June entries - the big visit and the first critical period.

I decided to start a blog - remembering how strong we as a whole family has battled this through with Alwin Wong.

My brother Alwin Wong, 35, is diagnosed with Myelodysplastic Syndrome (MDS or leukemia) on early September 2011. Earlier on the date, he had a mouth thrush followed with a stomach flu for 4 weeks and he had a blood test that came out as a surprise - his white blood cell is irregularly lower than regular range (3.0 out of 4.0 - 11.0).

My mom heard the news and came immediately the following day he was diagnosed with such disease. We were told that the cure/treatment to this disease is stem-cell transplant, which they have to find a good match from a donor to prevent something called a Graft-versus-Host Disease (or GVHD). The probability of a match, however, is only 25% from siblings and even less from unrelated donors. So at the end of September, me and my younger sister went to do some blood tests and luckily, we were both a match for him. Unfortunately, my (ex)company and (ex)boss could not accommodate my situation too well and I had to quit the job. And so I quitted my job to go with the stem-cell harvest.

The harvest process was quite interesting. I was injected with something called G-CSF thrice, once per day. This injection makes a body over-produce stem cells and into the bloodstream. And over those three days I was feeling my bones pumping with pain. The fourth day came and I had a needle stabbed in my arm for around 6 hours to harvest my stem cell. The process was a success! (November, December 2011)

The day came for my brother to do his chemotherapy. As everyone knows, the first impression of chemotherapy is making patients puke and giving them diarrhea. Alwin was brave enough to enter this chemotherapy process. It was not bright at all. The chemotherapy made him puke, gave him extreme pain, and to kill this pain, he was given high dose hydromorphone.

Seeing him going through these 40 days was depressing. We could actually see him acting in his dreams, moving hands, twitching arms, fingers moving in a mouse-clicking motion... and at that moment I thought - why did he has to go through this? Eventually, after around 30 days of chemotherapy, the stem cell transplant was done.

A few weeks later... he was back home - taking steroids, ciclosporine and other drugs orally. The first few weeks, he was really tired. Then he went back to his happy life - playing computer games and having meals with us. All he had to do was to go back to hospital daycare every other day to do a follow-up check (March 2012)

After 100 days, which is usually a normal practice to lower down the dosing of steroids to see if the (chronic) GVHD comes back, he was readmitted to the hospital. Then another surprising situation jumped out after another week. He puked all over at home and did not look well at all. Daycare nurse said it was a natural reaction at the first day. Then the second day he was getting worse. Mom knew something was not right and brought him to the ER, and eventually knowing that after a CT scan, his guts were completely inflamed.

His case was told to be atypical. After 100 days, there should not be an acute reaction from the GVHD. But judging by the scan and symptoms, he was having a severe acute reaction. And so he had to be admitted to the Leukemia/BMT department and stay for treatment.

As of May 2012, we were told that the treatments (high dose steroids and rATG) were not working. His guts were still the same and he had been having bloody stools. Doctors evaluated that he has a Grade IV Guts GVHD, the most severe case that the disease is graded. We were told that he would be going for a 3rd treatment - called the etanercept. And we had a family meeting with the doctors and were told that he might not be able to go through this. He might eventually bleed out to his artery and he will go into a permanent coma. We were shocked... my mom wanted him in the ICU but we convinced her not to because there was nothing else the ICU can do.

As of mid June 2012, we were told that the etanercept was not doing its job. We found two Chinese doctors that were known to had save patients with last phase cancers and even from the ICU. One uses massage therapist as a treatment, and the other makes a unique medicine for him. Day by day, his stools looked redder and redder, and it was a really poor prognosis.

6/23/2012
Alwin was baptised! Alwin's ex-roommate from previous chemotherapy came with a priest. And we all pray for him and to God to give him the willpower for him to recovery.
I called my cousin Hansen Lee in Hong Kong about the poor prognosis. He had a talk with Alwin. I also told Hansen about the baptise. And he was really grateful - a day ago he prayed to God that he wished someone (a priest) could help him believe in God. And it happened!

6/24~25/2012
Knowing the bad news, a lot of visitors were starting to come. Alwin's coworkers came as an army of around 6 on the 24th, and more than 10 the day after. He was really surprised and happy. However, Alwin tried his best to drink the Chinese medicine, but he did not like it and he said he would never want it again (we even tried having his best friends and co-workers convinced him). He felt really stressful from hearing that even his friends came just to tell him to drink that. Eventually we just let him be and let his co-workers and friends play with him. His co-workers even brought a Justin Bieber card! He was really happy. I left early and let him enjoy the moment with them.

6/26/2012
Mom gave him something else - another type of Chinese medicine and mixed into white congee. It was given to Alwin without him noticing that the Chinese medicine is mixed into it. His stool color started getting better - from red to brownish. However, he started not to like the taste of it and did not want it anymore.

6/27/2012
Doctor Chan (one of the Chinese doctors mentioned above) had been giving him massage treatments, and his stools did have an improvement. He also suggested Alwin to take the seaweed pill Cellton, which was well-known to give a really strong body-maintenance - stool color was starting to change on the greenish side than red.
At night, I found something called PHY906, a Chinese soup known to treat severe diarrhea. I posted it on facebook to get help. I got a lot of help from friends and relatives. I was really touched. I thank you all for giving us this support.

6/28~30/2012
My friend's mom bought PHY906 for us. Unfortunately, we were told by Doctor Chan that this would be too weak to treat his diarrhea.
On the bright side, Alwin's stool color is not red at all - maybe once. But he was awake and he wanted to walk two laps. So Jenny and I walked with him. After that he shaved and even brushed his teeth. We were all so cheerful and happy for him.