My Project

It doesn't happen all the time at our house to watch 5 o'clock local news. Jason yelled at me "Come watch!".

They were showing a story about a man who received a bone marrow from a lady across the ocean, and met each other for the first time, 5 years after his transplant (and Dr. Hootie was one of Jason's doctors at UW). This is the link to the story:
Pasco man cured of leukemia reunites with medical saviors

Isn't it wonderful? To save someone? To live because of someone's gift?

I registered myself as a donor while Jason was receiving his bone marrow at the hospital. The chance of being picked as a donor is 1 in 1000. I felt like I bought a lottery ticket. I'm hoping I would be someone's match. Jason is extremely lucky to find a PERFECT match so quickly. There are so many people waiting to find their match.

Seattle Cancer Care Alliance has pediatric patients too, so we often see very young patients. It absolutely breaks my heart when I see a little child with no hair walking around in the hospital, hoping that he/she has a donor. One time I over heard a mom with a little boy (1-2 years old) whose hair was half fallen, saying that they are waiting for a donor for over a year. I was screaming in my mind "take mine!!!"

It's funny that when I have something on my mind, I keep finding things to inspire more about it; a movie about a lady who blogs, a magazine article about a website for organizing charity, a local news about bone marrow transplant... one more thing, my husband is a bone marrow recipient! What's on my mind?

I want 100 people to register as bone marrow donors from this blog by Jason's 1 year birthday (10/7).

I can register once, my bone marrow may be good for just one person, maybe no one might need my marrow. But I know so many people are waiting for it. But you, if you have not registered yet, could be a donor. Of course, there are a lot to concerns if you are actually chosen as a donor, and I do respect your worries and concerns. If you are not in good health or not in the applicable age group (I think it was between 18-65), you may not be able to register. But those who can not register yourself as a donor, can help someone else to register (because you have to pay to register).

Well, how am I going to do it? I don't know yet (I'm going check out the website from the magazine article). I don't even think 100 people read this blog. I would love to hear your idea how to do it. Do you think we can do it?!

Meanwhile, I would like to count myself as 1 of 100 donor from this blog.
(If you are already registered, please let me know, I'll count you in!)

Love,
Mayumi

Day 44 - Things to look forward to

We had our WEEKLY clinic visit. Yes, I can't believe it's once a week now!

Jason is feeling good. Things are going almost too good. But what can he do, and what he CAN'T do? It was one of our topics to discuss with doctors and nurses today. I wrote about making him do some chores in the previous post, so here is the list:

• Laundry - No touching dirty laundry. OK to fold and put away clean laundry.


• Dishes - No washing. OK to put away clean dishes.


• Vacuum - NO, too dusty and too heavy


• Dusting - No, too dusty!


• Wipe surface -Can't use cleaning supplies, may cause reaction from chemicals


• Raking leaves/yard work - No


• Prepare Tax- Yes


• Help Ty's home work - Yes


• Grocery shopping - OK if stores are not busy


• Address & Stamp Christmas Cards - Yes


• Cooking - OK, but no touching raw meat

Jason was really excited that he can go to stores & restaurants - even movies (if they are not crowded with people). He already got OK to drive the previous week, so I sent him to Ace Hardware Store to buy some light bulbs today, and he was grinning from ear to ear.

A few other things we discussed about things to look forward to was:

• When is the Hickman Line comes out? Maybe after the Day 100.


• Does he need to get immunization shots? Starting around 1 year after the transplant.


• Bone Marrow Biopsy result? Everything looks great!


• When will Jason be dismissed from the transplant clinic? Maybe around Day 100.

We are almost half way from the big Day 100, and there are many things to look forward to. Trying not to get too excited, but hope he will keep doing well.

Love,

Mayumi

Do you feel punky?

I don't even know how to spell "punky". This new word "punky" has been a key word for us for the last few weeks.

Jason has been feeling great since he started the GVHD treatment with steroid and other medications. He started to eat normal, I don't have to force him to eat any more. He has been going for a short walk when it's not raining, he even offered to do some house chores for me (I had to think SAFE house chores for him-he still have a lot of regulation of what he can do).

So far so good. Doctors and nurses are very happy with his incredible progress, and even cut back on clinic visits (we only see doctors once a week, still have to go for blood drawn twice a week). But they always tell us "If you feel punky, call us ASAP". What is the symptoms of "punky"? Is it even a medical term? Does "hyper" cause "punky" from steroid side effect? From sound of it, some images of punk rock concerts came to my mind ..."punk", "funky", "fun", "jumpy". But I don't think he will turn into a punk-rocker anytime soon (doctors won't be concerned about it either). Also, I was glad to know that I was not the only one who asks what punky means.

