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.

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.