Hi Alwin.
Look time no talk; but I know you hear me when I was talking to you.
You know when there's no one to turn to, I will find you to talk to. Really nothing much; but don't understand why there are usually people that do things whenever they know you actually don't like it but they still do it. What the hell are their intentions? I just don't get it sometimes. I know by now, you would tell me that there's nothing to get. Because we are us. I guess I have to avoid these from happening again by taking steps now.
I will talk to you later brother. I have to start my plan.
Thanks for listening.
Friday, November 16, 2012
Tuesday, October 23, 2012
October - 4th week
10/21/2012
Hey brother. Can't believe its already been 2 months since you left us physically.
Don't worry, you didn't miss anything. Vancouver has been raining like crap. I've been taking good care of your stuff. Life is neither beautiful nor bad here. Best part is with you.
Mom called last night. Its suppose to be Ching Ming Festival in Hong Kong. We might come to the portal to visit you a bit.
Cheers.
Hey brother. Can't believe its already been 2 months since you left us physically.
Don't worry, you didn't miss anything. Vancouver has been raining like crap. I've been taking good care of your stuff. Life is neither beautiful nor bad here. Best part is with you.
Mom called last night. Its suppose to be Ching Ming Festival in Hong Kong. We might come to the portal to visit you a bit.
Cheers.
Monday, October 15, 2012
October - 3rd week
10/19/2012
Hi Brother.
Mom called last night. Alicia told her about the meet up between you and Jenny. She was relieved to hear that you are doing fine.
Everyone of us are fighting to live in here. You are a hero. You fought against something not anyone of us have encountered.
Lol maybe J'avo (the resident evil 6 virus) will conquer the world too. Who knows what will happen every next second of our lives?
Glad you went there first. You never changed, you love enjoying.
Ttyl!
10/18/2012
Hey brother.
Small world eh. I didn't know you knew Amy Huang. She was probably your co-worker.
It was Dad's birthday. They are in Korea now I believe. It must be hard for them since we usually celebrate both you and Dad's birthday together. But hey we are still celebrating your birthday!
I miss a partner playing RE with me. Geez. Why don't you link play with me from the other world =) that'd be nice.
Miss u man. See you soon. Gotta go back to work!
10/17/2012
Hi Alwin,
I keep having Sakura Wars music in my head. Maybe one day I will bring you the song, or you can come back one day to listen to me banging it!
Just so you know if you want musics, I can always play them out!
Cya!
10/15/2012
Hey brother. Jenny mentioned to me this morning that she talked to you last night. And you brought a friend home too. Is that right? You guys had a long talk. You must've heard us celebrating your birthday and came back to talk to us!
I'm glad to hear that you are ok. This terrible world is tougher than it was supposed to be now. Sky is dark and things are yellow. Make sure you don't wait for us and enjoy yourself first. As will we!
Laters!
Hi Brother.
Mom called last night. Alicia told her about the meet up between you and Jenny. She was relieved to hear that you are doing fine.
Everyone of us are fighting to live in here. You are a hero. You fought against something not anyone of us have encountered.
Lol maybe J'avo (the resident evil 6 virus) will conquer the world too. Who knows what will happen every next second of our lives?
Glad you went there first. You never changed, you love enjoying.
Ttyl!
10/18/2012
Hey brother.
Small world eh. I didn't know you knew Amy Huang. She was probably your co-worker.
It was Dad's birthday. They are in Korea now I believe. It must be hard for them since we usually celebrate both you and Dad's birthday together. But hey we are still celebrating your birthday!
I miss a partner playing RE with me. Geez. Why don't you link play with me from the other world =) that'd be nice.
Miss u man. See you soon. Gotta go back to work!
10/17/2012
Hi Alwin,
I keep having Sakura Wars music in my head. Maybe one day I will bring you the song, or you can come back one day to listen to me banging it!
Just so you know if you want musics, I can always play them out!
Cya!
10/15/2012
Hey brother. Jenny mentioned to me this morning that she talked to you last night. And you brought a friend home too. Is that right? You guys had a long talk. You must've heard us celebrating your birthday and came back to talk to us!
I'm glad to hear that you are ok. This terrible world is tougher than it was supposed to be now. Sky is dark and things are yellow. Make sure you don't wait for us and enjoy yourself first. As will we!
Laters!
Wednesday, October 10, 2012
October - 2nd week
10/10/2012
Yo bro. Long time no talk. I haven't even have time visiting you physically. But I guess that do not matter much as long as I visit you spiritually. Tomorrow will be my national examination for my CMA. I know you will wish me good luck. Please do; I will do well!
Ttyl!
Yo bro. Long time no talk. I haven't even have time visiting you physically. But I guess that do not matter much as long as I visit you spiritually. Tomorrow will be my national examination for my CMA. I know you will wish me good luck. Please do; I will do well!
Ttyl!
Monday, October 1, 2012
October - 1st week
10/4/2012
Hey brother. Alicia and I just finished playing a few chapters of RE6. It was fun and exciting. I hope you are also seeing and feeling this. We did not forget your laughter while we were playing those non-sense death scenes. Haha. Really hope you can play with us.
Maybe you are already ahead of us. Who knows what is in that world, right?
See you later.
10/3/2012
Brother. Resident Evil 6 and the new CG movie is out. I hope you can watch and play with me. Will never forget our times playing and watching this together.
If parallel world really exists, like you and I believe in, I hope you can also play on the other side; with me.
It really might exist. I just want science to prove this.
Hope to play with you soon.
10/1/2012
Hi brother. Its finally over 49 days since your leave. Everyone is back to normal. It felt like you had never been here. Or the other way around. It was a long dream. But we know this is real. Mom is still crying over it across the pacific ocean.
But we we know we have to fight this through. Maybe we will fight the same disease you got, maybe not, who knows? All we know is this world on Earth is cruel. All we know is we are glad to be one family, and will always be even the Earth is destroyed.
See you man.
Hey brother. Alicia and I just finished playing a few chapters of RE6. It was fun and exciting. I hope you are also seeing and feeling this. We did not forget your laughter while we were playing those non-sense death scenes. Haha. Really hope you can play with us.
Maybe you are already ahead of us. Who knows what is in that world, right?
See you later.
10/3/2012
Brother. Resident Evil 6 and the new CG movie is out. I hope you can watch and play with me. Will never forget our times playing and watching this together.
If parallel world really exists, like you and I believe in, I hope you can also play on the other side; with me.
It really might exist. I just want science to prove this.
Hope to play with you soon.
10/1/2012
Hi brother. Its finally over 49 days since your leave. Everyone is back to normal. It felt like you had never been here. Or the other way around. It was a long dream. But we know this is real. Mom is still crying over it across the pacific ocean.
But we we know we have to fight this through. Maybe we will fight the same disease you got, maybe not, who knows? All we know is this world on Earth is cruel. All we know is we are glad to be one family, and will always be even the Earth is destroyed.
See you man.
Friday, September 21, 2012
September - 4th week
9/21/2012
Hi brother. I've been busy with exam lately. Sorry if we didn't talk to you much. Did you come home these few days? Something wasn't regularly happening was happening =) At least we know you are around.
Mom has an infection on her stomach membrane. She's in constant pain now. Hope the medication goes well with her. Dad is in the States working. We are all battling for our lives; just like what you did during your last moments in your body.
You never lost. It wasn't the battle between your will and your sickness. It was the battle between your mind and yourself. The body wasn't meant to be yours after 35 years.
Soon, we will all leave our body. And meet you there.
Help us say hi to grandma. Ttyl!
9/24/2012
Hi brother. I just finished my mock exam; it was interesting - I'll leave it at that =)
4 more days, and we are suppose to let you go fly further. That's what the Chinese says. I'm sure you are still around; but its time for you to fly away - or play around. We still don't know what is on the other side of the world yet; only you do. Is it heaven like the religion says? Is it just like you flying around the sky? Or is it like the parallel world that you and I believe in? Whatever it is. We will meet again. Your spirit came to this baby body, and then took care of me and yingying, and showed us the experience. I wonder why you were the chosen one showing us this.
Nothing makes sense in this world. And that's why everything happens for a reason without any scientific explanation.
Well - we'll see how much physical we can still get in here before meeting you again. Laters brother.
Hi brother. I've been busy with exam lately. Sorry if we didn't talk to you much. Did you come home these few days? Something wasn't regularly happening was happening =) At least we know you are around.
Mom has an infection on her stomach membrane. She's in constant pain now. Hope the medication goes well with her. Dad is in the States working. We are all battling for our lives; just like what you did during your last moments in your body.
You never lost. It wasn't the battle between your will and your sickness. It was the battle between your mind and yourself. The body wasn't meant to be yours after 35 years.
Soon, we will all leave our body. And meet you there.
Help us say hi to grandma. Ttyl!
9/24/2012
Hi brother. I just finished my mock exam; it was interesting - I'll leave it at that =)
4 more days, and we are suppose to let you go fly further. That's what the Chinese says. I'm sure you are still around; but its time for you to fly away - or play around. We still don't know what is on the other side of the world yet; only you do. Is it heaven like the religion says? Is it just like you flying around the sky? Or is it like the parallel world that you and I believe in? Whatever it is. We will meet again. Your spirit came to this baby body, and then took care of me and yingying, and showed us the experience. I wonder why you were the chosen one showing us this.
Nothing makes sense in this world. And that's why everything happens for a reason without any scientific explanation.
Well - we'll see how much physical we can still get in here before meeting you again. Laters brother.
Monday, September 17, 2012
September - 3rd week
9/17/2012
Good morning brother. Is there a morning and a night btw over there? Probably not!
Well. Its over 30 days since you left your body. Feels a little too fast. Things around us still reminds us of you when you were physically with us, even little things like singing a song to me which came out from nowhere in the street. And sometimes, its unfortunate (or fortunate) that life is pushy. We still feel your presence. Nothing is stopping us.
Take care of Yingying for me a bit; I might be focusing on exam.
See ya.
Good morning brother. Is there a morning and a night btw over there? Probably not!
Well. Its over 30 days since you left your body. Feels a little too fast. Things around us still reminds us of you when you were physically with us, even little things like singing a song to me which came out from nowhere in the street. And sometimes, its unfortunate (or fortunate) that life is pushy. We still feel your presence. Nothing is stopping us.
Take care of Yingying for me a bit; I might be focusing on exam.
See ya.
Monday, September 10, 2012
September - 2nd week
9/9/2012
Hey brother. Its been 30 days now since you left. And right at that night, I dreamed of myself grieving with Mom and Alicia. Seems like everything is all set up here. Its telling me to move on and live on. I am going back to work tomorrow.
I hope you have a good trip, we all will join you soon. Cya.
9/12/2012
Hey yo man. I just heard my coworker about how he would bring his brother out to play. That reminds me of you bringing me out to play when I was young. But hey those times will not be the last time you bring me around to play. The day will come again when you can bring me around, to show me the best places in the world.
Take care bro. Don't worry about us.
9/14/2012
Hey bro. I touched the parallel world again. Although I didn't quite meet you there. You have more control than I do. Things are pushy in here. We fight to live, and yet human race in here argue, hate, and blame; when we are suppose to love. It must be hard for human race to learn this.
Well again the world here is pushy =) So I gotta get back to work! See you somewhere!
Hey brother. Its been 30 days now since you left. And right at that night, I dreamed of myself grieving with Mom and Alicia. Seems like everything is all set up here. Its telling me to move on and live on. I am going back to work tomorrow.
I hope you have a good trip, we all will join you soon. Cya.
9/12/2012
Hey yo man. I just heard my coworker about how he would bring his brother out to play. That reminds me of you bringing me out to play when I was young. But hey those times will not be the last time you bring me around to play. The day will come again when you can bring me around, to show me the best places in the world.
Take care bro. Don't worry about us.
9/14/2012
Hey bro. I touched the parallel world again. Although I didn't quite meet you there. You have more control than I do. Things are pushy in here. We fight to live, and yet human race in here argue, hate, and blame; when we are suppose to love. It must be hard for human race to learn this.
Well again the world here is pushy =) So I gotta get back to work! See you somewhere!
Saturday, September 1, 2012
September - 1st week
9/1/2012
Hey brother. Life is still really challenging, it keeps coming. Without you, the loneliness and silence could be really depressing at nights. But my focus wasn't lost. I just finished my re-test Friday; I think I did better thanks to your spirit with me. Please continue to back my ass up like how I back up other people's asses. My next one is next Thursday.
Jenny is coming back tomorrow night and it will be her birthday too. Hope you will be here with us!
Sometimes I'm jealous that you are there first, life is difficult here. We have to work and make money; we have to live and fight for lives.
But don't worry, I don't mean that I won't live on. I will stay as strong and as long as I can in this world, just like your last moments on Earth.
You must be getting used to it now. You enjoy your flight. We got this here. Take it easy bro.
9/3/2012
Hey brother. Was a long day. Still cramming with my exam. A little afraid that I do not have enough time now.
I am starting to feel the moving-on life now. Cooking and eating by myself. Reading and studying by myself. It is not easy. I am stoned periodically. And the vision of you keep jumping in. Isn't it annoying? Good memories with us we have, but I keep getting the bad moments in my head.
This physical life is a dream... anyways - ttyl!
9/6/2012
Hey bro. I finished my exam 4... hope all is well.
It will soon be one month after you left your body. Everyone is getting back to life. Though I find quite a bit of people, maybe its just me, pretended to care so much but never anymore after the incident. Well only you know better than I do now.
Hope all is well with you. Help me say hi to grandma!
Hey brother. Life is still really challenging, it keeps coming. Without you, the loneliness and silence could be really depressing at nights. But my focus wasn't lost. I just finished my re-test Friday; I think I did better thanks to your spirit with me. Please continue to back my ass up like how I back up other people's asses. My next one is next Thursday.
Jenny is coming back tomorrow night and it will be her birthday too. Hope you will be here with us!
Sometimes I'm jealous that you are there first, life is difficult here. We have to work and make money; we have to live and fight for lives.
But don't worry, I don't mean that I won't live on. I will stay as strong and as long as I can in this world, just like your last moments on Earth.
You must be getting used to it now. You enjoy your flight. We got this here. Take it easy bro.
