I hope you had a good Christmas. We had our first Christmas in Seattle, and it was great. Let me share one of our special memories of this Christmas.
We received a phone call from the hospital on 12/23. Jason was excited and saying "I didn't know we could do that", "I'll pick it up tomorrow" etc... I was wondering what was going on. He had blood drawn earlier on that day, and his blood levels had been unstable for the last week, so I was hoping nothing serious was going on. But he sounded happy and excited...
After the short phone conversation, Jason told me "they have a card from the donor!". What a great surprise right before Christmas! It was 4:15 pm, the clinic office was closing at 5pm. We looked at each other for a few minutes... "Can we make it?... Let's go!". It usually takes 30 minutes to get there if there is no traffic (you never know how it is). We packed up boys in the car, left the house 4:30, and got there 4:58! Jason ran up to the 6th floor (of course used an elevator) while we waited in the car, and came back with the card!
We opened the card in the car. The front of the card said "Wishing you well" - nice get well card.
Inside, the printed words said:
Hope today finds you feeling better than yesterday, and that you'll feel stronger with each new tomorrow.
And here is what he wrote:
Hello,
I have been thinking about how you are doing and wish you a speedy recovery. I am grateful to have had this opportunity to donate for you.
Take care/get well.
Your Donor
How lucky we are to have such a wonderful donor. Not only he donated his bone marrow, but also he cares about Jason.
We were told that we could not contact the donor until 1 year after the transplant. He did not put his name or contact info. There were only the donor and Jason's ID numbers on the envelope. What we didn't know was we could communicate each other anonymously. We are excited to write him back.
I hope someday we will be able to tell him thank face to face (maybe with a big hug).
Love,
Mayumi
P.S.
Quick updates on Jason:
Today is Day 80, and he is schedule to have bone marrow biopsy tomorrow. Like I mentioned before, his blood levels went down, but came back a little. He's been having blood drawn 3 times last week to keep close eyes on the levels. His feet have been swollen a lot since he started high blood pressure medicine a couple weeks ago. His blood pressure went higher because of steroid- which he has been off for a few weeks.
But over all, he is feeling good. His little whiskers and hair are trying to grow back here and there.
Monday, December 26, 2011
Friday, December 16, 2011
Let's add one more!
My brother, Kenichi, in Japan registered as a bone marrow donor. Big thanks to him to start in Japan. So, here is some info for those who reads this in Japan. Let's add one more in the donor counter 3!
日本の皆様、私の兄がドナー登録をしました。下記のリンクを参照してください!
http://www.jmdp.or.jp/reg/
現在、私のドナーカウンターは３です。年明けには、もう少し情報を載せたり、イベントを考えていこうと思います。
ジェイソンは元気にしています。GVHDに対するステロイド治療も昨日が最後でした。移植から70日目が過ぎたので、残り約1ヶ月、急性GVHDに注意する必要がありますが、医師から混雑してない所なら外出許可が出ているので、たまには買い物に行ったり私と一緒にヨガに行っています。
今回のステロイドは、スポーツ選手が取る筋肉を大きくするタイプとは反対で、かえって筋肉を減らしてしまう副作用があります。そのせいで、もともと細い手足が、いっそう細くなってしまいました。顔やお腹はステロイドの別の副作用で脹らんでいて、薬が終わったので顔とお腹もしぼんでしまうのか見守っています。体重は移植時から約15キロ減りました。
皆さんの祈りと励ましに感謝してます。
真由美でした。
日本の皆様、私の兄がドナー登録をしました。下記のリンクを参照してください!
http://www.jmdp.or.jp/reg/
現在、私のドナーカウンターは３です。年明けには、もう少し情報を載せたり、イベントを考えていこうと思います。
ジェイソンは元気にしています。GVHDに対するステロイド治療も昨日が最後でした。移植から70日目が過ぎたので、残り約1ヶ月、急性GVHDに注意する必要がありますが、医師から混雑してない所なら外出許可が出ているので、たまには買い物に行ったり私と一緒にヨガに行っています。
今回のステロイドは、スポーツ選手が取る筋肉を大きくするタイプとは反対で、かえって筋肉を減らしてしまう副作用があります。そのせいで、もともと細い手足が、いっそう細くなってしまいました。顔やお腹はステロイドの別の副作用で脹らんでいて、薬が終わったので顔とお腹もしぼんでしまうのか見守っています。体重は移植時から約15キロ減りました。
皆さんの祈りと励ましに感謝してます。
真由美でした。
Thursday, December 8, 2011
Donor Register No. 2!
Hooray! We have a donor register No. 2! Thanks to our good friend nurse Beth and her husband Alex!
Well... I proposed my project, and I have not done anything! Thanksgiving and Christmas shopping have been keeping me busy (not too busy taking care of Jason as you know, he is still doing great), but here is a link that Beth suggested: http://marrow.org/Home.aspx
Please check this site, and I hope this will help you to register as a bone marrow donor!
