So far, so good :)

Mom started taking the Lenalidomide plus Dexamethasone yesterday.
She seems fine. Sleeping well, responding to our questions.

She doesn't like physio but she puts up with it as long as there's no pain.

Let's pray that the new drugs will work wonders to supress her Multiple Myeloma and give her back her strength and alertness.

Mom gets Lenalidomide today

Her blood counts and renal profile are ok so she will start this morning. She still has a recurrent fever and the doctors still don't know why. Let's hope the Lenalidomide will work its magic to halt mom's multiple myeloma.

If you'd like to visit, now is a good time if you are healthy and germ-free!

The Lenalidomide finally arrives

The new wonder chemo drug Lenalidomide is actually in our hands now. When I finally took hold of the little packet of 21 capsules, I felt like I was holding a miracle in my hands. Yes, this is the miracle drug we have been waiting for.

It is so new that Mom is the first patient in Malaysia to get it. That's why it took so long. Mom's haemotologist Dr. Puru and the drug distributor had to submit special applications in order to gain permission to have this drug brought in. A lot of red tape that thankfully got cleared in time.

If mom's blood counts are stable, she will start taking this today. Her lung infection has cleared. Her UTI also. The IVIG worked wonders. Now she should be ready for the next stage.

As this is a chemo drug, mom may have some side effects : immunity may drop again, there may be numbness and nausea. That's why Dr Puru has prescribed a minimal dose of only 5mg to start off with. If mom tolerates this well with no side effects, then she will increase next month's dosage to 10mg. The normal dose for a healthy adult is 20 - 25 mg so Dr Puru is really playing safe with mom.

Let's pray for the best.

Sunday was good

Yesterday was a good day for mom. She was quiet and peaceful, wide awake and watching TV.

When she's having fever, she makes a moaning-groaning sound that can get quite loud. This is as accurate a gauge of her temperature as any thermometer. When she's well, no fever, no pain, she's quiet.

She didn't sleep much last night but she was quiet whole night. This morning she has slight fever. Her doctors need to confer and decide on next move.

Meanwhile, her cemented fracture seems to be healing well. She won't be able to put any pressure on that arm or lie on her left side for about one month. Apart from that, no pain :) She had a session of gentle physiotherapy yesterday. Just to gently move her elbows, wrists and fingers on both hands and both knees. This is to prevent her from completely stiffening up.

Ok, last week ended on a good note. Let's see what this week has to offer. I'm praying that this will be a beautiful new beginning for mom. Her wonder drug Lenalidomide will be delivered this morning. If she can fend off infections for the next 2 - 3 months, this drug will make her feel much, much better.

Slight improvement?

Last night, her temperature came down to normal, but the fever came back this morning. What does this mean? Hopefully, her body is responding to the IVIG and starting to fight the infection.

The dr has stopped painkiller and she says she's not in pain so that's a blessing. Her medicine will be delivered to Dr Puru in Ampang hospital by 9.30 tomorrow (Monday) but I think the infection needs to be completely cleared before she can be given the new med. It's a chemo drug - so it will bring down her immunity further. That's why the IVIG was so important.

She slept a little bit last night. She must be exhausted, as she's not really resting well. Hopefully, she will get bit more sleep during the day.

Mom gets IVIG today

Mom still having fever. It goes up and down between 37.8 - 38.9C. Not good, doctors are worried. They've arranged to give her the ivig today instead of waiting for Monday - just started about half hour ago. Hope this works well to boost her immunity and bring her back to good health.

The wonder drug Lenalidomide will be hand delivered to Dr. Puru on Monday morning so Mom should be able to start on that very soon.

Fever

Mom's been having fever since midnight last night. Doctors say the infection is still in the lungs but good thing it isn't spreading. She's been on Meronem for 3 days, they're going to continue and hope that it beats the bug.

Our maid is well and back in hospital. She takes much better care of mom than I ever can. We're so lucky to have her.

Looking forward to next week

Mom slept well last night and looks fresher today. She's recovering well from the surgery. When we sponged and changed her today, she wasn't in pain anymore. YAY!

She still has the mystery fever - dunno why. Dr Rajbans has ordered urine culture and chest x-ray to check on her infections. She's still getting antibiotics for both. Hopefully it will clear up by this week.

