Last Post Moving Forward

Well, this is my last post for this blog. This blog was started to chronicle our journey as a family. Battling AML, trusting that Min Ser will recover physically. And he did, for a while. We had an extra 8 months with him. Though he was weak and tired quite often, it was good times.

I was considering how to end this blog, and I want to focus on the word "Recovery". And this, I believe is the most apt definition.

Recovery: Restoration to a former or better condition

Min Ser has been restored back to our Father, he has returned to where he came, and he is now in a much better condition. He is with Jesus. No more pain, no more suffering, he lives on, not in body, but in soul and spirit. And with that, I am assured of the hope that I will indeed see my best friend again.

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Fyi, I've started a new blog to chronicle my journey with my daughter. As many are understandably concerned about us, I hope that this blog will help ease your concerns in any way possible. Do also continue to keep us in prayer as we journey forward.

Our Journey Forward — http://keep-on-pressing-on.blogspot.com/

The Wake and Funeral

It's been 10 days since we put Min Ser's body to rest. I've never been to a burial before, but it was indeed poignant and for lack of better words... beautiful.

I am personally amazed and thankful at the amount of people who came to pay their respects the two nights of the wake and on the burial day itself. The entourage from the parlour to the burial ground was alike that of a VVIP, (of course he was a VVIP to all who knew him) datuk, or menteri. Ok, so maybe I've never personally seen an entourage for a datuk or menteri, but yeah... the line was really long. Sitting in the van behind the hearse, looking back, I would conservatively say there were 20 cars and 2 buses following behind. Amazing.

The burial ground was really green and peaceful, and his plot is in between two shady trees. We paid our last respect, and then the coffin was lowered down. We placed flowers and a handful of gravel, and then his coffin was covered up. When the last cement slabbed was placed, my daughter started shouting "Daddy, daddy!" It's as if she was trying to warn him, or she was surprised, why are they covering daddy's box which he was sleeping in. Needless to say, that's when I really started crying. She still asks for daddy once in a while, but she doesn't make a fuss about it.

The two nights of wake services was really touching. The eulogies, the message, and the people who came. I could just sense the love, respect and admiration different ones had for Min Ser. It was a pity that the biggest hall was booked up for the two nights, and we could only get a small space (sitting 70) for the first night. So many people came, the crowd was from the small hall until the lift area. So sorry to hear that some families left as they couldn't hear or see anything plus it was stuffy and hot. For all those who came, but we didn't manage to see. Thank you, thank you, for coming.

During my eulogy, I shared a song written by Min Ser the time we were in hospital.
As many people have asked for the song, I'm sharing the lyrics here.

In His Wings (based on Psalm 91)
Written 29th May 2014

Verse
There is a place
Dwelt by the LORD Most High
Where He is near
A fortress and a refuge

A secret place
For those who trust in Him
A place of peace
Right within His shadow

Pre-Chorus
When fear knocks at the door
When darkness closes in
When troubles come as floods
When hope cannot be seen

Chorus
Do not be afraid
Do not be dismayed
His truth shall be my shield
Through night and the day
His praises I'll sing
There is safety in His wings

Bridge
You say... "Set your love on Me"
You say... "I'll deliver you"
You say... "Set your love on Me"
You say... "I will answer you"
You say... "Set your love on Me"
You say... "I will comfort you"
You say... "Set your love on Me"
You say... "I will satisfy you"

Recollecting Min Ser's last day

It's been a week since Min Ser passed away. The memories are still fresh, and I have only just started processing and journaling the events that has transpired. I have personally written 27 pages in my journal on the events preceding and proceeding his demise.

I realise it must be a mystery to many as to what happened to Min Ser 7 days ago. Min Ser's death certificate states that his cause of death was 'severe sepsis with fungal pneumonia with refractory acute myeloid leukemia'. Here is my account of that day.

I picked up mum and dad at 11.30am to head to the hospital in time for visiting hours. Once we arrived, mum and I went straight into the ICU. Straightaway we were informed that Min Ser's condition was unstable. His blood sugar level was high, liver and kidneys failing, blood pressure was low and his heart rate was racing. He is on four medications to raise his blood pressure, but to no avail. At that rate he will last another few hours or at most days.

My heart dropped, I was so hopeful he would be better. I even made a book (a guest book of sorts) for visitors to write encouraging messages so that he will be able to read it when he wakes up and he would have known who visited.

