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.