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.