Still In Hospital

Min Ser is still in hospital with fever on and off. Today was at a high of 38.9. Prob due to some form if infection. Doctor's are taking great precautions to prevent any complications by administering high dose anti bacteria and anti fungal meds on top of the usual panadol.

Let's pray that the fever subsides completely as he is feeling quite uncomfortable due to it.

God is good...

Today I find richness in one cliché I used to find fun and cute in church. For instance when the worship leader or pastor shouts "God is good" and the congregation replies "All the time" and vice versa.

When we heard that Sue Min was a full match for Min Ser as a bone marrow donor, my first reaction was just "Wow!". I was hoping it and yet at the same time all I could feel was "Wow!".

So maybe 1 in 4 is not unlikely odds. But I was never one to feel "lucky" when it comes to odds and probability. I hardly 'tembak' correctly in a test even if it was down to C or D. And those were odds of 50/50. And both Min Ser and I have never ever won a lucky draw in our lives. Be it that awesome flat screen TV or even a RM50 Jusco voucher.

But this miracle makes up for all the lucky draw non-wins and unsuccessful exam 'tembaks'. This supercedes all those now superflous disappointments. This is exactly when I want the odds to be in our favour.

Truly truly "God is good all the time, and all the time God is good!"

Bone Marrow Match!

This just in. HLA typing results are out! Sue Min is a 100% match to Min Ser. For a 1/4 odds this is very very good news. Praise God!

Day 19 First Cycle

Red & white blood cells & platelet counts are low. Second platelet transfusion will be done today.

He currently has a mild fever (37.5). If it subsides and blood counts are on the uptrend he will be discharged on Thursday to rest at home for a week plus. His counts were on the up day before yesterday, but was lower on today's test.

His hair has started dropping. He plans to shave it all off once he is discharged.

Regarding chemo, the second cycle will start 2nd week April (subjective to the blood count results), date scheduled to come back to hospital is 9th April.

Progress Updates

Min Ser is doing well so far. Headaches are less or not so much a concern anymore. The diarrhoea was just for a day, so that's good. He is eating well. Good appetite. In case some of you are wondering, yes he still has his hair. Still as good looking as ever. Not to say a bald Min Ser would look any worse though.

His blood counts have been steadily dropping. White blood cells are almost gone. Platelets are low. He had a platelet transfusion today. Red blood cell counts are normal.

We did ask if donors were needed. The hospital was pretty clear that they had more than enough. So no worries there.

Regarding HLA typing (to find a bone marrow match). Sue Min (Min Ser's sister) had some of her blood taken last Thursday (14/3). The tests will take about 2-3 weeks. So we should know if she matches soon enough. Will update on that once we know.

Blood Counts Dropping

First round of chemo IV drips ended last Saturday. Now it's the wait for Min Ser's blood counts to drop, which has already started. It is expected for his counts to be at it's lowest on Tuesday to Thursday. This will last for a week or so before it starts picking up again. Once that happens and his counts are back to normal, he would have officially 'survived' the first cycle (induction) chemo.

As of today he is feeling very weak and tired. He has a really bad headache (couldn't sleep last night). This could be due to last week's lumbar puncture. But doctor's are monitoring this development as well, as the chemo drugs given were strong enough to penetrate the Central Nervous System and the brain. Besides that, he also has slight diarrhoea.

I'm praying that he will recover from these ailments and that he may be able to rest well this next couple of weeks.

A Picture of the Enemy

Above is a picture of typical myeloid leukemia cells - apparently thousands can be found in a few samples of blood of a leukemia patient.

The way I understand it (without having the qualification of high school biology), is that these cancer cells are actually mutated white blood cells.  White blood cells are supposed to be our body's defense system; due to reasons yet inconclusive to medical science, the white blood cells in an AML patient have started mutating and are causing damage instead of protecting the host.

In my case, the cancer cells have been found to be extremely aggressive, forming rapidly also in areas outside the bone marrow as detected via the PET scan.