Dr. Puru will give mom the intravenous immunoglobulin on Monday. The wonder drug lenalidomide has arrived, should be out of customs by tomorrow. Dr. Puru plans to start this next week too. This is a chemo drug so mom's immunity needs to be strengthened before she can take this.

Our super maid Robena has recovered from her own flu and fever. She's at hospital with mom now but she'll be going back home soon. We don't want to expose mom to any kind of germs for too long.

On that note, I think it is better for visitors and well wishers to stay away for one more week. Let mom get stronger with the immunoglobulin first. Then come and visit. For now, we musn't risk any infection.

Surgery done :)

She's out of surgery and back in the ward.
Phew... :)

Fracture!

Ok, it's confirmed. Mom has a fractured left humerus near the shoulder.

No wonder she's been in so much pain. Because of the location of the fracture, the orthopaedic surgeon will need to do a percutaneous reduction and bone cementing procedure tomorrow. This is a 'keyhole' surgery. Very small incision. But mom will be under general anaesthetic. The whole thing will take about half an hour. Once it is done, she won't have any more pain and the bone can heal naturally.

This is a sign that her myeloma is progressing. Just hope and pray that the Lenalidomide will arrive soon. The importing pharmacy says it is due to fly in today. Hopefully it won't get held up in customs or anything like that.

Mom has a wonderful team of doctors. They are all constantly informed of her condition and monitoring her closely.

Our maid Robena has fallen ill so she is staying away. Mom is very susceptible to infection right now and we don't want to take any risks.

Please pray for her to go through the surgery safely and that the medicine will arrive with Godspeed.

What's Next: IVIG

The doctors are keen to get mom started on the IVIG (Intravenous Immunoglobulin) that Dr. Puru recommended. They're going to call her tomorrow and arrange it. Apparently it is so expensive that it is rarely done in private hospitals! I wonder how much??!!

To read more about IVIG, visit : http://www.arc.org.uk/arthinfo/patpubs/6273/6273.asp

Thanks to the painkiller, mom slept well last night and also most of today. At least when she's asleep, she's peaceful and her breathing is easy. When she's awake, she has a pained look on her face but is unable to tell us where. When we move her, it's very painful :(

Anyway, at least her heart is doing bettr today. Not so strained. Lung infection still bad that's why both Dr Ridzwan and Dr Rajbans want her to get the IVIG fast.

No fracture :)

Phew, the x-ray showed no fracture. But she's aching all over and in pain whenever we move her. And we have to move her every two hours to prevent bed sores.

Yesterday, the Dr decided to start giving her painkiller - either Tramadol or very mild morphine, these won't affect her kidneys. Hopefully, this will give her some ease and allow her to rest.

Her heart has been under a lot of strain. She still has some lung infection and UTI. Hopefully the marunem antibiotic will clear it up soon. She hasn't been sleeping much so she's tired. Hope she slept well last night and can rest today.

A Fracture?

We noticed that mom's left hand was hurting much more than usual. It has always been stiff since the stroke and whenever we stretch it out, she will complain. But yesterday, it seemed very unusually sensitive.

I suspect she could have sustained a fracture while in ICU. The ICU nurses are trained to save lives, and not worry about gentle care. The handover to the ward was very sloppy. Mom's file did not go up with her. So the nurses in the ward also did not know about her myeloma.

She has been off Thalidomide (oral chemo) for over two months. This is to prep her for the new miracle drug, Lenalidomide, which will be flying in on Monday. Meanwhile, her myeloma is untreated and could be progressing. This will cause more fractures and pain. Sigh...

They've just done an x-ray on her hand. They also did a chest x-ray to see if the lung infection is clearing up.

Mom seems very short of breath, even with oxygen. They are doing an ECG to check her heart.

She didn't sleep whole night. When I was there late last night, she was restless and edgy. Won't say why. When I ask if she is comfortable, she puts on her 'poor thing' face. This time I think it's not just manja, but she's really not comfortable.

Let's hope she gets better today.

Oh, the dr is changing her antibiotic to the stronger one :Marunem.

Mom recovers

Mom is much, much better today! :)

She was transferred out of ICU at abt 4pm today. She is now in Block D, Room 601.

