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

Another transplant

My computer had been sick. It had been super slow, and it got to a point I couldn't tell if it was super super slow or freezing.  I finally had a opportunity to take it to our friend who knows a lot about computer.

The diagnose was more likely that the hard drive was damaged.  I thought it might be the end of my computer's life, but the computer doctor said he could try to put a new hard drive.The hard drive was donated by the computer doctor who used to be a CML patient -how ironic!

My computer had a hard drive transplant, and now it's working like a brand new computer!

We love transplant.
Please resister be a bone marrow donor!
http://marrow.org/Home.aspx

Love,

Mayumi

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

Tired, sleepy... Punky?

Hickman line is out, and we had big day 100. Things were going well.


Jason has been really tired for last two weeks. It seems like he can not get enough sleep, not enough energy (makes him grumpy), but he doesn't have any other problems.

We had a meeting with our new oncologist last week, and told him about it. The doctor said it is normal to have ups and downs. As long as he doesn't have any problems; fever, loss of appetite, skin rash, etc, we should not be too worried about it.

He wakes up 10am, and takes a nap in the afternoon, and still goes to bed by 10pm.
Hope he will get his energy back soon (so he can help me around the house!).

Love,
Mayumi

Donor register No. 4!

My good friend Shino registered as a bone marrow donor! Thanks Shino!!!

She went to the website (below) and it took a little long to go through all questions to get registered, but she did. Also, she said it was free.


Hope you find a time and courage to register as a bone marrow donor!
Let me know when you do it, so I can add to my counter :)

http://marrow.org/Home.aspx

It is getting closer to my goal- 100! (right?!)




Love,
Mayumi

Hickman line - Out (part 2)

We arrived at the SCCA with excitement. I told Ty to video tape the whole scene with his camera, and I brought mine to take some pictures.

The usual exam room was crowed with four of us. A Canadian PA came in and did usual check up on Jason. (She had such a cute accent; east coast/French-ish, with "eh" on almost every end of the sentence. I had to ask her where she was from, and she said she was from Canada.) She said that the line was a little bit different from the ones she was used to in Canada "eh", so she was going to have someone from SCCA to pull it out "eh".

So, another PA came in - a cute Indian PA; not native American Indians, but from India, dark skin, beautiful big black eyes with long eye lushes. Her english was perfect though. I had to ask again where she was from. There are large Indian population in Sammamish, and usually they have quite strong accent. I think their accent is... soothing... like Yoga. Anyway, she was from Oregon.

She started with some explanations; she had done this procedure before- many times, sometimes it gets hard to pull out or break, in that case, Jason would be sent to operation immediately, etc. She took out the dressing (a tape securing the line), cleaned the line and skin, and snipped off some stitches that was holding the line and the skin.



The Indian PA tried several times to see if it would start moving. She finally gave up, and said she would bring someone else to try for the last time before they send Jason down to operation. She said he was an experienced and strong doctor. The word "STRONG" scared Jason; he didn't look too happy. It was hurting him by the little Indian lady doctor, and now a strong male doctor was really yank it out.

As soon as the male doctor came in, Jason's smile came back. The doctor was one of the favorite doctors he had while he was at UW Medical Center. I had never met him, but I heard about him a lot; the Burger Master doctor. There is a burger restaurant in Seattle called Burger Master, and the doc was highly recommending Jason to go when he got better.

The exam room was REALLY crowded. The Canadian PA, Indian/Oregonian PA, the Burger Master doctor, and us. They did quick update, and the Burger Master doctor told me to come behind him to get better video shot of the main event. Also, he told Jason to turn his head to side, take a deep breath, and quick few yank... the line started to move! It was like a magician pulling a string of flags out of his finger. Within a few second, the whole line came out, and the Burger Master doctor put his hands on Jason's chest where the line was coming out to put pressure on. A few minutes later, they put the band-aid on, and the doc told us that we could go Burger Master anytime because Jason had been recovering really well.

Also, the Burger Master doctor asked us if we wanted to take the line home. Of course "yes". He put it in a urine sample bottle, and gave it to Ty.


Well, I tried to upload the video, but it didn't work. I'll try again later.

Thanks for reading the blog.

