Sunday 31 January 2010 - Treatment Day 33

I asked mum if I could go out again today. We went to Great Eastern Mall because mum says it's not too crowded and there's a new Toys R Us that I've been wanting to check out. Mum had bought me a new washable mask again, this time with lots of pretty pink hearts all over it. I wore that just in case there were any sick people at the mall.

I was really hungry though so we had lunch first when we got there, at 11.30am. I wanted to eat Japanese again. I had an ebi tempura set.

After that we went to Toys R Us. I was a bit tired though so I didn't really enjoy it as much as I thought I would. Mum asked if I wanted to get anything but I didn't. We went to the bookstore as well, for more cookbooks. Mum bought me a cookie and mould set just like the one my cousin Aliya has, and a recipe book for smoothies. I said I wanted to try a papaya, mango and pear smoothie at home. She also bought a recipe book for bread.

When we got home, grandma, grandad, aunty Lina, Omar and Emma were there to drop off some food but I was too tired to say hello.

I went straight upstairs and had a lie down. I had chicken rice for tea, and some KFC for dinner.

Aunty Veena (mum's friend) sent some frozen scallops and crabmeat. They were specially air-flown from Sabah, where she lives. She says there are too many scallops and other types of seafood there. Mum made aglio olio spaghetti with some of the scallops. But they were so good we forgot to take photos again. Aunt Veena also suggested maybe I should rename my blog to "Is There a Food Fairy." I said that was a very clever idea.

Saturday 30 January 2010 - Treatment Day 32

I made crabmeat, chicken and sweetcorn soup with dad today, using one of the recipes from Aunty Carolina's cookbooks. Mum said it was really good. I don't really like corn so I didn't eat much. But mum and dad finished it all up. We didn't even take a photo of it. The above photo was taken off the Internet.

I wanted to go out today and eat sushi. My neutrophils were ok on Thursday so mum said alright. But I wore a mask just in case. But Dr Lin said I can't eat raw food because it might give me a tummy ache so I just had rice and tempura.

My hair still looks ok, although it's been dropping a lot. Mum spent the morning picking off strands of my hair off of my pillow.

I was really tired today so I went to bed at around 6pm.

While I was asleep, mum went out to KLCC and bought me two new bottles from Mothercare:
A glass bottle wrapped in a pink silicone sleeve from Life Factory http://www.thehipinfant.com.au/proddetail.php?prod=LFWGGBP-9oz
and a BPA-free polypropylene one from MAM http://www.madeformums.com/reviews/feeding/bottles-and-accessories/mam-bpa-free-baby-bottle-330ml/171.html

She also got me some more children's cookbooks from Mothercare and Kinokuniya.

Friday 29 January 2010 - Treatment Day 31

Today was a really nice day. I had a lot of visitors and I really enjoyed myself.

Uncle Kumar (mum's friend) came in the morning. He'd bought me 12 of my favourite Big Apple plain glazed donuts. I ate one straight away. He also bought me a book to read with mum. It was Harry Potter and the Philosopher's Stone. He also got me two new DVDs, 101 Dalmatians and The Incredibles.

Dad came home for lunch, I had asked him to get me some popcorn chicken.

Aunty Carolina, my cousin Aliya's mum, came in the afternoon to entertain me and cook for me while mum worked on her computer and made phone calls. Aunty brought lots of stuff with her. She brought lots of groceries -- milk, bread, french loaf, apples, spaghetti, chocolate, cheese and lots more -- and ingredients to bake with.

We made chocolate muffins and cookies together in the kitchen. That was really fun. It was probably the second time I had been in the kitchen since I became ill. I get too tired to go upstairs and downstairs. But I like cooking now, and I really really really enjoy looking at recipe books. So I said ok when aunty asked if I wanted to come downstairs and bake stuff with her. I mixed all the flour and everything.

After that I was really hungry, so aunty made me some spaghetti. We played a game of Operation for a while. I told her I wanted to try crab or lobster or sardines the next time she came.

After that I was tired. So I had a lie down while aunty read some of my books with me. I said I really liked reading cookbooks now, so she said she'll go home and pass me some of hers.

Grandma and grandad came after that. Grandma made me sausages and peanut butter on white bread with chocolate rice sprinkled on top. I like chocolate rice. Tok Mummy used to make it for me in school all the time. She'd given grandma some of her chocolate rice for me, because I had asked for it the other day. Dad had pizza but I didn't feel like eating that.

I had fish and chips for dinner. After dad came home, he went to aunty Carolina's house to collect her cookbooks. I spent all night looking at all the pictures of the food. I told mum I wanted to make soup tomorrow. I said I wanted to make sweetcorn and crabmeat soup.

Thursday 28 January 2010 - Treatment Day 30

I went to hospital today, to do a 4th bone marrow biopsy, along with the aspa injection into my leg muscle. Dr Lin says this bone marrow test is very important. It will tell him how I've been responding to treatment and whether I fall into standard risk ALL, intermediate risk or high risk. If it is intermediate or high risk, the treatment will be different. He says he can't see anymore cancer cells with his naked eye but a microscope might be able to show cells which are hiding.

I didn't really want to go to hospital. I thought I only go on Tuesdays and Fridays so I wasn't ready to go today. I told mum I didn't want to sleep, or have an injection or anything. She said she would tell the nurses and Dr Lin.

Mum said I had to stop eating at 7am today because of the mini op. I had milk at 6.45am but I was really hungry after that. Dr Lin only came at 1.30pm instead of 12.30pm. If he isn't busy, sometimes he even comes in at 10 or 11am. The nurses said he had an emergency at the wards today.

In the meantime, mum and I read a book by Enid Blyton together. Dad read Princess and the Frog with me. I also watched the Princess and the Frog DVD while waiting. Dad had bought it for me last night.

My friend Sarah was having a blood transfusion, her red cells were low, at around 9. Two other babies were waiting for Dr Lin too, and they were really hungry and upset by the time he came in. When he came in, he was greeted by lots of angry screaming and crying children. He said "I wish I can cut myself into two."

He did a bone marrow test on one baby, and then he disappeared. I shouted very loudly that it was my turn now and that I only wanted it to be a short while. Then he came back and smiled and said I was really grouchy again today. I said I didn't want to sleep and he smiled. The nurses put something into my canula and I screamed I didn't want to sleep.

After I woke up, I had a McD Filet-o-fish and fries. Sarah was eating potato chips earlier, so I asked for those too. Mum went to the pharmacy at SDMC and there were a lot of BPA-free bottles, so she got one for me.

Dr Lin said I will come back on Monday for the 8-hour Cyclo chemo. He told mum that I will also have a chemo-port fitted soon. The chemo port will be put in my chest and nurses will just use it to take my blood or give me my medicine. I won't need a canula put in my hand every time now. I don't like having a canula put in my hand. It hurts. Dr Lin said I can swim with the chemo port.

On the way back, I said I wanted spaghetti from Lake Club, so dad decided we could go there. I had spaghetti, more fries and rice. Then we went home.

Dad bought mum chili crabs and butter prawns for her dinner. It was her birthday today. But she said she didn't feel like celebrating it.

Blood count:
Red cells 11.2 (13.0-18.0)
Platelets 53 (150-400)
Neutrophils 70 (40-74)

Today's bill: RM3,796.04

QOTD: "I don't want to sleep. I don't want injections. I want potato chips."

Wednesday 27 January 2010 - Treatment Day 29

I got up really early again today, at 7am, and watched Astro. I was hungry so I had some porridge which grandma made for me and some peanut butter on toast for breakfast.

I was hungry again at 10am so I asked mum to order some crispy fried chicken from McD delivery. She said I had to wait til their breakfast time was over, at 11am, because they only did breakfast-y things til then. I said OK. The McD motorbike came quite fast though. I was so hungry I ate up all the chicken. Mum was surprised.

