Friday 23 April 2010 - Treatment Day 114

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

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

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


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

Thursday 22 April 2010 - Treatment Day 113

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

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

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

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

Wednesday 21 April 2010 - Treatment Day 112

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

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

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

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

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

Tuesday 20 April 2010 - Treatment Day 111

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

Monday 19 April 2010 - Treatment Day 110

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

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

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

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

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

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

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

Today's bill: RM85.20

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

Sunday 18 April 2010 - Treatment Day 109

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

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

Saturday 17 April 2010 - Treatment Day 108

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


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


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

Friday 16 April 2010 - Treatment Day 107

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

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

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

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

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

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

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

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

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

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

Today's bill: RM6,002.65

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

Thursday 15 April 2010 - Treatment Day 106

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

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

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

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

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

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

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


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

Wednesday 14 April 2010 - Treatment Day 105

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Weight: 18.6kg (-0.2kg)

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

Tuesday 13 April 2010 - Treatment Day 104

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

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

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

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

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

Monday 12 April 2010 - Treatment Day 103

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

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

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

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

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

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

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

Sunday 11 April 2010 - Treatment Day 102

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

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

Saturday 10 April 2010 - Treatment Day 101

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

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

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

Friday 9 April 2010 - Treatment Day 100

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

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

Thursday 8 April 2010 - Treatment Day 99

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

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

Wednesday 7 April 2010 - Treatment Day 98

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

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

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

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

Tuesday 6 April 2010 - Treatment Day 97

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

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

Monday 5 April 2010 - Treatment Day 96

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

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

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

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

Sunday 4 April 2010 - Treatment Day 95

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

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

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

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

Saturday 3 April 2010 - Treatment Day 94

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

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

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

Friday April 2 2010 - Treatment Day 93

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

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

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

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

Thursday April 1 2010 - Treatment Day 92

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

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

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

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

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

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

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

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

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

Wednesday 31 March 2010 - Treatment Day 91

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

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

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

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

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

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

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

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

Blood count:

Haemoglobin 14.5 (13.0-18.0)

WBC 4.3 (4.0-11.0)

Platelets 508 (150-4000

Neutrophils 38 (40-74)

Weight: 18.8 kg

Tuesday March 30 2010 - Treatment Day 90

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

Monday 29 March 2010 - Treatment Day 89

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

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

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

Sunday 28 March 2010 - Treatment Day 88

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

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

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

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

Saturday 27 March 2010 - Treatment Day 87

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

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

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

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

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

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

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

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

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.