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?"