Mom's Henry Dunant Award

I received this from Jaya Maruthan :
Hi Janet, I thought you should know this...En. Hisham, SecGen and I attended the RC/RC Statutory Meetings in Nairobi recently. During the Henry Dunant Medal award presentation ceremony on the first day of the Council of Delegates Meeting, the Movement honoured your dearest mom, the late Datuk Ruby Lee as one of the aw...ard receipients for 2009.

En. Hisham represented the Malaysian Red Crescent up stage while Datin's tribute was read out.
A photo of her flashed over a huge screen decorated the hall while honouring her. It actually gave me the impression that she was watching everything that was happening that evening..

A one minute silence was observed and a standing ovation followed this to pay respect for her selfless contibution to humanity and in particular the Red Cross and Red Crescent Movement. We were overwhelmed by emotions as we missed her very much...May her soul rest in peace.

Thanks Jaya and En Hisham. I'm really very glad that mom was able to accept the award in person in March this year.

Mom's Birthday is coming soon

Mom was born on 21st January. Dad and I have decided that we will honour that day with a memorial gathering. The day she came to us is just as important as the day she left us.

100 days

It's been a hundred days since mom passed away. One hundred empty days. As dad says, her loss is indescribable. While we each do our best to get through our grief and sadness, it has not been easy arranging for our regular Sunday night family dinners. I realise now that Mom controlled all of us with an iron will and incredible persistence. We had family dinners so often because she was willing to nag us endlessly about which day we're free. Now that it's up to us, I have a better understanding of how mom was the glue that kept us together.

Tonight I think she would be happy. We visited her at the Shah Alam Memorial Park, read some prayers and then we adjourned for dinner. Just the way mom would have organised it :)

4th July : Mom & Dad's 62nd Wedding Anniversary

62 years ago today, mom and dad got married at St. Mary's Anglican Cathedral. They made a promise to each other that they would raise a close knit family. And they did just that. We're having a quiet BBQ at Mike's home tonight.

Ruby Lee remembered

Click on the title to read a lovely letter written by former MRCS volunteer ST Rajagopal.

We're still receiving donations

If you've been planning to donate but haven't got around to it yet, there is still time. We'll probably close accounts at the end of June. So just let me know if you'd like to make a donation to these organisations in mom's name :
• Malaysian Red Crescent Society
• Hospis Malaysia
• Society for the Severely Mentally Handicapped
• MAKNA (Majlis Kanser Nasional)
• Community Support Network

Just address your cheque directly to them, or send it to me and leave it to us to divide the amount equally, whichever you please. If you do want to give something, please let me know to expect it. Many thanks.

A Beautiful Saying

“Perhaps they are not the stars, but rather openings in Heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy.” (Author Unknown)

Thank you Yenny, for sending this to me.

Janet's blog

Lots of memories of mom are here in my blog.
Just click on the title of this post.
We even have photos of her attending a Terry Fox Run!
(of course, she was in her wheelchair rolling downhill while we were running after her hahaha!)

Personal stories

If you come across any personal stories, tributes or postings about mom, please send me a link. In time, we will post the many comforting condolence messages here on this blog.

We came across this nice one by Marina Mahathir, a feisty lady whom mom admired.
http://rantingsbymm.blogspot.com/2009/06/datuk-datin-paduka-ruby-lee-1927-2009.html

You can find Janet's personal blog by clicking on the title of this post.

Funeral details

MONDAY 15TH & TUESDAY 16TH JUNE, 10am - 10pm.
Come pay your last respects at
Nirvana Memorial Centre
No. 1 Jalan 1/116A,
Off Jalan Sungai Besi
57100 Kuala Lumpur



There will be a special service at the wake on Tuesday 16th June at 8pm.

WEDNESDAY 17TH JUNE.
The church service will be conducted at mom's favourite church, the one where she got married. It's next to Dataran Merdeka, there should be ample parking in the basement car park of Dataran.

Date : Wednesday 17th June
Time : 11am
Church : St Mary's Anglican Cathedral
Jalan Raja (Dataran Merdeka)
50050 Kuala Lumpur

NO WREATHS PLEASE. Donations to the following organisations in mom's name would be greatly appreciated. Choose your favourite or let us divide it equally, it's completely up to you.
• Malaysian Red Crescent Society
• Society for the Severely Mentally Handicapped
• Hospis Malaysia
• MAKNA
• Community Support Network

Thank you all for your constant and everflowing love, support and prayers. We are very blessed to you in our lives. Deep, deep thanks from all of us.

Mom has gracefully taken the hand of God.

It was a day filled with laughter. We had said everything we needed to say to her, and we had heard her 'speak' to us as well. All was forgiven, all love was freely expressed without restraint. That was yesterday.

So today, we just sat in her room, played music and made jokes.

I think that's why she decided that it is ok to leave us. She waited until we were ready. All of us were at home.

When she took her last few breaths, we were all by her side. As her heart gradually stopped beating, she was surrounded by loving kisses and tender touches. She gracefully departed with angels by her side, taking the hand of God.

What a beautiful, graceful passing. She left us with one final beautiful memory. So typical of her. Every gesture is made with deep love and consideration. That's mom.

Another dawn to be grateful for

AM : Mom is still with us, but getting weaker and colder. Still sleeping as peacefully as a baby.
We're topping up her medicines today - we only brought home a 3-day supply from Pantai, and we've run out.

We're thankful to have another day in which to cherish her and care for her. She seems to be most comfy when we are in the room with her and she can hear our voices.

Another dawn

Mom's done it again. The dr said that when her extremeties start getting cold, her body will be in the final stages of shut down.

At about 11.30pm last night, her toes and fingertips became icy cold, even under the blankets. So dad gathered us around mom and we said our goodbyes. Compared to the previous night, mom looked so much more comfortable and at peace. Her breathing was much easier, her beautiful face was serene and looking content.

We went to sleep at about 2 - 3 am. Mom's breathing was so faint that I couldn't even hear it, although I was next to her holding her hand. It was so peaceful and easy compared to the previous night's strain.

I fell sound asleep, expecting her to slip away too. When we checked on her at 5 something, her extremeties were warm!
We said let's leave her to go in her own sweet time. We went back to sleep and at daybreak, mom was still the same. Another dawn, another few hours to appreciate this remarkable woman who keeps defying the doctors. As Mike put it "She surprised us again."

She's getting herself ready. We've done everything and will continue to be with her. Now it's for her to get herself ready, in her own time and with God's gentle guidance.

Every additional hour is a bonus opportunity to cherish her, love her and pray with her.