She got a blood transfusion today - 2 pints! After that she's much more alert than usual. Her speech is almost normal, and she as a lovely rosy blush on her cheeks.

By tomorrow, the urine culture results should be back and I suppose they will do another blood test. Hopefully, there'll be no complications.

I briefed Dr. Puru today and she wants to start giving mom IVIG (Intravenous Immunoglobin) once a month at Ampang Hospital.

Mom is back in ICU :(

Last night at about 8pm, Mom developed a fever. By about 1am, after two doses of panadol, the fever subsided and she fell asleep.

Then at about 5am this morning, the fever came on quite fiercely. We immediately called the ambulance and rushed her to Pantai. An x-ray showed lung infection and her urine was dark which could be a sign of urinary tract infection.

She is now on two types of antibiotics : Diflucan and Sulperazon. Hopefully these will clear out the infection. If not, they will use Meronem, which is a very strong one.

When we brought her in, she was delirious. Then as she was moved from the A&E into the ICU, she snapped out of it and was aware. At lunchtime, when Wati and Robena went to see her, she was in deep sleep - must have been all tired out.

Sonny and I went to see her at night (Dad, Mike, Phyllis and Robena all not well) and she was much better. Not talking but she understands what is going on and is able to nod or shake her head.

They are also giving her lasix so that her kidneys are continuously being flushed out and hopefully won't shutdown.

If all goes well, they will transfer her to the ward tomorrow. Please pray for her.

Please forgive me if I do not call you personally. I am exhausted. Wati and Aunty Sweet have been helping me to make calls. If you would like sms updates, pls send me your mobile number.

She speaks!

Mom has started speaking more : asking where we are and what time I'll be home from work. This is another great improvement :) The first thing she said to me when she came home and got settled in bed was "I have no more pain." What a wonderful thing to hear!

If you'd like to visit, this is the best time. She dozes off and on so you can drop by anytime. Now that there are no nurses and doctors coming in every hour to check on her, she will appreciate some company.

Dad, Sonny and Mike have done up Mom's room. Nice TV and aircon. She's still not used to it yet, but as usual she's being a good sport. Anyway, both Mom and our wonderful maid Robena are comfortable in that room so I think in time, she will adjust.

Mom is home.

Mom's first night at home was pretty much the same as her usual nights in the hospital ; she sleeps a bit, then wakes up. This goes on whole night and she finallu falls into deep sleep at around 6am.

She has moved into the spare room next to her bedroom so that she won't catch Dad's flu. Today, Dad is going to install air con and Astro for her.

We hope to be able to get her out of bed and into her wheelchair at least once a day.

Mom comes home :)

Mom will be discharged today. Yay-Yay!!!

She's all recovered, just not talking or smiling. I think that's getting too difficult for her so most of the time, she just doesn't want to make the effort. Apart from that, all is well.

Still improving

Mom is getting stronger. Yesterday, she got out of bed and sat in the wheelchair for a while. She hasn't done this since the PEG tube was inserted almost two weeks ago. It's a sign that she's feeling stronger. And of course, it's easier without all those tubes and catheters!

She has a bit of diarrhoea, which could be due to the antibiotics or not enough fibre in her feed.

Still not talking but she is strong enough for visitors. Just don't take it personally if she doeesn't talk to you :)

Mom is unplugged :)

Yesterday's blood test confimed that her kidneys are doing fine. So all the lines and drips and catheters have been removed.

Now, the only thing is some mild bedsores on her bum.

Dr. Puru was overjoyed and she'll chase for the Lenalidomide miracle drug to come in.

We can start planning how to look after mom at home now. It's quite a scary thought as she still uses oxygen once in a while when she's tired, and she still gets low-frade fever. Well, one step at a time. For now, let's rejoice in knowing that her kidneys are fully functioning and she is unplugged.

It's confirmed : her kidneys have revived!

Oh happy, happy Sunday!
Her blessed kidneys are processing toxins, and still producing good volume of urine even without the aid of lasix. Her water retention is starting to subside. Potassium and albumin levels have gone up to normal. It's such a wonder!

While we're all heaving huge sighs of relief, we know there is still a long journey ahead.