I quickly called Sue Min to come, and informed my parents as well.

I went back into the ICU, held his right hand and just sat with him. He was sedated but breathing heavily. Slowly different ones, friends and family came in to see Min Ser. I was just so numb with the thought that I may lose him that day. Mum and Sue Min seemed to be holding up pretty well but dad was inconsolable and broken.

At 2.30 pm a small group of us sat in a circle at the ICU waiting room, we prayed and continued to claim healing for Min Ser. We were not willing to give up just yet.

At 3.30 pm, my mummy came to support and to be with me.

At 4.15 pm, Dr Chang confirmed that his condition is absolutely critical and there was really nothing more the doctors can do for him. He was already on 5 medications to keep his blood pressure up and it was still dropping. Usually 2 or 3 would suffice for other patients. I asked what happens when his blood pressure drops to low? Eventually when his blood pressure drops, his organs will fail and his heart will stop.

Hesitantly I walked to his room in the ICU. We were allowed to be with him in a group at this critical moment. His blood pressure was hovering between 90/50 and 80/45. The immediate family and some cousins and aunties gathered around him. It seemed he still can hear us, so many talked to him, said their goodbyes and told him it was ok to go. I just held on to his hand so tightly and squeaked an "I love you."

After an hour of waiting, I said I really had to go to the bathroom. I quickly rushed out and back. When I came back, mum said "Min Ser frowned / or was frowning" when I left. He always wanted me to be close to him, beside him. I held his hand again, while constantly monitoring his blood pressure and heart rate.

At 6pm when dad was talking to him, assuring him that he will take care of his family, I noticed his blood pressure and heart rate slowly but steadily dropping. I looked at mum and said, "It's time."

That's when I really started talking to him. I said, "Dearie, I love you, it's time. Steady, good job, walk with Jesus. You're almost there. Steady, good job. I love you." I kept repeating myself saying those words. Sue Min rushed into the room and joined us to encourage him.

His blood pressure dropped slowly as well as his heart rate. We encouraged him on "steady, good job..." like a champion reaching the finish line. And he did so well, leaving us peacefully, slowly, steadily.

At 18:18 his heart stopped and at 18:25 he was pronounced dead.

His body is gone, but Min Ser immediately lives on with Jesus in Paradise. No more pain, no more suffering. He is blessed.

We were broken. Tearing, crying, missing him.

I kissed his hand and whispered "Good bye dearie, for now. Till I see you again."

Min Ser is in a better place

Dear friends,

Min Ser has gone home to be with the Lord at 18:18pm today. He has fought the good fight, he has finished the race, and he has kept the faith until the very end.

His wake service will be on:

• Thursday, 3rd July 2014, 8.30pm &
• Friday, 4th July 2014, 8.30pm

at

Nirvana Memorial Center
No. 1, Jalan 1/116A,
Off Jalan Sungai Besi,
57100 Kuala Lumpur, Malaysia

Very critical condition

Dear friends, Min Ser's condition now is unstable, heart rate is really high, kidney function, blood sugar levels & blood pressure is not good.

Doctors says his body may only tahan hours or maybe days. Doctors have given him the best they can give.

24 hours in ICU

Min Ser has made it through his first night in ICU smoothly. He has been in stable condition. A bronchoscopy was done this morning to see the condition of his lungs. Will follow up tomorrow to see how's the status. He is currently pretty much on life support, as he can't breathe on his own. A tube is inserted into his mouth and oxygen is flowed in via a tube. He will be perpetually unconscious until his condition improves. Ie: white counts come up, and fungal infection subside. His pulse has been around 127-132 bpm, it shot up to 150-160 bpm, but seems there is no cause for alarm.

White cells were collected from Sue Min today. It will be stored first, and the docs will decide when to use it. Reason why it was not done earlier is because it has not been proven to make a difference in aiding the recipients own immunity, but since Min Ser's condition is critical, they might as well try. Timing has to be right, as injecting her white cells could cause the infection in the lungs to be more inflamed, so the doctors will time it to be injected once the infection has somewhat subsided.

Yesterday afternoon was really difficult for the family as he was really having trouble breathing with pulse rate up to 192 bpm at some points. At one point he even seemed to be unaware and losing muscle function, many family members were waiting in and outside the room, as the situation was indeed very critical. 

