Day +28

It's been 28 days post transplant and from yesterday's hospital check up, according to Min Ser's blood counts he is doing well. Though physically he still feels odd... his sense of taste is a bit off. Sweet things don't really taste sweet and some food can taste rather plain. Besides that, his digestive system is not optimum, he at times feel uncomfortable after eating.

He is also having slight rashes on his palms and face suspected to be an allergic reaction to an antibiotic given (bactrim). He experienced this before, the week he entered hospital for transplant. At that time it was only suspected that it may be caused by this drug, but since it has happened again, it is quite confirmed. He has stopped taking this particular drug since yesterday and we are to monitor if the rashes is contained in the same areas. This is because rashes caused by skin GVHD also looks the same.

All in all, things are looking ok. He still eats well and rest well (except for yesterday due to the itch on his palms).

Jo and I are doing well. She has been back at home ever since we returned from hospital. She's been going about the house as if she never left. And I'm busy making sure she keeps out of trouble and don't kacau her daddy too much. At the moment she's being entertained by Barney. But not for long... ok. Got to go.

Day +20

We're in Ampang Hospital for Min Ser's first follow up session. Doc says his blood counts are good, and we will only need to come in once a week instead of twice a week. Yay!

Today's counts:
WBC: 4.8
HB: 11.8
P: 213

Discharged on Day +16

Just posting to inform all that Min Ser has been discharged from hospital! Yay! We just arrived home a couple of hours ago. I am so so so elated it's just before our baby Jo's 2nd birthday this Sat!

His blood counts showed good signs of improvement and he can eat solid food and swallow his medication.

He still feels tired and weak but he is overjoyed to be out of hospital. Truly it is a huge milestone to be fit for discharge post transplant.

We will continue to go back to hospital every Monday and Thursday for the next 2.5 months for follow up. During that period he will have to avoid going to crowded places.

He also has to take cyclosporine (anti rejection tablets) at the same time everyday for the next 5.5 months. We chose 10am and 10pm. Very important! So we've set multiple alarms to help remind us.

So yeah, it is a relief to have passed this stage, praying that the worst is over. We are truly grateful for all the prayer support and words of encouragement, and are truly thankful to God for having brought us thus far!

Day +14

It's been two weeks since the transplant. He is improving slightly. Still hurts to eat and his digestive system is hardly optimum. It's been a week since he has eaten or drank anything so slowly getting his system used to it. He had a little tau fu fah yesterday & chrysanthemum drink. He also had some cereal with milk this morning.

He has some slight diarrhoea but according to Dr Chang, it's quite normal. His blood counts has gone up pretty fast. Pain is more tolerable now and morphine level is reduced to 0.5ml.

Today vs (yesterday's) counts:
WBC: 2.1 (1.6)
HB: 10.4 (10.1)
P: 64 (46)

Day +12

Two pints of blood were transfused today as his hemoglobin counts were low. He feels slightly better today and drank a little bit of soya bean. Still hurts to drink. Morphine has been reduced to 1.3 ml.

Today's counts:
WBC: 0.7
HB: 6.3
P: 25

Day +11

Doc prescribed another two days of TPN. Monday onwards he should try to drink liquids on his own.

It seems the mucositis is less severe now. Min Ser says it's less painful, but still too painful to drink. Morphine amount lowered to 1.5 ml this morning.

Based on his blood count results, his condition should improve within the next few days.

Today vs (yesterday's) counts:
WBC: 0.6 (0.4)
HB: 8.0 (7.9)
P: 22 (21)

Day +10

He still finds it very painful to drink. Impossible to swallow solids. He'll still be on TPN (the 'milk') today.

The pain was quite unbearable last night and this morning. So this morning, doctor raised the morphine level to 1.7 ml from yesterday's 1.5 ml. She did mention that his white cell counts are going up causing inflammation which explains the added pain.

He also had a fever of 38C. After taking Panadol soluble and the increased morphine dose, the pain is now more tolerable.

Well, thankfully there is one good news for today. His white cell counts are going up.

Today vs (yesterday's) counts:
WBC: 0.4 (0.1)
HB: 7.9 (7.5)
P: 21 (34)

Day +8

Not much progress since the last update. He's not in more or less pain, pretty much status quo. He did feel like drinking juice and soya yesterday, but not today.

He is still being given 'milk' via IV. Yes 'milk' within quotation marks. When you ask a nurse "what is that" and she says "susu" apparently she doesn't literally mean milk. I don't think it's safe to inject real milk directly into a person's blood stream. It was probably the most convenient answer which doesn't require too much explanation.

Anyway, I did more research and the accurate solution he is being given is TPN Kabiven. TPN for Total Parenteral Nutrition. It contains a balance of various substances like amino acids, dextrose, lipids, etc. It should be enough to sustain even if he doesn't want to eat or drink. He will be on TPN for another next two days if needed.

Today's Counts:
WBC: 0.3
HB: 8.2
P: 32

Day +6

He's still in pain. Mucositis is at a severe grade 4. Morphine now at 1.2 ml per hour (max he can take is 2ml) but trying to avoid having a higher dose as it can cause nausea.

Dr Chang mentions don't have to eat or drink. Milk, water and meds can be given intravenously.

For some reason, I find the concept of milk given intravenously highly intriguing. Vitamins are added to a huge (biggest I've ever seen) IV bag of milk (maybe ensure?). Total 1206 ml, 800 kcal, which will be given over a span of 12 hours.

His platelet count is low, cracked and dry lips starting to bleed. Platelets to be transfused once ready. He managed to sleep off most of the day but he's now playing a video game on his laptop.

Today's counts:
WBC: 0.2
HB: 8.6
P: 18

Day +5

Mucositis is getting worst. Very painful. He now can't really talk. Imagine having an ulcer but this time all over the mouth and throat and possibly down the GI tract.

Things like soft pear and watermelon is painful to swallow. So purely on liquids now. Light cream soup with blended veggies, soya bean drink, ensure choc milk, chrysanthemum and barley.

Doc says it will last about a week. Pain killer given (but only slightly effective) is small doses of morphine in drip

Today's counts:
WBC: 0.1
HB: 8.4
P: 35

Day +3

He is starting to have mucositis - inflammation in the GI tract, resulting in ulcers on the tongue, mouth and throat. No treatment, just pain killers if he cannot take the pain. He also needs to observe proper and frequent oral hygiene and drink lots of water. He now finds chewing discomforting. So will eat softer food starting tomorrow.

He also had one episode of bad diarrhea and slight vomiting this afternoon. But overall he is not weak. He still moves around the room on his own and doesn't have to lie down.

Though this is all expected effects of radio and chemo + post transplant patients, we were hoping he may be spared the worst of it. So yups, praying the ulcers go away really soon.

Today's counts (down trend overall):
WBC: 0.2
HB: 8.7
P: 60

Day +2

So far all is well, Min Ser is fine today. His red blood count are on the uptrend. White blood and platelet are coming down a little. But he feels ok as a whole except for a sore throat which makes it slightly hard to swallow (a side effect of the chemo). Otherwise he is eating and drinking well.

Sue Min went home yesterday afternoon. She feels well post collection and the removal of the femoral line was painless even without any anesthetic.

So as of now, still waiting. He will have small doses of chemo (via syringe) on day +1, +3, +6, +11. So looks like we'll be here for another 10 days at least.