Quiet day

It's been a quiet day. Mom looked so comfy that we were envious!

We managed to get some rest this afternoon, in order to be ready for more music and song tonight.

Mom is fading, but she's still very comfy and peaceful. She has some phlegm which we are treating with the medicine given by Hospis. We also have a suction pump on standby in case it gets really bad, but we will try our best not to use that.

We've been giving mom her medicines and changing her position every few hours. Her blood circulation is still pretty good, so she's warm all over. Strong willed indeed. We gave her a manicure and pedicure just now :)

Her haematologist Dr Puru made a special trip to see mom today, and it was such a good thing. I think the dr needed to see that mom was comfy. All the time that mom was in Pantai, Dr. Puru would anxiously call me and the Pantai doctors to keep track of mom's condition. Now she too can have closure.

Please help us to pass the word around. Mom has touched so many people and we can't keep track of them all.

Mom still going strong

At about 3pm yesterday, Pastor Andrew Cheah, a lovely smiley pastor from St Mary's church came and read to mom. She seemed to enjoy it. Then at about 5pm, the Hospis dr came to see mom and alerted us that she is shutting down and it may be a mattter of hours.

We informed the family and close friends and people started arriving. All the people that mom knows and loves came. Bernard brought his keyboard and sang to her all evening. Mom's eyebrows would go up and her hand would respond when she heard her favourite songs : South Of The Border, Hello Dolly, You Are My Sunshine, Oh What A Friend We Have In Jesus and Amazing Grace.

It was a night filled with Love and Rememberance of good times. Just like mom to bring us all together! I can imagine her playing the charming hostess and greeting everyone!

Later, at about 9 or 10pm, the intervals between each breath grew longer and longer. Sometimes, almost one minute would pass without her breathing. So we all gathered around her bedside and spoke to her, bracing ourselves for her to take her leave and telling her it's ok to go.

Well, if you know mom, you would know how long she takes to say goodbye and take her leave. It always happens at every function. She knows so many people. So when dad says it's time to leave, she will start saying her goodbyes and it will take forever. So why should this be any different now?

The family is clear that we have given her permission to go. Wati has also spoken to her on behalf of Ken. So I don't think it is us that is holding her back. I think it is her will. And you know how strong willed she is :)

Throughout her irregular breathing, her heart was strong. Her pulse was strong. At about midnight, Sonny half-jokingly said we'd better to prepare more oxygen for her. He knows her well too.

Anyway, we got ready to spend the night with mom. Wati, Mike, Phyllis, Mellissa, Maxine and David (my cousin) all camped out - on the various sofas, mattresses, chairs and floors. Our cats must have been wondering why so many people scattered all over! This is mom's way of bringing the family together and raising us to a higher degree of intimacy.

At about 2 -3am, we all dozed off. I was holding mom's hand and was stretched out on 3 chairs beside her so I could hear her breathing. It became more regular! Her pulse and her grip remained strong. I had a feeling she wasn't ready to go yet. So we slept.

At about 6.30am, we started waking up, and yes! Mom was still going strong. Her breathing was more regular, her grip and pulse are not as strong now. She is so peaceful. No problem breathing, no struggle of any kind. Bena and the nurse gave her a sponge bath and settled her down.

Meanwhile, I quickly ordered more oxygen! Sonny's prediction came true.

Dad and I are just amazed at her strength and resilience. Or stubborness. She is so strong willed, she will go when she is good and ready and no one can tell her otherwise. We are happy to support her in this, and we abide by her wish. I remain open to 'hear' what else she wants. As long as she is comfortable and peaceful, we can be at peace too.

Peaceful Night

Mom had a very peaceful night, and so far today has been nice and quiet too. Her breathing is less noisy, her kidneys are slowing down, everything is slowly shutting down, but she is at peace. She's still responsive to our voices and what we say to her.

I told her I'm busy arranging her church service and wake, so she must tell me what she wants. You know how she likes to be in charge of organising every sngle detail right? So I knew she would want to have her say. I told her to tell it to my heart and I will be able to know what she wants.

And then, of course, she sent me a very clear message. Mike and Dad were very happy to hear it, and I'm now trying to arrange it. Will publish the info once we get approval.

If you'd like to come and say goodbye, this is the best time. She's at home, at peace.

Last night, we sang to her, and she gave her half smile and gripped my niece's hand very tightly. Maybe she wanted us to stop!!! Hahaha... She is still aware and this is the best time to express our love and appreciation to her.

Mom is home.

Sorry, not able to access blogspot for past 24 hours, and a lot has happened!

This morning, mom's vitals started slowing down and her oxygen absorption dropped a lot. Her condition is deteriorating. I asked the dr if she could possibly hold on until tomorrow (Thursday) to go home, and he said we'd better bring her home today. The faster, the better.

We immediately called LifeLink to supply home nurses and equipment. Mom needs A LOT of things to sustain her in comfort. Morphine in syringe pump, 10 litres of oxygen! and a long list of IV medications.

Finally, to cut a long and incredibly stressful story short - we brought mom home at about 4pm. It took another hour or two to settle her down and run through all her medicines. Meanwhile, hoards of visitors came but respectfully waited outside while we settled mom in. Thank you for your understanding and patience!

It's amazing how much we all accomplished today. While Wati, Bena, cousin David Cheah and I were at the hospital with mom, Dad, Mike and Sonny went and confirmed a beautiful crematorium and memoorial garden to place mom's urn. Apparently, the place was so beautiful and restful that Dad also bought one for himself, and Mike bought the one next to them. So all settled.

Mom's ok. Tired out from the journey home and resting. Thank God we didn't wait. She would be probably be even weaker tomorrow.

Fever

Mom slept most of the day, thanks to morphine. No need to increase the dose yet :)

She developed a fever though, and it wouldn't go down the whole day. Dr added on a new antibiotic - Fortum.

The highlight of the day was when three gentlemen came to say prayers for mom. I remembered that when she had the stroke 7 years ago, there was this one day when Sonny was with her in hospital and two of dad's friends came to visit. They held hands and said prayers for her. Mom doesn't usually like this kind of thing but she said she felt very touched this time, and it was very nice.

Sonny described it as two angels swooping down from nowhere to lift them up with their prayers.

When I recalled this, I asked Sonny and Dad if they could remember who these men were and could they be contacted. Sonny's hair turned white but still couldn't recall the name. Dad remembered that it was a Lion. So he looked up the members list and when he saw the name, he remembered.