After one hour plus of heavy struggled breathing at 180 bpm, we propped him up further and it seemed to help. He even started shouting to push him forward (muffled shout through the oxygen mask to be heard) to keep his position supported and to help support his head (as it was tiring to lift his head on his own). 

It seemed ages before his heart rate started to slow down to 160 bpm and he became much aware and alert again. He mentioned the word "worship" and we started singing songs of praise and worship to God. He asked us to continue, and then asked us to sing softer, and then after half an hour he said ok enough (everyone take a break). All via hand gestures (it is really hard to speak through the oxygen mask). 

Once aware again, family members and friends would come into his line of vision to show that they are there. He would give his thumbs up with his right hand (to show he is ok now), and with his left he will point to the heaven. He means "Trust in God" as he would do that gesture and say "Trust in God" whenever he has high fever, etc.

It was really good that his condition stabilised as that allowed the doctors to prep him for tube insertion before wheeling his bed to the ICU around 7pm. I was allowed to hold his hand as they sedated him to sleep. Once he was asleep, I left the room to allow the docs to do their thing.

Two things I was really grateful for yesterday:

1. Jo saw and interacted with Min Ser (just before his heart rate spiked). Kids below 12 are typically not allowed into the ward, but they made an exception due to his critical condition. I was carrying Jo, and she was initially reluctant to go into the ward (much less his room at the end of the corridor). I tried coaxing her, but she kept saying no. Eventually with Sue Min's help we managed to convince her to go in. When she saw Min Ser with the oxygen mask she was initially afraid and kept asking to "go outside". We gave her some time outside the room, and eventually I think curiosity overwhelmed her, and she went back into the room with some coaxing. She was even happy playing and eating a burger. She called mummy, daddy, and she touched Min Ser's finger. When it was time to go, she waved bye bye to daddy, and blew a kiss.

2. Min Ser kept fighting on. I know he is tenacious, but at the face of death, even when family members were saying their goodbyes and that's it's ok to go. He was really hanging on. And by God's grace his condition stabilised. The two things I remember him saying whenever his condition was at his toughest was, "Keep fighting on (don't give up)." and "Trust in God".

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As Min Ser is now in ICU, I don't stay in the hospital anymore. I'm allowed to see him during the designated visiting hours from 12.30pm - 2pm and 4.30pm - 7pm. They are really strict. No wifey privileges :(

Whenever I'm in the room, while he is sleeping, I'll pray for him, read a few scriptures, and touch his arms. His friend brought a mp3 speaker that is playing some worship songs or the NT. I can imagine he is having some peaceful dreams while he is sleeping and hoping he is having a real good time communing with God.

That being said, lets pray for his lung infection to subside and to clear out, white cell counts (especially the neotrophils) to go up, and all other major organs (heart, liver, kidneys) to be strong and function normally. Pray for his condition to improve rapidly.

Critical Condition

Dear friends,

Min Ser will most likely be admitted to ICU today. He has trouble breathing unaided as the fungal infection in the lungs is quite serious now. It was difficult to breathe, but now better on a respirator. Doctors will monitor him on the respirator and decide when to put him into the ICU. Once in ICU they will insert in a tube for oxygen and will put him under anesthetic so as not to exert his lungs. That being said there is a 1 in 3 chances he may not make it through the first night in ICU.

His white cell counts especially the Neotrophils are still at 0. The anti fungal medication can only sustain him until the white cell counts recover but even on the strongest anti fungal medication, the infection in the lungs has spread. The goal of putting him in ICU is still for his white counts to recover to counter the infection.

His family is now with him to spend time with him. Doctors ask to be prepared for the worse case scenario, but we are still praying and trusting that Min Ser will pull through. Ultimately, our lives are in our Father's good hands.

Day 38 - fungal infection

Latest blood culture shows signs of yeast, ie: a fungal infection. The infection can effect major organs (liver, kidneys, heart) or the eyes. An eye check will be done today and a CT Scan tomorrow. Treatment of anti-fungal meds is based on severity. It can be anytime from 2 weeks (no infection in organs) to 2 months (infection in organs).

He still has fever on and off even though he is on paracetamol every 6 hours. When he does not have fever, it's a good day, and he feels fine and can eat. On high fever days, he will just want to try to sleep. Yesterday was a good day. This morning, not so good, with temperature of 40.8C

Based on today's blood counts still no change. Overall white blood count is 0.2, and Neotrophils are at 0.0

Continue to pray for recovery of Neotrophils & no fungal infection in his organs.

