Bone Marrow Donation

I have to snap out of this morose mood that I’ve been in.  Life doesn’t stop just because I have a baby with a terminal condition.  Life goes on.  A good friend of mine reminded me that behind closed doors many people are in pain too.  And I have to remind myself that I shouldn’t be so melodramatic.  So it’s time to think about people other than our nuclear family.

Last Saturday I registered as a bone marrow donor.

My father has taught me the significance of donation since I was a small child.  He made a habit of donating his blood every so often.  In fact, the day before we left Hong Kong to move to the U.S. my father donated his blood as a farewell gesture.  And throughout my life, I’ve always donated my blood whenever there was a drive.

 

More and more these days, just the words “bone marrow” have a heavy significance to me and my family. One of the main reasons is because a bone marrow transplant is the only potential treatment for I-Cell, though highly experimental.  And the latest official conclusion from specialists is that a BMT does not benefit I-Cell patients.  Although my hopes were short lived, I had dreams that we could normalize Nikola’s lysosomal enzyme levels after a BMT transplant.  I understood that preexisting damage is irreversible, but I was hoping that progression of the disease would cease.  However we have decided to forgo the transplant after talking to the I-Cell specialist and other I-Cell parents have who opted for the transplant.  The pain and toll of the procedure outweighed the very small possibility of benefits. 

Now I know we cannot reach for our only potential lifeline.  Niko cannot be saved by a bone marrow transplant.  But if someone else can benefit from a transplant, I’d like to do what I can to help.  I’ve always had that “donor” sticker on my driver’s license (in case something were to happen to me).  It never meant anything to me before.  Now the notion that someone’s life can be saved has a much clearer picture.  It’s not just a sticker on my license.  And I can donate more than just blood without having to croak.  

A week ago, I learned about a little two-year-old boy who has been diagnosed with a rare form of leukemia.  He is the nephew of a friend of mine from high school.  His only chance at life is to find a match for a bone marrow transplant.  With a BMT, ethnicity matters. And there is such a shortage of Chinese (or Asian) donors.  So I decided to register.  If I’m not a match for this boy, then my sample will be kept on the registry until I’m 62 years old.  I hope he finds a match.  

Niko kept me company (no surprise) while I registered.  

4 months