It's amazing how quickly events are unfolding. We managed to get two appointments with two haematologists in Singapore. One with Dr Daryl Tan at Raffles Hospital, Monday morning (recommended by Dr Haris) and one with Dr Tien in Singapore General Hospital, Friday afternoon. The SGH appointment was arranged through a friend of a friend of a friend, otherwise it would have been difficult to get an appointment with the head haematologist of SGH blood bank at such short notice.
It is also possible to do a fresh biopsy in Raffles Hospital. If we drop samples in for biopsy, fresh results will be out for Monday morning's appointment.
Flying off tomorrow evening. Praying for clarity and a clear diagnosis.
Thursday, 28 February 2013
Wednesday, 27 February 2013
We have an appointment with Dr Chang
Thank God! A relative of Min Ser has a friend who works in Ampang hospital who has helped us arrange the earliest appointment with Dr Chang on 6/3 (Wed). This helps a lot as we are very likely to do treatment in Ampang Hospital if the diagnosis is 100% accurate
Tuesday, 26 February 2013
Bone marrow sample taken
Procedure went well at SDMC. And relatively quickly too. We arrived before 2pm and were out before 5pm. It's a relatively straightforward procedure, though Min Ser was under general anesthetic. Bone marrow sample was taken from his left hip, and he does not feel any pain. But he was really very drowsy right after.
Our next step is to get an appointment with the very sought after Dr Chang, head haematologist at Ampang Hospital (leading hospital in Malaysia for blood related cases) and also to arrange for second opinion in Singapore. We managed to get the referral letters today itself.
Our next step is to get an appointment with the very sought after Dr Chang, head haematologist at Ampang Hospital (leading hospital in Malaysia for blood related cases) and also to arrange for second opinion in Singapore. We managed to get the referral letters today itself.
Sunday, 24 February 2013
Second biopsy concurs
The second biopsy from duodenum during the spy glass procedure was found to be granulytic sarcoma, which confirms what was found from the first sample. Brushings from the bile duct area was discovered to be inflammation, but it could be a false negative. In any case, as it's looking more and more like an extramedullary tumour we won't be treating the tumour itself, but the cause: ie leukemia.
Next step, bone marrow sample on Monday.
Min Ser has also been discharged from Selayang Hospital. Phew, we weren't sure when it would be and didn't want to delay the next procedure later than needed. He is still doing well, but getting weaker, and he has a bad ache in his left shoulder and back that is keeping him awake.
Next step, bone marrow sample on Monday.
Min Ser has also been discharged from Selayang Hospital. Phew, we weren't sure when it would be and didn't want to delay the next procedure later than needed. He is still doing well, but getting weaker, and he has a bad ache in his left shoulder and back that is keeping him awake.
Saturday, 23 February 2013
Enjoying Selayang Hospital
Hmm... never thought I'd use the word enjoy and hospital in the same sentence. But Selayang Hospital has a beautiful private ward (bayaran penuh). It's almost like a hotel. The single room is huge, and there is a complimentary guest bed for sleepover (which is comfy!). More than double the size of SDMC and almost half the price! Malaysia boleh.
We are just taking this time to rest, and taking a break from all the nonsense (yes, it still doesn't make sense why this is happening). Min Ser is still being held for observation as he has fever fluctuating from 37.2 - 38.9 celcius. Nothing alarming, just precautionary measures.
It helps that Min Ser's aunt stays just a stone's throw away, and she has been kindly cooking most of our meals (sadly, the hospital food in selayang is not very good). Again, we are so thankful for our parents and relatives. And the constant smses from friends. It is so encouraging to know we are remembered and that many ones are praying for us.
We are just taking this time to rest, and taking a break from all the nonsense (yes, it still doesn't make sense why this is happening). Min Ser is still being held for observation as he has fever fluctuating from 37.2 - 38.9 celcius. Nothing alarming, just precautionary measures.