Day 34

Based on today's blood test. No change in Min Ser's white cell counts. Still the same as Monday's. I think it's either 0.0 or 0.2

His fever was under control these past two days and he felt better this morning, but there was a spike tonight. He still has dry cough and appetite is not that good, but he has been back on semi solids for the past two days.

So yeah, just keep praying for progress. For the neotrophils in his white cells to be created and multiply quickly.

Day 31

So just a short update, there hasn't been any progress in Min Ser's white cell counts and he is still purely only consuming Ensure and light fluids.

He also still has high fever daily and is sleeping all the time. These conditions should slowly resolve itself when his counts go up. Next blood test will be on Thursday.

Day 29

Based on today's latest blood test, there is so far no progress in Min Ser's blood counts. Doctor did mention though that post transplant recovery from chemo takes longer then it did pre-transplant. So yups, nothing much we can do now but wait and pray.

Min Ser was relatively fever free yesterday except for a spike of 40C last night. Not sure what's causing the spikes. But doctors are monitoring him.

So maybe it'll take another week plus

So ok, Dr Chang just came in, and he mentioned that it may take another week or so before he can be discharged. Mainly due to the fungal lesions on his legs hitch may need monitoring and continuous anti fungal meds. Either way Min Ser is ok to stay as long as he is well.

He still can't really eat solids yet as he is still having lack of saliva. So he is still on liquid diet. He took six cups of Ensure yesterday, and felt pretty full on it.

Day 28 - Feeling better

Min Ser feels better this morning. Which is a good indication that his white cell counts are on the rise. So far no fever this morning, since yesterday's spikes of 40C fever.

Leg cramps are slightly better but still hard to walk. Good news though, there will be a blood test done tomorrow, so we don't have to wait until Monday. In fact, if his counts are significantly higher, that is 1.0 and up, he may be discharged tomorrow, if not then highly likely Monday. All in all, it's dependent on his white cell counts.

Thank you all for praying, do continue to pray for recovery of his blood counts. Especially the white cells and the platelets (which has also been on the low end).

Stuff I do in the hospital

This has been the longest chemo cycle yet. It's rare to not have progress in his counts for more than a week.

I've been pretty much living in the hospital. I've been sleeping here and bathing here since two Sundays ago, having taken a break day last Friday.

Initially on the first 2 week, I had two break days a week, but lately our other caregivers are either busy or not feeling too well.

But the way I see it, any break day at all is a bonus and not given. Primarily because there really is no one else who should have to play this role. As a wife, when I vowed to be true in good times or in bad, in sickness or in health, I should very well mean it. Plus Min Ser is most comfortable with me around when he is feeling really crappy.

So anyway, this post is about what I do in hospital as I get asked this question pretty often.

Well, besides the caregiver role like making drinks, feeding the drinks, helping him change and towel down when feverish, monitoring his drips to call the nurse once it's done, fetching and cleaning the urinal when he needs to pee, supporting him to the bathroom when he needs to go...

I also still try to do some work. I market the properties I have on hand and have helped clients access their financial ability to take a mortgage. But... needless to say, I had to intentionally slow down especially when it comes to servicing new property marketing leads. But I still managed to arrange a couple of viewings since I've been here, as and when it lands on my break day, or when Min Ser's dad is in the hospital, and I can go out for a bit. On break days, if there are no viewings, I will spend time with Jo.

Besides work, recreationally, I read; The Bible, books, websites, Facebook articles and posts (hmmm... does FB count as reading)?

I watch videos on YouTube. I also play the occasional games on my iPad.

I've also been updating my social networks on Pinterest, Linked-in, and may consider reviving my Instagram and Twitter (hmmm... is it considered reviving when it has always been pretty much dead).

So... recreationally, I'm basically doing stuff I don't easily get to do on a regular 'working mum who takes care of her own kid' days.

Day 27 - Pray for white cell counts

In this ward, blood test to monitor cell counts are taken on Mondays and Thursdays.

As of today, his counts are still low. His white cell counts has been 0.2 since last Thursday. Normal count is 4.0 and above. So no progress in the past 8 days. It is imperative for white cell counts (especially the neutrophils) to increase in order for overall blood counts to recover.

Once his white counts recover, his femoral line can be removed.