My hair's been dropping a little so grandma decided to give me a haircut. Mum says she wants to cut her hair short too.

Aunty Jessie, aunty Liz and uncle Cheng Wee, mum's friends from work, came by to visit me during lunchtime. I was really tired and moody today so I didn't really say much. But they were really nice. Aunt Jessie bought me a huge Minnie Mouse doll. It's as big as I am. But I was too tired to thank her.

Uncle Cheng Wee also brought food from one of our favourite restaurants, Delicious. I had chicken pie. We also had spaghetti carbonara, lemon meringue tart and apple crumble.

After they left, mum had to work on her computer again and make phone calls. I got hungry again and asked grandma to make me some peanut butter and cheese sandwiches. Mum asked me to come down but I was really tired and couldn't walk back upstairs again after that.

I decided to look at pictures of food in my story books. I looked at drawings of roast chicken and fish. Mum gave me a colourful kids' recipe book by Annabel Karmel to look at. I had a lie down and looked at the nice pictures of all the yummy looking food. I never really used to enjoy eating before I became ill. Mum said something about aliens.

Grandma cooked some codfish for me, and I ate that. I was still hungry after that so I got dad to buy me some popcorn chicken after work.

I had lots of milk too. Mum had bought me some new bottles on Saturday because she said the old ones were a bit worn. But she said she found out they contained a nasty chemical called Bisphenol A, or BPA, that could cause cancer. Even if the bottles are new, they can still leach the nasty chemical into the milk, just by being washed or heated or sterilised. So now she's looking for bottles which aren't made with BPA. They can be plastic or glass. Grandma said everyone seems to be using the same bottles I do, they are quite popular. Mum found out that the bottle we use, also has a BPA-free version. She said she didn't understand why there needs to be two versions, one with a nasty cancer-causing chemical, and one without.

You can read more on BPA here:
http://www.bisphenolafree.org/

Tips on how to protect yourself from BPA (it's NOT just in baby bottles):
http://health.msn.com/health-topics/cancer/articlepage.aspx?cp-documentid=100176179

Tuesday 26 January 2010 - Treatment Day 29

I went to hospital for chemo again today, and had my vincristine and aspa. I was really hungry and had porridge for breakfast and peanut butter on white bread before we left. I was hungry again on the way to hospital so I had two pancakes, and half of grandma's filet-o-fish from McD.

Nowadays mum doesn't get tired as much having to drive me to SDMC for my chemo. Aunt Lilian's taught us a shorter way to get there from town, so it only takes 30 minutes instead of an hour.

Dr Lin came a bit late today, at around 12.30pm, so I was hungry again at around 11am. I felt like eating Burger King fries and fish burger. Grandma went out with uncle Hizwani (mum's brother). They bought me McD filet-o-fish and fries. The Burger King in Subang was closed.

Dr Lin checked my tummy today because mum told him I had a lot of red spots on it. He said my capillaries were really fragile and that could be the reason. He said it normally happens when your blood count is low, but he said my blood count was normal.

He gave my vincristine through a canula in my hand which didn't hurt. But I didn't like the aspa because it is an injection through a muscle in my leg. He said I always get grouchy when he gives me my injections.

He told mum I was in remission. But a bone marrow biopsy on Thursday would show if there were any more cancer cells hiding in my blood. He said the biopsy on Thursday was very important.

He also said that if the results from the biopsy were ok, I could do the 8-hour Cyclo chemo on Friday.

My hair seems to have started falling out a bit. There were lots of strands on the hospital pillow where I was lying down today.

Grandma and I passed the wig and hat shop on our way out and I said to her: "When my hair falls out, I want to wear a wig." She said ok.

I got bored in the car on our way back so I asked mum and grandma a lot of questions. I said I wanted to go to England when I feel better. I asked mum what it felt like when I was in her tummy. I asked what pie tasted like. I said I might want to try some.

I was really tired when we got home, so I just lay down for the rest of the day. But I had some sausages, scrambled eggs, roti canai, rice, kellogs' frosties and lots of milk.

I woke up at 2am and asked for two fried eggs without the yolks. Mum made them for me.

Blood count:
Red cells 11.2 (13.0-18.0)
Platelets 304 (150-400)
Neutrophils 45 (40-74)

QOTD: "Which one makes me feel better? The medicine or the injections? Both?? But I don't want anymore injections."

Monday 25 January 2010 - Treatment Day 28

I woke up hungry again. I woke up really early too, at 7am. I never wake up this early, usually. I'm normally late for school, which starts at 9am. I asked dad to buy me roti canai. I also asked him to buy me some popcorn chicken from KFC for my lunch. I asked mum if KFC delivered like McD but she said no. In between, I had noodles and peanut butter on white bread sprinkled with coloured rice.

Mum had to work, so besides eating a lot, I also slept quite a lot. I also went to the toilet 5 or 6 times because I ate so much. I got hungry again later and suddenly craved porridge. I never ate porridge before, because I don't like it. She made me a special porridge using the scallops aunty Veena had sent us. It was really yummy. I ate four bowls of it. Mum was surprised. We didn't take a photo of it because we ate it up so quickly even though mum made a huge pot. The above photo was taken from the Internet.

I also ate some spaghetti. I miss the spaghetti from Lake Club so I asked dad to get me some of that for dinner too.

QOTD: "I want Lake Club spaghetti. No sauce, no cheese. I want it now. But I want the porridge before the spaghetti."

"Does KFC have motorbikes? Like McD? Why not?"

Sunday 24 January 2010 - Treatment Day 27

I woke up really hungry today. I had lots of milk, noodles, peanut butter on toast and two fried eggs for breakfast. And yoghurt. And then more noodles! Then I asked dad to buy some roti canai.

Later, aunty Veena (mum's friend) sent us a super-special package from Sabah. It had frozen tiger prawns, scallops and a bag of Hershey's kisses in it. She heard that I felt like eating prawn nowadays so she sent some over.

Saturday 23 January 2010 - Treatment Day 26

I went to my cousin Aliya's house today because she had a birthday party. But dad took me there before all the other kids arrived because he didn't want me to catch any germs.

I was a bit moody and tired so I didn't really play with my cousins much. And I ate a lot.

I also went to Mia's birthday party. It was a Willy Wonka-themed party, with a candy buffet. I had really wanted to go but when I got there I wanted to go home. I had a bit of fried rice and I picked out all the egg and vegetables. I also had some sticky rice. Then I had some burger king nuggets and fries. Then I said I wanted to go home now.

My birthday is coming up next month, mum said. She asked if I wanted to throw a party. I said yes but only if she makes sure that no sick people come to the party because otherwise I'd catch their germs. She smiled and said of course. I said I wanted a chocolate fountain at my party.

QOTD: "If sick people come to my party, then I will get sick."

Friday 22 January 2010 - Treatment Day 25

I went to hospital today with mum and grandma for my aspa injection. I hate having injections so I told mum I didn't want any today.

I was hungry so I ate two pancakes while waiting for Dr Lin. I told mum I wanted to go home in ten minutes. But we had to wait a long time.

Sarah was having a really big chemo called Cyclo. It takes 8 hours so she was already at the chemo daycare in her pyjamas, and she was hooked up to the Cyclo IV drip when we got there. We have to do Cyclo twice. She was doing her second one already. I haven't done mine yet. Aunty Vanessa told mum that our hair falls out and we get sick after having the Cyclo.

After Dr Lin came, and checked on Sarah and another girl, he went off. I screamed and said it was my turn. I was impatient to go home. I asked mum if he'd forgotten it was my turn. But she said he was just at his desk, writing up the notes for the other two girls.

So then he came and gave me my aspa. The nurses put the special Emla cream on my leg but they forgot to spray on some special numbing spray too. It really hurt. The aspa goes into my leg muscle. He smiled at mum and said I was being grouchy again.