It helps that Min Ser's aunt stays just a stone's throw away, and she has been kindly cooking most of our meals (sadly, the hospital food in selayang is not very good). Again, we are so thankful for our parents and relatives. And the constant smses from friends. It is so encouraging to know we are remembered and that many ones are praying for us.
Thursday, 21 February 2013
Spy glass
Selayang Hospital and SDMC is really different. Finding a parking in Selayang Hospital is difficult, the wait is long and the professionalism is lacking. Yet, the experience is balanced off by the slight 'entertainment' provided by the people in the waiting room and nurses. Haha, maybe I'll post more details on the comical side of things, on a later date.
We left home at 6.30am and arrived Selayang Hospital slightly before 8am. Min Ser entered the preparation area at 10am and procedure started at 11.30am. By 1pm the procedure was done, and by 4.30pm he was wheeled to his ward. All in all, a smooth procedure.
Both Dr Sharmila and Dr Krishnan concur that the lesion in the bile duct area and the duodenum look similar through the spy glass. Brushings of the bile duct and a 2nd sample of the duodenum ulcer was taken. Our appointment for haemotologist Dr Haris was set for Sat morning. If we were to rush the samples to pathology in SDMC in person, we will be able to get the results out by Friday. We realised what takes 2 days for results in SDMC will take 2-3 weeks in Selayang Hospital. Though the procedure which cost us 8k+ in SDMC, costs us RM300 in Selayang (and this is with the spy glass procedure included). If we had a government clinic referral, it would have cost us RM30. The disparity is alarming, it seems that every citizen in Malaysia will be able to receive adequate health care, if they have the luxury of time.
We left home at 6.30am and arrived Selayang Hospital slightly before 8am. Min Ser entered the preparation area at 10am and procedure started at 11.30am. By 1pm the procedure was done, and by 4.30pm he was wheeled to his ward. All in all, a smooth procedure.
Both Dr Sharmila and Dr Krishnan concur that the lesion in the bile duct area and the duodenum look similar through the spy glass. Brushings of the bile duct and a 2nd sample of the duodenum ulcer was taken. Our appointment for haemotologist Dr Haris was set for Sat morning. If we were to rush the samples to pathology in SDMC in person, we will be able to get the results out by Friday. We realised what takes 2 days for results in SDMC will take 2-3 weeks in Selayang Hospital. Though the procedure which cost us 8k+ in SDMC, costs us RM300 in Selayang (and this is with the spy glass procedure included). If we had a government clinic referral, it would have cost us RM30. The disparity is alarming, it seems that every citizen in Malaysia will be able to receive adequate health care, if they have the luxury of time.
Wednesday, 20 February 2013
Leukemia?
We arrived early in SDMC. Spoke to Dr Sharmila for a brief moment. She pretty explained what she spoke through the phone yesterday, but she felt sorry that he "Had to be so rare, and that as doctors they are still constantly learning".
We were then referred to a Dr Haris, consultant haematologist. He kindly but clearly explained that the tumour found in Min Ser's duodenum was granulytic sarcoma (chloroma) which points to the cause being a form of leukemia (AML to be exact) and not lymphoma. The rare part is for a tumour to form outside the blood before showing signs in the blood. As of today, Min Ser's blood counts are still normal, save slight anemia. Even rarer for it to appear in the gastrointestinal tract. Usually it's found in the skin or other major organs.
He suggested that as there is still some time (it has yet to manifest in the blood) we might like to have 2nd or 3rd opinions, and even fresh biopsies of the sample. Dr Haris does not recommend any treatment until we are 100% sure of the diagnosis. For the very reason that there is no localised trestment for leukemia. The treatment itself carries risk of mortality caused by infection. This is because the treatment is crude and untargeted. Killing the cancer cells involves killing the healthy cells completely. Leaving him with no immunity. But his advantage is that he is young, and likely to have less complications.
In the meantime we will still proceed with the spyglass procedure tomorrow, and a bone marrow sample will be taken the next Monday for a clearer picture.