Min Ser is also feeling quite discouraged as he feels horrible. He has been trying to be positive but today is tough, especially as his white counts has no signs of progress.

He has been having fever almost everyday for more than a week (range from 37.7 - 39.7) and finds it hard to rest especially at night so he tries to sleep most of the day.

Today his throat is very dry, and he coughs at night. He doesn't feel like solids now and will just drink Ensure or other fluids. His taste buds are gone, food has no taste, except for slight sweetness.

His calf muscles are cramp and he cannot walk, and hurts at times when he moves his legs. He also has mild spots of gangrene and candidiasis. Docs are aware and is covering with lots of antibiotics and anti fungal meds.

So that's his condition as of today. Thanks for all your prayers. Today onwards, primarily pray for his white counts to go up. The blood test will be taken again on Monday. Thanks!

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Below is Min Ser's prayer request yesterday, which explains some other details:

Discovered a fungal and bacterial infection in my blood that's causing fever and minor gangrene in legs and some skin swelling.

These specific infections tend to colonize the IV tube that is inserted into my inner thigh (there is a layer of bio-protective gel that prevents the medicine from reaching the bacteria/fungus).

The IV tube is needed to administer antibiotics and blood transfusions. A new tube was inserted on Mon, but it's a matter of time before new one gets colonized again.

The best solution is for my own white blood cells to start multiplying again to fight the infections. Interestingly, the doctor today told me with a smile to say a big prayer for my white cells to come up :)

Thank you.

Day 18 of Chemo Cycle

It's been 18 days since chemo started. Min Ser's blood counts are at the lowest, been so for a few days now. It is expected due to the strong dose of chemo and his counts may take a week plus to come back up. We also notice his hair starting to drop today.

He's been having platelet transfusions almost every other day and blood transfusions too when needed.

He has been having fever for the past few days though on antibiotics and anti fungal. Doctors are monitoring for signs of infection with blood cultures and also monitoring antibiotic levels (so they do take blood pretty often).

So far no obvious signs of infection or chemo effects as he can still eat and sleep relatively well despite the fever. He is coping pretty well actually. If he is not sleeping, he spends time reading the bible. He has almost completed the NT, now running through the gospels. He also plays games on his iPhone.

So nothing much to do now besides wait, pray and hope.

6th Day - Current Cycle

Yesterday was the last day of the five day chemo regime. Min Ser has been taking it pretty ok thus far. He eats, though small portions. He still feels hungry, which is good. But he is requesting for lighter meals tomorrow onwards. We have been blessed with home cooked meals every lunch and dinner. Primarily for Min Ser, but there is usually more than enough for me too. Our dear cooks and food deliverers are the in-laws, relatives, aunties and folks from church.

He feels tired and rests most of the time, no obvious or adverse chemo effects as of today. Doctors have doubled his GCSF jabs, as his counts are expected to drop rapidly. The drop and recovery is expected to take 3-4 weeks post chemo.

Chemo Regime

Chemotherapy started in the afternoon.

The regime is five days of Fludarabine 30mg/m2, AraC 2000mg/m2 and Fligrastim (G-CSF) 300mg/m2 shots every night. Mixoxantrane 8mg/m2, for 2 days.

So far so good. His cough has subsided quite a bit, and he feels not too bad today. Appetite is ok.

Mixoxantrane

Malaysian Stem Cell Registry

Sue Min and I paid a visit to the Malaysian Stem Cell Registry (MSCR) yesterday. Well, there's been a nagging thought on my mind this past few days. I felt guilty having procrastinated on registering as a stem cell donor as I've been meaning to, but just never put the effort into it.

But every since realising that Min Ser very well needs another full match, I felt compelled to register as maybe I may just be someone's full match as well. So I called to come in at 3pm, and Sue Min kindly offered to accompany me as mum was with Min Ser.

I had already called in the morning once Min Ser was admitted into the ward. I called the number provided on the brochure. Initially the receptionist wasn't sure what I was asking for, when she finally mentioned "daftar stem cell donor" and I said "Yes!". I was then asked to hold, and was passed through 2 persons, and the last person gave me another number to call with a direct extension (number at the bottom of this post). I tried calling the number but it was engaged. After the 5th try, someone picked up. As it was a Friday, they were closed from 12 - 2.45pm. So I mentioned I'll come in at 3pm. Operating hours are from 8am - 4pm.