He said I was doing really well. He said that out of 400 patients he had kept track of, only 2 had relapsed and 1 was ok now. He said that he couldn't see any more bad cancer cells in my bone marrow.

Mum asked if I could go to birthday parties this weekend. He said I could, but not to hug or kiss anyone in case they were sick.

After that I was hungry again, so mum bought me some KFC on the way back.

When we got home, mum had to work on her computer. Grandma had to go home because grandad had had to go to a heart hospital because he wasn't feeling well either.

Aunty Lydia came by after work and brought some cookies she had made with a special chocolate chip from Godiva. She's really good at baking stuff. She owns a cookie place at the Petronas Twin Towers. I didn't feel like eating them though. I had noodles and two fried eggs without the yolks. Mum finished all the cookies and said they were absolutely heavenly.

I was really hungry after that and I kept asking mum to make me some food. She told me to go to sleep instead because she had to work.

Today's bill: RM619.54

QOTD: "Can you tell the nurses that I only want to be in there for ten minutes. Ten minutes only. OK?!!"

Thursday 21 January 2010 - Treatment Day 24

I was really really really hungry today. I made mum go upstairs and downstairs the whole day, bringing me food. She made noodles and french toast for my breakfast, and then started working on her laptop and making phone calls again.

Then I wanted Wendy's crispy chicken burger and fries. And KFC's popcorn chicken. So I called grandma and asked her to buy those for my lunch. She was happy I called her. I used to call her and mum all the time. I could remember everyone's numbers by heart from when I was 3. I always used to call mum when she was in the office working. But I haven't been in the mood to call or talk to anyone since I got ill, until today.

I asked for some iced lemon tea, so Mum made me some using fresh lemons grandma had brought.

After lunch, I told mum I wanted to eat steak and prawns. I've never really wanted to eat those before. I called dad too, and asked him to get those for me. He got uncle Izayn (his brother) to deliver those to me for dinner. Mum made me eat those at the kitchen table downstairs. I haven't been there since I got ill.

I decided I didn't like steak but I ate a lot of the prawn. I was still hungry after that and ate two fried eggs, but I didn't eat the yellow parts. I also asked dad to buy me some croissants but he bought me the wrong kind. I shouted at him and said I wanted the crunchy kind.

I got hungry again while waiting for dinner, and asked mum to make me some sausages. I also ate lots of bread and butter. I also had noodles again.

Then mum decided I needed to take a shower, because I haven't had one in a while. Especially after I got sick the other day. She said my hair smelt like sick. I really really don't like taking showers. And I get really tired with the chemo, so I need to sit on a chair every time I have a shower. I get tired standing up a lot. I have been feeling really tired since I got leukaemia. I just lie down a lot or sit on the sofa the whole day, watching telly. I get tired if I try to go downstairs.

Mum says I have invites to 2 birthday parties this weekend. One is for Mia, who's having a Willy Wonka-themed party with a candy buffet, and one is for my cousin Aliya. Mum asked if I wanted to go, but I said I didn't know. I usually like birthday parties. I like getting party packs too.

After dinner I was hungry again, so I called grandma to ask if she could buy me some more popcorn chicken on her way to my house. She is staying the night because she is going to hospital with me tomorrow. She said she was nearly here already so dad went out to buy me some instead. I was really hungry so mum made me noodles again while I waited for dad.

Wednesday 20 January 2010 - Treatment Day 23

I was up all night with a bad tummy. I was sick and doing lots of runny poos between 2am and 7am. Mum called the hospital at 8.30am but they said not to worry if I'd stopped being sick, and if I didn't have a fever.

I was a bit better after 9am, and managed to eat some noodles and lots of cheese toasties and peanut butter on toast. In the beginning I still had a bad tummy and wanted to make myself sick so that the pain would stop but mum wouldn't let me. She said she needed to know if I was making myself sick or if it was doing that by itself. I did a small runny poo at 4pm.

Other than my upset tummy, I was bored, so I started watching the new dvds I got from aunty Carol and uncle Sean.

I told mum I really wanted to eat Wendy's crispy chicken burger and fries. Before I became ill, I never even liked burgers. But the steroids are making me crave all sorts of food. I wanted grandma to buy it for me and send it over but she was waiting for the repairmen to fix her gate. Dad bought it for me on his way home from work.

Tuesday 19 January 2010 - Treatment Day 22

Today was another big chemo day. But I'm not having a bone marrow test done, just the IT injection into my spine, the vincristine drug given intravenously through a canula into my hand, and the aspa injection into my leg.

Some of you have asked how the chemo is done. Basically, all of the above are part of the chemo, as well as the Dexa tablets I have to take. They all help to kill the cancer cells in my body. The IT injection helps to kill the cancer cells in my brain and spine. My lumbar puncture test results last month didn't show any, but the IT is usually given anyway just in case they are hiding.

The nurses had called mum yesterday, saying Dr Lin would come in at 9am instead of at 12pm like he usually does. So I had to stop eating from 4am for the mini-op, and we had to leave the house early.

I drank a lot of milk at 3am, but I was still really hungry by the time we got to SDMC. I was really upset that I couldn't eat anything. I was starving. I still hate needles too and I cried when the nurses put the canula into my hand again. The first nurse tried to put it in my left hand but after she put in the canula, she couldn't get any blood. She moved the needle around inside my hand a lot. It hurt.

After 5 minutes, they had to take it out and try my right hand. I wasn't very happy.

Dr Lin only came in around 10.30am, so mum and I watched Toy Story while we waited. Then he came in and so I had my chemo done. I heard him ask the nurses for a long yellow and a short white or something, and I told him angrily I only wanted the procedure to take a "short while." He laughed.

He asked mum if I was really grouchy now after taking the Dexa, and mum said yes. He told her not to worry and that it would only be temporary and that I'd be my usual self after I stop taking it.

He was really cheerful today and told mum that I was doing very well. He said my blood counts were "almost normal" today. He also talked a little bit more about my cytogenetics results from Singapore. He said they showed "hyperdiploid" leukaemia and he told mum that those with "hyperdiploid" tended to do very well. Mum was relieved.

She also asked him to check my tummy. It was really really big yesterday. Mum and dad thought it looked as if it could explode. She asked if it was normal. He had a look, and said it was big because of the steroids.

My chemo was done by 11.30am but I slept until about 1.00pm. I can sleep better now even with the ketamine, and the "imaginations" don't bother me anymore. The nurses kept me in hospital until about 2.30pm to make sure I was ok though. I ate half a packet of rice, and I didn't get sick, because they had given me the anti-sick medicine.

Aunty Vanessa was also there, with Sarah. She'd bought some Chlorophyll and Propolis supplements for me to try, because she said they really helped Sarah. Sarah's hair is all gone now. She wears a hat to chemo. I told mum I wanted to wear a snow-cap to chemo when my hair falls out.

Grandma made friends with an old lady who was also having chemo done. She told grandma that she had been diagnosed with cancer in September last year and went to another hospital called a government hospital. She said that they kept delaying treatment and now she is having stage 4 cancer. Now she has moved to SDMC, which is a private hospital.

Mum stopped by Jusco on the way back. Grandma and I waited in the car while mum bought me some more rice and lots of yoghurt for the house. I've been eating a lot of yoghurt because mum puts my Dexa in it. I also had some fish crackers and chrysanthemum tea in the car.

When we got back, I felt really happy and I was my usual talkative self. I asked mum a lot of questions. I asked her if we could go on the cable car ride in Genting again when I feel better. She said we could also go to the new Universal Studios theme park in Singapore. It's opening soon. I also asked if Dr Lin was the best doctor ever, and who else had had to do chemo like me. I asked mum if she had ever had to do it. She said no.

I was really tired after the big chemo, so I went to bed early, around 6pm. Dad had to wake me up at 10pm to give me my last dose of Dexa for the day.