My register count is now 2!
Love,
Mayumi
Monday, December 5, 2011
A Big Thanks
Ok, I know most of you will be disappointed but yes, this is Jason writing this post, not Mayumi. When I originally started this blog, I thought I would be the one doing most of the posting but Mayumi has done such a great job keeping everyone updated and I'm glad she has done all the hard work :)
This is a post I've been wanting to do for a long time and is way overdue. It's been an amazing experience for both Mayumi and I to see all the support from Family, Friends, Co-workers and people we barely know. I thought it would be fun to share a couple of stories of some of thoughtful things people have done for us during this time. So basically this post is a BIG thank you to everyone.
To my co-workers in Seattle and Japan:
I've been very fortunate to work with a company that has given me great opportunities to work with some incredible people. My current team in Seattle/Canada is part of this incredible group. One of the first visitor I had at the hospital was Tronda from the office with a big poster board for my wall with messages from everyone from the team. (and a nice goody bag too..)
Now, I know this sound very simple, but it was so nice to look over at the wall and see the thoughtful messages of encouragement that were written from every member of the team. Especially during the bad days. I also received a package from a co-worker in Canada. Everything in the package was either made in Canada or about Canada. Becky, I'm not sure if I'm ready to move to Canada, but the maple syrup was great! They continue to check in and I can't thank them enough for their support.
Another package I received was from my co-workers in Japan. In 2010, I had the incredible opportunity to be a part of this team and work with them on a new product.
During this process, not only did I have incredible experiences, but I made some great friends along the way. As most of you know, I served a Mormon mission in Japan about 20 years ago. I remember within the first 2 months of being there, I was invited into a friend's home and saw a beautifully display of origami cranes. When I asked what this was, he told me that this was a gift given to him by his sister. He said a few years before, he was very sick and was in the hospital for a long time. While he was there, his sister and family made this display folding each crane and attaching them together. By doing so, the person/people making the cranes can make one wish for the person receiving it. There are 1,000 cranes in this display. 1,000! I remember leaving that house thinking, "Wow, what great thing to receive". Well, this is what was in the package I received from Japan. When I opened the box I was overwhelmed with emotion. I knew what this meant and I knew the effort it took to put this together. Never in my life would I thought I would receive something like this. A big thanks to the Japan team for this. It's something I will never forget.
To friends, family and neighbors:
Mayumi and I can't believe the love, support and prayers we have received during the time. It's been amazing! The phone call, emails, cards, packages, people bringing over gifts, food, goodies, raking the leaves, hanging Christmas lights on the house...I could go on and on. You all know who you are and we couldn't go through this with out you!
Quick update:
The last 4 weeks have been great! The doctors are very happy with the way my blood count looks, how I feel, no signs of GVHD and that I have a good energy level. I still have no immune system and have to stay out big crowds, but, as Mayumi mentioned before, I'm able to go to public places in none busy hours which has been great. They also gave me permission to attend a Yoga class at the local YMCA. Mayumi has been going to this class for a while and it's been fun going to it with her.
Today was day 62 from when I had the bone marrow transplant. The doctors have told us from the beginning that if something major was to happen it would happen with in the first 100 days. So, I'm a little over halfway there! After the 100 day mark, I will be release from the Seattle Cancer Care Alliance and start seeing a post transplant Oncologist. I know that things could change at anytime, but that being said, I'm so glad the first half of the 100 days have gone so well.
Thanks again to everyone!
Jason
This is a post I've been wanting to do for a long time and is way overdue. It's been an amazing experience for both Mayumi and I to see all the support from Family, Friends, Co-workers and people we barely know. I thought it would be fun to share a couple of stories of some of thoughtful things people have done for us during this time. So basically this post is a BIG thank you to everyone.
To my co-workers in Seattle and Japan:
I've been very fortunate to work with a company that has given me great opportunities to work with some incredible people. My current team in Seattle/Canada is part of this incredible group. One of the first visitor I had at the hospital was Tronda from the office with a big poster board for my wall with messages from everyone from the team. (and a nice goody bag too..)
Now, I know this sound very simple, but it was so nice to look over at the wall and see the thoughtful messages of encouragement that were written from every member of the team. Especially during the bad days. I also received a package from a co-worker in Canada. Everything in the package was either made in Canada or about Canada. Becky, I'm not sure if I'm ready to move to Canada, but the maple syrup was great! They continue to check in and I can't thank them enough for their support.
Another package I received was from my co-workers in Japan. In 2010, I had the incredible opportunity to be a part of this team and work with them on a new product.