He called the man and they arranged for him to see mom today. The whole family also went along. We were all around mom's bed as the prayers were being said. Mom was in her morphine sleep but I know she was aware. Her breathing, bp and pulse were all responding. When it was over, I whispered in her ear and asked if she liked it. She smiled! She SMILED!!! We all saw her lovely beaming smile! Oh Joy!

Then she went back to sleep.

We are still weighing the options of providing palliative care in hospital or at home.

Staying in the hospital will be easier for us. Less worry. If anything happens, there are nurses and the MO. There is also all the equipment of course.

Going home is scary. Since March, we've spent more time in hospital than at home. We go home for 2 or 3 days and she has to be re-admitted. What if we bring her home and then she has a heart attack or chokes on phlegm or has a seizure or fever - what do we do? Even if Hospis can train us to manage that crisis, what if she succumbs? Will our lack of expertise cause or hasten her demise? It is a scary, scary responsibility. Speaking to the Hospis dr was not very reassuring either. We need more info. We need to find home nurses.

My heart tells me that mom will find it easier to have closure and let go when she is at home. I think she is only just realising that her time is up. She's always been so very positive all along. As though dying was just not an option. Now it is a looming reality. I talk to her and sometimes we cry together, and I have this intuitive feeling that she needs to be at home in order for HER to say goodbye. I want to honour this. All of us want what's best for her, even if it makes us worry more. She's our priceless treasure.

So now we are getting more info, finding resources, and then we'll decide.

Morphine

This morning we increased the dose to 1.5mg and mom spent the day sleeping peacefully :)

When we turned her (we change her position every 2 - 3 hours to alleviate bed sores), she woke up but wasn't in any pain. This is a great relief!

She wakes up off and on. If we're too noisy or we touch her or call her, she'll wake up and she is aware of her surroundings. She doesn't speak but will respond if we ask her a direct yes / no question.

If we ask her 'how are you?' she shoots us a dirty glare. Hahaha, thank God she's pretty expressive so at least we know whether she's happy or not.

There's a difference : she didn't like the physio, but she was ok with the phlegm suction. It shows clearly on her face so we know what to do. Thank God! Phew...

Tomorrow, I'll meet the Hospis dr to discuss palliative care at home vs in hospital. Meanwhile, we'll keep mom on morphine, IV feed and all the present medicines.

Pain

Endoscope shows duodenum is completely blocked. Something outside is pressing in on the passage and has completely closed it off. This is why the food cannot pass through at all, and comes out through stomach.

They took tissue sample for biopsy - but there's not much point cos this is a sample from inside. It won't tell us what is outside.

There are two possibilities : inflammation from pacreatitis or cancer infiltration. If inflammation, the antibiotic will clear it up. If it doesn't clear up in a few days, it's probably cancer.

When we brought mom back to her room, she started having stomach pain. Bad pain. It comes in spasm like some kind of cramps. At 1pm, we gave Trammadol painkiller. At 2.30 we asked for another one. Dr gave Pethidine. Mom rested better. Although mildly sedated and sleeping, she still jerks and starts gripping her stomach. She's defnitely not comfortable.

At about 5 or 6 pm, the doctors came and I asked them point blank if they thought is was more likely cancer or inflammation. They said inflammation would not cause so much pain. And the pain is increasing even though mom is just resting.

So now, the best thing for mom is to start pain management. She's still getting all the antibiotics and other medicines but the most important thing is to keep her comfortable. The doctors sadly warned us that her condition is declining. She is much weaker now than when she miraculously came off the ventilator.

They started giving mom morphine. Just a small dose of 0.5mg. So she's resting much better now. I spoke to her and she opened her eyes to look at me for a few minutes, then she went back to sleep. She's aware but just not talking.

I'm meeting with the Hospis people on Monday to work out the best plan for mom. I think she'll want to go home. She's had enough. Her eyes and her expression clearly says so.

May God bless her and grant her with comfort and peace. May the rest of her time with us pass with grace and ease, and may every moment be an experience of peace, love and joy.

Endoscope

Mom was transferred back to her room in the ward yesterday. The CT Scan showed that there is a mass of something causing intestines to narrow. That's why the food gets trapped in stomach and spills out through the tube. I don't know why the earlier x-rays didn't show this!

The next step is to find out what this mass is. It could be cancer or it could be inflammation. The doctors will do an endoscope and biopsy today to find out.

Meanwhile, mom is getting fed intravenously. It's quite amazing : a soya bean oil compound is being dripped directly into her veins! This should give her a bit of strength.

She's weak and on painkillers so she is sleeping most of the time. She looks better than when she was in ICU.

The horrible thing is that everytime she comes out of ICU, she sustains some injury. This time, it is a huge sore on her buttocks. It looks like they scrapped off a 4cm patch of skin! Even the ward nurse was shocked. She took a photo on her handphone and lodged a complaint to the ICU supervisor.

Mom will be sedated during the endoscope, and there's some risk so pray for all to go well.

It's serious

Mom cannot tolerate any food at all. It is too painful. This is a sign of gall bladder disease. In a normal healthy person, they would just remove the gall bladder. In mom's case, she may not be able to take the surgery.

Her kidneys and intestines also need investigating. They will do CT Scan to get clear picture of he condition. Then only can decide what is next course of action : to treat or to just put her on pain management.

Mom is stable but unhappy :(

Dr Ridzwan suspected that mom's seizure happened because her 'anti-seizure' medicine Epilim was not being digested through her leaking stomach. Mom has been taking Epilim ever since she had the stroke in 2002, and she has a history of brain sensitivity. Epilim is also a mood stabliser. So no wonder she was emotional and confused on Tuesday!

He immedately changed it to intravenous Epilim. I called in Mom's neurologist Dr Lee Moon Keen. She came very quickly and was happy with Dr. Ridzwan had done.

Meanwhile, we are still anxiously waiting to know what the Gasteroenterologist Dr Mahendra is going to do about her stomach! It can be very hard trying to get a doctor'a attention when you are in hospital!

He finally came to see mom in ICU at about 1pm. After x-rays and ultrasound which took the whole afternoon, at about 8pm, the diagnosis is that mom has some infection somewhere. Don't know where, which organ. Suspect it is the gall bladder. Her kidneys also look blocked or congested - maybe something there too. They will do a CT Scan today. Meanwhile, start her on a new antibiotic Ciprobay.

Mom's pulse and bp were very high when she had the seizure. It came down slightly and was still slowly coming back down to normal when we left her last night.