What they want us to watch is sudden bad changes-not feeling good, tired, vomiting, fever, etc... Since my new vocabulary "punky" was added in my brain, instead of "how are you feeling today?", I say "Do you feel punky?" or "Are you punky?".

He has not felt "punky" yet, but one of the steroid side effect "hyper" has been keeping him from sleeping. He will be off the steroid in a few weeks, and I hope he will start sleeping well then.

Thank you all for your prayers and comments.

Love,
Mayumi

GVHD

Here is the definition of GVHD from Wikipedia:
"Graft-versus-host disease (GVHD) is a common complication after a stem cell transplant or bone marrow transplant from another person (an allogeneic transplant). Immune cells (white blood cells) in the donated marrow or stem cells (the graft) recognize the recipient (the host) as "foreign". The transplanted immune cells then attack the host's body cells."

After a week + few days of miserable times, Dr.S. (transplant doctor) & Dr. M. (GI doctor)decided that Jason's symptoms (loss of appetite, nausea, fatigue, etc) were caused by mild case of GVHD in stomach area.

Last Friday (11/4), he started on steroid by IV shot to treat GVHD. Steroid tells the new immune cells to "chill out" a little so it doesn't attack Jason's stomach. But this means Jason's immune system is even lower now.

Just like a magic, all of the symptoms disappeared! Plus a common side affect of steroid "hyper" came along too. Luckily, after two days of IV shots, he has moved onto oral steroid which does not make him too hyper. Can you imagine my roller coaster ride with Jason?! He was so tired, sick, miserable, and all of the sudden, he was happy, energetic, hyper.

This ups and downs will continue for a while. Some people say little GVHD is OK (it means the graft is settling in the body), but if you don't treat it, it could be deadly. We are grateful that doctors took a proper action to treat it. It doesn't mean he won't get GVHD anymore. We still have to keep close eyes on any sudden changes in him.

Another good news is his blood counts are doing well, and we are now schedule to go the clinic only twice a week!

Thanks for your supports & prayers.

Love,
Mayumi

Chemo Damages

Here are some pictures of Jason- see what Chemo did to him!


Not much hair grows anymore. Even his thick eye brows are thinned. He looks like he got black eyes (I didn't do it!) Lost 25lb. He can smile (sometimes).

Sorry ladies, it's his armpit. Chemo kills lots of cells, including armpit skins!


Tommy thinks Daddy's head is a good place to put Star Wars stickers.

Love,
Mayumi

Day 27 - Bone Marrow Biopsy

Jason had bone marrow biopsy today (Nov.4th). They are scheduled to for around day 25 & 85. The main reasons for the biopsy today were to see if the graft was going well and also to see if cancer cells were under control. I will report the test result in the future post when we get it.

It was his 5th bone marrow biopsy. Very brave Jason had done the first three biopsies without sedation. As you know, the marrow is IN the bone, which means a needle has to break through his bone to collect it. It is really painful, as you can imagine... Finally the last procedure on his birthday (9/15), I convinced Jason to do it with sedation-just because it was his birthday, and he had agreed that would be the only way to do it (of course!!!) - just like ( I always like to put my experiences in his situation) having a baby with epidural. I know some people choose to have baby natural way, but here we are with the modern medical technology to help you go through anything as comfortable as you can, take it!

The procedure went really well, in fact, it didn't hurt him at all, or I should say... he didn't care or he was in a happy place. He is still wondering if they got his marrow out. I got some pictures to proof to Jason and you.

These are the equipments. Few shots to numb the area, the blue one looks like a wine opener is the one to dig into the bone- you really twist and push into his bone.






The first shot always hurt, but he was already in a happy place, he didn't even flinch... Actually, he was mumbling about he wanted ice cream when it was over.




Here we go... She is digging into the bone.


When he had procedures without seduction, he was screaming when a doctor pulled the marrow out (I don't know why-it looks like just thick blood). But today, he didn't even move.


Just put a nice pressure for a few minutes, and put bandage on... Done!



The lab person was working side by side with the nurse to make slides with his marrow.



I hope this is not too "graphic" to you.
Thanks.

Love,
Mayumi