During this process, not only did I have incredible experiences, but I made some great friends along the way. As most of you know, I served a Mormon mission in Japan about 20 years ago. I remember within the first 2 months of being there, I was invited into a friend's home and saw a beautifully display of origami cranes. When I asked what this was, he told me that this was a gift given to him by his sister. He said a few years before, he was very sick and was in the hospital for a long time. While he was there, his sister and family made this display folding each crane and attaching them together. By doing so, the person/people making the cranes can make one wish for the person receiving it. There are 1,000 cranes in this display. 1,000! I remember leaving that house thinking, "Wow, what great thing to receive". Well, this is what was in the package I received from Japan. When I opened the box I was overwhelmed with emotion. I knew what this meant and I knew the effort it took to put this together. Never in my life would I thought I would receive something like this. A big thanks to the Japan team for this. It's something I will never forget.
To friends, family and neighbors:
Mayumi and I can't believe the love, support and prayers we have received during the time. It's been amazing! The phone call, emails, cards, packages, people bringing over gifts, food, goodies, raking the leaves, hanging Christmas lights on the house...I could go on and on. You all know who you are and we couldn't go through this with out you!
Quick update:
The last 4 weeks have been great! The doctors are very happy with the way my blood count looks, how I feel, no signs of GVHD and that I have a good energy level. I still have no immune system and have to stay out big crowds, but, as Mayumi mentioned before, I'm able to go to public places in none busy hours which has been great. They also gave me permission to attend a Yoga class at the local YMCA. Mayumi has been going to this class for a while and it's been fun going to it with her.
Today was day 62 from when I had the bone marrow transplant. The doctors have told us from the beginning that if something major was to happen it would happen with in the first 100 days. So, I'm a little over halfway there! After the 100 day mark, I will be release from the Seattle Cancer Care Alliance and start seeing a post transplant Oncologist. I know that things could change at anytime, but that being said, I'm so glad the first half of the 100 days have gone so well.
Thanks again to everyone!
Jason
Monday, November 21, 2011
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
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:
A few other things we discussed about things to look forward to was:
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
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
Thursday, November 17, 2011
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
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
Tuesday, November 8, 2011
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
"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
Saturday, November 5, 2011
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
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
Saturday, October 29, 2011
After the first week
It has been a week since he came home, and we (I) have been super busy.
The first few days after he came home, I was still trying to get things set up for him, learning how to take care of him (daily IV, food, meds, etc), taking Jason to SCCA daily, and try not to forget that I have two boys, and of course, up date the blog. Luckily, I had my friend from SLC(she was here for a few days), great neighbors and church members to help me. If I didn't have any of these helps, Jason would be back in the hospital, I would have checked myself in a (mental) hospital, boys would been hungry and lost.
Also, Jason's mother flew in from SLC, and she is staying with us for a while. She had not been on an airplane since 1976 (She went to Hawaii and decided she would NEVER get on another airplane ever again). But a loving mother would do anything for her sick son. Well done mother! She said it was not too bad, and she won't mind flying again. We are all glad that she is here.
I guess I should write how Jason is doing, not so much of what I'm doing! He was doing great the first couple of days after he got home. Now he is really tired, lost appetite, can't sleep, coughing, little vomiting, etc (I could keep listing all of the symptoms). He looks miserable. We increased the amount of IV fluid, changed some medicines, but it doesn't seem like helping him a lot. Maybe this is how he should be feeling-post transplant patient. The doctors are not too concern about him yet, but we are paying close attention to any changes in his body.
Blood counts must be doing well too ( I have not seen it for a week). I should not assume too many things, but these obvious blood counts shouldn't be my priority to keep eyes on, right? I have to trust doctors, nurses and my judgements to take care of Jason... I hope...
Jason will have a bone marrow biopsy on 11/04. This is interesting because his last bone marrow biopsy was on 9/15 which was Jason's birthday, and 11/04 is my birthday! I hope Jason is NOT planning a surprise party for me :)
Well, thanks for everyone who loves and cares about Jason.
Love,
Mayumi
The first few days after he came home, I was still trying to get things set up for him, learning how to take care of him (daily IV, food, meds, etc), taking Jason to SCCA daily, and try not to forget that I have two boys, and of course, up date the blog. Luckily, I had my friend from SLC(she was here for a few days), great neighbors and church members to help me. If I didn't have any of these helps, Jason would be back in the hospital, I would have checked myself in a (mental) hospital, boys would been hungry and lost.
Also, Jason's mother flew in from SLC, and she is staying with us for a while. She had not been on an airplane since 1976 (She went to Hawaii and decided she would NEVER get on another airplane ever again). But a loving mother would do anything for her sick son. Well done mother! She said it was not too bad, and she won't mind flying again. We are all glad that she is here.
I guess I should write how Jason is doing, not so much of what I'm doing! He was doing great the first couple of days after he got home. Now he is really tired, lost appetite, can't sleep, coughing, little vomiting, etc (I could keep listing all of the symptoms). He looks miserable. We increased the amount of IV fluid, changed some medicines, but it doesn't seem like helping him a lot. Maybe this is how he should be feeling-post transplant patient. The doctors are not too concern about him yet, but we are paying close attention to any changes in his body.
