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!

Mid December Update

It's been two weeks since Min Ser has been commuting to work. And so far so good. Mentally and physically, he is able to keep up with the work load. He has even started playing ping pong again (there's a ping pong table at work). He can now 'tahan' through 3 games and sometimes manages to win one (or two). He is eating well and sleeping well.

Some have asked me when will you know he is clear and well. Well technically, he is already cancer free, and well. The key is now the milestones. The longer he stays clear, the higher chance the cancer will not return. So we will celebrate each milestone. 6 months, 1 year, 2 years, 5 years, and 10 years. By ten years, his odds of relapse will be as like any healthy person.

On my end, I've been working as a Real Estate Negotiator/ Property Agent since November. I've set up my own website at www.realpropfolio.com, and I also market on our popular Malaysian property sites. It's almost two months in now. There's been numerous viewings, many new places, and I've met so many new people! It's definitely a very interesting venture, albeit one that requires much patience.

Many have asked me why real estate, I mean... graphic designer to real estate negotiator? I'll say why not? The decision was to start from scratch picking up clients and projects as a freelance graphic designer, or to venture into something new. Though that being said, a graphic designer's skill set is never wasted, it really can be used in essentially any industry. For me, it has been an important arsenal for marketing and advertising properties. 

In addition, I'm ok meeting new people, I already like viewing houses, I don't mind travelling, I am relatively patient, I don't give up easily, plus the flexible hours still allows me to take care of my 2 plus year old daughter. I just have to work out an arrangement for someone to take care of her when I have appointments. Almost two months in, no regrets. I'll take each day as it comes, and see how it goes from here. Wish me all the best people! : )

Hickman Line Removed

Min Ser's Hickman Line has been removed. Doctors say there was no reason to keep it in since his condition is good, and he has not needed transfusions since he was discharged from hospital post transplant. Though this will mean he will need to be needle pricked to draw blood for subsequent check ups (which nobody likes). Next check up will be on 30th Dec.

All in all, he is doing well, and looks fit to start commuting to work tomorrow.

3rd PET Scan

Thank God Min Ser is free of the shingles. He has finished his dose of anti viral medication and thankfully it was under control at an early stage.

As of today, Min Ser has undergone a 3rd PET scan at SDMC. This PET Scan will assure us that the 2nd PET Scan results remain consistent. Ie: no more cancer cells or deposits. The results should be out by next week.

Just to note though, Min Ser had some reaction post PET Scan. He was shivering badly and had high blood pressure and slight fever. After taking some panadol and resting at the ward the effects subsided. According to the doctor and nurses at SDMC, they have seen it in post transplant patients before, a possible reaction to the dye ingested during the procedure. 

Bone marrow results

The bone marrow results are good! No traces of leukemia cells which means Min Ser has responded well to the transplant.

On the other hand, he has contacted a viral infection, commonly known as shingles (herpes zoster). But thankfully, it was discovered early and is under control with anti viral medication. Seems it does happen to post transplant patients, plus Min Ser was having flu syndromes before this happened.

Jo is also sick, down with cough and flu. Plus she can't stay with us as shingles can cause chicken pox too. So she'll be with my in laws until he recovers.

Thankfully I'm still healthy! :) Praying I'll continue to be so and hubby and daughter recovers soon.

Day +101

We've passed day 100! This is the first milestone reached! Next would be 6 months!

Min Ser had his bone marrow tap today. This is to draw some fluids from his bone marrow to monitor how well he has responded to the transplant. The test will be able to determine how well Sue Min's stem cells has grafted to Min Ser. Test results should be out in 10-14 days.

His cyclosporine medication was reduced from 200mg to 175mg today due to indication of high cyclosporine levels in his blood test. Too high level is not good for the kidneys and too low level can lead to rejection. Thus the dosage has to be just right for each individual.