Weight: 18.4kg (+1.6kg)


Blood count:
Platelets 98 (150-400)
Neutrophils 52 (40-74)


Today's bill: RM2,409.34


QOTD: "I don't like hospital day."

Monday 18 January 2010 - Treatment Day 21

I got a lovely new toy today, from Aunty Carol (mum's friend). She bought me three new My Lil Ponies: Pinkie Pie, StarSong and Scootaloo. Aunty Carol didn't know their names, but I showed her which one was Pinkie Pie. They came with a cake and teacups. The ponies had no hair but came with detachable hairstyles. Mum said the ponies had had to do chemo too. I was really pleased to get the ponies, but I was a bit shy when aunty Carol tried to talk to me, and I just smiled.

Aunty Carol brought me some new dvds too -- Toy Story 1, 2 and 3, Merry Madagascar, A Bug's Life, 9, and Paulie. She also bought me some organic noodles, raisins and alphabets for soup. Mum had told her I liked noodles a lot. She also brought mum 3 books and a yummy breakfast of tosai and chicken varuval. Mum said it was the best breakfast she'd had this year. Aunty Carol asked if I wanted some but I said I just wanted keropok lekor. She said she liked them too and asked if she could share some of mine. I didn't say.

I had two pancakes for breakfast, and some of the organic noodles for lunch. I told mum it didn't taste like the usual noodles she makes. She told me these were better for me. She also fried some keropok lekor for me.

Today was mum's first day back at work after I became ill. Because I have leukaemia, she'll be working from home now. She said her bosses have been very flexible. She had to make some phone calls today and work on her computer. But she was a bit busy with me too, I went to the bathroom 5 times and was constantly hungry. She was in the kitchen a lot.

Later grandma came to stay the night. I asked her to get me some KFC. I also got another dvd, this time from uncle Sean (mum's friend). It was Antz.

QOTD: "What will happen if huge burgers fall out of the sky here (like in Cloudy With A Chance Of Meatballs)? Will the people in The Biggest Loser Asia eat them?"

Sunday 17 January 2010 - Treatment Day 20

I was feeling a bit tired and grouchy today. Watched Fairly OddParents on Astro the whole day, and dad fried lots of keropok lekor for me.

Baba (dad's grandma) came to visit. My grandma came in the afternoon. I was really tired so I took a nap. I woke up later and had some KFC again.

Mum had to go and get a tetanus shot cos she was taking out a rusty shower rack and poked herself with it. Her last tetanus shot was a long time ago. The doctor wasn't in the clinic when she went so she had to go again at 1am.

She also threw out a 5-year-old kettle that looked rusty inside too. She says she needs to get a new kettle and rice cooker. She's thinking of getting that eco-friendly Green Pan that keeps being shown on Astro. Grandma brought some stainless steel pots and pans for us to use.

Saturday 16 January 2010 - Treatment Day 19

I woke up 3 to 4 times during the night to poo. Mum had to help me wash myself. She says I've been poo-ing a lot since I started taking the steroids. Before I went to hospital, I was constipated for a month.

I was really hungry and cranky today. I suddenly had this craving for keropok lekor, so dad bought some and fried it at home.

I have been taking my Dexa better these days. I still hate it, and I still cry everytime mum or dad give it to me, but I can finish it in five minutes. I used to take a whole day to finish one dose. I have to take it twice a day.

I hate taking a shower though, because I'm worried the water will go into the places where I've had an injection or a canula put in. When I have to take a shower, especially on bone marrow test days when I have to be clean, mum says all the neighbours can hear me crying.

I was feeling rather moody, and didn't feel like talking today. I went to bed before bedtime and just lay there and didn't say anything. Dad got a bit worried. I heard him asking mum if this was normal. Later he bought me some KFC, which I ate.

I haven't eaten any chicken since I started my chemo. I'm not supposed to eat it because the other parents at the chemo daycare told mum that when their kids ate chicken while they were having chemo, they had a high fever and had to stay in hospital for 10 days.

Mum doesn't really know whether to believe it or not. Aunty Lilian would call it hogwash or something like that. Dr Lin says I can eat anything. But grandma says chicken is full of antibiotics and other nasty things anyway.

The other parents also said I should drink barley water, coconut juice and chrysanthemum tea to make me feel cooler. They said the chemo would make me feel very hot inside. I don't like barley water or coconut juice.

Later, I watched Coraline twice before going to sleep.

Friday 15 January 2010 - Treatment Day 18

I went for my aspa injection in my leg today, and I also had a blood transfusion, because my blood count was a little low on Tuesday. The transfusion took three hours. I didn't want to have any blood put in me today, or any injections, so I was rather upset.

I was really hungry though, and had two pancakes from McDonalds and some Ribena while having the transfusion. Mum and I watched Up and Planet 51 on my dvd player. Grandma read some books with me.

Dr Lin came in early, at around 10.30am. He told mum that he was very happy with my progress. He said he couldn't see any more cancer cells in my bone marrow sample. My platelets had also gone up a lot, and my neutrophils were also improving. Mum was both pleased and surprised.

He also said that my cytogenetics results were back from Singapore, and that I had 50 chromosomes and that this was "good."

But he said that although we had zapped all the bad cells, my bone marrow was a bit slow to make new good ones and he couldn't see any in my bone marrow. Mum asked if she could do anything to help speed up the process but he said it was alright. He said he expects my bone marrow to be better by next week.

He gave me some Aloclair gel for some sores and ulcers I had on my mouth because of the chemo.

We went home at 2.30pm. Later I had noodles for tea and spaghetti for dinner.

Blood count:

Platelets 79 (150-400)

Neutrophils 30 (40-74)

Today's bill: RM1,079.84

Thursday 14 January 2010 - Treatment Day 17

Mum got a bit of a scare today because there was blood on the bandage on my back. She wasn't sure if it meant my BM biopsy site was still bleeding. The nurses had said that my platelets were low and if I was still bleeding at home, even after the site was pressed for 10 minutes, mum should bring me back to hospital. I wouldn't let her take my bandages off. But the blood was already dried so she said maybe it was ok.

Aunty Lilian came to visit, and brought mum some sushi, which she hasn't had in a while because we've been stuck at home since I became ill. Sushi rice is my favourite, so I ate that. I was really hungry today, I also had two packets of noodles, some more rice, and some fish crackers. I also had a big bag of crisps and lots and lots of apple juice and milk.

Since Tuesday mum had switched my Dexa from syrup to tablets, and I've been taking my Dexa a lot faster. I eat it mixed with yoghurt or rice and it takes a few minutes, instead of several hours. Mum and dad are pleased.

Aunty Lilian also brought some magic vinegar powder that'll make mum's home-cooked rice taste just like Japanese sushi rice. Mum also got her to buy some more Dettol wipes (as she keeps saying, we never seem to have enough!) and some canned coconut juice. Mum had also asked her to get the first Harry Potter book for me but she said Kinokuniya didn't have it today. She also checked Isetan and Toys R Us for My Lil Pony outfits but she said they didn't have any.

Today was a nice day for mum because dad came home from work bringing mum's favourite steak from Victoria Station.

Grandma stayed the night because she will be going to hospital with me tomorrow for my aspa injection and blood transfusion. She brought a ruby bracelet and a ruby anklet, which she'd had made especially for me. They were pretty and looked just like her ruby necklace.

QOTD: "I want to eat something but I don't know what!"

Wednesday 13 January 2010 - Treatment Day 16

Mum said our plane to London leaves today. Me, mum and grandma were supposed to go to London and Paris Disneyland and Europe. But mum had to cancel the tickets after I got leukaemia. She said it was a pity because she had got the timing just right and it was snowing in London. She knows how much I'd wanted to play with real snow. I don't like playing with fake snow like in Genting and other fake snow places. She said we can go to London when I get better. (The above image is from Telegraph.co.uk)

Mum couldn't get her money back from the airline though, so she's trying to sell off her airline credits. They are worth RM5,734.