Blood counts must be doing well too ( I have not seen it for a week). I should not assume too many things, but these obvious blood counts shouldn't be my priority to keep eyes on, right? I have to trust doctors, nurses and my judgements to take care of Jason... I hope...
Jason will have a bone marrow biopsy on 11/04. This is interesting because his last bone marrow biopsy was on 9/15 which was Jason's birthday, and 11/04 is my birthday! I hope Jason is NOT planning a surprise party for me :)
Well, thanks for everyone who loves and cares about Jason.
Love,
Mayumi
Tuesday, October 25, 2011
There's no place like Home
I know because of your prayers and support, Jason has done so well.
We have been visiting Seattle Cancer Care Alliance everyday for blood drowns and clinic visits since he got out of the University of Washington Med. Center. Nurses and doctors treat him like a rock star because he has done extremely well with his progress. His blood levels are increasing daily.
As much as he always enjoyed eating, it has been challenging for him, and I have to be careful and creative. Certain foods does not taste good anymore, and he lost his appetite. He gives good effort to eat, but usually I have to tell him to eat (believe it or not!). He gets really tired if he does not eat good or does not get naps. He is still fragile even with his rock star progress.
He loves being home. Our younger boy is into Star Wars, and Jason watches the movies and plays lightsabers with him. It scares me to watch them play (Jason is sitting in a chair), because if he gets hit, it could turn into a bruise. With our older boy, he usually talks about school. My nurse skill has improved. I can do IV fluid for Jason without being nervous. I think Jason feels comfortable me doing it, too.
There's no place like Home. Jason must have done the magic red shoes trick at the hospital while he was trapped there. It worked.
I'll try to post some pictures soon.
Thanks for your supports.
Love,
Mayumi
We have been visiting Seattle Cancer Care Alliance everyday for blood drowns and clinic visits since he got out of the University of Washington Med. Center. Nurses and doctors treat him like a rock star because he has done extremely well with his progress. His blood levels are increasing daily.
As much as he always enjoyed eating, it has been challenging for him, and I have to be careful and creative. Certain foods does not taste good anymore, and he lost his appetite. He gives good effort to eat, but usually I have to tell him to eat (believe it or not!). He gets really tired if he does not eat good or does not get naps. He is still fragile even with his rock star progress.
He loves being home. Our younger boy is into Star Wars, and Jason watches the movies and plays lightsabers with him. It scares me to watch them play (Jason is sitting in a chair), because if he gets hit, it could turn into a bruise. With our older boy, he usually talks about school. My nurse skill has improved. I can do IV fluid for Jason without being nervous. I think Jason feels comfortable me doing it, too.
There's no place like Home. Jason must have done the magic red shoes trick at the hospital while he was trapped there. It worked.
I'll try to post some pictures soon.
Thanks for your supports.
Love,
Mayumi
Saturday, October 22, 2011
Home sweet home-Day 13
He is home. It's only day 13!! Doctors and nurses are amazed by his quick recovery. His blood counts are still low, but good enough to come home. He is happy to be home.
He house is filled with medical supplies and equipments. I am overwhelmed with everything. It feels like... when your fist baby was born few weeks earlier than the due date, and baby came home for the first time from the hospital... don't know how to change diapers, how to feed, what to do when it cried, etc. Luckily, I don't have to change Jason's diapers, but I have to take care of his Hickman line, put IV fluids daily, feed him with safe nutritious foods, and more.
Doctor said he will still have ups and downs. He still has a good chance (50% or more) of developing GVHD in next few month. It scares me, but I hope we can get through this.
Thanks for your support & prayers.
Love,
Mayumi
He house is filled with medical supplies and equipments. I am overwhelmed with everything. It feels like... when your fist baby was born few weeks earlier than the due date, and baby came home for the first time from the hospital... don't know how to change diapers, how to feed, what to do when it cried, etc. Luckily, I don't have to change Jason's diapers, but I have to take care of his Hickman line, put IV fluids daily, feed him with safe nutritious foods, and more.
Doctor said he will still have ups and downs. He still has a good chance (50% or more) of developing GVHD in next few month. It scares me, but I hope we can get through this.
Thanks for your support & prayers.
Love,
Mayumi
Thursday, October 20, 2011
Good day is coming!
So, we had hard weekend and a few days... Mentally ,emotionally & physically Jason had his hardest time ever in his life. I'd never seen him like that before. Morphine was a bad medicine for Jason. He changed to different type of pain medication on Tuesday afternoon. It worked really good. His pain was well under control, and his mind was back to normal by Wednesday.
Magically, his mouth sores almost disappeared, too. It was because his blood counts started to come back, the sign of engulfment was starting to take over well. Mouth sore were almost gone, pain was well managed, he started to sleep, and he was still eating.
Doctors and nurses were VERY pleased with his progress. They told us yesterday that he might be able to leave the hospital within 10 days. Great!!! It would be a little bit earlier than I thought, but that means Jason is doing really good.
