Hero and Miracle Workers

A hero saves the world not for his fame or his own pride.  A hero does righteous actions to save others.  Does he brag about his work? No, he never does.  He is simply happy that others are saved and make sure that they go on with their lives.  In the end, the hero and the people become friends.  That’s exactly what we saw in Jeff, and we became friends.  He is a true hero to us.

Also, we had an opportunity to meet the Miracle Workers, the people who work at the Be The Match.   I’ve never realized that so much work had to put in to find a donor for a patient.  To witness the process and things what they were trying to accomplish as an organization, I truly felt it was works of miracle. When we were given the company tour by Jeff after the meeting, the Miracle Workers were as joyful as the hero to see us -the miracle that they had produced.  Most of them had beautiful beams of smiles, some with tears with emotion, as we walked through the office. 

We were overwhelmed by everything that happened the day we met the Hero and the Miracle workers.  I asked Ty what was his favorite thing during the trip, and he said it was meeting with Jeff, despite of the Twins game, Mall of America, Mississippi River, Nickelodeon Land, and the Lego store. Yes, indeed.

I still feel like I am recovering from a lightning strike, so I will write more detail about the meeting with Jeff and his AMAZING family (that is another miracle story!).  

Love,
Mayumi

 

A to O

I have not written Jason’s health improvement for a while.  He is doing great.  GVHD has not came back mainly because of ECP that he has been doing for last 7 months.  (Please see previous posts about GVHD and ECP)  He is still taking 20+ (or 30+? I lost track of the numbers) medications daily to keep him stable and to keep on target to reduce most of the medications.  Everything is going well.

We know that his new bone marrow is keeping him alive, healthy and leukemia free.  Basically it took over Jason’s inside.  One thing I forgot to mention another incredible thing about bone marrow transplant. 

His blood type changed from A to O.  We don’t know exactly when it happened (if you are interested in, I’m sure I can check), but Jason asked a nurse several months ago during his treatment what his blood type was to see if it was changed… not A, it was O.

So here is something you might think it’s funny.  I was grown up in Japan, and mostly among teenagers, you asked what your blood type was when you met others, so you knew EXACTLLY what other’s personality was like(does any other culture do this?).  And this is how I remember… something like this:
A – Neat freak, sensitive, obedient
B- Free spirits, artistic

O- Calm, easy going

AB – split personality, unpredictable

So, my question is…  Is Jason’s personality going to change or already has been changed?  Well, we know our personalities can not be categorized by just 4 blood types, but what do we know what bone marrow transplant would do?!  

Love,

Mayumi

Going to meet the donor

Ever since (since October 2011) Jason received the bone marrow from someone who we’ve never met, it has been our wish to meet him someday.  Several months have past since our first contact with Jeffrey – the donor, and he regularly checks in with Jason to see how his treatments are going and his well being.  Could anyone be kinder and sweeter than Jeffrey?!  A part of a conversation has been how and when we are going to meet; he is in Minnesota, we are in Washington.

Jeffrey works for the organization, Be The Match, national marrow donor program.  The whole company is excited for Jason’s well recovery and Jeffrey.  The company found out that we are trying to figure out how and when we are going to meet, and they generously offered us the whole enchilada!!!  The meeting will take place in Minnesota in August and the whole family can meet Jeffery who gave us a chance to keep moving forward in our life and the company which made it possible to match Jeffrey and Jason – one in a million match. 

This will be exciting and amazing experiences for Jason and me, and especially for the boys.  Ty saw and felt the marrow (of course it was in a bag) on the night of October 7, 2011, and knows how significant it is for Daddy’s recovery because of those bags of marrow.  Tommy is excited because he can go on an airplane, stay at a hotel, and there is a big Lego store in Minnesota - Oh, Tommy knows Daddy is getting better, too J

Thanks Jeffrey and Be The Match.

Love,

Mayumi

Relay for Life

My husband is a leukemia survivor.  My father is a kidney cancer survivor.  I have friends who are fighting cancer right now.  I have friends who lost battles.    Our neighbor who have been a great support for us the last year and a half is a team captain for the team “Los Panqueques”  for Relay for Life at East Lake High School this Saturday , May 18 @12:00.  Jason will be walking for the survivors lap.  We are honored to be a part of the team this year to support the cancer society.

Love,
Mayumi

http://main.acsevents.org/site/TR?fr_id=48435&pg=team&team_id=1414644

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