Aunty Eve, who lives in London, said that her new baby, Noah, can't wait to see me. Uncle Shannon, who is studying there, tried to make me feel better by saying that the snow wasn't very nice. He said it was so cold his legs were itching and he was slipping and sliding on the ice.

I was really bored today so I asked mum to buy me a new toy. I said I wanted a My Lil Pony house or a new outfit for my ponies. Grandma and grandad came so mum went to the supermarket to get groceries. She didn't go to Toys R Us so I didn't get a new toy. She bought me Angelina Ballerina and Pinocchio dvds, some stickers, a new writing book and a pretty pink and white washable mask to wear when I go to hospital.

She also bought me a new Spongebob toothbrush which whirrs when you press a button. I said Marisa, my friend in school, also has the same toothbrush. Dr Lin says I have to take good care of my mouth and teeth when I'm having chemo to prevent infections. I don't really like to brush my teeth much except when I'm at school, because Tok Mummy makes us brush our teeth after every meal in school.

Mum also bought me some manuka honey which Aunty Pam said was good. Aunty Pam's son has leukaemia too and she said the honey boosts the immunity system. I don't like to eat beef or vegetables or fruit except for apples and watermelons, so mum said I might as well try stuff called supplements.

QOTD: "I forgot to drink my Vitagen and now it's not cold anymore."

Tuesday 12 January - Treatment Day 15

I had my 3rd bone marrow biopsy today, along with Vincristine and the injection called Asparaginase. I also had the IT.

Dr Lin came in early today, around 11.30am so I was done by about 12.30pm. But mum had to wait until I woke up, which was around 1.30pm to 2pm. The nurses also kept me til about 3pm to make sure I didn't get sick. I was super hungry and ate a packet of rice with grandma. This time I didn't get sick because the nurses had given me some anti-sick medicine through my canula.

I cried the whole morning from 9am to 11.30am, because I was hungry and I couldn't eat because of the mini-op. I was also frightened of having yet another canula put into my hand. I told mum I didn't like it when the nurses had to take it out at the end of the day because I was scared I wouldn't stop bleeding.

Aunty Nora said she could hear me screaming from the corridor outside the chemo daycare unit. Everyone tried to comfort me but I was quite upset. I didn't want to play with my DS Lite, nor my Fairy Snap cards. Mum showed me a pretty Cinamoroll notepad and stickers that Aunty Elisia had posted to me some time ago and I played with that for a bit.

The nurses asked mum if my personality had changed after taking the steroids. She said I had become very irritable and cranky. The nurses said this was because of the steroids. They said some kids had even pushed their baby brothers or sisters down the stairs. They told mum to tell Dr Lin if my behaviour changed a lot.

My blood counts were low today, and I needed a blood transfusion the next time I come in, which is Friday. Every time the blood count is below 11, he says we need a blood transfusion. I didn't want my canula taken out again, so the nurse put a special bandage around it and said I could keep it until Friday. I was really happy. I got hungry on the way back so mum stopped by the McDonald's drive-through and got me my favourite fries. When we got home, mum said she was very tired and she went to sleep straightaway.

Grandma decided to stay the night. She said I was playing nicely at home after the chemo and that I was almost like my old self again.


Weight: 16.8kg (-1kg)


Blood count:
Red cells 10.8
Neutrophils 0.21
Platelets 25

Today's bill:
RM4,840.64

QOTD: "I DON'T WANT MY HAND TO BLEED AGAIN!!!"

Monday 11 January 2010 - Treatment Day 14

Mum woke up with her head spinning today. She was sick for a bit in the bathroom. She made two slices of french toast for me, and had a lie down and felt a bit better after.

She says she is thinking of getting me some audio books to listen to because most of the time I feel too tired or sicky to read books.

Here's one good site as recommended by one of mum's friends on the Internet:

http://www.audible.co.uk/aduk/site/audibleSearch/searchResults.jsp?BV_SessionID=@@@@0110752908.1263357154@@@@&BV_EngineID=cccgadejflglfgdcefecekjdfikdfij.0&Sc=-35937&N=1944&Np=-24041&Ns=P_Release_Date%7c1

Mum says she needs to get a new charger for her iPod though.

I keep asking mum what my children will look like when I'm grown up. I also asked her what her mum said to her when she was younger.

Sunday 10 January 2010 - Treatment Day 13

Dad bought me a new toy today to play with in hospital so I wouldn't get so bored while having my chemo done. Apart from being sick, being bored is one of the worst things.

It's a Nintendo DS Lite, a handheld games console. Dad had 30 games put in, from Madagascar to Island Princess to Bratz and Hannah Montana. And it's much smaller and lighter than a dvd player, so it's much easier to take to hospital.

I played with it while we were waiting at the A&E at SDMC. We waited for two and a half hours. There were so many sick people there. Mum got worried that I would be exposed to too many germs. Mum and dad took me because I have been having a bit of blood in my stools.

But the paed who saw me, called up Dr Lin, who said not to worry. He said to bring me in if I didn't stop bleeding, or had a fever or was vomiting. He gave me Duphalac.

Aunty Ranjeetha dropped by when we got home. She bought six yummy cupcakes from mum's favourite Bisou cafe in Bangsar Village. Mum said it was the best thing she had eaten all year. Mum and I have not been to the shops since I fell ill.

Aunty Ranjeetha also got me some Dettol wipes and two new dvds! Mum says we can never have too many Dettol wipes. I was really pleased with the dvds. Aunty Ranjeetha got me another copy of Cloudy With a Chance of Meatballs because we'd lost ours in all the commotion rushing in between hospitals. She also got me Coraline which I haven't seen.

Saturday 9 January 2010 - Treatment Day 12

Mum made french toast, thanks to aunty Lydia craving them today. I don't like eggs now that I'm on steroids but I really liked the french toast. I had three helpings. Mum was amazed. Mum and dad had bananas and maple syrup with theirs but I like mine plain. Can't stop eating again today. (Above image is from veganyumyum.com)

Friday 8 January 2010 - Treatment Day 11

Mum took me for my aspa injection today, and aunty Lina (mum's sister) drove us to SDMC. I was hungry so we stopped at a McDonalds for pancakes and I ate them in the car. I didn't have to fast today as I wasn't having a mini-op.

We didn't have to wait for so long, because Dr Lin doesn't have to see other kids in his clinic in the morning. There were also fewer kids in chemo on Fridays. It was all over quite quickly and we were done by lunchtime. Mum also got to chat longer with him.

He said I was making good progress and that my bone marrow had improved. He also said I could be in remission in another two weeks. Mum was surprised. But he said that I would still need to continue treatment for the whole year to make sure we killed all the cancer cells.

On our way out, mum spotted a shop outside the chemo daycare unit that sells wigs and scarves and things for chemo patients. She asked the shop lady if they sold wigs for children. The lady said they didn't, but told mum to try and check out a shop in Sungei Wang called Scarlet in case they did.

I was hungry again on our way back. Mum stopped by Bangsar to get nasi lemak and new dvds for me but both shops were closed. She was rather annoyed, as it was already 1pm.

Mum called Ms Esther, my violin teacher, to tell her I was ill. Mum said I could maybe go for lessons again in 3 months if I feel a bit stronger.

When we got home, I told mum I couldn't swallow. She asked if I had a sore throat. I said I wasn't sure. She called the nurses at the chemo daycare but they said a sore throat or difficulty in swallowing shouldn't be side effects of the aspa injection. They told her to give me salt water to gargle with.

Dad got me the Alvin and The Chipmunks 2: The Squeakquel dvd today. It wasn't very clear but it was watchable. Mum said it was extra special because it had audience laughter.

Today's bill: RM202.54

Thursday 7 January 2010 -Treatment Day 10

Grandma bought me some strawberry-flavoured lip balm today for my cracked bleeding lips. I don't like wearing lip balm but mum said I needed it. She used to buy me a lot of fruit flavoured lip balms from Body Shop and other shops but I still didn't like them that much.