9/3/2012
Hey brother. Was a long day. Still cramming with my exam. A little afraid that I do not have enough time now.
I am starting to feel the moving-on life now. Cooking and eating by myself. Reading and studying by myself. It is not easy. I am stoned periodically. And the vision of you keep jumping in. Isn't it annoying? Good memories with us we have, but I keep getting the bad moments in my head.
This physical life is a dream... anyways - ttyl!
9/6/2012
Hey bro. I finished my exam 4... hope all is well.
It will soon be one month after you left your body. Everyone is getting back to life. Though I find quite a bit of people, maybe its just me, pretended to care so much but never anymore after the incident. Well only you know better than I do now.
Hope all is well with you. Help me say hi to grandma!
Wednesday, August 22, 2012
August 4th week -
8/22/2012
Hi Brother. Haven't been talking to you lately. How are you? Its 5AM in the morning. I heard from Alicia yesterday that you've been playing SF4 using another character. Is that true? It must be a message to tell us that you have been changing. That's nice.
Jenny is departing to the States now. And soon Mom and Dad will go back to Hong Kong too, leaving me and Alicia behind here. You better visit us more often!
Laters bro!
8/24/2012
Hey Brother. Today I grabbed the urn of your remains. I felt your existence. I know you are busy getting use to your different form now. We decorated your place nicely. You have your Kusuha, K-On Character, some comics and your favourite Giroux jersey with you. Though they might not be touchable to you, I hope you can still feel that your collection still exists physically.
We all miss you there. You have never been forgotten, and never will be forgotten bro.
See ya.
8/28/2012
Hey brother. I had been busy working with my business report. Didn't talk to you recently. Dad and Mom will be leaving in two days. Three of us will be left here soon. Though your physical existence is not here, I know that you will indirectly take care of us.
Miss you a lot. Still don't understand why it happens so fast. We are getting use to it, but your voice and noise are missing here.
Are you listening? I'm feeling lonely. I don't know what to feel like. Is life gonna go on without you? Who am I to play Resident Evil 6 with? Who am I to laugh at our inside joke with? Who am I to ask for help with computer?
Seeing your transformer tablet and PS Vita here are somewhat depressing. But don't worry, I'm taking care of them.
See ya soon!
8/30/2012
Hey bro. I finally met you. You are still as usual playing your games without hearing people talking. But its nice to hear you say you are fine. I was a long journey today, things are getting extremely challenging that I'm not sure if I can handle for too long. Mom left her purse in the flower place where she bought you flowers 15 minutes before boarding. I had to rush and get it to her with maximum (driving) speed. At one moment I almost open the gate to see you too.
Everything will start to die down without Mom being here. Please take care of us brother. We need you here.
Hi Brother. Haven't been talking to you lately. How are you? Its 5AM in the morning. I heard from Alicia yesterday that you've been playing SF4 using another character. Is that true? It must be a message to tell us that you have been changing. That's nice.
Jenny is departing to the States now. And soon Mom and Dad will go back to Hong Kong too, leaving me and Alicia behind here. You better visit us more often!
Laters bro!
8/24/2012
Hey Brother. Today I grabbed the urn of your remains. I felt your existence. I know you are busy getting use to your different form now. We decorated your place nicely. You have your Kusuha, K-On Character, some comics and your favourite Giroux jersey with you. Though they might not be touchable to you, I hope you can still feel that your collection still exists physically.
We all miss you there. You have never been forgotten, and never will be forgotten bro.
See ya.
8/28/2012
Hey brother. I had been busy working with my business report. Didn't talk to you recently. Dad and Mom will be leaving in two days. Three of us will be left here soon. Though your physical existence is not here, I know that you will indirectly take care of us.
Miss you a lot. Still don't understand why it happens so fast. We are getting use to it, but your voice and noise are missing here.
Are you listening? I'm feeling lonely. I don't know what to feel like. Is life gonna go on without you? Who am I to play Resident Evil 6 with? Who am I to laugh at our inside joke with? Who am I to ask for help with computer?
Seeing your transformer tablet and PS Vita here are somewhat depressing. But don't worry, I'm taking care of them.
See ya soon!
8/30/2012
Hey bro. I finally met you. You are still as usual playing your games without hearing people talking. But its nice to hear you say you are fine. I was a long journey today, things are getting extremely challenging that I'm not sure if I can handle for too long. Mom left her purse in the flower place where she bought you flowers 15 minutes before boarding. I had to rush and get it to her with maximum (driving) speed. At one moment I almost open the gate to see you too.
Everything will start to die down without Mom being here. Please take care of us brother. We need you here.
Thursday, August 16, 2012
August 3rd week -
8/15/2012
Hey brother. It's so unreal. Just exactly one week ago, you said Happy Birthday to me. And you are not here anymore. Where are you now? Are you getting use to it yet? My physics knowledge from learning string theory is starting to make sense now. Though there isn't any experiments or evidence. The afterlife must be where you are now, one of those 11 dimensions.
8/16/2012
Brother, we are all getting really nervous now. It is within 24 hours before we say goodbye to your body and bring it to you. You will also be surprised what we will bring you as presents. I'm not sure what to feel still, except a little afraid. But you weren't even afraid when we told you to not be, so why should I?
Though I have not seen your soul yet in my dream, I know you are definitely around.
Talk to you later again.
8/17/2012
-
8/18/2012
Hey Brother, it was a nasty day but honorable. I had the honor to transfer your shell back to you today. Although it was hard, we paid our last respect to your shell and brought it back to you. We all wish one day we will meet you again. You must be there today in the chapel with us. You must have stopped the DVD player because you didn't like to show it all. You never changed. You are always with us.
Geez brother, you really never change. Talk to you soon.
8/19/2012
Hey brother. We went to picnic today with all the cousins because its Sony's last day here in Vancouver. She will be going back to China to work now. Sometimes when I think about it, life does suck sometimes. We have to study our ass off just to get a job. Then the job gives you money to live. And all we are doing is playing a survival game like hunger games.
Mom is leaving to Hong Kong at the end of this month, Jenny is away for two weeks after two days. Alicia and I will be alone soon. Your missing voice will definitely be an ice-breaker at home. How I wish you to be here. But I know that would be too greedy since you must be enjoying that freedom.
Talk to you soon.
Hey brother. It's so unreal. Just exactly one week ago, you said Happy Birthday to me. And you are not here anymore. Where are you now? Are you getting use to it yet? My physics knowledge from learning string theory is starting to make sense now. Though there isn't any experiments or evidence. The afterlife must be where you are now, one of those 11 dimensions.
8/16/2012
Brother, we are all getting really nervous now. It is within 24 hours before we say goodbye to your body and bring it to you. You will also be surprised what we will bring you as presents. I'm not sure what to feel still, except a little afraid. But you weren't even afraid when we told you to not be, so why should I?
Though I have not seen your soul yet in my dream, I know you are definitely around.
Talk to you later again.
8/17/2012
-
8/18/2012
Hey Brother, it was a nasty day but honorable. I had the honor to transfer your shell back to you today. Although it was hard, we paid our last respect to your shell and brought it back to you. We all wish one day we will meet you again. You must be there today in the chapel with us. You must have stopped the DVD player because you didn't like to show it all. You never changed. You are always with us.
Geez brother, you really never change. Talk to you soon.
8/19/2012
Hey brother. We went to picnic today with all the cousins because its Sony's last day here in Vancouver. She will be going back to China to work now. Sometimes when I think about it, life does suck sometimes. We have to study our ass off just to get a job. Then the job gives you money to live. And all we are doing is playing a survival game like hunger games.
Mom is leaving to Hong Kong at the end of this month, Jenny is away for two weeks after two days. Alicia and I will be alone soon. Your missing voice will definitely be an ice-breaker at home. How I wish you to be here. But I know that would be too greedy since you must be enjoying that freedom.
Talk to you soon.
Wednesday, August 8, 2012
August 2nd week -
8/8/2012
A morning call woke me up - Dad called to mention about Alwin puked out some bios with blood. He is not well. Given this condition as told by physicians and nurses, Alwin probably only have days left - predicted 48 hours. He was somewhat awake, but his liver is already broken down, meaning that his consciousness will slowly die down. His whole body is yellow, that includes his eyes. We called for the Chinese Doctor who gave him the sacred medicine back a month ago. He came to do a check-up on Alwin, but the words from him were not bright.
Alwin asked if he's dying soon. We nodded. He did not take our words the first time. He kept on asking other people (relatives) around him. He found it hard to believe. At a moment I showed him the date from my phone, he nodded and said "Happy Birthday..." Everyone clapped and celebrated, not only because its only my birthday, its because he celebrated with me too. The cake was taken out. He tried so hard and lift up his hand to do a "Victory" sign with me while taking pictures, with everyone else also. I know that in the future when I look back at this picture, I will not be able to hold my tears. But I am really happy, that he can celebrate with me. That is all I wanted for my birthday.
Nothing can replace a brother's love, care and friendship. A brother is like your friend. Alwin would teach me how to play games and enjoy it together. A brother is like your caretaker. Alwin would take care of me when I needed help. A brother is like your brother-in-arm. Alwin would encounter any problems with me and solve it out together. I showed him a message, which I wrote down on a piece of paper,
"Once a brother, always a brother. We are brothers-in-arms forever."
He nodded and acknowledged. He is afraid to go. He is scared. I told him there's nothing to be scared of. What is death? Why are people afraid of dying? Pain? End of life? Or separation? There's no pain. It is not the end of life. And the separation is temporary but we will all be going to the same place eventually. There's nothing to be afraid of. I told him sometimes some people are destined to live short because the world is too horrible to them. And yes the world has been horrible to Alwin at times. There is no explanation why sometimes the world is unfair, until you know that you will be leaving early.
One thing he definitely will miss is his enthusiasm on gaming. He will miss being able to play the new games he ordered that will come in the future - he has yet to play.
He is tired now, tired of going to the toilet, tired of needing to greet everyone, tired of fighting without a mission, but he hasn't given up. He is afraid but never said he has given up. He said he wants to live on.
Mom called Alwin's ex-roommate to come over with priests and said prayers to him and cleansed him with oil. Mom also said prayers to him with them. It was a touching one. To thank God that Alwin is his son, to thank God that we are a family, and to thank God that Alwin has enjoyed his life.
Noon went pass quickly. Alwin pukes once every hour or two. Repetitively mentioning that he's afraid, we stayed by his side. More cousins came, and one even contacted Alwin from Hong Kong. Alwin tried to listen, he heard everything, but his consciousness can only do so much that he ended up asking what happened afterwards. We all know he is going soon, we will miss him when the time comes. And there is nothing to be unhappy or depressed about. Life is short. Alwin enjoyed most of his life and that's all it matters.
Mom, Dad and Alicia stayed over in the hospital. I went home first, and if time comes, I am prepared.
God if you must and when you must, please take Alwin's hand. We entrust thee to give peace to him. He has suffered enough. Thank you for letting me celebrate my birthday with Alwin.
Amen.
8/9/2012
I arrived at the hospital at 11AM seeing cousins here helping Alwin massage his foot. Not long after the team came in and asked us about the procedure that was mentioned on Tuesday. They will slowly take his antibiotics away, and soon his blood supplies, which might lead to giving him a day or at most only two since his blood count to decay to zero.
Alwin keep saying he doesn't want to die. But I explained why so afraid. Die is a word that defines a transport, a warp that takes you to another similar body of yours on the other world. And he added "Parallel world". Yes, thats the word. We both believe that there is a parallel world. If he's afraid that he might not be able to play games in this world, the other world is all set for him to play more. Whether this is called heaven, warped world, or some other dimension, he will be better off to warp in this parallel world, where there will be no concerns and suffer, there could be games!
This battle has been long. The day will soon come when he will be wrapped there, where everybody meets eventually.
Nurse came in and took off his TPN, and put him on sugar water. He is now only on what was told left - the Hydromorphone to kill the pain, and Ativan to make him sleep comfortably. He can still hear, and he can still somewhat open his eyes. But his breathing pattern changed - the breathing that when the body is shutting down, which he indicated that his last breath could be tonight.
The nurse that was primarily responsible for Alwin came in and said goodbye, for he will be on a 5-day holiday, which when he comes back that room will not be the same anymore. Thank you for being such a beautiful nurse to Alwin. You have been best, and will always be.
His coworkers came to pay a visit. But Alwin could only open his eyes. He was trying so hard to acknowledge them but wasn't able to. His eyes opened and was hard to even look at the direction he wanted to. They one by one left words to him. Though he might not be able to go through all the words, he knew they were all here, and that's all it matters. Once a team, always a team.
All the cousins also arrived. And they all shared their good experience and spoke besides Alwin's ear. We knew he can hear it. We knew he can feel the love. We are all forever cousins.
His breathing pattern is slowly changing. And he is not as awake anymore. I looked at the IV pole with confusion, and it reminded me when I first cried looking at it when Alwin was going through the pain of chemotherapy, with all those floating hands movement. Now this pole is almost empty. He is going soon. What should I be feeling like? I want to cry because of the separation. I want to celebrate because of the new life. I don't know what to feel like without a brother in this world. Life will be different although it goes on. Will I be able to move on without my brother on my life?
I keep reminding myself that he's not leaving us. What we miss will be his voice, his response, and his body. But his memories, his spirit and his energy will never leave us, they will all be eternally with us.
8/10/2012
The details to his condition do not matter anymore. He looked like he is in a really comfortable position. He scratched his nose, opened his eyes, knew me and Mom besides him, but the looking of wanting to live still stays in his eyes.
When we say it's time to let go, that does not mean we are literally letting him go, but letting him go to a better place where there's peace, there's better games, there's infinite money to spend, and there's nothing to worry about.
Most of the time we don't know what we are living for. As for Alwin, he enjoyed his gaming life, enjoyed spending all his money that he earned into his favorite hobbies though he could be in a financial crisis, enjoyed laughing out loud regardless of the environment, enjoyed banging loud musics at late night. And out of all these, he never did steal, get into physical fights with outsiders, or in anyway hurt anyone. You can never find anyone that has a heart as kind as his - something that we need to all learn to have. You will never hear someone that would said that he should go to heaven earlier so that he can save resources to other patients.