She's still in some pain, and is being given painkiller twice a day. They don't want to give her too much as tey need her to tell them where she is feeling pain. Too much painkiller will mask the infection.

Dr Ravi, the lung dr came as well. They did a sputum test yesterday and it showed that the two serious bugs from her vomit episode had been cleared. She now has a new bug, but thank God it can be treated with the same antibiotic that Dr Mahendra prescribed. So it'll be a two in one cure :)

Sigh... it is one thing after another. I suppose, we can be grateful that it is not ALL at the same time!

Mom doesn't look happy at all. She looks at us but isn't talking. She just keeps shaking her head in frustration. When we tell her she's going to be ok, she just looks away and shakes her head. When we are there, she grips our hand very hard. We wanted her to be transferred back to her room in the ward last night so that we can be there with her, but Dr. Rajbans wanted to play it safe and keep her in ICU.

Mom really needs emotional support and love now. The ICU has been turning a blind eye to our presence and did not chase us out. I really hope mom is well enough to move back into her room. Then we can freely be with her.

Mom had a seizure!

What a day! To begin with, Mom had a confused state of mind, she's talking a lot but not making sense. She is sometimes very alert and aware of her surroundings, and sometimes she is not.

Her PEG stomach tube is still leaking. Dr said to stop the feed again. Waited whole morning for the gastroenterologist Dr. Mahendra Raj to come and see her, but he only turned up at 3.40pm. Fortunately, her tube was still leaking and the dr could finally see it for himself. He examined mom's tummy and saw how much pain she was in. I saw his face change and he started to worry. Good! About time!

When he pressed her tummy, there didn't seem to be much pain. Only when he moved the tube itself, then she yells. The skin around the incision is all red and sore.

Dr thinks it could be either a blockage at the entrance to her intestines, or the tube has slipped out of place. He did an x-ray.

The x-ray showed neither. Tube is still where it belongs and there is no blockage.
Earlier this morning, Mom's haematologist Dr. Puru said that her thyroid problem can also cause paralysis of the intestines. This is being rectified with Euthyrox.

So, Dr Mahendra and Dr Rajbans decided to do pump feeding - this is the controlled 30ml per hour drip into her tube. Give anti-reflux medicine, and observe.

At about 8pm, mom started to have pain in her stomach. It got worse and worse until we insisted the nurse call Dr to ask for painkiller. Mom was very emotionally upset about the pain - she usually never complains but this time, it must have been really bad. She actually said it was 'unbearable' and she wants to give up.

Painkiller finally arrived at 10.05pm. About 40 minutes later, the pain seemed to subside.

Then she had a seizure. Her blood pressure, pulse and even blood sugar went way up. Nurses came, dr came, and they transferred her to ICU. All this took about 40 minutes. Just as we left her room, she started to come out of it. By the time we reached ICU, mom was awake, aware and able to respond to my questions. Thank God!

Then they gave her diazepam to completely abort the seizure and sedate her. She immediately fell into deep sleep. Sigh... what a relief.

Now we wait for tomorrow to see how she is. Hopefully the doctors will have some theories about what happened. Her confused state of mind and emotional instability must have been early signs. Pity the nurses were too busy changing shifts to come check her blood pressure. Pity she went through so much pain.

We still haven't solved the mystery of her leaking tube. Hope tomorrow will bring some answers.

Poor mom. She had one heck of a rough day today. At least now she is getting her much needed sleep.

New problem :(

Now that mom's lungs are recovering well, she has developed a new problem : she's not able to digest her food and the PEG stomach tube has been continuously leaking. This is even after her feed has been reduced to a tiny baby amount.

We've stopped it completely now. Her 5pm feed was the last, and every hour there has been a lot of overflow. Mom's skin around the tube has become red and very sore. Poor thing. I wonder what's causing this. Is her stomach not functioning anymore? Why? What can be done? If this goes on, how will she get any nourishment?

Worry, worry...

A Lovely Boring Day

Apart from mom's stomach PEG tube springing a major leak early this morning, today was blessedly uneventful. Mom is looking better, less tired, although she hasn't been sleeping at night nor in the daytime. Maybe she had more than enough sleep in the ICU!

She's having some problem digesting her feed. Tomorrow the Dr will give some probiotics - maybe the cause is as simple as the antibiotics having wiped out all the bacteria in her stomach and intestines. I really hope so. Otherwise this may be a serious problem. She hasn't had much nourishment since she was admitted a week ago.

Her lungs are still improving. She's hardly wheezing now. This is such a miracle! They've reduced her medicine - Combivent and Mucosolvan for the lungs. She's still on antibiotics though.

As she was more alert today, we had a movie marathon : mom and I watched three (three!) Arnold Schwarzeneggar movies in a row! That's one too many... phew!

Hope she manages to get some good sleep tonight.

Resting

Mom had a nice restful day today. The whole afternoon was boring, which is a good thing!

She still needs to have phlegm suctioned out of her lungs, and she's on antibiotics, antifungal, vitamin boosters, thyroid tablets, and lots more. She is still weak but thank god she has no new fractures, no pain anywhere.

She's talking less, and mumbling - very hard to understand her. But she hears us and is very responsive.

She spent the whole afternoon wide awake, watching TV! Then fell sound asleep at dinnertime when the family came to visit. Well, she needs the rest.

Hopefully, tomorrow will be a blessedly boring day too :)

Still more good news :)

Mom is completely off the ventilator and breathing on her own today.

She is off sedative so she is awake. She's trying to talk to us but her voice is weak and hoarse (Darth Vader sounds like an angel compared to her right now).

This is a blessed recovery. She is a miracle! Her doctors are all jubilant!

However, she is very weak, and the doctors are very concerned about her picking up more infection.

She will be transferred to the ward later this evening. She be placed in 'isolation' room where all visitors MUST sterilise their hands and wear a mask.

Visitors are actually not encouraged right now. Please give her some time to regain her strength and alertness. She is so disoriented, she could not even remember my name! She must be wondering who is this strange person squeezing my hand and kissing me?! Hahaha :)

If you'd like to visit and comfort us, you are most welcome to come over to our home. Just call first to make sure that we are around. Or we can meet you in Starbucks at Pantai :)

More good news

The lung specialist Dr Ravi ordered a CT Scan today to get a clearer picture of the condition of her lungs.

Surprise, surprise! They are not as bad as expected!

There is pneumonia, but not so much. There is infection from the aspirated vomit, but also not too bad. There wasn't much 'damage' fom the stomach acid either. In fact, the more serious issue is mom's Multiple Myeloma, not the present lung infection.