She also made me drink lots more water. I already drink a lot of water, especially when I am taking my medicine.

Wednesday 6 January 2010 - Treatment Day 9

My lips turned black today. Mum says it is because of the chemo. Grandma and grandad came to visit me. Grandma brought me my favourite croissants, donuts and french fries. Dr Lin said I could eat anything.

I do almost nothing but watch tv all day. It keeps playing this song by Miranda Cosgrove:

http://vids.myspace.com/index.cfm?fuseaction=vids.individual&videoid=40104358

I also eat a lot nowadays because of the steroids. But I am taking hours and hours just to finish one dose. And I still get tired a lot, so I am taking a lot of naps.

Tuesday 5 January 2010 - Treatment Day 8

Today was a really long day. I had my 2nd bone marrow biopsy done to see if I'd responded well to the prednisolone.

Mum and dad took me to the chemo daycare centre at SDMC. I was told by the nurses at the ward to stop eating from 5am because my tummy needed to be empty for 5 hours before the mini-op.

I was really hungry by the time we got to hospital at 9.30am. But then the nurses at chemo daycare said next time I can still eat until 7am, because Dr Lin only comes in around noon. I had yet another canula put into my hand, this time my right one. I hate it when they have to take it out when I go home.

We played what felt like several million rounds of Fairy Snap to pass the time. I had also brought my dvd player and some sticker and colouring books.

Mum and dad chatted to some of the other parents. There were a few other sick children in the chemo daycare. The room had 5 beds and one telly. It was a bit noisy, with people talking and babies crying. I told mum I didn't want this room and I wanted the other room we had the last time.

Then Dr Lin finally came. Mum and dad were happy to meet him. He showed them my treatment protocol which will run for a year. Mum and dad will have to bring me in to SDMC every Tuesday and Friday for the first few weeks.

After 36 days, I will then have an injection called Ara-C 4 times a week for 4 weeks.

I will need to do a bone marrow (BM) biopsy 4 times in the next two months. This will be on Tuesdays. After that it will be less frequent.

Before I start the Ara-C, I will be given a drug called Vincristine (VCR) on Tuesdays while I sleep. Dr Lin will also give me an injection in my leg called Asparaginase. VCR and Aspa are part of the chemo, to kill the bad cancer cells. He will also give me the chemo injection into my spine called Intrathecal Methotrexate (IT). I will also have to have the aspa injection every Friday as well.

This time I slept a bit better after the BM biopsy. I still saw some "imaginations" but I did my best to sleep. Dad went out for lunch and tea while mum waited with me. When I woke up, I remembered from the chemo book that chemo causes your hair to fall out so I quickly touched my head to see if my hair was still there. It was.

Dr Lin gave me a new medicine called Dexamethasone to take home. I have to take this twice a day, and is part of the chemo. Dr Lin had prescribed me tablets but mum and dad weren't sure if I would take those, so they asked for the syrup version.

When I woke up, I was super hungry. Dad had to buy a loaf of bread. I ate 4 slices. On the way back, we stopped at a McDonalds drive-through and I had two orders of french fries and a Ribena. I got sick in the car while eating. Mum stopped to get me some croissants at a bakery but they didn't have my favourite plain ones, only sausage and chocolate.

She also stopped at an opticians to get my glass frames tightened. I waited in the car because mum didn't want me exposed to any germs.

When we got home, I was tired again, so I went to bed. Mum checked my temperature every hour, because Dr Lin had said to bring me to hospital if I had a fever of 38 degrees Celsius and above, or was bleeding. She said my hands and body felt hot, probably because of the chemo, but I didn't have a fever.

Blood Count:

Platelets 28 (Normal 150-400)

Neutrophils 7 (Normal 40-74)

Lymphocytes: 89 (Normal: 20-45)

Today's bill: RM4,640.55

Monday 4 January 2010 - Treatment Day 7

Mum found a cool book on leukaemia and chemo for kids on the Internet. It was written by a girl who had leukaemia, and her mum. We read it together to help prepare me for tomorrow when I start chemo. It helped me understand what my red blood and white cells and platelets do. It also taught me about chemo and what it does to cancer cells and the body.

You can read the book here:

http://www.chemo-to-the-rescue.com/

Mum also called my principal, Tok Mummy. Tok Mummy asked if she could visit me. She said she would also like to send me books and work, so that I wouldn't get bored.

Grandma and grandad came, bringing my favourite croissants. Grandma also brought some barley to make a barley drink.

Aunty Lilian came and brought lots of Vitagen drinks and my favourite Loacker biscuits. She also bought a new card game from ELC for me to play while waiting in hospital. Mum had also asked her to get some dried chrysanthemum flowers for tea.

Dad and some of his friends went to SDMC to donate blood and platelets to replace the ones that I had taken last week. Uncle Chan also donated some blood on his way to work. Thanks everyone! xoxo

Sunday 3 January 2010 - Treatment Day 6

I had a nice time relaxing at home. Mum says I can't really go anywhere because my immunity is low, so I'm just playing with my toys, or the Wii or watching dvds. I watched a lot of Pucca on telly today.

I've been eating a lot since I started taking the medicines, which are called steroids. They make me hungry and want to eat all the time. Dr Choy says I have to eat fresh clean food because dirty food will give me an infection. Mum says her rice cooker, pots and pans have never been so busy. Mum says the government should give money to cancer patients who have to take steroids because she has to buy so much food for me. She also said I have become super irritable and cranky because of the steroids.

I got bored, so I asked Omar and Emma to come over to play. We played with my electric keyboard and my guitar. I got angry with them when they weren't doing something properly. Aunty Lina said I almost sounded like the old me again.

Quote Of The Day: "You're not doing it properly!!!"

Saturday 2 January 2010 - Treatment Day 5

We can finally go home today. After waking up in pain many times during the night, lots of being poked and prodded at with needles, and me throwing up countless times during the day and night, we can finally leave. Mum said it felt as exciting as escaping from prison. We have to come back on Tuesday to meet Dr Lin and start chemo.

Before we went home, dad had to find a few blood donors to replace the platelets that I had taken. The nurse said the donor must be a man. Dad's brother had come to donate his platelets, but they said he couldn't because he had asthma. Dad tried to donate but they said his blood vessels were not big enough to donate platelets.

So mum and dad called everyone they knew. But the blood lab closed at 12.30pm today so they said for donors to come on Monday.

I hated it when the nurse took my canula out before I went home. It hurt a lot. But I was happy to go home and watch all my favourite channels again, instead of just the Disney channel.

Most of mum's plants had died though, because we had been away for so long. She said she didn't mind, as long as I was ok.

Today's bill: RM11,368.79

Friday 1 January 2010 - Treatment Day 4

All the nurses wished me and mum a Happy New Year. Mum said it didn't feel like one.

A lady from the blood lab came to take my blood, but this time, she took it from my thumb, because it was just to see my platelet count, not a complete blood count. It only hurt a little bit.

Mum and dad were a bit worried because my tummy seemed to be getting bigger and bigger. It looked like it would explode. But Dr Choy said it was because the leukaemia was making my liver a lot bigger than usual.

He came in twice to see me, even though it was a public holiday. He got angry in the morning after mum said I hadn't been finishing my medicines. He even got angry at the nurses, and they ran away and never came back. He said something about making sure you kill the robber when you hit him.

Dad went for Friday prayers. Grandma came with aunty Lina. Mum went downstairs to the hospital library to look for some books on leukaemia. It was her first time touring the hospital. She said there were shops selling clothes, books and medicines. Some of the books on chemo said that patients should not come into contact with animals and their poo. So mum said dad will have to send our cats to mum's place while we look for new families for them.