And that is my brother, something that will never change.
Once a brother, always a brother. Thank you Brother, for being such a good brother to me, for being such a kind-hearted person. You never lost this battle, you won it. Your mind never gave up. You will always win. As that's your name Alwin.
We have a code. When we eventually meet on the other side of the world, we will "tweet" this code and find each other again.
8/11/2012
Life is full of experience. All these things that we did to him during these couple of weeks is an experience that we learn from Alwin's spirit in his body. He taught us a lot of things, something that we will never forget. I admire you, and I admire myself to have been, and always will be your brother. You had enough of this in this world. We will see you on the other side.
RIP Brother.
---
Hey Brother, I just woke up from a nap (4PM). Looks like everyone was tired, it felt like everyone was taking a rest from giving you a big lift to fly. It does feel weird without your physical body around. But I know you are watching us, including while I am typing this entry. You are somewhere up there now enjoying your eternal freedom, and we told you that you would love it. Knowing that I have an exam and assignment coming up, sometimes I think how much more do we have to face and fight until meeting you. But you enjoy, we got this, and will see you soon bro!
Its 2:50AM. I bought a new game a few days ago called the PayDay: The Heist. Thought you will be able to play it with us, but you went away first to enjoy the sunlight, or even PS10 up there. I played it with Alicia and Lok for around an hour. But we sure are missing something here man... you are not only a brother to us, you are also the best gaming buddy with us. We are already starting to miss you like crazy brother... but don't want to miss you too much because I know where you are now are really happy. Let us handle something in this world first. And we will be there with you soon.
... its hard to not get rid of that last look of yours and the last word of yours. And you tried so hard using this body to respond to us in the last two days. You did so well that you hung in there until you fulfilled my birthday wish - which is to celebrate my birthday with you. I will never forget this. I know you are looking at me entering this entry now. But this is the only way to let you see my words. Good night brother.
8/12/2012
Hey brother. I woke up at 9:30AM from Mom's laundry machine running as usual again. I didn't completely see you in my dreams, but I felt like we met. Life will be different without your laughter across the room at night times, without you coming into my room to ask for accompany when you are out of games to play, and without your cursing languages when you are mad. Last night we had a full dinner made by Kevin. Everyone was really silent during the dinner. We miss you lots. We all felt the same thing - if you were here you would like it.
I know you miss us too. You go have fun. We are coming soon.
It's 7:45PM, we went to Uncle Williams's place with all the cousins for a potluck. It does feel weird without your laughter when it was so crowded. We left at around 8:30PM after dinner. If you were here, I'm sure you would stay and play board games and card games with the cousins until midnight.
I feel you are here around us. It still feels like a dream. Everything happened too fast. I know you are here with us. Don't worry brother. You don't have to feel any burden now. Let us continue the war of these bodies. I promise you we will see you soon.
8/13/2012
Hey brother... I looked at your stuff (don't worry man, we didn't go through them). And I caught something that we have in common that we never really knew - that is to buy stuff just to satisfy that moment of joy. Like how I bought my camera, you like to buy stuff to make yourself happy, although we are not sure if there really is a long-term use of the things we bought. And I am glad you did that. Living in this body is about enjoying. We should enjoy as much as we can in this body. No one can be as happy as you were/are. Talk to you soon.
8/14/2012
Brother. I'm back to work today. Everything really happened too fast that I think we are still in a shock, even Jenny agrees. I know that we shouldn't be emotional, but we cry because of the departure, not because you are in a better place. We should be all happy because you are enjoying your freedom. Yesterday we finally took your shell out of the hospital and we found a really good place for it. Lucky you, originally all the spots were only at the corners. I guess luck never really left you. You are lucky to be Alwin.
Its 2PM now. I cannot believe the day you left your body was only 3 days ago. It is such a shock that it felt like a dream, a 28-year-old dream. Something must've been meant to be. I was meant to have this 28-year-old dream here with me. But it isn't a dream. You are with me physically for 28 years. This count will never end now. You went first, we are all coming soon.
Brother, my co-workers gave me hugs today. The CEO came to me and tell me it takes a year to get out of this. And its only been 3 days. Geez. I know I should be re-focusing on work and study. But how can one live without a brother physically besides them being supportive and a gaming buddy? I feel you last night. You dropped my cup in my room didn't you? No one else was near my room and it fell. It must be you coming back. I will let you do so. But once you are use to your form, you should try flying higher. Then you have to be the one to teach us fly instead soon. Talk to you later bro.
8/15/2012
Hey brother, I am having troubles with talking to anyone now. Everyone I try to talk to either hasn't experienced it, or do not know how to respond back, or they just don't understand. No one is learning from this. The miscommunication and miss calls are happening again. I am not sure if there is any other way anyone can learn if this incident doesn't spark them. The only one to turn to now is you.
The day of funeral is coming. I know you are up there waiting for us. I know I will not be able to be brave enough to see your shell gets cremated. But I know it is a ritual, a celebration, and a transfer of energy. I'm lost, but I need to continue on. You just wait bro.
A morning call woke me up - Dad called to mention about Alwin puked out some bios with blood. He is not well. Given this condition as told by physicians and nurses, Alwin probably only have days left - predicted 48 hours. He was somewhat awake, but his liver is already broken down, meaning that his consciousness will slowly die down. His whole body is yellow, that includes his eyes. We called for the Chinese Doctor who gave him the sacred medicine back a month ago. He came to do a check-up on Alwin, but the words from him were not bright.
Alwin asked if he's dying soon. We nodded. He did not take our words the first time. He kept on asking other people (relatives) around him. He found it hard to believe. At a moment I showed him the date from my phone, he nodded and said "Happy Birthday..." Everyone clapped and celebrated, not only because its only my birthday, its because he celebrated with me too. The cake was taken out. He tried so hard and lift up his hand to do a "Victory" sign with me while taking pictures, with everyone else also. I know that in the future when I look back at this picture, I will not be able to hold my tears. But I am really happy, that he can celebrate with me. That is all I wanted for my birthday.
Nothing can replace a brother's love, care and friendship. A brother is like your friend. Alwin would teach me how to play games and enjoy it together. A brother is like your caretaker. Alwin would take care of me when I needed help. A brother is like your brother-in-arm. Alwin would encounter any problems with me and solve it out together. I showed him a message, which I wrote down on a piece of paper,
"Once a brother, always a brother. We are brothers-in-arms forever."
He nodded and acknowledged. He is afraid to go. He is scared. I told him there's nothing to be scared of. What is death? Why are people afraid of dying? Pain? End of life? Or separation? There's no pain. It is not the end of life. And the separation is temporary but we will all be going to the same place eventually. There's nothing to be afraid of. I told him sometimes some people are destined to live short because the world is too horrible to them. And yes the world has been horrible to Alwin at times. There is no explanation why sometimes the world is unfair, until you know that you will be leaving early.
One thing he definitely will miss is his enthusiasm on gaming. He will miss being able to play the new games he ordered that will come in the future - he has yet to play.
He is tired now, tired of going to the toilet, tired of needing to greet everyone, tired of fighting without a mission, but he hasn't given up. He is afraid but never said he has given up. He said he wants to live on.
Mom called Alwin's ex-roommate to come over with priests and said prayers to him and cleansed him with oil. Mom also said prayers to him with them. It was a touching one. To thank God that Alwin is his son, to thank God that we are a family, and to thank God that Alwin has enjoyed his life.
Noon went pass quickly. Alwin pukes once every hour or two. Repetitively mentioning that he's afraid, we stayed by his side. More cousins came, and one even contacted Alwin from Hong Kong. Alwin tried to listen, he heard everything, but his consciousness can only do so much that he ended up asking what happened afterwards. We all know he is going soon, we will miss him when the time comes. And there is nothing to be unhappy or depressed about. Life is short. Alwin enjoyed most of his life and that's all it matters.
Mom, Dad and Alicia stayed over in the hospital. I went home first, and if time comes, I am prepared.
God if you must and when you must, please take Alwin's hand. We entrust thee to give peace to him. He has suffered enough. Thank you for letting me celebrate my birthday with Alwin.
Amen.
8/9/2012
I arrived at the hospital at 11AM seeing cousins here helping Alwin massage his foot. Not long after the team came in and asked us about the procedure that was mentioned on Tuesday. They will slowly take his antibiotics away, and soon his blood supplies, which might lead to giving him a day or at most only two since his blood count to decay to zero.
Alwin keep saying he doesn't want to die. But I explained why so afraid. Die is a word that defines a transport, a warp that takes you to another similar body of yours on the other world. And he added "Parallel world". Yes, thats the word. We both believe that there is a parallel world. If he's afraid that he might not be able to play games in this world, the other world is all set for him to play more. Whether this is called heaven, warped world, or some other dimension, he will be better off to warp in this parallel world, where there will be no concerns and suffer, there could be games!
This battle has been long. The day will soon come when he will be wrapped there, where everybody meets eventually.
Nurse came in and took off his TPN, and put him on sugar water. He is now only on what was told left - the Hydromorphone to kill the pain, and Ativan to make him sleep comfortably. He can still hear, and he can still somewhat open his eyes. But his breathing pattern changed - the breathing that when the body is shutting down, which he indicated that his last breath could be tonight.
The nurse that was primarily responsible for Alwin came in and said goodbye, for he will be on a 5-day holiday, which when he comes back that room will not be the same anymore. Thank you for being such a beautiful nurse to Alwin. You have been best, and will always be.
His coworkers came to pay a visit. But Alwin could only open his eyes. He was trying so hard to acknowledge them but wasn't able to. His eyes opened and was hard to even look at the direction he wanted to. They one by one left words to him. Though he might not be able to go through all the words, he knew they were all here, and that's all it matters. Once a team, always a team.
All the cousins also arrived. And they all shared their good experience and spoke besides Alwin's ear. We knew he can hear it. We knew he can feel the love. We are all forever cousins.
His breathing pattern is slowly changing. And he is not as awake anymore. I looked at the IV pole with confusion, and it reminded me when I first cried looking at it when Alwin was going through the pain of chemotherapy, with all those floating hands movement. Now this pole is almost empty. He is going soon. What should I be feeling like? I want to cry because of the separation. I want to celebrate because of the new life. I don't know what to feel like without a brother in this world. Life will be different although it goes on. Will I be able to move on without my brother on my life?
I keep reminding myself that he's not leaving us. What we miss will be his voice, his response, and his body. But his memories, his spirit and his energy will never leave us, they will all be eternally with us.
8/10/2012
The details to his condition do not matter anymore. He looked like he is in a really comfortable position. He scratched his nose, opened his eyes, knew me and Mom besides him, but the looking of wanting to live still stays in his eyes.
When we say it's time to let go, that does not mean we are literally letting him go, but letting him go to a better place where there's peace, there's better games, there's infinite money to spend, and there's nothing to worry about.
Most of the time we don't know what we are living for. As for Alwin, he enjoyed his gaming life, enjoyed spending all his money that he earned into his favorite hobbies though he could be in a financial crisis, enjoyed laughing out loud regardless of the environment, enjoyed banging loud musics at late night. And out of all these, he never did steal, get into physical fights with outsiders, or in anyway hurt anyone. You can never find anyone that has a heart as kind as his - something that we need to all learn to have. You will never hear someone that would said that he should go to heaven earlier so that he can save resources to other patients.
And that is my brother, something that will never change.
Once a brother, always a brother. Thank you Brother, for being such a good brother to me, for being such a kind-hearted person. You never lost this battle, you won it. Your mind never gave up. You will always win. As that's your name Alwin.
We have a code. When we eventually meet on the other side of the world, we will "tweet" this code and find each other again.
8/11/2012
Life is full of experience. All these things that we did to him during these couple of weeks is an experience that we learn from Alwin's spirit in his body. He taught us a lot of things, something that we will never forget. I admire you, and I admire myself to have been, and always will be your brother. You had enough of this in this world. We will see you on the other side.
RIP Brother.
---
Hey Brother, I just woke up from a nap (4PM). Looks like everyone was tired, it felt like everyone was taking a rest from giving you a big lift to fly. It does feel weird without your physical body around. But I know you are watching us, including while I am typing this entry. You are somewhere up there now enjoying your eternal freedom, and we told you that you would love it. Knowing that I have an exam and assignment coming up, sometimes I think how much more do we have to face and fight until meeting you. But you enjoy, we got this, and will see you soon bro!
Its 2:50AM. I bought a new game a few days ago called the PayDay: The Heist. Thought you will be able to play it with us, but you went away first to enjoy the sunlight, or even PS10 up there. I played it with Alicia and Lok for around an hour. But we sure are missing something here man... you are not only a brother to us, you are also the best gaming buddy with us. We are already starting to miss you like crazy brother... but don't want to miss you too much because I know where you are now are really happy. Let us handle something in this world first. And we will be there with you soon.
... its hard to not get rid of that last look of yours and the last word of yours. And you tried so hard using this body to respond to us in the last two days. You did so well that you hung in there until you fulfilled my birthday wish - which is to celebrate my birthday with you. I will never forget this. I know you are looking at me entering this entry now. But this is the only way to let you see my words. Good night brother.
8/12/2012
Hey brother. I woke up at 9:30AM from Mom's laundry machine running as usual again. I didn't completely see you in my dreams, but I felt like we met. Life will be different without your laughter across the room at night times, without you coming into my room to ask for accompany when you are out of games to play, and without your cursing languages when you are mad. Last night we had a full dinner made by Kevin. Everyone was really silent during the dinner. We miss you lots. We all felt the same thing - if you were here you would like it.
I know you miss us too. You go have fun. We are coming soon.
It's 7:45PM, we went to Uncle Williams's place with all the cousins for a potluck. It does feel weird without your laughter when it was so crowded. We left at around 8:30PM after dinner. If you were here, I'm sure you would stay and play board games and card games with the cousins until midnight.
I feel you are here around us. It still feels like a dream. Everything happened too fast. I know you are here with us. Don't worry brother. You don't have to feel any burden now. Let us continue the war of these bodies. I promise you we will see you soon.