The doctors have responded to this development with appropriate force and fortitude, with a higher dose chemo regime and expedited consolidation plans.

We will cover this also with force and fortitude, in our unwavering prayers.  More than ever before I am convinced that God's Name will be glorified in all of this, and He is working out His purposes, come what may tomorrow or the day after.

We have a God who fights alongside us, and Christ will be praised at the end!

 Psalm 18:30-36
"As for God, His way is perfect;
The word of the LORD is proven;
He is a shield to all who trust in Him.
For who is God, except the LORD? 
And who is a rock, except our God?
It is God who arms me with strength,
And makes my way perfect.
He makes my feet like the feet of deer,
And sets me on my high places.
He teaches my hands to make war,
So that I can bend a bow of bronze.
You have also given me the shield of Your salvation;
Your right hand has held me up,
Your gentleness has made me great.
You enlarged my path under me,
So my feet did not slip."

Intensifying Chemo

Lumbar puncture results were out today but results were inconclusive. It showed signs of cancer cells in the spinal fluid but that could be a result of contamination from blood cells which also was found in the sample.

To be on the safe side, Dr Chang and his team has agreed to intensify the chemo beginning tomorrow to ensure it is strong enough to purge any potential cancer in the spinal cord and brain.

They will also prescribe antibiotics and anti fungal medication since the intensified chemo means a longer recovery period. This is done to reduce risk of infection during this stage. Dr Chang recommends that the HLA typing be done ASAP to find a suitable bone marrow donor. Min Ser's sister, Sue Min will be coming in tomorrow morning for the test. If no match is found we will proceed to check International Donor Registry.

Do keep praying for the treatment to go as planned and for Min Ser to be infection free in the next two weeks.

PET Scan Results

Dear friends and family,

This is Min Ser, decided to contribute to the blog too - Jen Ling is out getting lunch for us. It's day 5 of  my first cycle of chemo here in Ampang hospital.

PET scan results came back yesterday - not too encouraging, at it showed signs of abnormal cells in my back vertebrae and sternum area.  Consistent with the back aches I have been having for the past month.  The PET scan report suggests chloroma could be developing in these regions as well.

Just to be safe, the doctors will perform a lumber puncture this afternoon to extract some spinal fluid to run some tests.  At the same time, they will administer some chemotherapy straight into my spinal column to protect my central nervous system.  Apparently the needle is small (er) these days...we'll wait and see if that's true or not =)

Doctor mentioned the next 2 cycles of chemotherapy will be stronger and more intensive - we all were under impression that the first was the strongest, but apparently not so.  Maybe because of the PET scan results?  It will be a different regime (not DA 3+7), but I don't know the details yet.  The chemo should be strong enough to break down the various tumors; there are options for radiotherapy if there are some persistent ones.

To be honest, was a bit down when I saw the PET scan results - even the nurses mentioned I 'nampak kurang ceria'.  I guess the flurry of unexpected negative news is hard to handle. 

I woke up this morning feeling God saying 'Trust Me' - it was a night of random dreams and half-sleep, but was good feeling His assurance...all things are still in His control.  There was a chorus in my head 'When mountains fall, I'll stand, by the power of Your hand...'.  God knows how to encourage and He remains a BIG God.

Looking at JoJo's pictures cheers me up a lot too - hope I can see her soon.

I want to say a big thank you to everyone who is praying and sending us your encouraging words of support.  I have never felt so blessed by so many people before.

And also to those who are taking the time and effort to cook for me - just a request here to give me standard Malaysian food, no need for 'bland sick person diet' =)

My care-givers by my side (my wife, sister and cousin) are true heroes.

We'll keep pressing on...

Min Ser
p.s. Jen Ling just came back with roti telur - puji Tuhan!

