thank you 14th december 2008

thank you all my friends*, who's willing to spend

spending your time

for kids who will always be in your mind

spending your effort

for something little out from your pocket

spending your smile

for aching both legs after walking more than a mile

spending your heart

for exhaustingly working so hard

spending your loves

and sharing it with us....

*my friends are those contributors, volunteers, ward doctors and staff and all the kids and parent in the ward

it all set!

Some of the books

Hampers, gifts and bags are ready

MaxFamily is visiting Pediatric Ward tomorrow! I felt so happy that the responds from the contributors were huge. We had a 'packing day' last week and now it all set.

We will be in the ward from 9.00am to about lunch time. We have a great project called "Smiling Pillow", a small craft making activity with the patients in the ward, a small idea that I am sure will turn into an exciting and fun thing do togather with the kids later. Apart from that we are bringing clown with his stuff and magic joke and Santa Claus that will surprise them with gifts.

Thanks again to contributors, my friends and volunteers.

Packing day

contributions coming in!

I have started getting contributions from friends and friends' of my friends. I know they are good friends and they really interested to give a hand. I guess everyone would love to take part but sometimes it is the lack of chance that limits them. Anyway, thanks for everyone's interest. Sure I ll put up photos of the visit when everything over.

pediatric ward visit

As like last year, we at MaxFamily are planning to do another charity visit to the Oncology Ward in Pediatric Institute (also place where I am currently working) this coming December. I did not manage to join last year since I was still in the recovery and 'confinement' period after the transplant. I knew the event was quite significant as the kids in the ward were really enjoyed our visit and the gifts that we brought for them.

I started emailing all my friend if they interested to contribute anything as we may want these unfortunate kids to be happy, as happy as we were during our past childhood times.

october workshop came again!

the birthday cake

Wow, today we had another workshop and as usual it was another great meeting for us. In conjunction with Max's birthday on 19th October, we hold a regular meeting and workshop during October every year.

As it always do, this time there were significant numbers of turn out and a third of them were new comers. They really used this workshop to learn more and ask lots of questions during the session with the doctors and I felt so glad they all did.

So guys, see you again in Jan 2009!

meeting my 'old good friend'

I went to the hospital two days ago for my regular follow up apart from getting my final monthly infusion of antibody (IgG). The blood test for CML marker molecule (bcr-abl) result from Singapore that was sent a month ago was also ready for review and I really anxious to know. This result will give me and the doctor an idea what to decide on next. Ideally, traces of CML marker molecule should not be detected after about a year after the transplant. In my case, the last 2 results within a year of my post transplant period was still positive but at the very low value.

So... the result is still positive (it is slightly lower than the previous one). The options (if the blood result still positive) were discussed during last follow up and this time around it was easier for me to understand and just follow the plan, that is to go back and take my 'old good friend' i.e. Glivec again, may be for a couple of year. It was not a hard decision though, since I had used to to it before.

SELAMAT HARI RAYA

Dear all Muslims

SELAMAT HARI RAYA AIDIL FITRI
MAAF ZAHIR BATIN

I do still remember what the feeling was a year ago when I was still in the recovery period when there were still a lot of restrictions. Let me tell you, at this moment when everything seems coming back to your life, you may not remember how hard it was during the difficult times and you may not even remember that you have gone through those days. That's why, always believe that at any time you feel it is so much difficult, there 's a lot more time where everything seems so easy. Always say thanks to Him.

AFTER ONE YEAR

Yesterday was my 'first birthday' since I was transplanted and growing with 'new blood'. It was 18th September 2007 when my brother kindly donated his blood. Looking back to all those days, it was full of emotions and I am glad it was not that bad, at least if I were to see other patients who may have more difficult journey. I would say it was a journey with amazing experience and having said that I always feels that I am always a more fortunate person despite the burden from the transplant and that is how I appreciate the whole thing.

And now after one year, I have got back my 'life'. I have started working and doing my usual stuff (operating and seeing my patients in the clinic- half of them were not realized my 'comeback' and those who did, ask me why I am not as 'white' as before!). I have gradually catched up with my study (I got an exam next year) and started to plan my fellowship attachment now.

I am also getting back on track with the CML support group and I guess there are a lot more to do. People and friends around me always tells me to take it easy and do not stress out. Yes, they were true since my physical and mental may not have reach my previous level, yet. I do always get 'bugs' and it will take a longer time for me to completely recover. But on the other hand, getting back to 'work' make me feel more healthier and lively. At least they see me like what I was before and more 'brightful'.

'down' for a few weeks

I have not been writing for quite sometime because I was not really well for the last few weeks. It took me longer time to recover from common flu and throat infection. Furthermore, I guessed my 'stamina' was also not that at par. I have been travelling a few times past few weeks and I noticed that I was easily exhausted.I took leave from work a few times during that time when it was really 'down' for me.

I managed to join the Hospital Sultanah Aminah, Johor Bahru small meeting with CML patients. Even though it was not like as big as our previous meeting/ workshop, it still means a lot to the patients and they really appreciated our visit.

Among the patients (half has gone back before picture session) with the doctor and us.

I also managed to attend my wife 'big day'.