Jason called me this afternoon and told me that a doctor wanted to talk to me when I got to the hospital. Jason told me it would be about his discharge date. I thought it might have pushed off a few days, I hoped nothing serious was going on.
PA Kathrine came into Jason's room and said " Jason is doing really well. We think he might be able to go home tomorrow. What do you think?" My reaction was... "TOMORROW?! ", and I was screaming in my mind "I'm not ready for him!". It was not like I was not happy he was coming home, but I would not know what to do!!! The whole house has to be disinfected, I need to learn how to flush the Hickman line, learn about his med & IV, check his vitals... Can I take care of him by myself?!
Jason was super excited about the news. He has been trapped in the room since he started to have a cold (have I mentioned it before?). No more beeping IV machine, nurse coming in a middle of night, and hospital foods. He is ready to be with his family. He was kind enough to understand my panic, and even tried to talk her out of it. But Jason looked so happy, I could not tell the doctor "No! He can't come home yet".
Well, we will hear what will happen tomorrow. I cleaned the house...at least he has a clean & disinfected bedroom & bathroom.
Well, we will know tomorrow morning if he can come home or not.
Wish us luck!
Love,
Mayumi
Magically, his mouth sores almost disappeared, too. It was because his blood counts started to come back, the sign of engulfment was starting to take over well. Mouth sore were almost gone, pain was well managed, he started to sleep, and he was still eating.
Doctors and nurses were VERY pleased with his progress. They told us yesterday that he might be able to leave the hospital within 10 days. Great!!! It would be a little bit earlier than I thought, but that means Jason is doing really good.
Jason called me this afternoon and told me that a doctor wanted to talk to me when I got to the hospital. Jason told me it would be about his discharge date. I thought it might have pushed off a few days, I hoped nothing serious was going on.
PA Kathrine came into Jason's room and said " Jason is doing really well. We think he might be able to go home tomorrow. What do you think?" My reaction was... "TOMORROW?! ", and I was screaming in my mind "I'm not ready for him!". It was not like I was not happy he was coming home, but I would not know what to do!!! The whole house has to be disinfected, I need to learn how to flush the Hickman line, learn about his med & IV, check his vitals... Can I take care of him by myself?!
Jason was super excited about the news. He has been trapped in the room since he started to have a cold (have I mentioned it before?). No more beeping IV machine, nurse coming in a middle of night, and hospital foods. He is ready to be with his family. He was kind enough to understand my panic, and even tried to talk her out of it. But Jason looked so happy, I could not tell the doctor "No! He can't come home yet".
Well, we will hear what will happen tomorrow. I cleaned the house...at least he has a clean & disinfected bedroom & bathroom.
Well, we will know tomorrow morning if he can come home or not.
Wish us luck!
Love,
Mayumi
Monday, October 17, 2011
Day 6-9 Not so good days...
He thinks he is losing it. I am sure the morphine is doing it to him. He can not comprehend what is real and what is NOT real. It's scaring and frustrating him. I hope we can find a alternative medicine for him so that his pain and his mind are well controlled. But Jason is scared to change the medication because he does not want to screw up other things.
Sorry Jas, I don't know if you want me to post things like this, but I can't just post "good" things. It has been very hard to see you like this.
The good news is his neutrophils are starting to come back - still very very low. It is a great hope for Jason that his body is getting ready to fix the damages in his body-especially in his mouth.
Mayumi
Sorry Jas, I don't know if you want me to post things like this, but I can't just post "good" things. It has been very hard to see you like this.
The good news is his neutrophils are starting to come back - still very very low. It is a great hope for Jason that his body is getting ready to fix the damages in his body-especially in his mouth.
Mayumi
Sunday, October 16, 2011
Mouth Sores - Mighty Morphine Power
They are in Jason's mouth... sores! They migrated in Jason's mouth a few days ago. We had not been visited him for a few days (because of a bridge closer), and I looked into Jason's mouth for the fist time with a flash light. Severe canker sores were all over. Most of the sores had blood spots, his tongue was swollen. No wonder he was talking like he just had his tongue pieced. Also, the sores were in his throat, so he sounded like he had a bad cold.
He is in pain. He gets morphine to ease the pain, but it makes him sleepy. Really sleepy. He dozes off for a few minutes while we are talking. His eyes rolled over at the same his jar dropped, and he stopped moving. It was freaky at first, but I started to think it was kind of... cute... like a baby! You know when a baby is really sleepy and while he/she is eating, falls asleep (our boys used to to this all the time). I don't know how the med works, but it's doing a good job - Mighty Morphine Power!
Also, because of the sores, he drools a lot (another baby-like symptom). The problem is, it hurts really bad to swallow anything even your own saliva. So, they got him a very good device which is exactly like a suction wand that a dentist use. Simply put the wand in a mouth and vacuums the saliva and mucus out. He loves it.