Second Day of Chemo

It's been one day of chemotheraphy, administered through IV drips. So far so good, save for a few hiccups at the beginning. Chemo started yesterday afternoon with the first dose of Daunorubicin 60mg/m2 (red transparent liquid). He didn't feel comfortable. Slight numbness in the hands and it hurt a little. After changing to the second line (different area on his left arm), the feeling of numbness still persisted and his arm developed a slight rash. They injected something to help the rash and ice to apply on it. The line was changed to normal saline for a while, and they lowered the rate of the drips. After that it was ok.

After daunorobicin, nurses changed it to clear coloured cytarabine (Ara C) 1000mg/m2 for 12 hours. This will be the regime for the first 3 days.

As of this morning, he has experienced slight nausea (controlled with anti vomit meds) and slight lost of appetite. But this is to be expected. Overall, a good first day I would say.

Chemo First Cycle

Dear friends and family, Min Ser will start his first cycle of chemo tomorrow morning. The first cycle (induction) is the toughest and most crucial.

Each cycle for Min Ser consists of one week of treatment. And second and third week of monitoring and recovery. After the first week he will have low counts of white and red blood cells and platelets. So that's when he will be vulnerable to infection or bleeding.

If all goes well, he will be allowed home for one week, before starting the next cycle the week after.

Please pray. For specific points please refer to the side bar link on 'prayer requests and needs'. Thank you.

PET Scan @ SDMC

Min Ser is undergoing a PET (positron emission tomography) scan right now. PET scans can help show up a cancer. This will help docs to ascertain if the cancer has formed anywhere else besides the 2 areas already identified (duedenum & bile duct).

It is rare in Leukemia patients for tumours to form outside the blood (extramedullary). Even rarer for it to form first before showing in the blood. Like in Min Ser's case. Thus this scan is deemed important to undergo before chemo starts.

This scan was initially arranged to be done in Putrajaya Hospital. But we were told yesterday that the earliest slot available was 13/3. A whole week later. Any earlier would be subject to cancellation. We were advised to do it earlier in SDMC.

It turned out well too as his bone marrow sample slides are here in SDMC, and if not prepared and collected today, I'm not sure how much longer it would have taken to get from the lab here to the lab in Ampang Hospital. When I went in to the lab to check this morning, apparently a request for his slides has not been made yet. Sigh, and I thought the request would have been made Monday itself, if not Tuesday. It is always proven true that it's important to inspect what we expect.

On a lighter note, I would like to mention that we travelled here in an ambulance! It was quite exciting. Min Ser is still mobile so he didn't have to sleep on the stretcher. We left Ampang hospital at 7am and arrived right on time at 7.30am. The ride was bumpy, no suspension, the seats felt like it was going to fly off. Almost like an amusement ride, but sometimes more exhilarating than amusing. The driver drove like I would expect an ambulance driver to be driving. If it was a life and death situation, I think I would have arrived on time.

We have moved...

... to a two bedded room! :)

The nurse came in an hour ago and said "Tan Min Ser, pindah bilik (shift room)". I asked "sekarang (now?)" "ya".

I can't imagine how we managed to collect so much stuff in our one quarter space since yesterday. But we shifted everything. Our food, clothes, bags, folding plastic chair, p1 modem... and the nurses rolled over the bed to the new room.

Aunties and uncles were so cute. They were so curious. "oh, pergi mana? (Where are you going?)". One aunty even came to peek at our new room. "zhe pian hau ar. (This room is nice.)"

It IS nice. More spacious and definitely more quiet.

Second day at Ampang Hospital

There is no private wing here. We are currently warded in a 3rd class 4 bedded ward. No complains, though it would be nice to have a single room once he starts treatment (better rest and a perceived cleaner environment).

But staying in a shared ward is a different experience altogether. The other patients are all elderly and so we are forced to speak mandarin or BM. The uncles are undergoing chemo as well, and the aunties are their faithful wives who never seem to leave their side. They are really friendly.