We walked out feeling numb, yet calm. The diagnosis just kept getting worse and worses, but I felt that God has already told me in my heart that the diagnosis wouldn't be something simple. Yet hoping for the best and not wanting to be negligent, we will proceed to arrange for more opinions.
We were then referred to a Dr Haris, consultant haematologist. He kindly but clearly explained that the tumour found in Min Ser's duodenum was granulytic sarcoma (chloroma) which points to the cause being a form of leukemia (AML to be exact) and not lymphoma. The rare part is for a tumour to form outside the blood before showing signs in the blood. As of today, Min Ser's blood counts are still normal, save slight anemia. Even rarer for it to appear in the gastrointestinal tract. Usually it's found in the skin or other major organs.
He suggested that as there is still some time (it has yet to manifest in the blood) we might like to have 2nd or 3rd opinions, and even fresh biopsies of the sample. Dr Haris does not recommend any treatment until we are 100% sure of the diagnosis. For the very reason that there is no localised trestment for leukemia. The treatment itself carries risk of mortality caused by infection. This is because the treatment is crude and untargeted. Killing the cancer cells involves killing the healthy cells completely. Leaving him with no immunity. But his advantage is that he is young, and likely to have less complications.
In the meantime we will still proceed with the spyglass procedure tomorrow, and a bone marrow sample will be taken the next Monday for a clearer picture.
We walked out feeling numb, yet calm. The diagnosis just kept getting worse and worses, but I felt that God has already told me in my heart that the diagnosis wouldn't be something simple. Yet hoping for the best and not wanting to be negligent, we will proceed to arrange for more opinions.
Tuesday, 19 February 2013
Lymphoma?
Dr Sharmila called. Biopsy results are out and the ulcer in Min Ser's duodenum turns out to be a tumour that could point to a form of lymphoma. We need to see Dr Sharmila and a haemotologist will better explain the situation tomorrow.
Friday, 15 February 2013
Home on V day
Happy V-day! Min Ser is finally discharged from SDMC. Still slightly weak, but his digestive system has recovered tremendously and he can eat more solids. Though nothing oily, spicy...
Jo is back home too! Happy to have some normalcy back.
Spy glass procedure is scheduled for 20/2 (wed). But biopsy of his duodenum is still pending.
Jo is back home too! Happy to have some normalcy back.
Spy glass procedure is scheduled for 20/2 (wed). But biopsy of his duodenum is still pending.
Tuesday, 12 February 2013
3rd day in SDMC
He can eat semi solids now. His liver functions are slowly recovering, but there are times of extreme pain (abdomen area) and he needs the painkillers. A couple of high fever incidents as well, but controlled with paracetamol.
It's a good thing we got the single room. It's quiet, and I get to sleep over at night. Though it does get tiring after a while... SDMC only provides the plastic chairs that can be pulled out to sleep on. Though I'm not keen to leave Min Ser, I'm happy to be able to sleep on a proper bed tonight. Thanks Sue Min!
It's a good thing we got the single room. It's quiet, and I get to sleep over at night. Though it does get tiring after a while... SDMC only provides the plastic chairs that can be pulled out to sleep on. Though I'm not keen to leave Min Ser, I'm happy to be able to sleep on a proper bed tonight. Thanks Sue Min!
Monday, 11 February 2013
CT scan and prognosis
11am
He's been on slight water and drips since yesterday afternoon. He now has to drink 3 cups of water to undergo CT scan. Must be so uncomfortable. Poor dear felt so bloated after the procedure. It's like the MRI machine you see in the movies. His only complaint (besides the bloatedness) was that the hospital was using a competitors product. "GE one better". Ok, if you say so dear.
