Contact with the donor -Jeffrey

After a year from the bone marrow transplant, we have a chance to contact the donor.  We were waiting to hear.  Evidently, he was waiting to hear from us, too.  This wonderful donor's name is Jeffrey from Minnesota.

Jeffry sent Jason e-mail earlier this year,  and the following week, he called us!
He works for Be The Match - bone marrow registry organization! As much as we were excited to get to know him, he was happy to know Jason was doing well. What a nice man!!!

He said even though he works for the Be The Match, not everyone in the company gets to be a donor (I think the odds to be a donor is 1 in 1000).  A lot of people were happy that Jeffry and Jason got to talk finally. 

What a way to give a chance to live!  I am thankful for Jeffry because Jason is getting better and leukemia free because of Jeffry, and our boys will have a father for a long time.  I hope we get to meet him and thank him in person someday. 

Here is the web site for Be The Match.  If you have not register as a donor, here is the way you can save a life!
 http://marrow.org/Home.aspx

Love,
Mayumi

ECP

Right after the Christmas (2012), Jason started a new therapy called ECP to fight GVHD.  Here is  an article from Stanford Medical Center web site:

"Photopheresis (ECP) is a type of medical therapy that can be used in treating patients with problems associated with cutaneous (skin) T-cell lymphoma (CTCL) such as mycosis fungoides (MF) or Sezary syndrome. ECP is also used to treat conditions including graft-versus-host disease (GVHD) and organ transplant rejection. "

Jason goes to the therapy twice a week, every other week.  When patients have a port (like Hickman line in the chest), they can do ECP through the port, but Jason got rid of Hickman Like a while ago, he gets a big fat needle in his arm, and can't move for 2-3 hours.  The machine takes out 10% of his blood, and machine does the miracle job.

Every time he tried to taper down steroid last fall /winter, GVHD came back. But this time with ECP, it is keeping GVHD away from Jason so far.  Also, Jason has not had major side effect from the treatment (he gets tired after ECP).  He will continue this treatment for a while even after he goes back to work. 

Thanks for your supports and prayers.

Love,
Mayumi

 

Not Fun Winter

I have a lot of things to catch up with.  It's been almost 6 months since the last post!

Jason is doing great.  One year check up went well, and he is officially Leukemia free!!!
Though, he has been fighting GVHD which started last July.  Jason was expected to go back to work last October, but it got delayed also.  After the "passed out" event, we met with neurologist, and we determined that it was not serious.  Only bad news from the neurologist was he was not allowed to drive for 6 month (by WA law)!!!

During the winter, we had a couple of emergency trips to UW med center (because of fever), the number of medications went up (he was taking only 3 pills during the summer, but now 30+ pills a day again),  plus he caught flue few times.  Steroid was making him bouncy and his face swelled up (moon face). 

It was not a fun winter for us. But spring is here in WA now!  And Jason is getting ready to go back to work in May. 

Thanks for your love and support.

Love,
Mayumi