Love,
Mayumi

Hickman line - OUT! (part 1)

Jason had a line coming out from his chest since end of September (3 months). It's called Hickman line - please see "Hickman line" in October 2011 post. One of our questions to the doctor & nurse was when Hickman line will be taken out. They said it will be pulled out around Day 100.

Well, it was a quite a procedure to put it in. I hope you saw the X-ray picture on the Hickman line post, as you can see, it goes right by the heart-connected to a major blood vessel, and at least a foot long in Jason's body. It was handy when he had to have blood drawn and IV everyday, but after things started to slow down, it was pain in a butt (in Jason's word) to maintain it. He had to flush the line once a day, he had to rap and cover the line when he took shower, and just think rubbery tube hanging out from your chest... not too exciting. Also, we were told that if it breaks, blood will gash out-must be careful. We were VERY careful all the time.

We were waiting to see on the weekly schedule from the hospital when the procedure would happen. I was thinking that I had to find a baby sitter for the day, what to do while I wait during the procedure, etc. But we didn't see it on the schedule, so we asked again when that would happen. The nurse said maybe next week or tomorrow if we wanted. What?! We didn't see it on the schedule... where and how do you do it?


We thought doctors and nurses were kidding when they said "pull it or / yank it out". We were laughing "yes.... you yank it out... funny... " . But it was not funny when we realized they were really going to yank it out in the regular examin room. The nurse said "it comes out easy and we put pressure on it for a little bit, put band-aid on it, and done!".


The nurse must saw a fear in my face, and she said "Don't worry, Mayumi. We've done many times. Only 5% goes down to operation because the line breaks in the middle, we'll make sure a surgeon will be in the hospital". Uh...OK.... what happens if the line breaks?! Gush of blood or blood spraying all over the clinic from the tube just like water from a yard hose goes wild?


Jason was excited/nervous to get the line out. He decided to do it the next day. It was Wednesday - half day school for Ty. We asked Ty if he wanted to come see it. He nervously said "yes...". I was proud of him. He has been with Jason for major events from the beginning of the BMT. He had to come see it. Since Ty was coming, Tommy had no choice. It would be a big family event. "Yank out Daddy's Hickman line!"



To Be Continued...


Love,
Mayumi

Day 100

Last couple of weeks Ty has been doing the count down for Dad's big Day 100.
Tomorrow (Jan 15, 2012) is Day 100. I'm not sure if we've mentioned before how significant this Day 100 is.

Bone marrow transplant (from non related donor) has a 10-15% mortality, 15-30% sever GVHD, 60% acute GVHD. This was the reason we were scared of having this procedure done. The chance of getting rid of leukemia was over 90% in Jason's case, but it was still a high risk. Acute GVHD happens within 100 days from the transplant. The new marrow reject the body, and it causes serious problems - sometimes fatal.

After this period, if GVHD happens, this is called chronic GVHD (acute still could happen). This is usually not fatal to the patients, and is chronic symptoms that could be treated- skin rash, nail indentation, watery or dry eyes, dry mouth, etc.

Jason had acute GVHD around day 20 in GI area. He was miserable that time, but as soon as the treatment started, he started to feel better. Also, a few weeks ago, around day 80, he had bone marrow and skin biopsy. Skin biopsy came back positive for GVHD. Doctors were not too concerned about this one. We didn't even notice if his skin had any changes. His skin still looks abnormal from the chemo - dark spots and discoloration, etc. We were told to watch red rash for GVHD, but we didn't see anything red...

We felt like a time bomb could go on any time, but not any more. Ty was really excited that tomorrow is Day 100. He said " I'm so happy for Dad!"... me too.

Jason will be discharged from transplant clinic at Seattle Cancer Care Alliance (SCCA) next week, and be with a post transplant oncologist at SCCA. During one of the last clinic visits, I said to a nurse " I thought the 100 days would be really hard and long, but it came easier and faster than I thought". The nurse said "Jason is one of the VERY lucky guys that didn't have to go through too much. You should be grateful".

We are grateful. Jason is feeling great. He says he has not felt this good since he got diagnosed with CML 2 1/2 years ago. Still long way to a full recovery, but he is definitely keeping his Rock Star status.

Thanks for your kind words, help and prayers.

Love,
Mayumi