Dr Ravi also said that the machine readings show that mom's lungs are flexible and functioning well, not stiff or scarred. He's quite confident that she can survive without the ventilator. She does need an additional antibiotic though : Moxiflax... something. This is in addition to the Meronem.

Then I braced myself and asked him the big scary question : will she survive this crisis? His diplomatic answer is "Well, anyone who requires a ventilator is considered critically ill. But she can come off it tomorrow, and then you'll still have to fight the myeloma. I think her lung infection is not the most serious thing."

THANK GOD!!!

Oh what a huge relief. I know the multiple myeloma is serious, but we have the miracle drug Lenalidomide. Apart from the shingles, mom seems to be tolerating it well. Hopefully, once she recovers from the lung infection and is stable, we can re-start the Lenalidomide. I must get Dr. Rajbans to speak to Dr. Puru tomorrrow and plan this out.

But first, please pray that mom can cope well without the ventilator. They will remove it tomorrow morning. If she has difficulty, then they will immediately put it back on.

This is better than what we dared to hope for. Mom is a miracle. Thank you, God!
Thank you to all who have been sending prayers and love. It really makes a difference.

Some Good News

There are signs of improvement, thank God.

Let me explain ; when we made the decision to put mom on ventilator, the risk is that her own muscles will be inactive, and in time, they will weaken and she may never be able to breathe on her own again, never be free from sedation, never be conscious again. We took the risk because she was in a state of extreme crisis.

So she was sedated and the ventilator tube was inserted into her lungs. She was under two types of sedative : Dormicum, which puts her to sleep, and another one that is a muscle relaxant which causes her to be temporarily paralysed.

They have been gradually reducing the dose, and today, mom is no longer on the muscle relaxant. This means that she is breathing on her own together with the ventilator. That's the first good news :)

Second good news : her heart is stable now, even after all that she has been through! She was on two 'heart tonics' as her blood pressure was sky high and pulse was racing. Both heart tonics have been reduced to a minimal amount and she is still doing well. They will stop that tomorrow. Wow, what a strong heart she has!

Now that her heart is doing fine and blood pressure is back to normal, they plan to remove the ventilator completely tomorrow and see if she can breathe on her own. If she can, they will stop the sedative and allow her to wake up. Once she is free from the ventilator, we can plan to move her into the ward and fight her infection from there. That's the 3rd good news :)

This is wonderful progress. God is really taking good care of her, and her incredible fighting spirit is just amazing!

However, she is not out of danger yet. Her lungs are still badly affected. Today's x-ray showed that the lower part of both lungs are damaged and infection has developed. This is still at a critical stage. The doctors are worried. If it was normal pneumonia, they know what the germ is and how to fight it. But this is from the vomit, so it could be anything.

The next step is to do a lung scope. While the ventilator is still on, they can easily put a scope into her lungs and collect a sample of the gunk in there and see what germs are breeding. Then only they can prescribe the right medicine to whack those fellas and clear mom's lungs.

Now that she's on light sedation, she can move a bit. When we were there at lunchtime, as usual, I would check everything and try to adjust her position, exercise her hands and feet. She usually groans and glares at me. Yesterday, she was completely out, so no response at all. Today, as I moved her, she fidgetted on her own!

She half raised her hand. She turned her head away. Yay, it feels so good to see some "sign of life"!!!

Hahaha, this is layman talk. The doctors would say that the machines are showing her signs of life. And she's not in a coma, she's just unconscious from sedation. But still... there's nothing like seeing her move that raised our spirits. We miss her voice, even her groaning. So it's such a joy to see even some small movement.

Please continue your prayers, and let's help her through this.

If you'd like to visit, you are most welcome to. However, they are very strict. Visiting hours are 12 - 2pm, and 6 - 8 pm. Only 2 visitors are allowed in to see her at one time, so please don't stay too long.

Every visitor, even healthy ones, will naturally bring in some germs, so please take care to sterilise your hands before you go in. Mom is very delicate and her immunity is low.

The ICU is on first floor, Pantai Hospital.

Stable for now

Mom is on life support so she is stable.

She is kept sedated so that the ventilator can force air into her lungs. If she is conscious, she will fight this.

Throughout the day, her vital signs have been stable so the dr has been gradually reducing the sedation, the blood pressure med, and the amount of oxygen being pumped into her lungs. And mom is still stable. So far, so good.

The real danger now is her lungs. The vomit will cause serious infection. The gastric juice may cause damage. We will only know how bad it is when they take x-ray tomorrow morning. If it is too bad, she will not be able to breathe on her own. This means she will need the ventilator, and therefore cannot come off the sedation. We may never see her conscious again.

Hopefully, her lungs are not too badly affected and she will be able to breathe with the aid of normal oxygen mask. That would be the miracle to pray for.

Another problem is her stomach :( she is less able to digest and absorb her feed. That's why she vomitted last night. This could be due to her overall progressing weakness and plain old age.

The anaesthesist looking mom is a very senior, very highly skilled doctor: Datuk Dr Damodaran. He took care of her for all the surgeries so he is well aware of what mom can tolerate, and how delicate she is. He will reduce the sedation very, very gradually so that mom can adjust with minimal shock. He said to take it one day at a time.

So far, let's focus on what is positive : mom is stable, her vital signs are good, and she has incredible fighting spirit.

If you'd like to visit, you are most welcome to. However, they are very strict. Visiting hours are 12 - 2pm, and 6 - 8 pm. Only 2 visitors are allowed in to see her at one time, so please don't stay too long.

Remember, Mom is sedated - it looks like she is unconscious. She can hear you, but she will not 'wake up' and talk to you. However, I am sure she will know you are there, so just come and be with her for a while.

The ICU is on the first floor. Mom is in room 103.

Please keep praying fo her. She needs all the help she can get right now. Pray for her lungs to recover. Pray for God' grace and mercy. Thank you.

Please pray for mom

Mom was doing better on Sunday, until about 7pm when she developed slight fever. It came down with Panadol.

The whole day on Monday, she was doing much better. Wide awake and watching TV. Well rested. No fever, just blood pressure is a bit high : 184 / 80.

In the evening, the blood pressure was stil high and we started to be concerned. We checked with her Dr (Dr Rajbans at Pantai) who said to just moniter her first. If her blood pressure is over 200, then only bring her in. Still no fever, still alert and responsive.

Then at about 10.30pm, her temperature went up a bit. By 11pm, it went up bit more and we gave Panadol, and decided to take her to hospital, just to be safe. Called ambulance.