2pm
Based on CT scan results. There is no obvious blockage (tumour or stone) in the bile duct. Nothing in the gallbladder, nor is there any mass pressing in from the outside. The only cause could be something IN the bile duct. We were presented with 3 possibilities:-
1. Tumour
2. Tibi in the bile duct
3. Autoimmune pancreatitis
A Dr Krishnan, Liver Hepatic Biliary specialist from Selayang hospital (apparently it's the leading hospital in Malaysia for liver ailments) will be consulted on his thoughts.
4.30pm
We were visited by Dr Krishnan, and he ruled out option no 3 (the stricture was a bit too high in the bile duct). No 2 was very very rare, but a possibility. No 1 is most likely (if Min Ser was 60 years old, he will say it was without a doubt, and would suggest surgery.)
But because of the situation (Min Ser being 30 years old), we were presented an option of a relatively new procedure using a spyglass. A scope within a scope (ERCP), a tiny camera which would help give better on light on the lesion. There are only 2 hospitals in Malaysia which has this equipment, and Selayang is one of them.
We agreed without a doubt. We were hoping for a diagnosis that would prevent surgery.
He's been on slight water and drips since yesterday afternoon. He now has to drink 3 cups of water to undergo CT scan. Must be so uncomfortable. Poor dear felt so bloated after the procedure. It's like the MRI machine you see in the movies. His only complaint (besides the bloatedness) was that the hospital was using a competitors product. "GE one better". Ok, if you say so dear.
2pm
Based on CT scan results. There is no obvious blockage (tumour or stone) in the bile duct. Nothing in the gallbladder, nor is there any mass pressing in from the outside. The only cause could be something IN the bile duct. We were presented with 3 possibilities:-
1. Tumour
2. Tibi in the bile duct
3. Autoimmune pancreatitis
A Dr Krishnan, Liver Hepatic Biliary specialist from Selayang hospital (apparently it's the leading hospital in Malaysia for liver ailments) will be consulted on his thoughts.
4.30pm
We were visited by Dr Krishnan, and he ruled out option no 3 (the stricture was a bit too high in the bile duct). No 2 was very very rare, but a possibility. No 1 is most likely (if Min Ser was 60 years old, he will say it was without a doubt, and would suggest surgery.)
But because of the situation (Min Ser being 30 years old), we were presented an option of a relatively new procedure using a spyglass. A scope within a scope (ERCP), a tiny camera which would help give better on light on the lesion. There are only 2 hospitals in Malaysia which has this equipment, and Selayang is one of them.
We agreed without a doubt. We were hoping for a diagnosis that would prevent surgery.
Sunday, 10 February 2013
Feeling the love
All the drama has only started this past 2 days, but we already feel all the love and prayer support from friends and family. We only told a close few, but yeah, word gets around.
We always knew that we were loved, but it's in times like this, we know just how much. God has been good to us, we are constantly reminded of his character and that he loves us. But it is really through people that his love is manifested.
There's still a lot of uncertainty. We hope for the best, but also preparing for... not the best.
As of now, Min Ser prefers to rest and not to have visitors. He's still reliant on drips and painkillers for relief. He can now drink more substantial liquids like Milo and soup. Praying he recovers quickly. He needs to recover before he can undergo another procedure like the spy glass. Meanwhile biopsy results of his duodenum is still outstanding. It may only be out next week as it's still the long holidays. Sigh...
We always knew that we were loved, but it's in times like this, we know just how much. God has been good to us, we are constantly reminded of his character and that he loves us. But it is really through people that his love is manifested.
There's still a lot of uncertainty. We hope for the best, but also preparing for... not the best.
As of now, Min Ser prefers to rest and not to have visitors. He's still reliant on drips and painkillers for relief. He can now drink more substantial liquids like Milo and soup. Praying he recovers quickly. He needs to recover before he can undergo another procedure like the spy glass. Meanwhile biopsy results of his duodenum is still outstanding. It may only be out next week as it's still the long holidays. Sigh...
First day in hospital
6.00am
We were on our way to Kedah. We somehow managed to leave the house as planned, 5.30am. It was a restless night before, as Min Ser was constantly uncomfortable, tossing and turning, walking around, he said it was his gastric, and it was uncomfortable to lie down.
