April 14, 2006

14.04.2006

Recount of yesterday

I was probably my most alert yesterday since I started chemotherapy, which ironically meant I neglected to update my diary since I spent most of it doing "normal" net stuff :-P Been reading a lot on bone marrow transplants and the associated complications, specifically GVHD since a BMT is in my near future due to me being diagnosed ph+ positive ALL. How Gleevec will help me is still bit of an unknown at this point, but all signs are positive.

It would seem the biggest hurdle to my bone marrow is one of chance - whether or not I can find a suitable bone marrow donor. Unlike the lottery, whether or not I am a winner has already been decided with very little "wiggle" room - either the international bone marrow registries contains a donor who match or they don't, a result which takes a few months to find out.

Now the largest bone marrow registries are understandably in Western Countries where the costs of performing tissue typing is transparent. In Australia for example it costs nothing for some one have their tissue typed and stored through the Red Cross. So the consequence is that a majority of donors are Caucasians. It is a bit ironic, but Asians are the ethic minority for once :-P

Now it is entirely possible for a donor who is a perfect match for me to come from anywhere - but there is a naturally strong correlation between race and compatibility. If the international registries, which includes the Taiwan registry - the largest Asian registry and 3rd largest in the world- doesn't find a match, I still have a little wiggle room in the form of still developing China bone marrow registry. It costs 65USD to tissue type a single person in China. 65USD might not seem like a lot, but it is the equivalent of a month's wage to an average Chinese. The Chinese government provides the bone marrow registry centres with a yearly quota of only 3000 donors - that is, only enough money per year to tissue type 3000 blood samples, even if there is a million people lined up willing to participate. It is planned that if the need arise, my parents will attempt to fund as many additional tissue typing in China as they can, either out of pocket or via donation drives here with in Australia to attempt to find a donor for me.

I am going to try and start a donor drive at University of Sydney, particularly amongst over sea students from Asian countries. Asians are at a sever disadvantage when it comes to registered bone marrow donors and if they are here studying, they can be tissue typed where the only cost to them is a bit of time.

Time 8:58am

Nurse Julie just took my blood sample. Not sure if doctors will let me have day leave today. Talked to acute online, a UNSW student. We are going to try and organise an massive student donor drive, especially amongst the over sea students who can not so easily get tissue typed in their own country.

To this end I will get Emma to scan my best picture, and I shall exercise some of my creativity in a bit of self-promotion :-P The ultimate goal is organise a big bone marrow party between all the major Universities where as a student I have the most influence, where people are rewarded in food or prizes for becoming registered donors. Every new donor makes a difference!

Time 3:35pm

Blood results are in! Been neglecting to post them lately, so here are the last few days' results:

12.4.2006

• wcc 1
• Hb 101
• Plt 52

13.4.2006

• wcc 1.4
• Hb 110
• Plt 60

14.4.2006

• wcc 2
• Hb 116
• Plt 62

The doctor said that those levels are holding, it means my bone marrow are working somewhat which is good because it means leukemia isn't affecting me as much. If treatment wasn't going well. This mean I shave today :-)

Work is progressing on the donor drive front, I am slowly recruiting people. A plan is being formed...