About fifteen minutes later, she vomitted. Then she seemed to have difficulty breathing. The ambulance arrived and we bundled her off to Pantai.

At the A&E, the dr said her condition is critical. We were surprised. Apparently, when she vomitted, she aspirated and the vomit went into her lungs. This is cos she cannot control her throat muscles - this is why we put in the stomach tube in the first place. She cannot swallow. It goes into her lungs. The stomach tube bypasses that.

Now all the vomit and gastric juice has filled her lungs! The doctors took x-ray and saw that it was quite bad. Meanwhile, Mom is struggling for breath, and getting more and more tired. They gave antibiotics, nebuliser, steroids to minimise the acidic effect, and tried to suction out the vomit. Mom still struggling.

The best option is to put her on ventilator, and sedate her. This is the only way she can breathe. Problem is, she may lose the ability to breathe on her own. But we can worry about that later. One step at a time: The immediate thing is to ease her breathing before she goes into cardiac arrest.

Poor mom. We were sent home at about 2am. All in shock cos everything happened so fast.

Now we are praying that there will be no news from Pantai until morning. No news is good news.

Well, although her condition is critical, mom has a way of surprising us. You never know with that lady. her determination is in a league of its own. By now, she should be sedated and resting, fighting the infection and hopefully the healing has begun.

This part of her journey is now between her and God. We can only pray. May angels be with her, bringing her comfort and peace. May God be gentle with her, and may Mom's own will be done.

Bless you, Mom. May great, great Blessings be upon you.

Not quite settled in yet

Mom came home yesterday, tired out from the journey and being carried upstairs. But she was unable to rest properly. Either she's too tired, or constipated or just disorientated.

She doesn't realise that she is home as she's not in her own bedroom. We've set up the room next to it for her. She needs Bena there at night, Dad won't know what to do if anything happens.

She's alert, asking all kinds of questions - that's a good sign. But she keeps on groaning. She dozes off for only 5 - 10 minutes, then her eyes open and she starts groaning again.

She says no pain. Temperature, blood pressure is ok. Hopefully, she'll settle down.

Thanks Uncle Raymond for your warm welcome! Daryl is here for the weekend, visiting two aunties at one go. Aunty Sweet is recovering from an unknown virus.

Yay-Yay, Mom comes home today!

Mom is doing well, so she will be dischaged today at about lunch time.

We are so excited! Her room at home has been cleaned and Dettol-ed a dozen times already :)

Although she's not always lucid and coherent, there are spells where she is suddenly clear. These are the amazing moments we cherish. The night before last, at abt 3am, she suddenly called out "Bena, I can't sleep." Sometimes, she will ask "what time is it?" She once asked Wati "What time are you coming tomorrow?" Once in a while, when we ask her how she is, she'll reply "alright la" but most of the time, she doesn't reply.

There are also a lot of times where we cannot understand what she says. So if you come to visit, please expect that she may not respond to you. She gives me a sour look most times, but then she'll hold my hand tightly and I know she's still glad I'm there.

Ok, got to rush off now. We are compiling a long list of questions to ask the dr - trying to anticipate all the various types of emergencies that may happen, and what we should do!

Please call first if you'd like to visit mom at home. I think she should be settled in and rested enough to receive visitors from Saturday evening onwards. Our home tel is 7956 6526.

Mom is in top form!

Oh, she's in excellent condition now. She's alert and speaks a fair bit, asking the nurse for the time, telling the physio to stop (in English as well as Malay!). Although sometimes, she slurs and doesn't speak clearly, and sometimes, her mind wanders so she doesn't appear to make sense - but at least she's talking and curious. Oh, it's such a joy to be with her like this :)

Her shingles is drying up very well. Still got UTI and high blood sugar. But much less pain - I think the miracle drug is working its miracle.

Hopefully, tomorrow's blood test will clear her and she can come home on Friday.

Mom's getting better :)

She slept well last night and looks much more refreshed today. Dr. Rajban says her haemoglobin is a bit low (9.2) so he'll gve a blood transfusion tonight. Her albumin level is also low, and this causes swelling and water retention.

She managed to speak up and tell the physio to stop exercising today. And she raised her right hand to shake her Dr's hand. Didn't speak to the rest of us, but she knows what's going on.

Then on Thursday, when she finishes her one month's supply of the miacle new drug Lenalidomide, he will do another blood test. If all is well, she can come home on Friday!

She was admitted on 15th April. Today is 18th May. It's about time she came home :)

Sonny has been entertaining us with his records! We started to keep our own daily records as the nurses' are not always accurate. We write down what time mom gets her feed, medicine, everything. But when Sonny is the one looking after mom, he writes comments like :
2.45 Exercise time. Went jogging.
Another time, it was "Did gymnastics"
Last Saturday, he wrote "Forgot to bring swimsuit so no swimming lesson for mom."
Hahahahah...

Mom gets second dose of IVIG

She's supposed to get this once a month to boost her immunity but because she has constant infection and fever, Dr Puru said to give this every three weeks. Mom got it last night, and this morning at abt 6am, her fever shot up to 39 degrees!!!

It has come down now, thank God. Her temperature is back to normal and she's sleeping a lot. She's been sleeping a lot more than usual this week. Maybe she's jsut getting weaker, maybe she's getting her much needed rest.

Her shingles are improving too. I think we can plan for her to come home soon. She's been in for over a month this time.

Infections getting better

Mom's kidneys are back to normal. She still has UTI and fever, but not as bad as before.
Her blood counts are ok.

So after brief consultation, her drs are going to increase the dosage of the Lenalidomide to daily, instead of alternate days.

The shingles will have to run its course, and the patch on her back will take time to heal as she is lying down the whole time. Thank God she's not in too much pain :)

More alert now

In spite of all the complications and side effects, mom is actually more alert these days. She's talking more although her words are often unclear. At least her voice is loud and strong.

Here's a list what she's having :
Urinary tract infection
Shingles
Skin - dermatitis
High blood sugar (she's on insulin)
Constipation / diarrhoea

She's on so many kinds of antibiotic, anti-viral, anti-fungal that I can't even remember them all. The good news is that her kidneys are improving, she has no new fractures, and when we ask, she says no pain.

Dr. Puru has reduced the dose of the miracle drug Lenalidomide to 5mg every alternate day. Hopefully this speeds up mom's ability to recover from all the side effects. Then we'll up it back to 5mg per day. Dr. Puru is also suggesting that momgets the IVIG (intravenous immunoglobulin) once in 3 weeks instead of monthly.