Finally, selamat berpuasa to all muslims.

colours of hope

Another event for CML patients and their caregivers. Thanks to them for making this event another success. We took this 'get to gather' chance by organizing workshop and using art as one way to motivate them. We ve got Sahimi's (our comittee member and artist and his friends from Central Market) to help handle the workshop. It turned out amazingly and never knew that most of the patients and their family could be so expressive when they were given a chance to draw and show up their talent....

So much glad it' s another success

measles threat

My daughter is having measle. She had fever 2 days ago and when it start setlling, all those typical rashes came out. Immediately I knew that it would be a threat for me since all antibodies that I have from chilhood immunization lost after the transplant.
So, now I am in the day care getting immunoglobulin (antibodies) infusion for 2 days.

the latest result

I had a follow up the day before yesterday and had met up with the hematologist. The result to assess the residual disease (PCR for BCR ABL protein) that was sent to Singapore a month was ready. There was a slight increment in the level but having only one result to compare with (one taken 6 months ago) does not give any significant value. Furthermore the level is still much below desired level and I am still in the 'major molecular remission' i.e the amount of cell that still having the potential cancerous molecule is very minute. Anyhow, I will have another testing in another 3 months to see the progress before discuss on the possible options.

After a few days enjoying the anti fungal 'body spa' and anti fungal pills, I would say that there is some improvement from the extensive 'acne' that I am having. There is much less new lesion now. Otherwise, I could have a skin biopsy to confirm the actual problem.

it is fungal!

I met the dermatologist today. Afer she had a look on my face, neck and body, she was really convinced that it is a fungal infection. I can't really remember the scientific name but apparently this fungal is a kind of that usually resides our skin but since I am on immunosuppressive drugs (steroid), this organism is happily overpopulating and multiplying and producing acne like lesions.

I was given all kind of anti fungal i.e. bath soap, shampoo and cream. Hopefully it will work since this problem can sometimes be irritating from itciness.

colours of hope

"maximize life workshop for CML patients and caregivers"

We are holding another workshop this coming 26th July ( Saturday) in Ampang Hospital and this time around we had choosen art session as a medium to motivate patients and their families. This is also in terms with art contest and we are hoping patients and their family can sit togather and produce some art pieces.

This event also as part of our series of workshop that we hope to have it regularly every year.

great meeting in baveno, italy

Me and Fan, both of us representing our MaxFamily group with our posters

During one of panel discussion

Baveno town viewed from the boat ride

I am safe and and back to Malaysia yesterday. Apart from a bit of jetlag, the rest are okay and I am still excited about the meeting.

Baveno is a small town by the side of elegant Lake Maggiore. The town is a bit quiet but yet I would say a excitingly beautiful place.

I met a lot of great people during the meeting representing support group, physician, drug companies and most of them comes from European and Latin America countries . The whole meeting was about getting to know latest updates on CML and GIST and its treatment and also about advocacy and networking among various support group. I have learned a lot from the meeting and hope it will be another motivation for us to push the group to the next level.

I also took a chance to talk to one of the speaker who apparently a transplanter from Hammersmith, UK and discuss about my progress.

I am seeing a dermatologist next Friday for my bad acne problem and next week I am seeing the hematologist again to review the PCR molecular result.

With the Novartis officials

repeat blood test

I went for follow up the week after I came back from Korea. My blood sample also taken for repeat PCR test (to be sent to Singapore) and I hope the result that will come in next couple of week will show some reduction in the residual disease. Otherwise, there would be some change of plan, I guessed.

The doctor was happy when I told him that my appetite is getting better and my mouth is not as 'tight' as before after I was restarted on steroid. Hmm...talking about steroid, means that I will be bloated again, bug by the gastric uneasiness and labile mood. Anyaway, it is good that it can control the GVHD effect from overwhelming and do more harm to my body. I will be on monthly Immunoglobulin infusion for the next few months to boost my body immune.

My face is still full of acne like lesions from the GVHD effect but its okay. Oh yes, my weight haven't gone up yet. May be I should eat more and get back my 5 kilos, as been advised by the hematologist.

Jeju Island

I dropped by Seoul while waiting for my next flight to Jeju in the afternoon.

The quite town of Jeju City in summer.

I came back back from Korea yerterday. It was a great trip and Jeju is a nice and quiet place to stay. It was summer and the weather is still cold and windy. The meeting was good and I learned a few more new things there. My paper presentation was also great when they were impressed with my study. Anyway, I managed to find time to take a short trip to one of the tourist attraction the day after my presentation. We (me and my friends) took a bus from hotel and stop at this place Seongsan Ichulbong where the mountain rise peak located. It is located at the east of the Jeju Island and it took us one and a half hour to reach there by bus.

This mountain crater was once a small volcanic eruption under the shallow water and later became a small island which people come to see the spectacular view sunrise (of course I didn't manage to see since we reached there almost noon). We have to climbed 1.8 km up and that was so exhausting even after we have to stop a few times. It took us about 30-45 minutes but the view was so much rewarding.