He is fighting. He is tired, in pain, and frustrated. It's hard to see Jason like that, but he is fighting. Doctors and nursed are amazed that he is still eating (just soup). Most of patients would have given up eating and fed through IV by now. He might give up eating in a few days, but until he stops eating, I will keep making soups for him-I made really good potato soup and butternut squash soup.
We knew the rough time was coming, and it's here. It will be tough for the next few weeks. I know Jason will keep doing his best.
Thank you for your prayers and support.
Love,
Mayumi
He is in pain. He gets morphine to ease the pain, but it makes him sleepy. Really sleepy. He dozes off for a few minutes while we are talking. His eyes rolled over at the same his jar dropped, and he stopped moving. It was freaky at first, but I started to think it was kind of... cute... like a baby! You know when a baby is really sleepy and while he/she is eating, falls asleep (our boys used to to this all the time). I don't know how the med works, but it's doing a good job - Mighty Morphine Power!
Also, because of the sores, he drools a lot (another baby-like symptom). The problem is, it hurts really bad to swallow anything even your own saliva. So, they got him a very good device which is exactly like a suction wand that a dentist use. Simply put the wand in a mouth and vacuums the saliva and mucus out. He loves it.
He is fighting. He is tired, in pain, and frustrated. It's hard to see Jason like that, but he is fighting. Doctors and nursed are amazed that he is still eating (just soup). Most of patients would have given up eating and fed through IV by now. He might give up eating in a few days, but until he stops eating, I will keep making soups for him-I made really good potato soup and butternut squash soup.
We knew the rough time was coming, and it's here. It will be tough for the next few weeks. I know Jason will keep doing his best.
Thank you for your prayers and support.
Love,
Mayumi
Thursday, October 13, 2011
Dear Donor
This last week I've been asking the Dr's, nurses, if there is any way I can send the person who donated their bone marrow a thank you card or letter. They said I can, but because of all the "privacy" laws, I would have to wait until a year from the day I received the bone marrow. I will send that thank you when the year is up but until then, I feel I need to send something now. So, here it goes:
Dear Donor,
A little over 2 years ago, I received a phone call from my Doctor telling me that the pain in my side and all the other symptoms I've been having was a result of a rare type of Leukemia call Chronic Myloyd Leukemia (CML) As my wife and I collapsed on to the floor in disbelief, my first thoughts were of our two boys, who were at the time 6 and 2. At that moment, not really knowing what else to say, I turned to my wife and promised her that I would not let this disease kill me. For the last 2 years my goal every day has been to try and live up to that promise. The medicine they have for this type of Leukemia worked great at first, but after 2 years of one medicine that stop working and the other two that became intolerable, we started looking for a donor. My two bothers were unfortunately not a match, which lead us to going to the national donor data bank, which lead to you. I have no idea why you registered yourself as a donor, but I'm eternally grateful that you did. Because of this gift you have given me, not only do I have a great chance of seeing my two boys grow up, but I can keep that desperate promise that I made to my wife that I would not let this disease kill me. Thank you for what you have done. I'm eternally grateful. You are my hero!
Sincerely,
Jason
P.S.
I'm still doing great! My Doctors are thrilled with my progress. Although I still have a long way to go....so far so good! Thanks.
Dear Donor,
A little over 2 years ago, I received a phone call from my Doctor telling me that the pain in my side and all the other symptoms I've been having was a result of a rare type of Leukemia call Chronic Myloyd Leukemia (CML) As my wife and I collapsed on to the floor in disbelief, my first thoughts were of our two boys, who were at the time 6 and 2. At that moment, not really knowing what else to say, I turned to my wife and promised her that I would not let this disease kill me. For the last 2 years my goal every day has been to try and live up to that promise. The medicine they have for this type of Leukemia worked great at first, but after 2 years of one medicine that stop working and the other two that became intolerable, we started looking for a donor. My two bothers were unfortunately not a match, which lead us to going to the national donor data bank, which lead to you. I have no idea why you registered yourself as a donor, but I'm eternally grateful that you did. Because of this gift you have given me, not only do I have a great chance of seeing my two boys grow up, but I can keep that desperate promise that I made to my wife that I would not let this disease kill me. Thank you for what you have done. I'm eternally grateful. You are my hero!
Sincerely,
Jason
P.S.
I'm still doing great! My Doctors are thrilled with my progress. Although I still have a long way to go....so far so good! Thanks.
Monday, October 10, 2011
Day 2 Still doing well
Jason is doing well... well for BMT patient. Most of BMT patients have the procedure while they are really sick. This didn't apply to Jason.
His leukemia was well under control, his health was good. Maybe this is why he is tolerating everything much better so far. Doctors and nurses say that he will loose hair completely, mouth sore will take over his mouth. He already has nausea and diarrhea... so he will have some rough few weeks coming. He can not sleep long hours because nurses come in and check his vitals every few hours even middle of the night, and he has to go to the bathroom. He has tons of fluid going in that's why he has to go every 30 min.
Mean while, he enjoys our visits and walks us back by the elevator where he is not allowed to cross over the restricted area. Hope he will recover soon. We appreciate your warm thoughts, comments and prayers.