MSCR is at Institute for Medical Research on Japan Pahang, just beside Hospital KL (it's on Waze). The grounds are big, but the road is really narrow, with no empty parking spaces! Sue Min was in the car when I went up.

I was to find the "Bilik Gerakan". Asked the first persons I saw, but they didn't know where it was. Eventually called the number (at the bottom of this post) and was directed to the floor above the "Makmal Haiwan". (Yellow arrow in the pic below indicates roughly where the room is).

Location of the "Bilik Gerakan"

MSCR

The "Bilik Gerakan"

Goody Bag

The "Bilik Gerakan" is basically just an office. With files and desks. I was asked to fill in a form with my contact information and a 'yes-no' questionnaire (likes the ones you fill in when you donate blood). 10ml of blood was collected, and then done! Pretty fast. As we still had time on our hands, Sue Min thought she might as well register. It seems that even though she has donated before, she is not automatically on the registry. So she went up as I waited in the car for her.

Unfortunately, there is less than 24,000 people on the Malaysian Stem Cell Registry to date. And it seems so far 7 matches were found and arranged.

It takes a month to be on the registry as they are short of staff and the lab takes time to categorise the blood sample.

If you are 18-50 years old, in good health, and reading this, although inconvenient, please do make the time to register. You may never know that you may be able to save someone's life.

Contact Details:

Malaysian Stem Cell Registry

Institute for Medical Research

Jalan Pahang

50588 Kuala Lumpur

03 2616 2581 (Bilik Gerakan)

03 2616 2666 (IMR)

GPS: 3.169633, 101.698809

Admitted Today

We're in the hospital now, just admitted. The hospital arranged a nice spacious single bed room in ward 8B for Min Ser.

A femoral catheter is now being put in place to easier deliver chemo and meds as his peripheral veins are shrunk due to the previous rounds of chemo.

Thank you for all the prayers support and love. We know it's sad news for many as well as he was doing well, and the turn of events is really quick sudden.

It's a tough time for us as a family and different ones are helping in different ways. My parents are taking care of Jo to free Min Ser's parents to visit everyday if they want to. Needless to say, they are taking it the hardest. As a parent myself I can truly understand. Our children will always be our baby no matter how old.

Though the situation seems grim, there is always hope and God has personally given me the peace that everything is in His hands, and we will be ok.

Not so good news

I have some bad news. Min Ser's leukemia has relapsed, and quite aggressively too. 35% in his bone marrow since a month ago when it was at 0%.

We met with the doctor today at Ampang Hospital and the steps to remission are basically chemo first and then another transplant from a new donor. Conditioning pre transplant has yet to be decided as Min Ser can't take another total body radiotherapy. Chances of remission post 2nd transplant are 20-30%.

Min Ser has decided to go ahead with chemo first. We've pretty much prepared for the bleak possibility that he may not make it to full recovery, but also hoping for the best, knowing God has and can perform miracles.

Min Ser will be admitted sometime this week or early next week.

Do keep us in prayer:-

1. That Min Ser will make it through the cycle of chemo. Stronger then previous cycles. If mortality rate then was 5% now will be 10%. When before, recovery for his blood counts would take 2 weeks, this cycle will take a month.

His body is also weaker now with persistent cough and his platelet count has also been dropping. We asked if it would be advantages to wait till he recovers before going for chemo, but due to the aggressiveness of the leukemia, he may not recover significantly. Doctors suggestion is to do chemo as soon as possible.

2. To find a full bone marrow match amongst the International community. Preferably somewhere within the region. Ie: Malaysia, Singapore, Taiwan, Hong Kong or China. The percentage of finding a full match is 50%.

3. Doctors to come to an accurate decision on conditioning treatment needed for bone marrow transplant.

Relapse!

Some not so good news. Min Ser's latest biopsy from the EUS and the latest bone marrow test indicates there is a relapse.

Initially it was suspected GVHD, but after a more thorough staining was done from the biopsy, on Friday we got the news that the biopsy shows traces of myeloid sarcoma (chloroma) the same cancer cells caused by AML. Last Friday itself, Min Ser had a bone marrow test in Ampang Hospital, and we got the news today, that a relapse was confirmed.

As tomorrow is a public holiday, we will be going into Ampang Hospital on Wednesday to discuss the next course of action to be taken. Keep us in prayer!