We were welcome by this Uncle 'Dolharubang'

The crater at the mountain peak

The view of the town from the peak

'Hallabong', the special orange only planted in Jeju Island

We went back to the hotel by taxi since we were too tired to be in the bus again and I managed to catch the workshop of the meeting that afternoon.

last 2 weeks

Sorry for not writing in the blog for quite some time. Since I came back from Kelantan for that event, I was not that well. I used to have headache and dizziness. And after that I went to Shah Alam for my PTK course ( on job training course) for 8 days. The schedule was tight when we have to do a lot of assignments and most of them have be completed before we go back. Towards the end of the course, I was hit by a fever, cough and flu and to some extent I had to skip a couple of classes and the group discussion session. Anyway, its over.I have another long assignment need to be done and I have another 10 days before I need to pass it up.

Next week I am going to Korea when my scientific paper was accepted to be presented. I never expected it to be accepted anyway since I was invited to attend CML leader summit in Milan end of next month. I think that I should not miss this summit since it is a good place to meet those people from all around the world.

Oh yes, I met my doctor yesterday and after telling him all the increasing symptoms that I am having lately, he was a little concern that my GVHD efffect is showing more than limited that he want to see, and it has cause some quality of life issue. He advised that I should restart on steroid again. For your information, I continued to loose some more weight and I am as wasted when I was first strike by CML last 2 years ago. This is partly that my appetite is not doing good and I have a limited choice of food due to my mouth problem. I hope that this could be temporary as I am always wanted to be back to what I am..

another leap and reach out in kelantan

10th May was another leap for us. This year, our mission is to reach out more CML community outside of Klang Valley. HUSM which caters most CML patients from Kelantan and Terengganu was selected to be the event venue. Thank you to HUSM Hematologists for being so supportive in making this event another sucess for us and a good start for the local CML community.

The turnout was great and unexpectant despite half of them comes from some distance kilometres away. Thanks to the patients and their families. We learned a lot from the workshop, obviuosly we learned from them. We learned that the approach may be a bit different and tough but we believed we have done something worthwhile and this was showed by patients eagerness and how they are so looking forward for the next meet up!

I flew back on the same day in the evening and felt so tired but so much glad that it was another great great happening.

Next week our mission will continue in Penang and hope it will be another great leap...

another great event

Yes, we made another great Max history yesterday. This time, I was so much excited for two reasons. First, this was the first event that I was able to attend after the transplant and secondly, I was amazed with the turned out and how much passionate and enthusiastic they were during the workshops. The programmes went as planned togather with the surveys.

The subgroup during the workshop

My presentation

See how excited they were!

Thank you doctors

Thank you guys!!!

So much satisfied after it's over

another big event tommorrow

Tommorrow will be another big event for Max Family and the Max Foundation. So far, about 130 people are coming. That includes patients and their care givers, volunteers, doctors, nurses and of course us, the committee.

We also have 2 friends coming from out of this country. Angeli, the Max Foundation program officer from the Seattle office and Wirat, from Thailand Max Station.

I picked up both of them at KL Sentral last night and brought them to our Max Office before we went for dinner. Good to see Wirat again (he was here last Malacca event) and to meet Angeline for the first time. Hope both of you enjoy Malaysian stuffs....

the meeting is getting frequent

One of our 'teh tarik' session

For the past couple of weeks, me and my friends had more meetings. First we entertained our good friend, the Max Foundation head and secondly as part of our meeting and discussion before the next patients gathering event on 26th April.

On one of the day, we took the chance to have it in one of our couple's house since they haven't 'warm' their house since they shifted to their new home. We had a great meeting and of course great food after that.

At Shikin's house, I gave every member a small 'not so art' piece as my appreciation for their continous support

Dear friends, if you don't leap, you'll never know what it's like to fly. So keep leaping.......

now my eyes were drying

Not long after I started to have mouth problem (which is still burning in pain even when I am taking the least spicy food), I thought I was further stumbled with eyes problem. I noticed that my eyes get easily dried and they tend to stick togather especially when I get up from sleep (the usual symptom when you get conjunctivitis). I promptly left my contact lenses routine completely, in fear that it could worsen the symptom.

Last week I went to see the opthalmologist and after he did a test, it was a problem of tears production and probably from the GVHD effect. Now I have go back to my glasses and intermittently put eye drops to make me feel more comfortable.

The hematologist had told me before that I will have some limited chronic GVHD and to some extent will affect the quality of life. I guess, it is unpredictable when it come to how long that I will have this problem. Though, I am still not as bad since I can do most of the things that I used to do. Yeah, I have tried doing surgery recently and it was fine, except for some mild tremors.

the meet up again

before 'makan' time

before 'serious business' meeting

Pat has gone back to her country. I must thank for her visit and support in making every MaxFamily missions success!!

my Seattle friend visit

Today, I just fetched my good friend from Seattle. She is the Head of the Max Foundation and happened to be so close to us since her last visit during CML last event in Malacca. As she always promised, she flew all the way to meet us again, bringing more enlightening spirits for us to be as passionate as before, when the support group was first formed. I guess, I must get back to my support group as soon as possible and it is not that easy since I do not know where exactly to start. However, after we had a 'short brain storming session', I have a lot of reasons to speed up and gets going!