Love,
Mayumi
Mayumi
p.s.
I uploaded some more pictures from the transplant day- blog title: Happy NEW Birthday. You can see the marrow!
Hair
Jason wanted me to post some pictures, so here are some of my picks of the day from 9/27/11.
As most of people knows when you go through Chemo, loose hair. So, doctors and nurses recommended us to shave Jason's hair before it falls off everywhere. We all had a great time shaving off his hair. Jason wanted to have a mohawk, and I wanted to express my love. We all came to a conclusion that we like simple bold.
As most of people knows when you go through Chemo, loose hair. So, doctors and nurses recommended us to shave Jason's hair before it falls off everywhere. We all had a great time shaving off his hair. Jason wanted to have a mohawk, and I wanted to express my love. We all came to a conclusion that we like simple bold.
Even though Jason has finished Chemo now, his hair is still growing a little bit. I noticed yesterday, his hair looked a little lighter and his eye brows were thinner. The nurse said it'll fall off completely in a few days.
The reason why the hair falls off is Chemo kills most of active cells; they are hair and GI system. That is why another famous side effect from Chemo is mouth sore, loss of petite and diarrhea - all in GI (gastronomy & intestine). He is experiencing most of the side effects now and tired of going to bathroom every 30 min.
Sunday, October 9, 2011
Hickman Line
This is the Hickman Line- central line put in Jason on 9/28/11. Boys thought Daddy was becoming Iron Man or Darth Vader. Yes, my boys are clever!
The name Hickman came from the person who invented this type of central line, and he was from Logan, UT!
Before this was invented, they put a similar kind of line and more than 90% of patients got infection through the line. Hickman simply added almost cloth like material on the line where it comes out of the body so that the patient's skin grows around it, and prevent infection. The rate of infection became almost nothing after the invention.
A small incision was made by Jason's collar bone, and as you can see on the X-ray photo, the line goes right by his heart. This procedure was done less than 1 hr. What a handy, or should I say... NO HANDY device for patients like Jason who has to have IV line for a long time.
A friend of ours who had BMT 8 years ago has two Hickman lines put in on both side of his chest, and both of the incisions were 2-3 inches long. You can't even see Jason's scar, and I am amazed how much the medical technology has improved even since then.
Posted by Mayumi
Saturday, October 8, 2011
Happy NEW Birthday
Hi everyone! It’s Mayumi. I’ll try to post things here and there for Jason while he is working hard for recovery.
October 7, 2011
Today is the day. The donated marrow was scheduled to arrive Seattle around 7pm.
I checked with Jason few times during the day to see how he was doing. He finished the last round of chemo yesterday, and had been resting most of the day. He sounded tired, but he said he was doing well except he had to go bathroom every 30 min.
I told Ty what was going to happen tonight. Daddy was getting new marrow. Ty said he wanted to come with me. I told him he couldn’t come because it was going to be really late. But Ty insisted to come – I thought he just wanted to watch TV with Netflix which we don’t have at our house, or play with our computer which had been with Jason since he was admitted in the hospital. The real reason why Ty really wanted to go to the hospital with me tonight was to see Daddy’s new blood. DADDY’S NEW BLOOD! How sweet! It was going to happen tonight!
We got at the UW Medical Center around 9pm, of course Ty turned on his TV shows as soon as we got there, and we waited… no news. It was almost 9:30pm, Jason was getting tired, so we turned off the room light, and tried to get some sleep. Nurse Emily came in and out few times checking on Jason’s vital signs and other stuff, but she told us every time she had not heard where the marrow was yet. Finally, around 10:45pm Emily came in and said, “it’s on the way from SCCA, should be here in 10 min.” She gave Jason Tylenol and Benadryl as prep-meds to avoid any reaction with the marrow. The common reactions are rashes, fever, chills, etc.
Even though we were in the dimmed silent hospital room, I could feel our excitement. Suddenly, Ty’s body got tighter and his breathing got slightly faster (he was laying down with me in a small lazy-boy), my heart started to pound, and Jason… too quiet! We didn’t turn on the light, didn’t even move, but quietly confirmed our excitement to each other. “It’s coming!”
11:00pm, Nurse Emily and other nurse came in with 5-6 packs of what looked like blood. They confirmed name & ID numbers with each every bag with Jason’s wrist band. After everything was confirmed, Emily told the other nurse to bring the blue paper… more paper work? A few minutes later, 4-5 nurses showed up in the room with blue birthday card for Jason and started to sing the happy birthday song for him as if we were at having birthday dinner at Red Robin.
We took pictures with the new marrow, carefully checking if there was any clue who or where the marrow was from. Nurse Emily told us that it was from Minneapolis, Minnesota. It was collected 7:35am in the morning; the total volume was 809ml. This morning at 7:35am, somewhere in Minneapolis, 44 years old, around 210lb man who happened to be Jason’s perfect bone marrow match went into a painful surgery to give his own bone marrow for Jason.