Well, just treasure every moment with mom and try to ease her pain and discomfort day by day.

Mom has shingles

Mom has developed shingles :(
Our Dr didn't diagnose this until yesterday when we asked for skin specialist to come! He thought it was bed sores. Sigh...

Dr Puru says this is a sign that the Lenalidomide is too much, and she wants to reduce the dosage until mom recovers from shingles. Mom's blood sugar is still high so she still needs to have insulin.

On a happier note, mom's kidneys are improving and she is more alert and speaking more.

Suspected infection

The new drug is bringing down her platelet count and causing some skin itchiness, dry eyes, constipation.
But more serious, is a suspected UTI. There is something that is affecting her kidney function. Her urea level has been going up although she is passing urine. The dr has sent urine for test and we should know the results tomorrow.

Hope and pray she won't need dialysis. That makes her tired and weak, and she's already not in top form right now.

Slight side effects?

Mom didn't sleep on Saturday night and she was tired the whole of Sunday. No fever, and she says she's not in pain. But she is constantly groaning - she usually does this when she is weak and not in control of her throat muscles.

So maybe this is an effect of the Lenalidomide? Tiredness is one of the most common side effects. I hope she slept well last night and is better today.

Improving every day

Mom has been coping well with the new chemo drug for the past few days: only some mild side effects - constipation, rash and high blood sugar level.

Today's blood test shows that her kidney function has gone down slightly. So they've changed her diet to a low protein, high fibre liquid. Hopefully, this will restore her kidney function.

I has a shock this afternoon. The nurse who was helping me to change mom's diaper was sniffling. At first I thought it was just irritation. Then I asked her outright if she was having a cold, and she said yes. She wasn't wearing a mask! I told her to please put on a mask or better still, take mc and go home.

Half hour later, another nurse came in to take mom's blood sugar level. This one was coughing! When I asked her to put on a mask, she said she'll get a healthy nurse to attend to mom. What about the other patients??!!!

Nurses shouldn't be working when they are not well. It's so ironic - there posters in the lifts encouraging the use of masks to prevent spreading infection and their own nurses are abiding by it.

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.

Yay, her kidneys seem to be improving

After Sunday's dialysis, mom has been on constant diuretic with all of us keeping an anxious watch on how much urine she's passing.

On Monday (yesterday) there seemed to be more urine. Toxin level in blood not so high so no need for dialysis. The doctors say that her kidneys may be merely in shock from the UTI, and they may be able to recover once the UTI is gone.

This morning, the nephrologist confirmed that she is definitely passing more urine now and it's a good sign. She may not need dialysis today :) YAY!!!

Now's a good time to visit

If you've been thinking of visiting mom in hospital, now is probably a good time. She is fresh from dialysis and she's alert. She doesn't speak very much but she hears and understands. And once in a while, she may surprise you with one of her cheeky wisecracks ;)

If you do come, please be prepared : she looks weak and frail, and her mind wanders. She may not know who you are, or she may not say anything to you. Please don't be too disappointed by this. If you are someone close to her, you'll be able to see in her eyes how much she appreciates you.

And don't put on a sad face! This morning, her doctors were very concerned about her kidney failure and very sad that yet another complication has appeared. She asked one of them outright : Why do you look so sad? After he left, she asked me what's wrong with him?! Typical of her to worry about others!

I know people sometimes feel obliged to visit. With mom, there is no need. Come if you feel like seeing her. No need to come if you are busy. She will understand. She has constant companions around her and she can't have too many visitors anyway, it will be a strain on her.

Come with positive encouragement. Be happy to see her. Bring happy vibes :) And she may reward you with a smile!

She is Block C, Room 616, Pantai Hospital. Pls sms me first and I'll let you know when's a good time to come. It's very difficult for me to take calls when I'm with her, and when I'm in office, I'm usually in meetings. Just sms me and I'll reply promptly. Or call Dad, Mike, Phyllis, Wati or Sonny.

Now it's the kidneys... sigh

Mom's kidneys stopped functioning yesterday. Despite the drip and diuretics administered, she is passing only negligible amounts of urine.

The nurses were monitoring it all night, and this morning Dr Rajbans called in a Nephhrologist Dr. Tan. He came at 9.30am and immediately recommended a dialysis session to remove the toxins in her blood.

The cause of her previous nights' fever was a lung infection. The doctors think this may have shocked the kidneys or the infection may have spread. Or it may be the Multiple Myeloma taking its toll on the kidneys.

Poor mom. She's handling it so well. She is alert and aware, cooperating with the procedures. She has no fever now, sleeps well and breathes well on her own. In fact, she looks fine and sounds fine - except that she is not passing urine.

Well, the dialysis may re-start the kidneys. Let's pray for that.

Infection

At 10pm on Friday, mom started shivering and turned icy cold. Her blood pressure shot up to 208/85, then later came back down to 145/70 and stabilised. Gave us quite a scare! We piled blankets, sweaters on her and even used a hot pack to keep her warm. Even after they gave paracetamol, painkiller, antibiotics and nebuliser, it took such a long time for her to settle down. This lasted til 11.20pm.

By the time Dr. Rajbans, the geriatric specialist, arrived, she had finally responded to the meds and was very tired.

At 5am this morning (Saturday), shivering and fever again.

Later this morning, they did x-ray, took blood, took phlegm, to test find the damn infection so that they can prescribe relevant antibiotic.

Meanwhile, mom is getting her milk so hopefully, this will give her the strength to fight the infection. I just saw her at the hospital and she is sleeping soundly. I hope she gets good uninterrupted rest and regains her strength soon.

Pls call me first if you are planning to visit, I'll let you know when is a good time. Janet : 012-385 6435

The PEG tube was successfully inserted

At 1.45pm today, mom got her PEG tube. Now she has a thick plastic protrusion from her tummy - can almost imagine it's part of a horror/sci-fi movie! Hahah :)

The whole thing took about 20 minutes, then she was wheeled back to her room where she spent most of the afternoon sleeping.

At about 6pm, the sedative wore off and she started complaining of pain. It seemed to come in spasms. She also developed a fever. Dr came and gave paracetamol and painkiller.

The cause of the recurrent fever is still a mystery. Lungs are clear, urinary tract is clear. Doctors still investigating.

By the time I left mom at 8.30pm, she said the pain was much less :)
She's not talking muc today, and still groggy. Hope she sleeps soundly tonight.

Mom gets her PEG tube today

The surgery is scheduled for 1pm today. It's a 20 minute procedure and she will be sedated.

