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.