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?"