Just a cold or NOT just a cold...

The Lazymaneosis turned out to be a cold-shame on me for giving him a wrong diagnose! Tommy started to have a runny nose, and we thought he got it from Jason. So, we didn't do much about it. A few days later, I started have a runny nose...thinking it was not from Jason's cold! By then, Jason's cough got really REALLY bad. Tommy and I got over the cough in a few days, but Jason dragged his for a while.

He just doesn't have enough immune system to fight over a common cold. In fact, he still has the same Rhino virus since October!

Many people ask us when he can be back to normal (go back to work, eat normal foods, be in a crowd, etc) since he passed the big Day 100. The answer is still not for a while. His blood count is normal for BMT patient, but NOT normal compare to me-healthy person.

When we go to our weekly clinic, the nurse gives us blood work summary. To be honest with you, I can't understand more than half of what it means. I asked PA Pam how to read these codes and numbers. She gave me little more detailed papers, and told me to study for the next appointment - she is going to quiz me!

I'm hoping one of these days, I will post his blood counts from the time of transplant to the recent blood work. I know some of them are dramatic (from 0 to thousands).

His cough is slowly going away. He started sleep little better. His hair is not growing yet, but his mustache is trying to come back and they are gray!

Thanks for your comments. I love hearing from you...kind words and "update your damn blog!".


Love,
Mayumi

More donor!

I would like to add two more to my donor register count -now total 6! Friends of ours, they are sisters, lost their uncle last year because of cancer.

We feel extremely fortunate that Jason was able to find a perfect match. Many people loose their battle while they are waiting for their match. Sometimes people have to take a chance to receive not so perfect match marrow, and have difficult time to recover or even death.


There are a lot of opportunities and different ways for us to make difference in someone else's life. I am glad that I registered as a borne marrow donor; maybe I could save or give hope to someone.


You can register at the website below. The process is easy. After answer some questions online, they will mail you a kit (cotton swabs and return envelops), and simply you send your sample (tissues inside of your mouth) back to the donor register organization.
http://marrow.org/Home.aspx


Donor count 6!

Thanks for your help and support.

Love,
Mayumi

Lazymaneosis

Jason's condition has not changed much for a while. He is tired and sleeps a lot.
We've discussed about our concerns at our weekly doctor's visit, but the doctor has not been too worried. His blood work is great, no other symptoms. From doctor's view, Jason is still doing great.

Well, from my point of view... I don't think he is doing too well. The first couple of weeks since he started to feel exhausted, I felt bad. I was worried that something bad was happening. I was making sure he was taking his temperature daily (twice), eating well, sleeping good, no chores, etc. No matter what he ate, how much he slept, he was tired and grumpy.

After a few weeks of this, I finally figured out his problem... "Lazymaneosis" (in Japanese ぐうたら病）。You must think I am the meanest wife ever. Her husband just had a bone marrow transplant 4 months ago, and calling him lazy!

I told Jason " I wonder if you are having 'Lazymaneosis'", and he started to laugh, and he thought I may be right (I'm always right!). Since then, he has been trying a little harder. He is down to one nap a day. He does a little thing every day; goes for a walk or takes Tommy to preschool or goes lunch with me. Just these little things exhaust him, but I think it's helping him-he is in better mood.

Lazymaneosis is in treatment, but his fatigue & physical weakness continue. The doctor encourage him to continue daily exercises (walk, yoga, etc) so he can get his strength back. He is in the right track to be "normal" in the near future.

Thanks for your prayers and kind words.

Love,
Mayumi