We were seriously considering canceling our trip and checking him into hospital. Once we saw the traffic on the NKVE we thought no way he can survive the traffic or the trip. We entered into Kota Damansara and headed to Sime Darby Medical Centre.
Upon arrival, we headed straight to the ER. Doc's conclusion after all our explanation and looking at his symptoms was... jaundice. Now we just have to discover the cause.
9.30am
He was on a wheelchair and wheeled for ultrasound and X-ray. The gastroenterologist we were referred to was Dr Sharmila. She presented the most likely cause to be gallstones obstructing the bile duct. To know for sure an ERCP needs to be done. Without further delay, has was prepared for the procedure.
11am
His hepatic ducts were very dilated due to the obstruction and high bilirubin levels. There was no obvious stone discovered, but his bile duct was very tight, it was difficult, but they managed to place a plastic stent inside his bile duct. With stent in place his liver functions should return to normal over the next couple of weeks.
An ulcer was also found in his duodenum. The suspicious part is that it isn't a clean ulcer. There are lumpy parts on the outer parts of the circumference, a sample of the area was taken for biopsy. Nothing more can be done, and a CT scan is scheduled for tomorrow.
12.30pm
Min Ser was placed in the ward for recovery, but he experienced extreme pain in his abdomen (pain level 8). He was given a dose of pethidine to relief the pain.
We were on our way to Kedah. We somehow managed to leave the house as planned, 5.30am. It was a restless night before, as Min Ser was constantly uncomfortable, tossing and turning, walking around, he said it was his gastric, and it was uncomfortable to lie down.
We were seriously considering canceling our trip and checking him into hospital. Once we saw the traffic on the NKVE we thought no way he can survive the traffic or the trip. We entered into Kota Damansara and headed to Sime Darby Medical Centre.
Upon arrival, we headed straight to the ER. Doc's conclusion after all our explanation and looking at his symptoms was... jaundice. Now we just have to discover the cause.
9.30am
He was on a wheelchair and wheeled for ultrasound and X-ray. The gastroenterologist we were referred to was Dr Sharmila. She presented the most likely cause to be gallstones obstructing the bile duct. To know for sure an ERCP needs to be done. Without further delay, has was prepared for the procedure.
11am
His hepatic ducts were very dilated due to the obstruction and high bilirubin levels. There was no obvious stone discovered, but his bile duct was very tight, it was difficult, but they managed to place a plastic stent inside his bile duct. With stent in place his liver functions should return to normal over the next couple of weeks.
An ulcer was also found in his duodenum. The suspicious part is that it isn't a clean ulcer. There are lumpy parts on the outer parts of the circumference, a sample of the area was taken for biopsy. Nothing more can be done, and a CT scan is scheduled for tomorrow.
12.30pm
Min Ser was placed in the ward for recovery, but he experienced extreme pain in his abdomen (pain level 8). He was given a dose of pethidine to relief the pain.
Saturday, 9 February 2013
The beginning
Min Ser came home unwell. He's been having brownish urine for more than a week and pale coloured stools. It's then I noticed his eye whites were yellow. Definitely not normal... googled the symptoms, and we were presented with possible jaundice. Yikes! The list of causes were from liver inflammation to liver cancer. Hep A, Hep B, hep C?
He has been having ongoing gastric for the past 2 months. Some days worse than others. This seem like one of those days.
Tomorrow is the eve to Chinese New Year! We're to travel to Kedah tomorrow. Our baby Jo is not with us either... we miss her. His situation settled after some rest, so we thought, hey... let's see what happens tomorrow.
He has been having ongoing gastric for the past 2 months. Some days worse than others. This seem like one of those days.
Tomorrow is the eve to Chinese New Year! We're to travel to Kedah tomorrow. Our baby Jo is not with us either... we miss her. His situation settled after some rest, so we thought, hey... let's see what happens tomorrow.
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