8/13/2012
Hey brother... I looked at your stuff (don't worry man, we didn't go through them). And I caught something that we have in common that we never really knew - that is to buy stuff just to satisfy that moment of joy. Like how I bought my camera, you like to buy stuff to make yourself happy, although we are not sure if there really is a long-term use of the things we bought. And I am glad you did that. Living in this body is about enjoying. We should enjoy as much as we can in this body. No one can be as happy as you were/are. Talk to you soon.
8/14/2012
Brother. I'm back to work today. Everything really happened too fast that I think we are still in a shock, even Jenny agrees. I know that we shouldn't be emotional, but we cry because of the departure, not because you are in a better place. We should be all happy because you are enjoying your freedom. Yesterday we finally took your shell out of the hospital and we found a really good place for it. Lucky you, originally all the spots were only at the corners. I guess luck never really left you. You are lucky to be Alwin.
Its 2PM now. I cannot believe the day you left your body was only 3 days ago. It is such a shock that it felt like a dream, a 28-year-old dream. Something must've been meant to be. I was meant to have this 28-year-old dream here with me. But it isn't a dream. You are with me physically for 28 years. This count will never end now. You went first, we are all coming soon.
Brother, my co-workers gave me hugs today. The CEO came to me and tell me it takes a year to get out of this. And its only been 3 days. Geez. I know I should be re-focusing on work and study. But how can one live without a brother physically besides them being supportive and a gaming buddy? I feel you last night. You dropped my cup in my room didn't you? No one else was near my room and it fell. It must be you coming back. I will let you do so. But once you are use to your form, you should try flying higher. Then you have to be the one to teach us fly instead soon. Talk to you later bro.
8/15/2012
Hey brother, I am having troubles with talking to anyone now. Everyone I try to talk to either hasn't experienced it, or do not know how to respond back, or they just don't understand. No one is learning from this. The miscommunication and miss calls are happening again. I am not sure if there is any other way anyone can learn if this incident doesn't spark them. The only one to turn to now is you.
The day of funeral is coming. I know you are up there waiting for us. I know I will not be able to be brave enough to see your shell gets cremated. But I know it is a ritual, a celebration, and a transfer of energy. I'm lost, but I need to continue on. You just wait bro.
Wednesday, August 1, 2012
August 1st week -
8/1/2012
During the early morning (or last night after 12AM), I heard that the (old) nurse (Code name: E) that we like the least was Alwin's night nurse. I am sure she is experienced, but sometimes if you are too old, your physical skills declines. And this happened against Alwin. Nurse E came to talk to Alwin. Wait... talk? I am sure she didn't read her chart, and if she did, she needed to try harder on yelling... did I not say she's old? There goes one point that she is not capable for Alwin. So... Alwin went to the toilet. His muscles are definitely weaker, and needed a big lift after sitting on the closet. Nurse E said something, I'm not sure if this is hilarious or what, "I am not going to hurt myself, I need to call for help..." and went away. Like WTF? If you are completely not capable or suitable for providing care to a patient, why are you assigned to him or why didn't you refuse to be assigned to him? Something is terribly wrong to either the assigner's brain, nurse E, or the organizer.
Well then enough grief on this side. Apparently the department changes physician every month. So the two doctors/physicians that knew all our complaints and situations departed. And have we got a new one - which I'm assuming this new physician will not completely understand Alwin's situation just by reading his chart. So we probably have to go through all those complaints with him again about the quality of care.
Alwin's eyes are less yellow today. His Hickman line test is out. He does have a bacterial infection on the line - and my decision was right about taking it out. Better save than sorry. This bacterial infection is specifically sensitive to only one type of anti-biotic. And he will be treated with that tonight. His insulins are also now mixed with the TPN, so he doesn't have to get stabbed constantly - except for the finger test for blood sugar.
God Bless Alwin - and to my family and relatives who are spending time with him. I always appreciate your visit and contribution. It proves how much we can be a family to love and to fight.
8/2/2012
According to Mom (as of 3PM), Alwin took a shower today. He also went back to eating now - though not a lot. He had some congee and took the liver pill too.
On the other hand, his Hickman line infection has yet to have a report. So the anti-biotic mentioned last night was something else - probably against his blood infection. This Hickman line bacteria takes usually 2 days to grow, and then they start testing what is it sensitive to.
Alwin seemed tired from the morning shower, walk, and the meal. Every task that he does can easily make him exhausted. So let me kindly remind visitors, please call my Mom or me first before visiting to avoid the timing that he feels like sleeping - unless you just want to be there with him. However, on top of that, since he is into mutliple infections now, it'd be best not to have too many outsider contacts. I will post when it is clear to visit. Thanks all of you that has the thought to come over to visit! Love you all! And don't forget to pray for Alwin!
Well Mom called me for a night update. Alwin seemed hungry and ate the meal that the hospital provided! In terms of his change of status, his blood sugar level is quite at the low end due to the fact that the insulin now is mixed with the TPN. So the nurse wanted him to drink some of those vitamin water. However, that didn't work out fast enough that he had to be injected with some glucose. They are trying to regulate his blood sugar level since the procedure changed.
God Bless Alwin - please pray with me for him, for the friends and relatives who read this blog.
8/3/2012
And of course Mom didn't sleep a lot because of the overnight toilet runs. And on top of that, something happened which I do not want to mention specifically made Mom needed to stay until I arrive - so again, a 60-year-old woman haven't slept for approximately 33 hours (from Thursday 10AM to Friday ~7PM) gets no help and going to drive by herself home. Without enough sleep myself, I had to go take the spot ASAP after work. I called the social worker and told him that we really need a care-aide. And all he said was he couldn't override what decisions the nursing leader or physicians made. Another completely useless service. I tried calling Mom to tell Aunt Marian to drive her instead. But for some crazy reason my Mom has in her mind, she doesn't like to ask for help and be the stupid-looking heroine. Sometimes I think all these problems are induced, they could've been easily solved by asking for help.
8/4/2012
I didn't get a lot of update today since I left at 12PM and went home to take a nap, but I came back at 10PM to take over my Mom and Dad. Just a small incident that his injection of GCS-F (to make his body induce more white blood cell) was overdue. A nurse came in and followed up everything.
Also his hearing on the right ear seems to be better! Good news!
8/5/2012
Alwin is still bleeding as usual. His muscles are weaker than before. He almost cannot stabilize himself. Mom wanted him to take the Cellton pill after he puked from it last night. As expected, he took it but turned grumpy immediately. He yelled out and told the nurse and Mom to erase the contents of the whiteboard "NOW" - it is filled with some to-do task that can help him with his quality of life and condition of his body, and of course some of them consuming energy and increasing stress mentally and physically like walking laps or playing games. Everything started looking and feeling uncomfortable to him.
He is bleeding. Dark red now. Back to the critical period.
God Bless him.
8/6/2012
I was awaken by Mom's call with a sigh starting the conversation. He had a fever that reached up to 39.7 degree Celsius (That's 103.46F!!) Then he had dark red stools. But he didn't even know he's that sick when he saw the thermometer getting that reading. I guess the pain his guts are giving him overlaps every other things that he is getting extra. The fever gradually went away after antibiotics, which is a relieve.
Due to safety reasons, and to accommodate his privacy, he will be using diapers, double-layered since the stools output could leak over the first layer.
Mom seemed pretty tired today since she didn't take enough rest, both physically and mentally. So she took a nap while I take over stuff until 7PM.
After I depart, the biggest outburst came out. Mom noticed that the nurse tonight wasn't their favourite nurse. Even the nurse herself didn't know her position was changed. Mom started getting really worried because she likes that nurse so much that she can feel safe with Alwin being under her care. Without her being the nurse tonight, she got really frustrated and started yelling and screaming. She cried and yelled at Dad for not being able to be here after 3 days and that no one will start buying her meals or be with her. She stomped the floor, yelled at her highest voice and slammed the room door. Since Alwin was able to hear a bit, he heard started getting really worried and freaked out.
Why was no one ejecting Mom out of the room at this moment...? No one knows that Alwin's mind could be completely affected by this?
She also told Alwin that his nurse tonight will not be his favourite nurse, she yelled at Alwin and said "You ask them why she's not your nurse tonight, YOU ASK THEM WHYYYYYYYYYYYYYYYY!!!" And said "I WANT TO DIE FIRST BEFORE YOU DO!!!"
I don't know the details to it. Alwin didn't know what to say, but added "I don't know what to say. Good luck?"
God Bless Alwin. Please let him stay in the hands of the caring ones...
8/7/2012
I was told to have a meeting again at 1PM at the hospital. So I took off at lunch to join the meeting. Apparently, the time has come. The team has decided that Alwin's condition is worse, to the point where it is too hard, or even impossible, to get better. His liver counts are extremely high followed by the bloody stools. He also got another bacteria infection in his blood again. With all these, the team has made a decision that there are nothing to be done. His time is a few days left. So we have an agreement on the procedure as following:
(1) Doctor will tell Alwin what is happening.
(2) We are given two days to see what Alwin wants
(3) Starting the third day, his antibiotics and steroids will be taken off gradually
(4) Within fastest 12 hours after the antibiotics and steroids are taken off, they will also stop the blood supplies
(5) He will slowly be into a sleep mode after fastest 36 hours of off supplies
For those who wants to see him and talk to him, please call his number 778-892-0038. Whoever is there will pick up the phone and ask if he's available to be paid a visit.
In the evening, I had a chat with Mom to see what Alwin thinks. He thought he's completely fine and he wants to be maintained with constant supply. His stools are brown, he can walk to the toilet himself, he didn't press the hydromorphone button as much, and he went to the toilet less. However, this didn't override what the doctor decided. Tomorrow I will have to talk to the quality care office again to see what they can do to override this.
Brother, I know you want to live on and you are afraid of dying. We as a whole family will do whatever you wish for. May God be with you.
During the early morning (or last night after 12AM), I heard that the (old) nurse (Code name: E) that we like the least was Alwin's night nurse. I am sure she is experienced, but sometimes if you are too old, your physical skills declines. And this happened against Alwin. Nurse E came to talk to Alwin. Wait... talk? I am sure she didn't read her chart, and if she did, she needed to try harder on yelling... did I not say she's old? There goes one point that she is not capable for Alwin. So... Alwin went to the toilet. His muscles are definitely weaker, and needed a big lift after sitting on the closet. Nurse E said something, I'm not sure if this is hilarious or what, "I am not going to hurt myself, I need to call for help..." and went away. Like WTF? If you are completely not capable or suitable for providing care to a patient, why are you assigned to him or why didn't you refuse to be assigned to him? Something is terribly wrong to either the assigner's brain, nurse E, or the organizer.
Well then enough grief on this side. Apparently the department changes physician every month. So the two doctors/physicians that knew all our complaints and situations departed. And have we got a new one - which I'm assuming this new physician will not completely understand Alwin's situation just by reading his chart. So we probably have to go through all those complaints with him again about the quality of care.
Alwin's eyes are less yellow today. His Hickman line test is out. He does have a bacterial infection on the line - and my decision was right about taking it out. Better save than sorry. This bacterial infection is specifically sensitive to only one type of anti-biotic. And he will be treated with that tonight. His insulins are also now mixed with the TPN, so he doesn't have to get stabbed constantly - except for the finger test for blood sugar.
God Bless Alwin - and to my family and relatives who are spending time with him. I always appreciate your visit and contribution. It proves how much we can be a family to love and to fight.
8/2/2012
According to Mom (as of 3PM), Alwin took a shower today. He also went back to eating now - though not a lot. He had some congee and took the liver pill too.
On the other hand, his Hickman line infection has yet to have a report. So the anti-biotic mentioned last night was something else - probably against his blood infection. This Hickman line bacteria takes usually 2 days to grow, and then they start testing what is it sensitive to.
Alwin seemed tired from the morning shower, walk, and the meal. Every task that he does can easily make him exhausted. So let me kindly remind visitors, please call my Mom or me first before visiting to avoid the timing that he feels like sleeping - unless you just want to be there with him. However, on top of that, since he is into mutliple infections now, it'd be best not to have too many outsider contacts. I will post when it is clear to visit. Thanks all of you that has the thought to come over to visit! Love you all! And don't forget to pray for Alwin!
Well Mom called me for a night update. Alwin seemed hungry and ate the meal that the hospital provided! In terms of his change of status, his blood sugar level is quite at the low end due to the fact that the insulin now is mixed with the TPN. So the nurse wanted him to drink some of those vitamin water. However, that didn't work out fast enough that he had to be injected with some glucose. They are trying to regulate his blood sugar level since the procedure changed.
God Bless Alwin - please pray with me for him, for the friends and relatives who read this blog.
8/3/2012
And of course Mom didn't sleep a lot because of the overnight toilet runs. And on top of that, something happened which I do not want to mention specifically made Mom needed to stay until I arrive - so again, a 60-year-old woman haven't slept for approximately 33 hours (from Thursday 10AM to Friday ~7PM) gets no help and going to drive by herself home. Without enough sleep myself, I had to go take the spot ASAP after work. I called the social worker and told him that we really need a care-aide. And all he said was he couldn't override what decisions the nursing leader or physicians made. Another completely useless service. I tried calling Mom to tell Aunt Marian to drive her instead. But for some crazy reason my Mom has in her mind, she doesn't like to ask for help and be the stupid-looking heroine. Sometimes I think all these problems are induced, they could've been easily solved by asking for help.
8/4/2012
I didn't get a lot of update today since I left at 12PM and went home to take a nap, but I came back at 10PM to take over my Mom and Dad. Just a small incident that his injection of GCS-F (to make his body induce more white blood cell) was overdue. A nurse came in and followed up everything.
Also his hearing on the right ear seems to be better! Good news!
8/5/2012
Alwin is still bleeding as usual. His muscles are weaker than before. He almost cannot stabilize himself. Mom wanted him to take the Cellton pill after he puked from it last night. As expected, he took it but turned grumpy immediately. He yelled out and told the nurse and Mom to erase the contents of the whiteboard "NOW" - it is filled with some to-do task that can help him with his quality of life and condition of his body, and of course some of them consuming energy and increasing stress mentally and physically like walking laps or playing games. Everything started looking and feeling uncomfortable to him.
