the nurses said my hands were sweating. And I never usually sweat much.

Mum said that it won't hurt as much when they put in the chemoport. I said I couldn't wait to try it.

My red cells were a bit low at 10.9 so I needed a blood transfusion as well as the chemo. Because it was a really long chemo, we had to go in really early today. We were one hour late and the nurses called us to see if we were on our way because the blood lab machine was not working and it would take an hour to read my blood test manually.

We came in at around 9.30am. I had pancakes for breakfast. Then I had some nasi lemak. I have never really eaten nasi lemak before but I just felt like eating it. I was extremely bored and grumpy by 11.00am and I told mum I wanted to go home. Dad bought me fish and chips for lunch.

Mum watched An American Tail with me, and then a bit of Pocahontas. I got really really impatient to go home after that. So she went to a Toys R Us at the Subang Parade shopping mall nearby and got me a new Polly Pocket set. I played with that for a bit.

Dr Lin said my bone marrow results were very good. He was also really pleased and slightly surprised with my blood counts which were all good except for the red cells. Mum was at Toys R Us so he spoke to dad.

Dr Lin also said today is my last day on Dexa for now, and I would start a new tablet called Mercaptopurine, or 6-MP, for a month. Mum or dad will need to cut a tablet into 4, because I have to take three quarters of a tablet every day. On Sundays I take one quarter.

Besides Cyclo, Dr Lin also gave me a new drug called Ara-C through my canula. I have to go to hospital every day from Monday through to Thursday for 4 weeks to have my Ara-C. I said I didn't want to go to hospital every day.

In the afternoon, the nurses said I had a low-grade fever so they stopped the blood transfusion before it was finished. They said I could be having an allergic reaction to the blood. They gave me paracetamol syrup which I never used to like to take. But now I'm so used to taking medicine, I took it quite easily.

I got hungry on the way back so I had KFC for dinner.

Later, mum went to a shop called Bebehaus in Bangsar Village. We really like Bangsar Village but we haven't been since I got ill. I like the Toys R Us and the bookshop. I also like a stall there that sells princess-y clothes. But mum doesn't like the princess-y clothes, she thinks they're too fancy. But I really like them. We also used to go to Bebehaus a lot when I was a baby, to get SLS-free shampoo and other stuff, when they only had a shop at 1Utama.

Mum ordered a new glass bottle for me, called Coddle Life. It looks like this:

http://www.stockmyshop.com.au/507/infant-child/coddlelife%E2%84%A2-there-is-a-new-bpa-free-glass-bottle-in-town

It has a nice pink rubber sleeve around it too like the Life Factory WeeGo bottle she bought for me the other day. But this one is a wide bottle, like my previous Avent ones. The WeeGo is a standard size bottle.

I didn't really like the MAM bottle, it takes too much hard work to get the milk. I really have to squeeze the teats hard to suck the milk out. I told mum I didn't want to drink like that.

Mum says she prefers glass anyway. Mum says I should really use big girls' cups by now, but I really enjoy bottles too much. So she still lets me use them.

Weight: 18.2kg

Blood count:

Red cells 10.9 (13.0-18.0)

Platelets 389 (150-400)

Neutrophils 63 (40-74)

Today's bill: RM2,157.79