A Dr Jerome, who reports to Dr Chang, now oversees Min Ser. Treatment for chemo will only begin next week after a PET + CT Scan is done in Putrajaya Hospital (he will get to ride in an ambulance). His blood samples will also be sent to SGH for mutation studies.

Dr Jerome explained that good mutations has a lower chance of relapse and will be easier to undergo a bone marrow transplant (or may even not need a transplant). Bad mutations will definitely require a bone marrow transplant. All in all mutation studies will be useful in the future as it will help to detract any early signs of relapse with even just 0.01% abnormality in the blood stream.

Min Ser is well. Albeit more tired then usual, uncomfortable muscle ache on his left shoulder and back, and slight blurry vision (dot in the middle) in his right eye. He saw an optomologist yesterday, who says it's not connected to leukemia and probably stress induced. He is prescribed eye drops and vision is expected to recover in a few weeks.

First day at Ampang Hospital

We arrived early in the morning. Taking the MEX highway from Putrajaya was a good choice. It was smooth traffic all the way until we reached the Kampung Pandan roundabout.

The hospital looks newer than Selayang Hospital, and not as large an area. Navigating was easy, but crowded as expected. We arrived before 8am. After registration, taking of blood, and waiting for results, we were called in to see Dr Chang at 10+am.

He explained the nature of AML to us, as well as the treatment and side effects. Min Ser will have to do 3-4 cycles of chemo. Each cycle will consist of one week of treatment and 2 weeks in hospital. If all goes well, he will be able to go home for a week. The cycle will then start again. The highest risk of infection is during the 2nd and 3rd week during the first cycle. He will have no immunity left. Even his mucous lining will break down, and that's when mouth and throat ulcers will occur, along with lost of appetite and vomiting.

Moving forward, if he responds well to chemo and is in remission (no more cancer cells). A bone marrow transplant may most likely need to be undertaken. Best case scenario would be a complete sibling match. There is a 25% chance of a complete match and 50% chance of a half match. Min Ser has one younger sister. A chance of a match from an unrelated donor is also an option with registries from Taiwan and China. From these registries, there is a 1 out of 2 chance of finding a match.

Understanding what's involved is important as it helps us make informed decisions. We have heard much about what to expect, but I'm sure nothing will prepare us for the reality of it. That being said, we came in to the hospital today decided on seeking treatment. When Dr Chang asked Min Ser if he wants to be warded today. The answer was yes.

Raffles and SGH

We were in Raffles Hospital's Cancer Research Centre early this morning. We meant just to drop off samples for Monday's appointment. But while we were waiting, we were called in to see Dr Daryl. The latest info from yesterday's blood test clearer shows leukemia, thus there is no reason to do further biopsy on the samples we brought.

Our afternoon appointment with Dr Tien brought about the same remarks.

Today's appointments with Dr Daryl and Prof Tien affirms AML. A blood test done in SGH also shows that blasts in Min Ser's blood stream is now higher. This proves that the cancer is progressing quickly and we are advised to seek treatment ASAP. We asked if there was any new development for this type of leukemia in Singaopore, and apparently there isn't. It's still basic untargated chemo.

We thank God that Min Ser's appointment with Dr Chang at Ampang Hospital has been brought forward to Monday morning. A colleague of a friend is actually Dr Chang's brother, and that helped a lot. Truly we have been experiencing God's favour for things to fall into place so quickly and efficiently.  We'll be flying back tomorrow morning.

A clearer diagnosis

Arrived in Singapore an hour ago. We are staying with friends. We truly appreciate the comfort and convenience of avoiding public transport and crowded places. Not to mention good home cooked food. Thank you Steve and Adelene.

Min Ser's bone marrow results are not yet ready, but this morning we received results of his blood test taken during Monday's procedure. Blast cells, 22% were found in his blood stream which confirms AML.

Looks like we had our clear diagnosis even before take off. If the other 2 doctors concur, then it's pretty clear what next steps need to be taken.