He is bleeding. Dark red now. Back to the critical period.
God Bless him.
8/6/2012
I was awaken by Mom's call with a sigh starting the conversation. He had a fever that reached up to 39.7 degree Celsius (That's 103.46F!!) Then he had dark red stools. But he didn't even know he's that sick when he saw the thermometer getting that reading. I guess the pain his guts are giving him overlaps every other things that he is getting extra. The fever gradually went away after antibiotics, which is a relieve.
Due to safety reasons, and to accommodate his privacy, he will be using diapers, double-layered since the stools output could leak over the first layer.
Mom seemed pretty tired today since she didn't take enough rest, both physically and mentally. So she took a nap while I take over stuff until 7PM.
After I depart, the biggest outburst came out. Mom noticed that the nurse tonight wasn't their favourite nurse. Even the nurse herself didn't know her position was changed. Mom started getting really worried because she likes that nurse so much that she can feel safe with Alwin being under her care. Without her being the nurse tonight, she got really frustrated and started yelling and screaming. She cried and yelled at Dad for not being able to be here after 3 days and that no one will start buying her meals or be with her. She stomped the floor, yelled at her highest voice and slammed the room door. Since Alwin was able to hear a bit, he heard started getting really worried and freaked out.
Why was no one ejecting Mom out of the room at this moment...? No one knows that Alwin's mind could be completely affected by this?
She also told Alwin that his nurse tonight will not be his favourite nurse, she yelled at Alwin and said "You ask them why she's not your nurse tonight, YOU ASK THEM WHYYYYYYYYYYYYYYYY!!!" And said "I WANT TO DIE FIRST BEFORE YOU DO!!!"
I don't know the details to it. Alwin didn't know what to say, but added "I don't know what to say. Good luck?"
God Bless Alwin. Please let him stay in the hands of the caring ones...
8/7/2012
I was told to have a meeting again at 1PM at the hospital. So I took off at lunch to join the meeting. Apparently, the time has come. The team has decided that Alwin's condition is worse, to the point where it is too hard, or even impossible, to get better. His liver counts are extremely high followed by the bloody stools. He also got another bacteria infection in his blood again. With all these, the team has made a decision that there are nothing to be done. His time is a few days left. So we have an agreement on the procedure as following:
(1) Doctor will tell Alwin what is happening.
(2) We are given two days to see what Alwin wants
(3) Starting the third day, his antibiotics and steroids will be taken off gradually
(4) Within fastest 12 hours after the antibiotics and steroids are taken off, they will also stop the blood supplies
(5) He will slowly be into a sleep mode after fastest 36 hours of off supplies
For those who wants to see him and talk to him, please call his number 778-892-0038. Whoever is there will pick up the phone and ask if he's available to be paid a visit.
In the evening, I had a chat with Mom to see what Alwin thinks. He thought he's completely fine and he wants to be maintained with constant supply. His stools are brown, he can walk to the toilet himself, he didn't press the hydromorphone button as much, and he went to the toilet less. However, this didn't override what the doctor decided. Tomorrow I will have to talk to the quality care office again to see what they can do to override this.
Brother, I know you want to live on and you are afraid of dying. We as a whole family will do whatever you wish for. May God be with you.
Sunday, July 22, 2012
July 4th week -
7/22/2012
I didn't get a lot of update today since I was awake for most of the time during the stay. I did heard though that Doctor Chan will be coming back to do a check up with Alwin again since his bleeding stopped from taking Cellton.
7/23/2012
Got an update that really frustrates me - Alwin was already being transported to the Diamond Centre before Dad and Mom arrives. The appointment was booked at 10AM but he was being transported at 9:40AM. The doctor / nurse unplugged his drugs and put him on a wheelchair, given a mask and two hot blankets to him. The wait didn't take long, but the process took about one and a half hour, which brings me to the point. Why didn't anyone, especially the doctor or nurse, recommended him to wear diapers? While the wait for the results, he was puking and complaining about pain. So why didn't anyone recommend taking a shot of the hydromorphone first before his IV pole was unplugged? According to Mom, she has to explicitly mention that Alwin is a critical patient for the receptionist to speed things up at the audiologist. On top of that, the receptionist has to call back to the BMT Leukemia department and confirm information and etc which took them another 5 minutes or so. What is going on with the communications in the hospital? The quality of care, regardless of specific nurses, are extremely poor. The bad way of putting this could be: they seemed like they were taking advantage of a family member being there for him, that they could care less.
When Alwin was just about to get better, bad things have to happen on top of it. I have already written a complain letter to Patient Care Quality Office about the VGH not giving clarifications and communications among individuals and staff, with their limited quality of care.
The results - his ears are 2/3 permanently damaged, even if the GVHD is gone. He only have 1/3 hearing left. Let us pray that this ear GVHD will not progress. Losing any of the sense will be extremely lifeless... especially hearing. One of his interests was always listening to anime musics and watching anime to catch the voice actors/actresses.
I ended up searching on google, regardless of whether they are academic resources, how much GVHD patients will result in deafness. 2 out of 993 patients (0.02%). First, 5% of stem cell perfect match will result in acute GVHD, 10% of steroid treatment fails, 20% of ATG treatment fails, 70% of etanercept treatment fails, and 0.02% of patients will result in deafness. The chances of a similar case of Alwin's? You do the math.
7/24/2012
I got a reply from the manager of Patient Care Quality Office and we had a long phone talk. I explained to her how bad the quality of care was referring especially yesterday's case. She will look into it day by day to give me an update on resolution and if I wanted to file a formal complaint. At the same time, Mom also talked to the Chief Doctor of T15 today and explained the same thing to him. The chief doctor agreed that what the other doctor did - disconnecting the IV pole without knowing how long the audio test would take, and not offering diaper or nurse to accompany him to the department, was completely wrong. After he mentioned that he would look into it, Mom immediately added that was what he said from last meeting, but it happened again. How many times do they have to screw up before it kills someone?
Alwin is still going to the toilet quite frequent. I also heard from a late night update from Mom that the residential doctor (by the way his name is Dr. Pray) will be going back to Thailand. I want his bad decision-making be on his reputation. I will file a formal complaint specifically on him - for Alwin's sake and for everyone's sake. His poor decision made Alwin suffer yesterday and today.
Brother keep it up! God be with you!
7/25/2012
Alwin's bowel movement at around 11AM was starting to have blood - the same color we saw 7 days ago. And he's going every hour. Alwin has gotten weaker.
I will be having a face-to-face meeting with the manager of Patient Care Quality Office tomorrow. I don't think this is coincidence at all. The Thailand doctor's mistake, according to Dr. Forest, the chart, and the day-by-day observation, completely goes with it. His idea of disconnecting the IV pole for 2 hours long and his change of medication completely ruined it. Anyone that is reading this with a medical background can argue with me that there is no medical evidence. Anyone without background knowledge can see this. This is physical evidence. Alwin got worse, it is a fact.
We all know the doctors and nurses already told us that he might not get better. But they don't know that he might've gotten better. Moreover, GVHD has yet to be known what it really is - why it also attack ears, mouth, and other organs. No doctors in the world has a clear solution as in why it happens. All they know is the stem-cell is rejecting the foreign body. So why was the prednizone changed when everything was stable?
Mom called me in the afternoon and said she wanted me to talk to Dr. Forest instead since I have much more information and I have a clear vision of what happened. I took the day off tomorrow to meet up with the manager anyway. So I will see if I can meet up with Dr. Forest.
Mom called me again and just chatted a bit about him having ear discharge now. She asked Alwin if he wants me there, he said doesn't matter. But I'm sure he does. So I went at around 730PM, but he was pretty much dosed off with drugs. I saw the care aide and chatted with her a bit. I also observed her way of taking care Alwin, which was a little rough but fine.
Vincent from superstore came to pay a visit. But Alwin was deeply asleep. I also heard that the other crew members came. Thank you guys for always trying to pay a visit. However, Alwin's white blood cell is extremely close to zero now and we would like to limit visits until his counts go back higher. We welcome and need your visit in the close future, don't forget to call me or Mom at 604-780-0187 or 604-369-8233 before you guys pay a visit. Alwin loves you all!
Seeing Alwin tonight was grateful. But comparing to last Sunday, he definitely looked way weaker. He is really bony now. He knew I was here. He wanted to open his eyes to see me and talk to me. He tried. His eyes could only open half way and closed again. His energy and body was limiting him, on top of being dosed. It's ok Alwin. All you need to know is I was here for you, and will always be.
I then taught the care aide how Alwin likes the way we do it. I waited for his next bowel movement to let him know I was still there. After he finished, he went back to his sleep. When I was about to depart, he somehow knew and tried his best to open his eyes and lift his arm for a split second just to make a slight wave goodbye. He gave a look that looked as if he did not want me to leave. I waved at him and could not hold my tears and departed at 11:35PM... His last stool color was bloody dark red.
I hope his weaknesses tonight came from the drugs. But his physical appearance tells me the other story.
Brother, you can do this! You are the strongest in our family here! Please fight through this!! I have yet to play more future games with you!!!
7/26/2012
I went to the hospital at 11AM to drop by Alwin's first to see what is new. I heard Alwin has a slight fever and that his stools are bloodier again. I then went to the meeting. I explained what I needed, as mentioned on my previous entries. They will definitely follow up with this day-by-day and talk to T15 director and members. I went back and heard from Mom that they were planning to put the hydromorphone as constant supply direct to his Hickman line now after Alwin nodded. I immediately went to talk to a nurse and figure out the situation. They had some misunderstanding as into why we press it for him instead. Now the misunderstanding is cleared up, they decided to not change anything.
An X-Ray technician/nurse came and asked for Alwin to go to their floor and take X-Ray for his chest. He has been having some weird breathing sound and might have a lung problem - pneumonia. We were shocked - didn't we already mentioned that he is not available to be transported? Then the resident came and talked to them again that he wanted it done mobile - another miscommunication that we caught.
On top of that, for some random reason, his antibiotics were "done" according to the IV machine, but saw 1/3 left in the bag. So whoever hang that bag must've put in the wrong rate of flow.
Mom was nervous about Alwin's temperature. It went up to 38 degrees the last time she checked it.
Another care aid arrived at around 7PM and I departed. God Bless Alwin - you must survive through this. You have fought for so long and we all know that this will not take any longer if you fought through this fever!
7/27/2012
I got an early update from Mom while I was on the skytrain. Mom arrived early and see how Alwin was. The fever went away (for now). Alwin was quite awake today. It seems like the guts pain has temporary stopped. He was also joking and teasing the nurse there - he was told that he should stop touching his nose due to low platelet count, but he stuck out his tongue and said "Why don't you give me YOUR platelets!?" That was an LOL there!
X-Ray results were out. He does have slight pneumonia and is under antibiotics now. Hopefully this will stop the progress of it and clean out everything. In terms of his stools, it is still dark red.
7/28/2012
An eventful day - Mom cooked some "special" chinese medicine for Alwin to drink, which was not made of herbs, and let's not get into the details of the ingredients. But she was searching all kinds of ways to buy more of those. Apparently this ingredient is extremely rare in the market due to its "speciality" - again not into details.
Mom wanted to try all sorts of ways to stop Alwin's bleeding, including suggesting to take that "Sacred medcine" from a month ago, calling the other chinese doctor for the recipe, asked most of the chinese medicine vendors. And this cycled around for 2 hours.
No news... well Alwin's stool was not as red. But he definitely looked different. Tired. Weak. And I know that look.
Fight. We need to be hopeful. Brother. We are all supporting you!
God Bless.
7/29/2012
At around 10AM, I was contacted by (the most caring) nurse that Alwin has multiple infections. There must be a crucial decision to be made ASAP. They spotted the bugs progressing to his Hickman line. According to them, the bugs like foreign objects, such as the Hickman line. In other words, it has to be removed so that the antibiotic can focus on his body. However, the dilemma that the nurse mentioned was that he will have to have multiple peripheral IVs on his arms, which were already really irritated to him back then. And there will also be a change of procedures to his medications since not all of them can be gone through peripheral IV.
So as I arrived to the hospital at 1030AM, I made the call with Alwin agreeing to it. The Hickman line must be taken out. Before the specialist came, the other nurse came in first and stabbed him with the IVs first. As expected, he screamed from the pain. What was more is Mom's over-reacting to his scream making the environment more stressful. At 7PM, the specialist came and tried the first run to take out the Hickman line but failed to do so since the line has been there since January and his flesh is pretty much attached to it. So the specialist called for second opinion. The other specialist came and took it out under the same procedure. How it was suppose to be is that, if the Hickman line is easy to be taken out, that means the infection is there. But according to them, the Hickman line was rather hard to be taken out - the infection might be somewhere else.
This left all of us questioned tonight. We were told that they spotted where and what exactly the infection bugs are. But it came out differently. Although the antibiotic is known to fight this infection, it might take a while for his body to cope with it. It is a race between the antibiotic and the infection bugs... Alwin make your body work!
God Bless Alwin - let him fight through this infection.
7/30/2012
Thanks to Shaina covering the morning (7AM, when the care aide leaves) since Mom needed the extra sleep. Mom went to the hospital at 1030AM. According to what they said, Alwin can hear a bit again - to us that means the antibiotic is working! We hope this is the case and that the antibiotic can kill the bugs.
Later on the day, Mom figured out that the nurse leader refused to call for a care aide tonight saying that Alwin will be fine himself. We disagreed and ended up "forcing" Alicia to stay overnight.
7/31/2012
Alicia barely slept while Mom came in a little later. Alwin was overwhelmed due to the multi-assessments made today - that includes putting the PICC Line in his arms, changing the position of the line twice, taking three X-Rays due to the improper position of the PICC line, and the audio test from the audiologist. He hit his head multiple times on his pillow and yelled out that he wanted to get some sleep.
I emailed the Quality Care manager to tell her about this unorganized matter. The PICC line positioning sometimes is uncontrollable this I know, but audio test could definitely be booked on another day. They had to make it today for some stupid reason. If these assessments keeps stacking on, I am not sure if Alwin really wants to continue on. He is already extremely irritated. At least our favourite nurse, Delphine, was there today until 7:30PM. Thanks to her. Otherwise, I am not sure how we could handle this.
