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

Absence seizure

Jason started to taper down the prednisone in middle of September.  Only this time, doctors decided to do “chronic taper”; which means… it will take long.  The decision was made because of the last taper didn’t work too well for him.   GVHD came back too soon.  This time, he is alternating 100mg and 20mg every other day for a few weeks, and 100mg and 10mg… and so on until February (at this point).

From previous experiences of prednisone, I thought he would be jumpy, obnoxious and hyper.  Not this time. This high and low prednisone has been making him more tired and in pain.  And this is what happened on last Wednesday.

He didn’t sleep well that night.  He had chills and mild fever (37.8F).  He came downstairs by 8am, got his newspaper, and started to read.  He said he was feeling better.   About 8:15 am, suddenly he said “I feel queasy”.   I was hurrying up making lunch for kids for school and just looked up to see what he was going to do.   Jason was still sitting on the chair, gazing straight forward.  I thought he was thinking if he was going to throw up.  I asked him if he was going to do it.  He didn’t say a word.  I looked up again, and asked him if he was OK.  This time, his face was pale… I told him he didn’t look good.  He didn’t say anything.  Finally I realized he wasn’t there.  It happens a lot that he just doesn’t hear me (husband & wife thing; as most of married people would know), but this was not it.  I ran to him and tried to lean him toward me, but he was… stiff.  I grabbed him by his head with my arm (like head-lock), and yelled at Ty to go get help.  He ran to the paper towels in the kitchen; he must thought Jason had thrown up.  No, No!!!  I told Ty to go get help next door (I didn't think I could call 911 if Jason fell on me).   As Ty was running toward the door, Jason came back and asked me where Ty was going.   I helped Jason walked to the couch, and he lay down.  Our kind neighbor came right over, and made sure we were OK. 

We had a doctor’s appointment the following day.  The doctor suspected it might have been a type of “Absence seizure”.  He ruled out it was not a heart attack or stroke because if it was one of them, he would have fell off from the chair or things would have came out from him (anything you can imagine).  Jason had MRI this week and will have EEG next week.  MRI came back normal.  We don’t know what caused it.   Jason is not allowed to drive for a while- just to be safe.  I don’t think he’s had another episode.  He is still dealing with his ups and downs with prednisone.  Doctor told me to watch him closely, and call them immediately if he is “punky”.  Oh, Punky again… this will be another post.

Next week, we have series of 1 year transplant check ups and reviews; bone marrow biopsy, pulmonary function test (I’ll try to video tape this one- it’s the funniest clinical test you’ve ever seen), oral exam, X-ray and immunization shots, etc.      

Thanks for your support.

Love,

Mayumi

August – Another GVHD

 Here is what was going on end of August 2012.

I hope you’ve read the July update post about “super muscle” GVHD.  It went away within 24 hrs. and thanks to steroid (prednisone), Jason had so much energy that he even started to run again.  He was feeling really good again, and tapering down of the steroid went really quick and well.

He had great couple of weeks, and (of course) GVHD came back.  This time, both arms and legs were swollen, his liver function level was down and white blood cell (not leukemia cell) count was up.  Doctors put him back on steroid again, hoping he would react the same way (quickly) as the previous GVHD, but it didn’t. Redness and the pain increased, and it seemed like it was going to the neck and also his range of upper body movement was getting bad.  They increased the steroid dosage and added immunosuppression medication (tacrolimus).  Because of immunosuppression med, he had to get back on two kids of antibiotics, high blood pressure med and restriction on activities and foods, etc. 

It took a few weeks to get back normal size arms and blood levels this time.  But what bothered him the most was restrictions on activities.  He had to stop running.  He was enjoying running, feeling good, and was excited to go back to work soon. 

Jason started to taper down the steroid much slower this time.  It will be a few months or more until he will be done with steroid.   Doctors are monitoring Jason closely this time, and we are back to see doctors every week... 

Love,

Mayumi

July - New GVHD (Super Muscle)

I know it's almost the end of September, but here is some update from JULY 2012...

Jason had been great for the last few months.  He had energy, blood work had been great and he hadn’t felt that good for a long time.   We were excited that he could possibly go back to work around September.   

The first part of July (it’s been always the 4^th of July weekend that something happens); Jason’s left bicep was slightly bigger and tight.  It got pink and the swelling was reaching towards his forearm and wrist.  We called our doctor at Seattle Cancer Care Alliance, and she was concerned that it could be blood clots, so Jason was sent to the Emergency room.  The ER doctor just looked and checked Jason’s arm by hand (no further exam), and thought it was just some kind of skin infection.  The ER doctor just gave Jason antibiotic and told us to wait for a few days to go away.

Jason had appointment at SCCA a few days later anyway, so we waited.  The symptoms did NOT go away, and got even worse.  At the appointment, doctors at SCCA quickly sent Jason for more blood work and ultrasound to double check there were no clots in his arm. The ultrasound technician was surprised (almost amused) to see what was going on with his arm.  No blood clots, but it looked like extra set of muscle was growing there – super muscle!  (Boys were excited that Daddy might turn into Hulk or Captain America!)  The doctors determined from the blood work result and ultrasound, that the tissues surrounding his muscle was developing GVHD (Grapht Verses Host Disease –check the previous post about GVHD).  He was giving steroid to treat GVHD, and the super muscle quickly shrunk to normal size within 24 hrs.

I’ll try to post more updates before we celebrate his 1 year new birthday. I was told by many people whom I thought they didn’t even know about this blog that enjoyed reading this.  Thanks for caring about Jason and the family.

Love, 

Mayumi

8 months since the transplant

I wrote this post back in June.  Somehow, I forgot to post.  So, here it is goes, back from June 2012...


No news is a good news, right?  I have not posted much about Jason since... February.    It has been 8 months since he had his bone marrow transplant by a non related donor.

Our doctor visits have been once a month now.  His blood levels are improving (still not normal level yet), Dr. Petersdorf looks at the chart without any excitement, he is rather excited to talk to Tommy about preschooler's life is about and to find out where we are going to get lunch after the appointment.  Jason got off Tacrolimus (the main medication to privent GVHD) about a month ago.  Everything is going well.

Our typical questions are what Jason can do and can't do.  He feels normal, and sometimes it's hard to remember that he still has restrictions on what he can do and can not.  He started to drive Tommy to preschool and back,  goes watch Ty's little league baseball games, goes out to lunches with friends, loves to go Yoga, etc. I ask every appointment if Jason can start doing yard work... still "NO".  Buffet, pets, crowded closed places- No.  Work... soon.

We are excited for this summer. Hopefully, we have a great summer, and Jason will go back to work in the fall.

Love,
Mayumi