Aunty Adeline came in the evening. She brought masks and Dettol wipes and also my favourite Big Apple glazed donuts. I don't like flavoured donuts. I just like them plain or glazed. She

helped colour my Charlie and Lola colouring book with me while mum finally got to finish a cup of tea. She says she has not had time to finish an entire cup of tea since we've been in hospital, she's been that busy.

I took 2 to 3 hours to finish one dose of medicine today. I had a bad headache in the morning and mum and dad had to massage my head. I threw up 3 times. I needed to have my sheets and pyjamas changed a few times during the night too.

Thursday 31 December 2009 - Treatment Day 3

It is the last day of the year. One of the nurses said that if my room faced Sunway Lagoon, we would be able to see the fireworks at midnight. But my room doesn't, and I am on an IV drip so I can't move about.

The man from the blood lab came again and put another needle into my arm. I don't like him very much. He says all the children in hospital don't like him at all. Mum laughed.

I had to have a platelet transfusion today, because my count was low. Mum heard the fireworks later, she said it went on for a good 15 to 20 minutes.

Grandma came with two of her best friends. Aunty Debbie and uncle Chan (mum's friends) also came for a bit. They brought me some of my favourite chicken from KFC. They talked to mum downstairs.

It was the first time mum had left the hospital room since Monday. She said it was ironic that the first time she stepped out of the hospital room, a sick boy sneezed on her. She took a hot shower.


I just watched more telly the whole day. They kept showing High School Musical. I got bored.

Since I started taking the steroids, I have stopped liking chocolate, and have started craving salty foods instead.

The nice nurse who helped carry our luggage on the first day gave me a sheet of Disney Princess stickers.

Wednesday 30 December 2009 - Treatment Day 2

Watched a lot of the Disney channel today. There wasn't much else to do. I couldn't really go out, and neither could mum. Mum helped me make a thank you card for Dr Iean and the nurses at Gleneagles for taking such good care of me. Grandma helped to post it.

Dad went out to do the laundry. Mum said she wished there was a launderette in the hospital. There is one across the road, but it's still a bit far. She also wishes there was a hair salon like in Gleneagles. If she designed a hospital, she would also make sure there was a spa with room service, she said.

A man from the blood lab came in early this morning before I had time to eat my breakfast, and took my blood for a blood test. He put a needle in my arm, and it hurt a lot.

Dr Choy came in to see me in the morning and in the afternoon. He told mum that the bone marrow test confirmed it was leukaemia. He also said it was Acute Lymphoblastic Leukaemia or ALL for short. Dr Iean had told mum that that was the "best" type of leukaemia, and that it was 90 per cent treatable. We won't know whether it is low-risk, intermediate or high-risk until next month, he said. That part -- cytogenetics -- is sent to Singapore. He said that the lumbar puncture also didn't show any cancer cells in my brain or spine.

Mum asked him if I could go back to school and he said it wasn't advisable due to my immunity being so low. He said she could also chat to the other mums whose kids have leukaemia. Mum met Aunty Vanessa, whose 3-year-old daughter Sarah, was diagnosed with ALL one month ago. She was very nice and said mum could talk to her anytime.

In the meantime, I needed a red cell transfusion today, Dr Choy said my blood counts were low. I was also put on fluids through an IV in my canula. I needed to go to the toilet a lot.

The nurses also helped mum to give me my medicine. Three of them came into the room, and mixed the medicine syrup with some Vitagen and made sure I drank all of it. It took me 45 minutes. There wasn't even very much medicine but I really didn't like it. With a lot of cheering and clapping though, somehow I managed to drink it.

Dr Choy told mum that some of the medicine I have to take will make me eat a lot. She said that was good, because I don't really eat much at all. She says I am a very picky eater indeed. He said that my face would also puff up due to the steroids which I have to take. But once I stop taking them, I'll go back to my usual self again.

I also got to move to a quieter and nicer room today too. It's at the back, and right next to the pantry, which is handy for mum. It also faces a nice rooftop garden. Plus the toilet and sink aren't drippy all the time. But the tv wasn't working, just like the other one, so we had to call maintenance again.

The dinner lady who brings me my meals likes to give me Milo packets and a mug of hot water 4 times a day. I don't like to drink hot Milo and mum only drinks tea, so we have quite a small bundle of Milo packets now. Every time she comes in, I ask her why she keeps giving me the Milo packets, and mum always replies that it's because she likes me.

Grandma came by, with grandad, aunty Lina (mum's sister), Omar and Emma. Aunty Lina helped mum to buy me a Strawberry Shortcake Cafe which I had been asking for. Dr Choy calls it the tomato house. Grandad massaged my legs because they hurt a bit today.

Mum compared notes with her friend in the UK, whose daughter also has ALL. Dr Choy has given her my treatment protocol which lists out my chemo schedule for the next two months or so, and the list of drugs I will be given. Mum says her friend's daughter, who is receiving treatment at Sheffield Children's Hospital, will be given the same drugs as me -- the IT (chemo injection into the spine) Vincristine (which is given through an IV), Dexamethasone (a steroid tablet 2x day) and Asparaginase (injection into leg muscle). There are some others, but these are the ones we are both started off with initially.

Anyway, here's a good site that talks about ALL:
http://www.merck.com/mmhe/sec14/ch176/ch176b.html

QOTD: "Why is she always giving me Milo??"

Tuesday 29 December 2009 - Treatment Day 1

Today I had my 1st bone marrow biopsy, where they put a needle into my bone marrow near my hip, and take a small amount of it to see if I have leukaemia and what type it is. I also had a lumbar puncture, where they put a needle into my spine to take some fluid to see if the leukaemia, or cancer, has reached my spine or brain.

The nurses put a special cream called Emla on my back so that the needles wouldn't hurt. Mum was worried they hadn't put enough, on the right areas, and she fixed the cream behind my back. They also ran out of adhesive tape to fix the cream into place and didn't put enough tape on my back. Mum wasn't very happy. But it all went reasonably well.

They also gave me an injection called Intrathecal Methotrexate, or IT for short, which is a type of Chemotherapy or chemo for short, into the spine. It helps to kill leukaemia cells in the brain and spine, and is usually given as a preventive measure even if you don't have those bad cells in your brain or spine.

I was told not to eat or drink anything from 5 in the morning, because I was going to be sedated so that I could sleep. This is so that the biopsy, puncture and IT wouldn't hurt. I was really hungry and we had to wait for the doctor to arrive.

He finally came at about 10am, but said the admin department needed a letter from dad's company, about payment for tests and treatment. Dad went to give them the letter. We had to wait some more. I watched a lot of Mr Bean again, along with Phineas and Ferb.

Finally I was taken to the treatment room. Dr Choy and many nurses had to hold me down while they sent me to sleep, using a drug called Ketamine. Mum and dad weren't too sure about the drug, but the doctor and nurses seemed to know what they were doing. I wasn't very happy, but then I went to sleep, and I didn't feel anything.

When I woke up, mum and dad were there. I was still sleepy from the drug, and I told mum I couldn't see, but that I had "too many imaginations" swirling in front of my eyes. She cuddled me and told me to try to go back to sleep. But I was too upset with all the "imaginations" and kept crying for a few hours. Then I got tired, so I slept for a bit. But it was very noisy outside, because the room was right next to the lifts, so I kept waking up and crying. Mum asked the nurses if we could move to another room but they said they were all taken.

When I woke up, I had to take some medicine, called Allopurinol, which was very sweet, and Prednisolone, which was very bitter. Allopurinol helps to prevent my kidneys from shutting down, which could happen when stuff called uric acid is released when the bad leukaemia cells are zapped by the chemo treatment. I am not too sure what Prednisolone does, but the doctor says it is more important than the other one.

I have to take these two every day, three times a day, for a week. I don't like taking medicine, and I refused to take these. Mum and dad put them in a syringe and tried to make me swallow but I threw up after that. Mum got a bit upset and tried to explain to me what would happen if I didn't eat it, but I didn't really listen.