There will be one general care aide for the whole floor. But Mom and I discussed and we wouldn't trust him. So Mom decided to stay overnight.
Condition-wise: Alwin's blood infection was known to be clean now - two blood test came out negative. But his eyes and skin are quite yellow. His liver is working really hard...
God Bless Alwin.
Monday, July 16, 2012
The meeting
This is Alicia.
It's 4:07pm now and we just finished a 2-hour meeting with the doctor, nurses, social workers, spiritual workers, physicians. The doctor, with the spritiual worker and my parents are now talking to Alwin about the facts in room 15220.
There was a total of 12 people in the meeting, including my cousins, Shaina and Sonya, my parents and me. (no, Alwin wasn't in the meeting.)
There have been messages passing around the family and we have been thinking the hospital has given up on Alwin, slowly decreasing dosages of medication, stopping treatments without Alwin's or our permission, in other words, slowly 'killing' Alwin.
The misunderstanding has cleared up a bit in the meeting.
The fact is: Alwin's GVHD is untreatable; the hospital has done everything they can, they have given him all the treatments, all the medications they have. If Alwin's GVHD WAS treatable, his body would have reacted to the treatment within, at most, a week (usually in a few days, the doctor said)
The doctor admited that there were some sort of miscommunication between the nurses about extra pills being given to Alwin; however, there were reasons to the stopping of the Etanercept, the Octeontide, and the sudden decrease in size (of the bag) of the nutrition given to Alwin.
The fact is, again, Alwin's GVHD is untreatable, "there is no point in continueing the treatment if Alwin's body is not reacting", the doctor said, they WOULD give him the eighth (the last) dosage of Etanercept IF there was an improvement, and since Alwin did not improve over these WEEKS, they decided not to give his last dosage of Etanercept because it wouldn't change a thing. BUT they did apologize to us that they should have informed us about these decisions because Alwin has been having hope that they would keep giving him injections.
About the stopping of Octeontide, which is a pill that helps with diarrhea and GVHD. Alwin hasnt been comfortable with swallowing pills. As Alwin's gut hasnt' been improving, the Octeontide wouldn't help a lot either. Alwin's gut is very eroded now and it has been constantly springing out blood inside him, the Octeontide would only help him go to the bathroom a little less frequent, but it wouldn't help with his bleeding; also, the effectiveness of Octeontide of treating GVHD is "a drop in a bucket" comparing to Entanercept. Therefore, they have decided to stop giving the Octeontide; the stopping of Octeontide would not affect Alwin's situation at all.
If some of you have noticed, Alwin has been given a smaller bag of nutrients; this is to prevent more puffiness of Alwin. Alwin has been given too much fluid, there was a little fluid in his lungs, and he had been having puffy feet, face, etc. The smaller bag of nutrients contain the SAME amount of nutrients with the big one, just less fluid, more concentrated; so such change is actually good for Alwin; they are not trying to starve Alwin.
Anyhow, we have all decided that it's time to tell Alwin the truth, slowly, by a doctor, that there WILL BE NO MORE treatment they can give to him. There WILL BE NO IMPROVEMENT, he is not going to get better. They will be asking for his decisions, too, i believe. Alwin, himself, knows that he is very prone to infection; his WBC count is 0.8 today. Robert, the nurse, told us that, patients who come to this stage, usually dies of one of the two things: a very horrible infection, or a very severe hemorrage.
"you need to start creating your memories now," Robert said, "bad memories will fade in time, you will not stay like this in the rest of your life".
My mom broke into tears, as expected, but she told us it will be the last time she's going to cry because she doesn't want Alwin to see him cry. But Robert has mentioned that if Alwin needs to cry, cry with him or let him cry, it's okay to have a little nosebleeding from blowing his nose, they would give him platelets to fix that.
It's very important that we let Alwin stay as comfortable as he can.
He already knows his disease is untreatable.
We don't know when will the time come, it might be tomorrow, weeks, or months.
Sunday, July 15, 2012
July 3rd week -
7/15/2012
In the middle of the night, Alwin went to the toilet quite frequent - mostly he rushed in too without me besides him yet. It seemed like he cannot hold his bowels as long as before. Jenny came up at 7AM to take over for a few hours until Mom and Dad arrives. An unfortunately event happened. Alwin tripped (again, maybe his fourth time since he was re-admitted to the hospital) in the toilet. Though Jenny helped him into the toilet, Alwin didn't want "outsiders" to see him in this state. Hearing some movements, Jenny asked at the door if he needed help or if he's okay. The door opened and hit her face, right after knowing that he fell on his back to the door and on the floor. Jenny quickly called the nurses who were all in a meeting. Four nurses came out and checked up on him. I heard this news and went back to the hospital. Alwin looked fine. The fall didn't change his mood or emotions. Nurses confirmed that he didn't fell on his head. Mom and Dad arrived with Aunt Marian at 10AM. Mom quickly asked was he examined, I told her four nurses came and checked and everything was okay. She replied and said "Who cares about the nurses?". She quickly checked the sheet that we use to record Alwin's time going to the toilet. She looked confused at the frequency. I added that the last time might be mostly urine, and she asked "Why the hell did you write that time down then?" And she crossed it out herself. I had enough. I only slept for 4 hours within these 48 hours. So without a word, I departed with Jenny. At this point, I think my Mom has to start backing off for her to accept the fact that Alwin is not getting any better. Every little thing that she's doing is for her own sake and perspective, not in Alwin's.
During the nap, Michelle (Alwin's childhood friend) contacted me and asked what was happening. She was confused as in why my Mom would write a complain note. I heard that and I was confused too. From what Michelle said, my Mom didn't understand why the treatments were taken off. They were planning to lower down the nutrients because that is giving him congestion problems - for the sake of his comfort. Michelle also mentioned a really good point that we never really thought about, that is what if Alwin didn't want us to hear the truth instead? What if he's the one that doesn't want to give us more stress? She stayed and talked with Mom for a bit - and will come back these two days and see what she can do about Mom's emotions and Alwin's confrontation on his status.
Rex also called me and asked what was happening, we are on the same boat. We both think that it could be the hospital's economic and financial issue to maintain Alwin. Considering the etancercept could cause an average of $5,000 per shot, TPN $3,500 per pack, excluding any labours and maintenance drugs - that is already a total of about $150,000. But if that really is the case, then we have a serious issue here. Hospitals should NOT give up on patients because of financial issues. On top of everything being said, why would the doctors make the changes without Alwin agreeing or letting us know? Isn't that against ethics too?
Got an update from Alicia - I heard Shaina and Mom told Alwin about his status. Alwin denied and said hospital would have a Plan D (or a 4th treatment on him). He trusted that the hospital would never give up on patients. He put 100% faith on the doctors and nurses here. In terms of the nutrient packs (TPN) and other adidtional drugs that might make use to slow down the diarrhea, Mom wanted those to be continued because Alwin never really knew what was happening. The doctors will talk to Alwin directly about the stop of treatment and explain it tomorrow again - I am worried about how Alwin will handle it after he hears it. Dad also called me at around supper time, he told me Alwin actually ate half of a "Chicken Tail Bread"! And also a Siu Mai! That's something new! He did not puke also!
Alicia will be staying with Alwin tonight, she also played Prince of Tennis with Alwin - a 7-year-old PlayStation2 game that is completely hard to find that: took me a few hours to find a good torrent to download, and needed Alicia to download from home, and have Lok burn it for us, and Lok buying an extra TV-box to hook it up at the hospital. And we all know that Alwin would love this game sooooo much! Our plan finally succeeded! This is how we care each other as a family!
Alwin had so much fun playing with Alicia - they played a total of 3 games. And Alwin gave a high ten to Alicia after the game. He slowly felt exhausted after all those fun and fall asleep.
Thanks to all that contributed today - A Sunday that we will never forget. Shaina, Sonya, Aunt Marian, Michelle, Josey, Kenneth and Weissy for visiting and confronting this with Mom and Alwin. Alicia and Lok to work out Alwin's favourite game with me. Jenny for helping out to spot me in the morning and take care of Alwin. And God for putting us to be together as a family.
7/16/2012
Alicia posted another post - the meeting, to reflect the afternoon meeting with the doctors. I went there after work. Alwin seemed like he was really exhausted from the breakdown, so is everyone else. Mom, Dad, Eric, Aunt Anita, Sonya, Shaina, Kevin and Aunt Marian was here. Eric and I went to grab a bite. We seemed to both have an idea of what afterlife is because we both have a friend that had experienced coma. We went back to take over so that Mom, Dad and the others could also have dinner. Alwin never really was as awake. He one-eyed at me and Eric when he was awaken from his coughing, and went back to sleep. I only talked to him like twice. But he was just dosing off.
Everyone came back from dinner, Eric took off first, and then I did.
God Bless Alwin. Hope he stays strong - I am sure his willpower to make him continue to live.
7/17/2012
Did not get a lot of updates today except grief from Mom - apparently I heard Dad woke up in the morning at 4AM and said he couldn't sleep properly, so he went home instead. Mom was there all alone for the whole day. Alicia planned to go at night. I tried asking for more but Mom didn't want to talk - she felt really depressed from Dad's action and of course the loneliness. Mom isn't a cheerful person, so there's just so miuch she can do by herself with Alwin, two of them alone. Alicia eventually arrived at night and took over. I also heard that Alwin took around 5 of the Cellton pills.
7/18/2012
I was too overwhelmed from work in the past few days, so I decided to take the day off. Arrived at the hospital at 10:30AM to see that Mom already arrived and Alicia sleeping. Alwin was pretty dosed off from some drugs that helps him with his puffiness. There wasn't a lot happening except the fact that his stools were not red - which again could be the Cellton helping, or the Cellton mixing the color of the red. But there is nothing worse to lose now. So he took a total of 10 of those (in a mixture).
In the afternoon, the new Chinese massage therapist came and helped Alwin massage. Alwin slept for a long while until everyone, except Dad, was departing and then he woke up and asking where everyone was going. So I stayed longer until around 10:30PM and told him that he should really take the Cellton. He asked why is everyone telling him to take it. He still didn't understand why until I took him that now there isn't any treatments anymore, and this supplement is our last hope. I chatted with him to let him understand my perspective. I treat this as a medication more than a supplement already. He brainstormed a while, looking like he was reminded that he does not have long left, and told me to figure out a way to mix it for him. I took 7 of those pills and mixed it with the Vitamin C water we bought at the lobby - which he suddenly requested after Mom threw them away, and Jenny mentioning that lobby coffee shop should have them. He quickly sipped the mixture, and the prescribed pills, and sat for a few minutes. He then slowly lay back on the bed. Jenny and I then departed, and counted on Dad to take care of him overnight.
7/19/2012
Finally got a call from Mom in the afternoon, knowing that Alwin actively asked for help to go take a walk around the floor. During his walk, the whole floor turned into a parade. All the nurses and even doctors were cheering for Alwin. I also heard Sonya was singing in the background, although I wasn't sure what she was singing about. It is nice to hear that my Mom and Alwin have company today from Aunt Marian and our two lovely cousins. Alwin also took 5 dosage of Celltons this noon.
Bad news is, Alicia told me she is feeling a little sore in her throat - must be from the lack of sleep and dry foods. Luckily it is Thursday today, meaning that I will be the one taking over the nights these two days.
On Alwin's side, I heard from Mom that Alwin mention about one of his ear not able to hear anything - meaning that he has only one ear left to hear, on top of it being muffled.
God Bless Alwin - please give him the willpower to continue on and fight through this. And Alicia to recover. And everyone else - we need this energy together, let us all focus and break through this.
7/20/2012
Update from Mom - I heard that Alwin woke up at 6AM in the morning and requested to take a shower. He also walked two laps with Mom!! On top of that, he asked Mom to give him Cellton to take!!! He is getting really energetic and he is fighting with his own willpower! He wants to make a breakthrough!! He wants to continue on!!! Dear God is giving him it!!! Alwin you can do this!!! I will be staying overnight tonight and take care of him!!
Just got another update from Mom mentioning that she requested for an audiology specialist. The audiology department mentioned that they had never really got a report from Alwin's nurses that he is having a hearing problem - which the nurses should have done weeks ago when Alwin's ears are starting to get muffled.
I arrived at the hospital at around 8PM and see Sonya, Shaina, Kevin and Aunt Marian here with Mom and Dad - with Sonya helping out Alwin with massaging his foot. Sonya, Shaina, and Kevin definitely gave a lot of energy in the room and accompanied Alwin a lot. It was unfortunate that this could not go on too late at night and they had to depart. Mom and Dad also took off afterwards.
Just when things were starting to quiet out a little, Alwin started feeling nauseous and puked out the chicken he had this afternoon - everything that he ate. His throw-up maintained for a few minutes until he finally settled and said "Churches chicken was a complete bad idea". He requested for some Avant and went back to sleep - though I noticed that there was a lot of coughing in the middle of the night. I hope it wasn't from the puke.
God Bless Alwin - please be with him and take him out of this irritating disease.
7/21/2012
During the middle of the night, he went to the toilet for 3-4 times - stools being not red at all. I barely missed him going to the toilet by himself since I was half dosing off too. Dad came at 10:30AM and then I departed. I missed the whole day of Alwin's status, but from what I heard, Alwin was doing just fine - at least in terms of his stool color and his blood counts and vital signs. Though he complained a bit about trying to sleep but always had to wake up because of constant assessments.