Yesterday, she was fresh and alert. But a blood test showed that her haemoglobin had dropped to 8.5. This is very low. Her multiple myeloma can cause this, and she gets three injections a week to keep her hb at around 10 plus.

She wasgiven a blood transfusion. I quickly informed Dr. Puru who told me not to worry. A drop in hb is to be expected when she has been on antibiotics so long. Phew!

Mom was wide awake whole afternoon and evening, glued to Mr Bean and Hannah Montana :) Hope she got some sleep last night.

Mom is exercising!

The speech therapist came and taught mom some exercises. Her problem is twofold : swallowing (muscles in throat) and chewing (muscles in cheeks, mouth and tongue). Great blessing is that mom is alert enough to follow her instructions and do the exercises.

Later on in the afternoon, mom did another round of exercise. I think she REALLY wants to be able to eat again.

A Gastroenterologist came to see mom. He will be the one inserting the stomach tube or PEG on Thursday afternoon. He says it's a simple procedure - only about 20 minutes and she will be under mild sedation, same level of sedation as someone undergoing an endoscope. There will be surgeon and anaesthesist assisting. There is some risk, but very slight.

After this, she will fast for 24 hours and the nose tube will be gone, gone, gone!

She watched tv all afternoon, reading the subtitles. Then after her 6pm feed, she fell sound asleep until her 9pm feed. For a change, the family all came late so she had nice interrupted sleep.

The little bedsore on her right heel is healing well. To prevent further bedsores, Dr Ridzwan wants her to sit up in a wheelchair for 1 - 2 hours a day. She's taking this well.

Now that she's gaining strength and well-being every day, I pray that she will be strong enough to sail through the PEG minor surgery with grace and ease. Then come home and start eating! For now, eating and drinking is strictly forbidden.

Visiting Mom

She is in Block C, Room 616. Please don't send flowers or fruits - there is no space in the room!

Please visit only during dinner hours (6 - 8pm) as her mornings are busy with treatments and in the afternoons she needs her rest. She has requested for us to let her sleep after her lunch feed (12noon - 5.30pm) as this is the only time when the nurses don't come in so much.

Daily Updates on Mom

Since mom has been hospitalised, I have not had time to make calls and keep everyone informed. The best I can do is to squeeze in a group sms. In the earlier days, I just could not talk about it as she gave us quite a scare and her condition was changing from day to day.

Now that she has stabilised, I've set up this blog so you can keep track of her progress.

First, a little backgound :

She had a stroke in mid 2002. Then a year later, she was diagnosed with Multiple Myeloma, a plasma cell cancer. This is being well controlled by Dr. Puru, a very senior haematologist at Ampang Hospital (govt hospital).

Then in 2007, mom had breast cancer and immediately opted for a mastectomy. She's amazingly decisive and very practical. No self-pity or dramatics.

Last year (about May), the Multiple Myeloma became less responsive to her oral chemo : Thalidomide. Her bones got thinner and developed lesions. A fracture in her lower back made her bedridden :( The wonderful people at HOSPIS came and loaned us a hospital bed and reclining wheelchair. They also taught us to maneouver her in and out of bed. God bless them, they are really providing a much needed service.

Soon after, her right arm fractured. Then her left leg. And all this happened while she was bedridden! Scary!

Can you imagine her discomfort when her right arm had to be bound in a plaster cast? Her left one is immobile cos of the stroke. Now she has no arms to eat, brush her teeth or even scratch her nose. And yet, she didn't complain. Our wonderful maid Bena was at mom's beck and call and attended to her every need.

The nurses warned us that the cast would be itchy and hot, but mom said sheliked it cos it made her arm feel more comfortable. Isn't that just amazing?!

In December, Dr. Puru halted this by adding on another chemo tablet : Cyclofosphamide I think(?). Mom's bones healed!

In January, we got some great news: there is a brand new wonder drug specifically for Multiple Myeloma. It's very new in the market but has been tested with fantastic results for the past 5 - 7 years in the US. Now available in Singapore, it's called Lenalidomide and it's so new that mom will be the second person in Malaysia to apply for it to be brought in. This should arrive in a month or so.

While we were ecstatic at the thought that mom's multiple myeloma will be stalled, and she can regain her strength and mobility... and maybe start going out again (you know how she loves going out to makan at shopping complexes!) there came another blow.

She started developing fever and cough. We admitted her to Pantai where she was diagnosed with pneumonia. Strong antibiotics soon put her right again, in time for her to be discharged and to receive the Henry Dunant Medal from the MRCS.

That was a very moving ceremony, and it was so touching to meet all her old friends and former colleagues who came from near and far to congratulate her. It was beautiful. But it was also tiring. She was exhausted.

A week later, she started coughing again. With lots of phlegm and fever. On Thursday evening (12th March 2009), we had to rush her to hospital again. This time, while waiting for the ambulance to arrive, she started choking on her phlegm and choked. She started turning blue! Thank God the ambulance arrived in time and immediatly gave her oxygen.

She was admitted into the ICU at Pantai and stayed there for 2 nights. Our regular Dr. Ridzwan referred her to a Geriatric Specialist Dr. Rajban. When she came out, she was disoriented, not talking much, not eating much, sleepy most of the time.

On Saturday, Dr Ridzwan called me and told me that her thyroids are defective and this is causing her tiredness. They'll start hormone tablets and she should improve in a weeks' time. Her fever came down but she was still sleepy and not eating. She grew weaker and weaker. She seemed to be too tired to even chew and swallow her food.

On Monday, Dr Ridzwan called and informed me that she is not swallowing her food. He thinks that because she is not swallowing properly, food particles goes into her lungs and causes the recurrent infection and fever. The doctors recommended that she be fed through a nose tube.

This was a severe shock for us. I took it a a sign of decline and was upset cos I know how much she enjoys her food. But no choice. She was too weak to eat, too weak to stay awake, too weak to even recognise us. This was a bad time.

So they inserted the tube and taught us how to feed her.

After we got over the shock, we were happy to see how fast she started to improve. Day by day, she got stronger and became more and more alert. She could recognise us. She could order us around and make her typical cheeky comments. Yay! Thank God!!

Now, she is quite stable. She still has a recurrent fever. Mild and easily brought down with panadol. But the drs don't know what is causing it. They just took a urine sample today for testing.

Tomorrow, she has an appointment with a speech therapist who can hopefully teach her to swallow. This will allow her to eat. Even a bit, just for pleaasure, will be great. They will replace the nose tube with a tube that goes directly to her stomach - a PEG tube. This will probably take place on Thursday or Friday.