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.