I went back to the hospital at around 10PM. He was awake for a few hours until he got Avant and a poke to the finger. Then he went back to sleep (2AM)
Sunday, July 8, 2012
July 2nd week -
7/8/2012
Up until midnight to morning, Alwin's latest stool color was still a bit red; but definitely not as red as yesterday's. The platelets were working. He could not really fell asleep, I could tell by him closing his eyes yawning consistently for a few hours. Until 8:30AM, Dad came first and I took off. I woke up at aroud 4PM and gave a shout to my Mom. So Alwin has not been awake after I left, he slept along - which is a good thing! I also heard a reason behind Alwin not willing to walk around - he told his favourite nurse that he felt he look ugly, with his bold head, chubbiness and his scar behind the head from the fall when he was young, and that he did not want people to see him a lot. I don't blame him, everyone still want his own pride. Throughout the day I didn't hear anyone visiting him, which kind of surprised me since it is a Sunday. At around 6PM, Alwin went for another bowel movement, which was still pinky red in color. I heard from Alicia that Alwin has been up at night watching his favorite Anime and listening his classic favorite Animelo songs. He also joked with the nurse there. He seemed really happy His bowel movement seemed less frequent for the day, but that is so far the only good sign of improvement. The redness has not gone away. (12:25AM)
7/9/2012
I woke up and went to work. Called Mom and got some updates. No major changes - he had blood and platelet transfusion. Stools are on the flesh red side, although he did go less frequent. Mom found another new massage therapist and see if anything would work to help out the bleeding of the guts. The massage therapist stayed for an hour to give Alwin a general foot massage that focused on guts and GI tract. The last bowel movement was a little on the lighter red side. I also heard that a few nurses said green stools were instead a poor prognosis instead of dark brown or red. We are now all confused to what we should expect now.
There is currently a really big issue approaching us now, that is - we are running out of sleep to everyone. Alicia will be going back to school because she already took off 3 weeks. My Mom will be in the hospital for more hours (she arrived at around 9AM and will be at least in there for more than 24 hours until maybe Dad or Alicia comes by). And my Dad usually have to drive my Mom back - leaving Alwin behind by himself. I can only do so much because I have work 9-5 and I take care of him Friday and Saturday night - which I am surprised that I still have enough sleep. We really need someone to look after him between the time where Mom or Alicia takes off for a shower or nap. And unfortunately my Dad is the designated driver for both of them. And I know a lot of people have work between this time period. I beg you guys, if anyone of you have time, please let us know and schedule with us so that anyone of us can take a half day off or so, or even drive them back home will be helpful so that Dad can contribute staying over. We cannot maintain like this for too long. We are pretty much up for 36 hours per day (if we cannot sleep well in the hospital). Mom, for instance, is there since this morning 10AM and will be there until tomorrow afternoon when Alicia takes over, which is usually around 3-5PM. Please call us at any of the following numbers if you can contribute helping us and Alwin out.
My number 604-780-0187
Alicia 778-892-9052
Mom 604-369-8233
Dad 856-425-1428 (Long distance)
I just called Mom and figured out after the transfusion, Alwin's platelet remained low (from 37 to 32), although his haemoglobin is moderately high. Mom sounded really depressed by herself there. She had a feeling that she was just staying there waiting for something to happen. I chatted with her and comforted her - it does not matter what the outcome is, he will be always with us.
At the moment, I am just more worried about how much my Mom can really handle, it definitely is really depressing just staying there alone with no one to talk to.
7/10/2012
Mom called me in the morning to let me know some news. He felt tingling around his body - nurse mentioned that it was due to the low haemoglobin. He will be getting some blood today. His platelets are currently ok - at 40's. Stools are still red but lighter side. My Mom has not yet even slept until yesterday 10AM. Alwin mentioned that he felt like eating something. So Mom decided to drive back to Richmond T&T and buy something to make some congee and bring it back to the hospital. I tried calling someone to help out, but bad timing no one was really available. Mom was awake for so long. I needed to call Jenny and see if she could help out - at least on driving her because no one could've driven properly without any sleep for 30 hours. Eventually, Jenny and Victor drove Mom back to hospital. I got off work at 4PM and rushed to hospital. Knowing that Alwin eventually didn't want to eat or try the congee/soup, Mom was feeling a little unhappy for trying so hard. A spiritual care-worker came in our room and asked for Alwin. At first, we all thought what was a spiritual care-worker doing here? He asked Alwin if he wanted to talk to him, Alwin said no. After a few convinces... he still didn't want to talk to him. Alwin thought the care-worker was talking more on the religion side of spirits... but after chatting for half an hour with Mom and Dad, he is a care-worker that provides the mental and energy side of spiritual help. The care-worker will find a way to talk to Alwin tomorrow. So I took off with Mom and Dad, and picked up Alicia and we went for dinner. During dinner, I mentioned that I knew everyone would be taking about "What if Alwin is here, he would love it." I told them that there is no what if, because he will always be here with us. I also received a message from Jenny saying that Alwin was having fun with two of them playing Monopoly. After dinner, I took Mom and Dad back and drove Alicia to hospital. As I told Alwin that I was taking off with Jenny, he said "That early?" Looking at his look, I really wanted to stay, but I know we have work tomorrow, and Alicia will be here for him. I noticed also that his left arm has lots of bruises from the injections, meaning that his platelets are low. His stools since two days ago is still bloody red.
Today was a challenge - how to work this out as a whole family to figure things out. Jenny and Victor helped out. Thank you - I'm sure everyone appreciates this.
7/11/2012
In the midnight, Alicia was really worried about a random increase in frequency of Alwin going to the toilet - every hour for almost 5 times. She messaged me and told me about the situation. I asked her to ask the nurse to check his vitals. It sounded fine and I believed it was just the drug that the nurse gave him to get rid of his puffiness. He went to the toilet quite frequent, but a few times were all urine, although there were blood in it. Kenneth (cousin) called in the middle of the day and offered some help. We completely appreciate the offers. I told him I would call him back if we need any of urgent need of help - it is really hard to accommodate when we need help but I am sure in the afternoon, we will need someone to take care of him in between 10AM to 6PM, which is when everyone has work...
Alwin ordered a game online - K-ON for PS3. Alicia went home and we were all planning to bring the PS3 and my computer monitor to the hospital for him to play. Alicia made sure everything worked well and then have Dad bring it over to the hospital. Yay! So that Dad brought the PS3 and the controller, and using my computer monitor, the PS3 can output with HDMI. Trouble came - Mom called me and said there is no audio output since the monitor has no speaker. Alwin added that there looked like a audio aux jack at the back of the monitor. So then I would have to take a speaker to him. But eventually there was a headphone that I felt somewhere that Mom found. And here are some pictures of Alwin playing =)
Me being here gave Mom and Dad a chance to have dinner. During this period, Alwin used the PS3 and downloaded Final Fantasy 8! Alwin also wanted to see me play Djmax3 in the PS Vita. So I played until Dad bought me dinner. Then Mom's desperation again started. She called me in the same floor and wanted me to eat in front of Alwin to give him a feel of having appetite to drink the soup Mom made yesterday. I completely disagreed and hung up on her. I cannot believe Mom is still trying to use her maniac approach to make him do something. I finished dinner and went back to the room. Then I saw Alwin trying out the soup himself - without even needing to eat in front of him or force him to have appetite. Mom made 4-6 different kind of soups: pork, meat, vegetable, chicken etc. He tried 3 different kind, but didn't like any of them. It was not that he didn't like it, but when the nurse asked and mentioned about his taste, "Did it not taste what it was suppose to taste like Alwin?" Then he nodded. His taste bud is not as sensitive now and he definitely feels unhappy about it. Alwin went for another bowel movement - in Mom words rusty brown in color. Alwin stopped playing PS3 when he saw Mom packing - looking like he didn't want her to leave. After Mom departed, he also asked me what about me? How I really wanted to stay with him 24/7. But he knew that Dad would be staying over night tonight. Dad also wanted to contribute, but just didn't know how to accommodate everyone. As Alwin slowly felt asleep, I told Dad about things that he should be aware of, and then I unwillingly left the hospital. God Bless Alwin, thank you for letting him be able to continue enjoy playing games.
7/12/2012
Was too busy at work. Mom called me around at 10AM and asked me whether she should broadcast this on the radio since she and Dad knows the owner of Aberdeen Centre and the radio station. She wanted to ask if anyone has been through this and recovered. I told Mom that this is completely unnecessary and that she has to stop digging ways and things out to search for a solution. Other people in the world might have or have not survived through this, but that does not mean the same thing will happen to Alwin. I told Mom that she has to really stop and relax. She is making this loop herself - just like last night, she wanted me to eat in front of Alwin to make him have appetite to drink her soup; we agreed not to do that in the first place. Telling her that both outcomes would be good for Alwin convinced her last night, but she went back to this state of devastation. I understand her starting point. But all we can do as a family is provide continuous care. Leave the rest to the nurses and doctors to handle.
Up until noon, nothing really has changed. I heard Alwin went to the toilet quite often last night from what Dad mentioned. His platelets were as low as 20s. But after he got some, it went back up to 50s. I also heard a co-worker came and visit him at around 6PM, they chatted well. Alwin was awake for a few hours. He also decided to walk two laps himself!
I wanted to download a PS2 game for Alwin, so I didn't go to the hospital today. Alicia, Lok and I were trying to figure out how to download and burn this 7-year-old game tonight.
God Bless Alwin. Thank you for giving us the opportunity to make Alwin fulfilled.
7/13/2012
TGIF. Work was completely like a zerg rush. Mom called me at 10AM to give me a broad update on Alwin. He didn't go to the toilet for more than 3 times last night and slept a lot. He also asked who will be taking care of him tonight. Mom replied I will be, and he replied "Well that's cool!". So glad that he will be looking forward to this. Afterwards, a second call from Mom at 12PM was another news. The doctor has stopped providing him the GVHD treatment - most likely meaning that the GVHD is considered untreatable. Moreover, we were told by the doctor that the pink and white pill that he did not take was actually for diarrhea and GVHD!!! Because it was so hard for him to swallow, we asked the nurses how to let him take this pill, and they said it was not as important since it was for his stomach cramp. The pill has not be given to Alwin anymore. Mom was going crazy, like liternally crazy and panicked when she heard about the halt of the treatment. She now is asking why it has to be stopped and why no pills anymore. On the other hand, Alwin was frustrated why Mom has to get so upset about the pills if the nurses/doctors said it was not important. He knows that the treatment will not be given anymore. But he still believes that this takes time to recover and thinks he will recover. I am happy for his hopeful mind. I arrived at 5PM seeing Dad here, Mom went home to take a shower. They will be attending a dinner.
I came across the nurse leader and we had a chat about Alwin. She was more concerned on how my Mom would face the outcome. She was the one who called for the spiritual advisor, and it was targeted for Mom instead of Alwin. She also pretty much confirmed that the treatments were not beneficial to Alwin any more and that was why they took it out. She knew that Mom is still at the beginning stage of accepting this only. She gave me a hug and hope to see us on Monday for another meeting - which I do not think anything new would be said since we can see it with our eyes.
Jenny and Victor came by for a visit. Alwin tried to sleep in between but had to do assessment and he hilariously cursed because he was awaken by the nurse. Mom and Dad came back from dinner; had a talk with Mom and see how she is dealing with it now. She seemed like she stood up more than before. And I kind of shared her my way of thinking about life and afterlife: there are two worlds I believe in, one where we are now, and the other one is a place where there are bodies without spirits controlling. When we leave this world, our spirits go to that place and will move into the spiritless bodies and continue to live eternally - kind of like the way religion explains as "heaven" or "reincarnation", but more in a scientific way.
Alwin could not get into deep sleep yet at around 12AM. He called me twice to see what I was doing - as I am actually typing this entry in. I stopped and sat by him, touching him until he fell asleep again.
7/14/2012
I didn't even know what time it was that I fell asleep, but Jenny was in front of me looking at me when I opened my eyes (9:30AM). It also looked like Alwin recorded a time at 6:30AM going to the toilet by himself without help. Jenny arrived to cover me up to go home and take a nap until Mom and Dad arrive to the hospital. I didn't really have a chance to nap but took a shower and went out to eat. Jenny told me and said Dr. Powers (the main doctor responsible for Alwin's case) told Alwin that there was nothing else that they can do any more to treat the disease, but they can provide supportive care to "maintain and keep" him at this status the most they can. Mom also talked to the doctor about the Chinese medicine that might help him with his bleeding. The doctor agreed to mention it to him and let him know that we never knew what can happen but there is an alternative medication here. Alwin did not have a response yet to that idea - or his response was that doctor never mentioned anything special. So we were suspecting that Alwin didn't want to take them, or he completely forgot what the doctor mentioned.
After having lunch-dinner, I went back to try to take a nap, but at most an hour, and went back to the hospital. Rex and Gloria (cousins) were here, and I heard that they played Monopoly Deal for a few hours. And when I arrive, Rex was just about to start to play Checkers with Alwin. Alwin was actually exhausted from the Monopoly, but he insisted to play with Rex. During the game, Alwin was playing with only one eye opened (his usual look when he was tired or when he just wake up). He was also felling asleep with his head dangling in mid-air a few times. Providing this, he won the game! We all insulted Rex for losing this game to Alwin, and he smiled =D Thanks Rex and Gloria for coming.
As Mom, Dad, Alicia, Rex and Gloria depart, Alwin slowly went back to sleep.
Sunday, July 1, 2012
July 1st week -
7/1/2012
I went to the hospital at noon and see how things were going. I was told that Alwin did not bleed at all judging from the color of his stools. Everyone else went back as Jenny and I stayed a little longer. We played Monopoly Deal again like two weeks ago! He took the second Cellton pill, but puked after a few minutes because of the bad position he was sat in. Jenny went home and I stayed overnight in the hospital, seeing Alwin awake all night long except taking a nap for one hour. That surprised me. We had fun playing games on our own but chatting together. It was nice seeing him back to his game.
7/2/2012
Mom came in the morning at 6:30am after hearing that Alwin puked from the pill. I went home to take a nap, but woke up at 12pm and went back to the hospital. Knowing that Alicia did not even give a shout to ask for the situation, me and my parents went into an argument just to figure out who to stay overnight - but really, why do we have to have a stupid argument over this? I talked to one of the nurse and she suggested my parents to go have a chat with social workers because being emotionally attached to the situation, any one of us will blindly make a wrong decision.
Mom called Alicia to ask what was happening... Parents went back for a shower.
At this time, I reminded Alwin to take his pills - including Cellton. He took the one prescribed by the doctor, but he refused to take the Cellton. He said that will make him puke again. He insisted and said this is the last resolution, "NO MORE 2ND ONE, I CAN ONLY TAKE ONE PER DAY".
At the meantime, Alicia came. Afterwards parents came back too. But eventually my mom stayed overnight, whereas dad, Alicia and I went home.