Bone Marrow Test tomorrow

Min Ser has been discharged from SJMC. Result from today's EUS (endoscopic ultrasound) tissue samples are not out yet, but according to our doctors, the swelling seems to have lessen, and it does not appear to be an infection or tumour like. Which is good to know. Though it still does not explain what has caused the swelling. Thus a more comprehensive biopsy result should help.

So... based on the process of elimination, that would leave GVHD (graft versus host disease). Which is not unlikely to happen, and according to our haematologists, some GVHD is not a bad thing.

But before we start treating for GVHD, Min Ser will be undergoing a bone marrow test tomorrow at Ampang Hospital. This will be his 4th bone marrow test post transplant. If this BMT + today's biopsies from the EUS rule out a relapse, then the doctors can focus on treating for GVHD.

All in all, it's been a long week in hospital, but glad that we are coming closer to treating the problem. As usual, praying and hoping for the best!

Still Undiagnosed

Biopsy result for the samples taken on Wednesday came out yesterday. There is no signs of tumour cells, but the mystery causing inflammation in Min Ser's bile duct and stomach is still undiagnosed. The only thing noticeable is that there are a small amount of lymph nodes near the bile duct. Though it could even be lymphatic vessels (not very clear from the CT Scan). There is also slight thickening of the stomach lining.

Initially the next step was to conduct an EUS — endoscopic ultrasound to collect better tissue samples. But the plan has been revised to have a PET Scan first Monday morning. This will help isolate the kind of lymph nodes there are. An EUS may still be needed, but that is pending on the PET scan results.

So yes, it's still a mysterious ailment at this point. The doctors have yet to rule out a relapse, and are also keeping TB in mind.

Min Ser has been having slight spikes of fever. He also feels hungry often, but can't eat much at one go. He finds it hard to sleep at night as he is itchy as he has been having skin problems even before this incident (previously eczema now some slight fungal skin infection), but jaundice has also been known to cause itchiness.

He is now on antibiotic drips, panadol, anti-fungal cream for the skin, and the usual cyclosporine.

Jaundiced again

We are now in hospital. Min Ser is currently resting from some procedures done. What brought us here? Well continue reading...

Min Ser presented signs of jaundice last weekend. This was how we discovered the tumour related to leukemia last year. So on Monday, we went to Ampang Hospital for a blood test & liver function test. Blood test result were normal, but liver function test confirmed that there is something causing the jaundice. Dr Chang mentioned that we should get an ultrasound done, and probably an ERCP (scope) to insert a stent and collect biopsy samples of affected areas. We decided to do these procedures in SJMC as the earliest ultrasound slot in Ampang Hospital was 7th May.

Min Ser was admitted to SJMC on Tuesday morning, having made an appointment with Dr Sharmila (the gastroenterologist we consulted with last year). An ultrasound and CT Scan was done. The scans show that the bile duct was indeed tight causing the ducts in the liver to be dilated.

An ERCP was done yesterday, stent inserted, and biopsies taken. Biopsy was taken from the bile duct area as well as the stomach. The stomach didn't look healthy. It looked raw and inflamed (I watched the video of the procedure. I'm not a doctor, but can tell that it doesn't look good) over isolated areas.

After the ERCP, Min Ser was in quite a bit of pain due to the stent. He was given painkillers, but as a precautionary measure an X-Ray was taken. 1 of the 3 X-Rays initially indicated that there may have been a perforation in his stomach/intestine caused by the procedure, which would unfortunately require surgery to stitch back. Thankfully after a follow up CT Scan, the scans shows that there was no hole, so no surgery required.

As of today, the results and the procedure has been somewhat similar to what we underwent last year. The only difference is that his stomach is effected. We can only wait for biopsy results to be out earliest tomorrow, or Saturday.

If it's tested positive for myeloid sarcoma, that would mean there has been a relapse (seems it's still possible to have an extra medullary growth before it is detected in the bone marrow). In this scenario steps will be taken to get back into remission. If the test is negative, then an EUS may be scheduled for more biopsy samples to be taken to diagnose the problem.

So now, just rest, wait, and pray for the best results.

News Breaking Week

I've been meaning to update earlier this week, but procrastinated until now, which worked out well as the issues I wanted to blog about have pretty much come full circle within this week itself.

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On Mon (17/3) we went for Min Ser's regular check up and was informed that based on the previous bone marrow result done 13th Feb, there may be a 0.1% blast cells/cancer cells. The result was from a flow cytometry test, which can detect the smallest denominator of 0.1%. A microscope can only detect blast cells at 1% or more.