She still gets low-grade fever once in a while, especially if the room gets too warm. She's got sore spots from lying in bed for three weeks. And her muscles have stiffened up.

She doesn't want to talk. At first we were worried that she was losing her speech muscles. She wouldn't respond to anyone! Then she suddenly surprised us by asking about the boy who brings in the meals. Her speech was clear and perfectly normal. Glad it hasn't deteriorated :)

The next chapter is the miracle myeloma drug : Lenalidomide. It's due to arrive and I think she should be well enough now to receive it.

Mom has been moved to room C620. Still on same floor, in same Block.

Body aches

Mom is complaining that her whole body aches. This is caused by the low potassium in her blood. She's getting a drip to rectify this so it should be better soon. It's a good sign that she can complain :)

Her urine level is still good, in spite of the reduced lasix. When it reaches 2 litres, they will stop the lasix completely and then her kidneys are on their own.

They're doing a blood test now to check level of toxin. Hopefully, the level is still low enough that she won't need dialysis today.

As she hasn't been talking much, we're starting to be able to read her many faces! Here are some of the more frequent ones :

• A glare, then a toss of her head and look away : "Of course I know who that is" (when we ask her about her visitors)

• A straight expressionless look, then calmly look up at TV : "I see you but the TV is more interesting" (when Dad and Sonny arrive)

• Corners of eyes droop, then lips form a slow quivering pout : "Oh, I'm so miserable, everything's not ok" (classic 'poor thing' look reserved for Janet)

She looked so much more alert and comfortable yesterday. It was such a relief to all of us. Now praying that her kidney's recovery will continue and that she'll be able to come home and start the new miracle drug for her myeloma.

Many thanks for all your blessings and prayers.

BTW - I've corrected the day and date on the blog.

GREAT NEWS!!!

SATURDAY noon : Her blood test showed no need for dialysis today! This is a sure sign of her kidneys recovering.
Thank God for answering our prayers :)

Friday was good

Mom was much better yesterday. The doctors are very happy that she's passing more urine now. And the urine is clear, not cloudy with infection. This is an improvement!

I'm down with flu so didn't get to see her. When the family went at dinnertime, she didn't speak to anyone although she was awake. Well, maybe the TV was more interesting!

I just heard from our wonder maid-turned-nurse Robena that mom slept well again last night. Hopefully the blood test today will show low toxin levels, and no need for dialysis.

A third session of dialysis

Mom had to undergo a third dialysis yesterday (Thurs) as her kidneys are still not removing toxins yet. She has water retention and bloating in arms and legs and is not as alert or fresh as last week :(

Her PEG stomach tube is working fine, and healing fine. She's taking a low-protein food concentrate for kidney patients - Nepro.

Lung infection seems to be controlled. She gets the nebuliser three times a day to break up the phlegm in her lungs but she can't cough it out so they suction it out every few days or so. She doesn't like this at all.

I am down with flu :( so I'll be staying away from her today. Can't risk exposing her to more germs!

She hasn't been talking much and I think she's in quite a bit of discomfort with all the tubes, catheters and bloating. But she hardly complains.

The Lenalidomide should be here soon so that is something to hope for. If that can control the myeloma, hopefully, her kidneys can revive. That's the only thing keeping her in hospital now.

She slept well last night so I hope she'll be stronger today.

If you feel you must visit, please don't stay too long. She will play 'host' and struggle to stay awake while her visitors are there.

Peaceful Tuesday

Yesterday was a quiet day. The doctors wanted her to just have a quiet time to rest. So no blood test, no lipid profile.

She's passing more urine, but still not as much as the doctors would like. We're still praying that her progress continues and her kidneys will revive. She's starting to bloat from water retention and says she feels heavy, poor thing.

Another session of dialysis

Although her kidneys are improving, they're still not removing the toxins from her blood yet.

She had to have another session of dialysis yesterday. This left her quite tired and feverish.

Her Haemotologist Dr. Puru from Ampang Hospital came over and spent two hours at Pantai talking to the Pantai doctors and observing mom. She's quite satisfied with the care that mom is getting and she will work with Dr. Rajban to control her myeloma.

Mom slept well last night so I hope she's feeling better today.