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