It could be a residue or a possibility of relapse. His cyclosporine medication was immediately cut from 100mg to 50mg to allow the donor's stem cells to be more aggressive. It seems in most cases with such a minuscule percentage the body's own immune system would purge the foreign cell. At that point nothing could be certain until another bone marrow test was done on Wed.

On Wed (19/3) a routine bone marrow sample was done, and we were told to come back on 31st March for the results. The hospital will run another flow cytometry test, and if it the result is clear (ie: no weird cells) then most likely the previous test had detected something else or a residue. As the time lapse between two bone marrow tests would be about a month, there would be a clear indication if there was some form of relapse. So there was nothing much we could do but wait for the results.

Friday (21/3). Min Ser received a surprise call from the hospital. They rushed the test and the results were clear (negative). No detection of any blast cells! Such a relief. As there Min Ser is now in the clear again, and nothing alarming was detected. The next appointment is pushed to April.

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So many things to be thankful for! A clear result the second round, Ampang Hospital taking the initiative to get the results of the bone marrow test so quickly (it really save us two weeks of uncertainty) and lastly, the reminder that life is truly fragile and to savour it.

Just yesterday, Min Ser wrote an article to some of our local newspapers, thanking the medical profession especially the good people at Ampang Hospital. Without even indicating that they would use his article, the malay mail immediately uploaded his article to their online site. You can read the article here.

Fever and Flu

Since Saturday night Min Ser has been feeling quite unwell with fever and headaches. Due to recent bout of dengue cases, just to be safe, we dropped by Ampang Hospital for a check up.

Blood test results doesn't point to dengue, plus the fact that he has flu like symptoms suggest it was probably just that, a flu bug. He was given directions to get lots of rest with 3 days MC. A stronger antibiotic was given along with flu medication.

On the upside, we were told that the bone marrow test done two weeks ago was good! So this is definitely something to be happy about despite his condition today.

Thanks to our cell members for praying, we were really hoping it wasn't anything serious.

Another Bone Marrow Test

Today a bone marrow test was done. This is the second test Min Ser has had post transplant. As usual, we checked into the day care ward at Level 3, and waited for the sample to be taken.

Three other patients were there for the same procedure, but curiously, we noticed that if not requested to be put under, the doctor will only use local anaesthetic. It was so pitiful to hear some of the patients in so much pain during the procedure!

When it was Min Ser's turns he definitely asked to be have general anaesthetic. We never knew it had to be requested, as he never did. Thank goodness he didn't have to suffer like the other patient.

One hour after the procedure he was ok to get up albeit a little drowsy. We had lunch and then waited to see the doctor to prescribe more medication and to head back home. Everything went smoothly today, and that's a good thing.

By the way, for those following this blog, you will realise that I have been updating this blog less frequently as Min Ser slowly recovers. This blog was initiated with the intent to update concerned ones on Min Ser's condition. If you are interested to read my other musings less hospital related, do feel free to follow my postings here.

Moving On To 2014

Post two new year celebrations, and I'm finally updating this blog again. Sorry for the long hiatus, some may be wondering how things are. Haha, hope you'll all agree that sometimes no news is good news.

Thank God it's 2014. Sometimes the events of 2013 seem so unreal... and yet it was the total opposite. The anxious moments, the long hours in hospital, just waiting, hoping and letting each day pass, praying that tomorrow will be a better day. It was all too real. Yet now that it's 2014 and being able to see things in hind sight (as Min Ser's condition improves day by day) we are somewhat thankful for the experience. It helped us to see life in a more balanced perspective, just to be thankful for simple things like... life, family, and friends. A reminder not to fret the frivolous things, do our best in all that we can, and then just live life because really, some things are just out of our hands. It's times like this it is comforting to acknowledge that there is actually a God that is good.

Min Ser has thoroughly enjoyed the Chinese New Year celebrations this year. Eating and just chilling out. To think it was exactly the same time of the year, last year, when the whole hospital episode happened. He is truly thankful to be able to celebrate CNY this year.

As of today, he is still taking anti rejection medication twice a day a.k.a cyclosporine 1.25mg per dose. Slowly tapering off, but it will take time before he will be completely off the medications. Min Ser's next check up will be next week, 13th Feb. Another bone marrow test will be done to check the progress of his transplant. Praying for good news again!