7/3/2012
I went back to work as normal. I called my mom at 11am to get some information. I was told that Alwin had bloody urine - a sign that might come from gallstones, from the treatment (Octreotide - a drug that slows down diarrhea and internal gut bleeding). He will be doing an X-Ray scan to his bladder later on this afternoon. He refused to take the (first) Cellton this morning even though promised yesterday. He knew that made Mom really unhappy. But he still did not take it.
It took around an hour an a half for the X-Ray line up to process. Then Alwin was taken to scanning. Dad arrived at around 3:00pm - just right after Alwin finished scanning. And another dramatic scene started...
Dad asked Alwin why he did not take the Cellton pill. Alwin replied and said he believed that would do no good to him. Dad was really setup because Alwin promised to take it last night. Mom just replied, "I eventually have to go home a take a rest. I can stay here 24/7 with you and give all my love to you. But you have to reply and show some love by taking it - whether it is working or not." Alwin cursed and took the pill immediately with a big mood burst. Mom just stayed and cleaned up after Alwin and tugged him to bed before taking off.
Alwin fall asleep as they depart. Mom called me when they depart. I heard the news and took off early from work because Alwin was all alone by himself. I arrived at 4:45pm and he was sleeping. At the meantime, one nurse told me that Alwin might have a viral infection in his bladder. So she needed to take a urine sample. Alwin played with his transformer pad until he was bored.
And we decided to play Monopoly together using the pad. One stool came out to be a little bloodier than expected. After that he was feeling really nauseous. He could barely sleep, but eventually I convinced him to.
Mom and dad finally arrived at around 10pm as they just noticed that I was here. Mom made some "soup" for him to drink a few sips. I am sure those are not just soup... but whatever works.
I took off at 10:15pm, telling Alwin to take good care of himself and listen to Mom more. Alicia will be arriving at 10:45pm.
God Bless him tonight.
7/4/2012
Woke up feeling lack of sleep, I messaged Alicia to ask for some updates. I heard that Alwin got pissed from needing to go to the bathroom every hour, making him extremely lack of sleep. His steroids must be giving him a hard time to sleep. Alicia ended up sleeping 3 hours. Mom arrived around 10:45am and Alicia took off for a meal and afterwards home to take a rest. Mom was depressed from hearing the urine getting redder. The result has yet to come out from the dip test and X-Ray. Up till 3:00pm, Mom has been there for him and constantly changing his stool color or any type of changes. The color seemed back to the greenish color, maybe with a little platelet. Doctor mentioned that it is a up and down cycle and said he is on the stable side now. When i arrived, dad and mom were here just relaxing while Alwin was asleep on the chair. However, he woke up 5 minutes after i arrive following some random new symptoms, a mild nose bleeding and a pale face.
Alfie and James (Alwin's coworker) came by and visited. However, Alwin was really stoned due to the strong antibiotic that he was taking and did not really respond a lot. He ended up lying on one side playing with his pad. So they ended up taking off to let Alwin take some rest. Thank you both for coming!
Afterwards, some frustrating thing came up. Alwin was told that he, or anyone of us, has to inject insulin for him from now on; that also includes checking blood sugar level with the finger-poking needle device. Nurses and dietitian said this is for his long term benefit to check it by himself. I personally think this is not right. Firstly, Alwin being in his current status can barely remember to even take his oral pills, and he is expected to do this? Secondly, isn't this why the nurses are here for? Thirdly, he cannot even hold anything stable, and they expect him to stab himself with the insulin? Fourthly, Alwin sleeps most of the time and we are not always besides him, how do the nurse expect we to keep track of this? And lastly, we were the ones told that his status is day by day under observation, and what? They said this is for his long term benefit? Aren't we going too far from now? I am sure I have enough reasons to judge that this is not the right practice for someone like him now. On top of that, my over-confident Mom tried twice using that device, but for twice she forgot to clean up the site before injection, neither did she wear gloves. I tried talking to one of the nurses to let her know that we wanted them to handle this instead. I ended up getting a response that pretty much is the same meaning as ignoring me. I feel like some of these nurses and doctors are giving up on giving intensive care, though I know this is not the Intensive Care Unit. But given that his corresponding doctor is not here for a week and some nurses are suggesting all these self-care practices, I am not sure where else can convince me that they are still caring as much, except the fact that he is still being given constant medications.
I left at around 8:00pm, Mom will stay overnight tonight. Dad bought her dinner before he departed.
God Bless Alwin. God please take care of Alwin for me if the nurses cannot be much of help.
7/5/2012
Woke up feeling confused, I went back to work on time. Called my mom at 10:30AM to get some news. Alwin did not bleed a lot from his back passage. I heard it was minimal volume. However he did not sleep at all, or, cannot sleep. Mom did not sleep too because Alwin was awake all night long. I do not think my Mom can last healthy like this for very long until she gets sick. I tried going overnight 3~4 nights consecutively, and it was depressing, tiring, and feeling hungry and weak. But there are just so much we can do. My dad drives around my sister and my mom, he does not stay overnight. My sister and mom are taking the night shifts every other day alternatively. I can only take Friday and Saturday night. The reason why we are doing this is because Alwin will definitely feel left out or lonely if no one was there the moment he wakes up. And as most of you know, Alwin needs a lot of attention. The last and least thing we want to do is to left him out.
In the afternoon, Eric and Haruna (our cousin) came by and accompanied Alwin. They played a few games of Monopoly Deal with him and chitchatted for an hour or so. Alwin was pretty energetic while they were here. They departed at around 2:30PM and Alwin went back to sleep.
Though there is currently an issue with his back passage now - he is getting skin rashes around the spot and nurses gave a caution that he can get a skin infection from there. Mom wants to stay to help Alwin take care of his rashes even though Alicia said she can take care of it tonight.
I contacted Alicia to see if she can help out to buy some briefs since Alwin needs to avoid infection. Then I overheard that mom was on the background whining randomly, meaning that no one is at the hospital again! I took off work and went to the hospital directly, having Jenny help me out to buy briefs and wash and dry them before they could be used.
When it was time for Alwin to take his pills, he asked for the Cellton pill! And without a thought he took it! I was so surprised! Good job brother!!
Mom and Alicia arrived at 7:00pm. Dad bought food for us, and everyone was here in the room reunited. While we were chatting, mom mentioned something I find really serious - the nurse in charge in the morning forgot to give Alwin his pills (for preventing high blood pressure, liver and heart infection). Mom said she felt something awkward, and noticed not until 1pm, she noticed Alwin hasn't taken his pills yet! And not until she mentioned it to the nurse, she gave it back to him! How can this mistake be tolerated?! I went to ask the nurse leader, and after she went to investigate, she came back and just elaborate on the other nurse getting distracted and that a few hours late of the medication would not do any harm to Alwin. I do not think that is the point. But if anything like a blood transfusion be forgotten, that could cause his life! My mom was holding on filing a complain to CRNBC for now.
Anyhow, since they are all here, I took off with Jenny at 8:30pm and let them take care of Alwin. God Bless us.
I contacted Alicia to see if she can help out to buy some briefs since Alwin needs to avoid infection. Then I overheard that mom was on the background whining randomly, meaning that no one is at the hospital again! I took off work and went to the hospital directly, having Jenny help me out to buy briefs and wash and dry them before they could be used.
When it was time for Alwin to take his pills, he asked for the Cellton pill! And without a thought he took it! I was so surprised! Good job brother!!
Mom and Alicia arrived at 7:00pm. Dad bought food for us, and everyone was here in the room reunited. While we were chatting, mom mentioned something I find really serious - the nurse in charge in the morning forgot to give Alwin his pills (for preventing high blood pressure, liver and heart infection). Mom said she felt something awkward, and noticed not until 1pm, she noticed Alwin hasn't taken his pills yet! And not until she mentioned it to the nurse, she gave it back to him! How can this mistake be tolerated?! I went to ask the nurse leader, and after she went to investigate, she came back and just elaborate on the other nurse getting distracted and that a few hours late of the medication would not do any harm to Alwin. I do not think that is the point. But if anything like a blood transfusion be forgotten, that could cause his life! My mom was holding on filing a complain to CRNBC for now.
Anyhow, since they are all here, I took off with Jenny at 8:30pm and let them take care of Alwin. God Bless us.
7/6/2012
Called Mom to get some updates at noon. Mom said she arrived at around 10:00AM. She said Alwin took the medication early in the morning (including Cellton). He also received the 6th dose of the GVHD treatment - though the treatment was known to be non-responsive by the doctors, we still believe anything that he receives will work! His stool color from the last few previous bowel movements was brown red - meaning there are some bleeding from the guts. Everyone was up for a few hours.
In the afternoon, the nurse wanted Alwin to at least walk a lap, but he refused to. Mom made some herbal soup from yesterday to stop his internal bleeding, but Alwin did not feel like drinking them. At a moment Alwin wanted to drink soy milk, but since Dad went to the dentist, Mom needed to walk all the way to safeway and buy one. When she was back, Alwin did not want to drink it anymore. Up until now, his previous few runs of bowel movements came out to be red, which was not good at all. Mom was really fed up from him being overly stubborn, and wanted to consider telling him his situation to force him to drink the soup. But I ended up stopping her to do so (on the phone) because that would only make him feel miserable for the time being.
Jenny and I arrived at around 8:30PM to take over the shift. As I arrived, I feel this bizarre environment. Mom started telling me where the chinese medicine, soup and drinks are located. She then started sighing and telling me how hard she tried to convince Alwin to drink them but never succeeded. Mom also mentioned that I would be surprised if I see how red his stool color is. After they depart, the room was in silence again. I could hear Alwin breathing deeply, even deeper than before while he was asleep. He used to wake himself up with some cough a few days ago. But he was sleeping so deep that his cough would not wake him up, nor would his dream-talking. Mom called me again to ask for his white blood cell count, but I hung up after telling her that the count would not be relevant at all to the internal bleeding.
At around 10:30PM, Mom called me again and talked about how Alwin did not even take his other prescribed pills. Jenny and I went to talk to the nurse and see what could be offered since we know this would be a serious situation. The nurse wanted him to take at least the pill that maintains his heart. He did. And afterwards, he was awake for a bit. So three of us started playing Monopoly Deal again! From what Jenny said, there is currently an extended version. Alwin is really interested in it. I am planning to go get it tomorrow!
So after two games - one won by Alwin, he pressed the Hydromorphone and was getting ready to go back to sleep again. Except that, Mom called again with Dad beside her telling me and Jenny to convince him to take his Cellton and Chinese medicine. They desperately wanted him to take them because they knew after this weekend, the doctors would have another evaluation on where this would be going. Jenny tried to have a talk with Alwin while I was occupied on the phone with Mom. Mom was getting to the point where her focus was to force Alwin to drink or take the chinese medication and Cellton pill by telling him in his face that his bleeding was not stopping or the western medicine was not working. But I am positive till now he has a sense of it. While Jenny was talking to him, I went to talk to another nurse and see if there were anything that they would do to accommodate us on helping Alwin take any other alternative medicine. Jenny came out afterwards and we chatted a bit. And we noticed that everything seemed to come out of my Mom's objective, but she never really tried thinking what Alwin was going through. We finished chatting with the nurse. Jenny updated me back with what Alwin talked about - he does not like Mom now. Seeing her coming in and out and first thing she asked him or last thing she said to him would always be "Did you take Cellton yet?" It has come to the point where my Mom is actually annoying Alwin and everyone now - which I do not hate her or blame her for it. But the nurse said something that really made sense - there has to be a balance between giving him what he wants and forcing him and giving him more stress. Alwin told Jenny that he was feeling really stressful when Mom was around because he knew her motive would always be on the Cellton. Jenny left at around 1:45AM, for she has papers to do.
I am getting more confused everyday... what am I to do? Though I completely disagree on forcefully telling Alwin to take those supplements, they did show some results after he took it. Time is running out; Alwin said that he would take it by himself without anyone consistently reminding him, which would instead annoy him.
At around 2:20AM, and Alwin woke up to go to the toilet. He likes to call it "The obstacle besides my foot" - it must be a part of his dream when he kicks a stone or some sort. The first thing he asked was "Did Jenny left?". I am starting to notice when he asks such question with a name in it, that person is really trustworthy to me.
7/7/2012
Alwin definitely had a good sleep. He only went to the toilet once at 5:55AM, and the second time 10:10AM. Although the stools were flesh red, doctor came in and evaluated that the less frequency of going bowel movement supports a good sign of recovery. Dad and Mom came at around 10:00AM, so did Josey, our long term maid when we were young and took care of Alicia for almost her whole life starting when she was born. However, maybe because of the loss of blood, Alwin was not too conscious to talk to anyone. Mom also brought him his favourite Coca-cola, the class bottle version! He took a sip and said something really funny afterwards, "哇! 好舒服! 但係呢一淡都製造幾多創傷。" - or in English, "Wow! That was good. But this sip probably created some damage". Me and Mom laughed at his response.
I took off at around 2PM to go home and take a big nap. Woke up at 8PM, and notices that Mom eventually mentionde about Doctor Chan's medicine that would stop his bleeding, but Alwin said no to taking it again. Mom also noticed that on the name list besides Alwin's last name, there was a red card showing "Alert". I think the doctors had a poor prognosis about these few days. Nurse came in to do blood work and talked to Alwin about walking another lap or two because it would be good for his lungs and blood circulation. But he replied "Not today." Nurse insisted but Alwin's answer was consistent. Mom saw this situation, with Dad bugging her about having dinner together, they took off to grab a bite. I quickly took a shower and took off to have dinner with Jenny too and eventually arrived at the hospital at 10:30PM. Just right when I arrived, Mom and Dad wanted to take off right away. And immediately Alwin when to the toilet - and yes, his stools were still bloody. After his bowel movement, he took his transformer pad and started watching some Japanese anime. After 30 minutes, he felt tired. Nurse came in to do his blood sugar, so I asked him some questions. First, the red tag "Alert" was to notify the nurses that there are two "WONG"s, just so the medication and charts do not mix up. Second, even though he might be bleeding from his back passage, his blood counts looks normal at the moment. So currently he is still stable in a way - I hope I am not just convincing myself.
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