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)