Some more of dad's friends came today. Uncle Hisham and aunty dropped by on their way to work to say hello.

Mum made a new friend on the Internet, it is a lady in the UK whose daughter aged 3 and a half, was diagnosed with leukaemia on Christmas Eve, just one day before me.

Weight: 17.8kg

Monday 28 December 2009

I moved to another hospital today. It is the Sime Darby Medical Centre (SDMC). It's very far from home. I didn't want to go to another hospital because I liked the first hospital, and the room was nice but mum said the doctor here could help me get better.

Dr Iean had said that a haematologist, or someone who studies blood, had looked at my blood film results and said I had leukaemia. He said that the best person who could help me get better was a paediatric oncologist called Dr Lin at SDMC. A paediatric oncologist is a doctor who treats children who have cancer. Mum asked him about other places nearer to home but he said Dr Lin would take good care of me and that he was "second to none". Dr Iean said he had sent 4 children with leukaemia to him over the past 10 years and they were all better now. He said he had worked at 3 other hospitals which also treated children with cancer and that Dr Lin was the best.

He said that Dr Lin was on holiday but that he had had spoken to him and that his colleague, a paediatrician called Dr Choy, would take care of me until Dr Lin got back. We said goodbye to Dr Iean and he almost looked sad.

The hospital was much bigger than Gleneagles, and nobody there knew who we were. They didn't seem to be expecting us. Luckily I was in a wheelchair because we were made to go to and fro between the North and South Towers 4 to 5 times, while the staff kept telling us to go to the wrong places. We went to emergency but they told us to go to Dr Choy's outpatient clinic. But my name was not on the list. There were lots of sick children waiting to see the doctors there.

Dr Iean had said our appointment was at 12pm but the lady at the clinic said Dr Choy only comes in after 2pm. They didn't really help us after that and we kept going to all the wrong floors after that too. Mum got angry and called Dr Iean asking what was happening, and he didn't know himself. Dad asked what Dr Iean told mum and she said he said "It's the usual crap."

In the end, we went to the childrens wards, where the staff at the counter did not seem to be expecting us either, and complained that we were "not following the proper procedure." Mum shouted at her, and we were made to wait in a room. I told mum I didn't like the room because it was empty. She said it wasn't our new room, and that it was just a waiting room.

After a while, a very nice nurse came in and said our room was ready. Mum said she was very unhappy about being sent to all the wrong places with a very sick child who had now been exposed to possibly a lot of germs all around the hospital. She said the staff were very unhelpful. The nurse was really nice about it, and she helped us carry all our luggage into our new room.

It was much smaller than the other room, and not as nice. The tv didn't work at first so a maintenance man had to come and repair it. The toilet and sink made a constant drippy noise too, mum wasn't very happy at all.

After about 3 or 4 hours, we finally met Dr Choy. He said that my room had been prepared the night before and it was all a mistake. Mum was too tired to say anything anymore by then. He asked about my medical history. Here's what mum said:

1. I had had swollen lymph nodes behind my ears and on my neck for a month.

2. I had had fever on and off for a month. I had had one round of antibiotics immediately after the swollen nodes were spotted, but it didn't help to clear it up. I had seen a GP 2-3 times and my usual paediatrician 3 times, but things still didn't improve.

3. I was also pale for the last 2-3 weeks.

4. I tired easily and kept taking naps in the last few weeks, which I have never ever done in my life.

It turns out there are also some other symptoms of leukaemia that I had had, but no one knew that it was leukaemia. Among them were leg pains. This happens when the leukemic cells attack your body. I wake up a lot in the middle of the night crying from the pain. Another symptom is also sweating a lot at night, which I had been doing. My liver was also too big, which Dr Iean had also said.

Aunty Azura (mum and dad's friend) and uncle dropped by to see how we were doing. She gave mum a book about stem cell transplants.

Today's bill: RM4,000++

QOTD: "I don't want another hospital!"

Sunday 27 December 2009

I have had so many visitors while I have been in hospital. All my other aunts and uncles came to visit, and my cousins Omar and Emma.

Dr Iean says my immunity is very low, and any infection could be dangerous. He always wears a mask when he sees me, to make sure he doesn't pass any germs on to me, and he makes sure the nurses do the same. All the rooms also have lots of bottles of sanitisers inside and outside the door, so visitors can sanitise their hands before they see me. Mum and dad are also trying to get family members and friends to wear masks around me too.

I was happy to see Omar and Emma. Even though my room is really nice and I have the Disney channel on tv, I still get bored a lot. It was raining outside. I keep watching the same programmes like Mr Bean which I don't even like, and Stitch. We played for a bit before they had to go home.

Today I also got a lot of new dvds which mum bought for me. She brought me Planet 51, Astroboy, Pokemon, and Tom & Jerry. Aunty Elisia (mum's friend) and baby Hallie also sent me lots of pressies for hospital. They got me organic lip balm, which was good for my lips which are cracked from the leukaemia, and organic lotion. Organic means it is made without the use of nasty chemicals or pesticides which can cause cancer.

They also gave me a pretty pink and white hooded towelling robe, and a really cute bag, and mum got two bars of yummy organic chocolate and some almond biscotti.

I watched the Disney channel before falling asleep. Mum sleeps with me on the hospital bed while dad sleeps on the sofa near the window. We don't sleep that much though, because the nurses come in every few hours to check my blood pressure and temperature and give me my medicine. I also wake up sometimes in the middle of the night from the leg pains.

Saturday 26 December 2009

I had a lot of visitors this morning -- grandma and grandad, jidda (dad's mum), aunty Shalya, uncle Elya (dad's brother) and Baba (jidda's mum). They brought a lot of new magazines and colouring books for me. (The above image is from mrmagazine.wordpress.com). Aunty Lilian (mum's friend) came for a bit and had tea with mum downstairs at Dome.

Mum brought some more story books from home, which we'd bought a long time ago but I'd not read yet, and also some old reading books we got from the Lake Club library a long time ago. They were too easy for me by now.

I was also bored at school because I've been reading the same book -- Toby and the Space Cats (Ginn) -- for a few months now, because the school was busy preparing for the end of year concert which took place on the last day of school a few weeks ago. I normally get a new reader every day. Mum and dad were happy though because I won a prize for best student again at this year's concert. They said I performed very well too, in our stage adaptation of Aladdin. But I was already very poorly then, and quite pale.

The nurses moved me to my own room today, because I didn't need to be monitored by a nurse the whole night. They just come in once in a while during the night to check my temperature and my blood pressure. I have been having a fever on and off for the past one month. So Dr Iean gave me antibiotics and paracetamol. I hate eating my medicine, but the antibiotics were given through my canula. It didn't hurt.

A clown came to visit the children in the hospital today because it was Christmas yesterday. I got a nice big balloon from one of the nurses.

Aunty Carolina, who is married to dad's brother, uncle Iran, also came, but the nurse said it was best she didn't come into my room because my cousins are having chickenpox now. She gave me a huge bag full of treats from everyone, a get-well card, a balloon, a teddy bear, a giftbox with a heart necklace and keychain, lots of colouring books, a diary with a padlock (my favourite), bluetack and lots of glittery pens and stickers. I have so many new books to read in hospital, and toys, dad had to buy a huge plastic box to keep them in. Mum calls it the mini-skip.

Mum and dad helped me to write in my new diary. I wrote: "Dear diary, I have never had a diary before. I am sick today. I am in hospital. My mummy and daddy are with me. I love my mummy and daddy. Love, Zara."

Uncle Hizwani (mum's brother) and aunty Nora came by with my cousins. They helped me write in my new diary. I told them to write this:

"Dear diary, I am going to England and Paris when I feel better."

Me and mum and grandma have tickets to go to London next month. But mum said I can only go when I get better.

I woke up at around 3 or 4am because my legs hurt. Dr Iean told mum it was because of the leukaemia.