We saw the marrow slowly going through his IV. Ty was carefully watching the red moving closer and closer to Daddy’s heart. Jason could have reactions to his marrow as soon as it got into his body. Nurse Emily was there to make sure she was ready to take care of any change in Jason’s body if something was to happen. We waited, marrow keep going in. Nothing happened. As soon as we started feel comfortable (about 30min) later, the IV machine started to beep. Nurse Emily came in, checked the IV. It was clogged. “The bone marrow is denser than blood and even with chunks (believe it or not!), blockage and clogs happens”, Nurse Emily said. She flushed the IV line with saline, and the IV machine went silent. No harm for Jason. That repeated every 5-10min.
October 7, 2011
Today is the day. The donated marrow was scheduled to arrive Seattle around 7pm.
I checked with Jason few times during the day to see how he was doing. He finished the last round of chemo yesterday, and had been resting most of the day. He sounded tired, but he said he was doing well except he had to go bathroom every 30 min.
I told Ty what was going to happen tonight. Daddy was getting new marrow. Ty said he wanted to come with me. I told him he couldn’t come because it was going to be really late. But Ty insisted to come – I thought he just wanted to watch TV with Netflix which we don’t have at our house, or play with our computer which had been with Jason since he was admitted in the hospital. The real reason why Ty really wanted to go to the hospital with me tonight was to see Daddy’s new blood. DADDY’S NEW BLOOD! How sweet! It was going to happen tonight!
We got at the UW Medical Center around 9pm, of course Ty turned on his TV shows as soon as we got there, and we waited… no news. It was almost 9:30pm, Jason was getting tired, so we turned off the room light, and tried to get some sleep. Nurse Emily came in and out few times checking on Jason’s vital signs and other stuff, but she told us every time she had not heard where the marrow was yet. Finally, around 10:45pm Emily came in and said, “it’s on the way from SCCA, should be here in 10 min.” She gave Jason Tylenol and Benadryl as prep-meds to avoid any reaction with the marrow. The common reactions are rashes, fever, chills, etc.
Even though we were in the dimmed silent hospital room, I could feel our excitement. Suddenly, Ty’s body got tighter and his breathing got slightly faster (he was laying down with me in a small lazy-boy), my heart started to pound, and Jason… too quiet! We didn’t turn on the light, didn’t even move, but quietly confirmed our excitement to each other. “It’s coming!”
11:00pm, Nurse Emily and other nurse came in with 5-6 packs of what looked like blood. They confirmed name & ID numbers with each every bag with Jason’s wrist band. After everything was confirmed, Emily told the other nurse to bring the blue paper… more paper work? A few minutes later, 4-5 nurses showed up in the room with blue birthday card for Jason and started to sing the happy birthday song for him as if we were at having birthday dinner at Red Robin.
We took pictures with the new marrow, carefully checking if there was any clue who or where the marrow was from. Nurse Emily told us that it was from Minneapolis, Minnesota. It was collected 7:35am in the morning; the total volume was 809ml. This morning at 7:35am, somewhere in Minneapolis, 44 years old, around 210lb man who happened to be Jason’s perfect bone marrow match went into a painful surgery to give his own bone marrow for Jason.
We saw the marrow slowly going through his IV. Ty was carefully watching the red moving closer and closer to Daddy’s heart. Jason could have reactions to his marrow as soon as it got into his body. Nurse Emily was there to make sure she was ready to take care of any change in Jason’s body if something was to happen. We waited, marrow keep going in. Nothing happened. As soon as we started feel comfortable (about 30min) later, the IV machine started to beep. Nurse Emily came in, checked the IV. It was clogged. “The bone marrow is denser than blood and even with chunks (believe it or not!), blockage and clogs happens”, Nurse Emily said. She flushed the IV line with saline, and the IV machine went silent. No harm for Jason. That repeated every 5-10min.
By 1:00am in early October 8th, Jason was already asleep because of the prep-meds. Ty was already snoring in the lazy-boy. I was wondering how to move Ty to the car.
It went well for now. Things might change for tomorrow or next week, but it was a good start.
Happy Birthday Jason
FYI: I put Ty in a wheel chair and pushed him to the parking. Ty thought it was awesome.
It went well for now. Things might change for tomorrow or next week, but it was a good start.
Happy Birthday Jason
FYI: I put Ty in a wheel chair and pushed him to the parking. Ty thought it was awesome.
Wednesday, October 5, 2011
Day 6: Last Day of Chemo
As expected, Cytoxan is a little more intense than Busulfan (the Oral Chemo I started last Friday) Cytoxan is very common chemotherapy and is use to help fight other types of Cancers like Hodgkins's disease, CTCL, AML CLL ALL and the one I have CML. Because of the massive use of this Chemo, they have it down to a sience on what pre-medication I need before we start the Cytoxan. 4 hours before Cytoxan is used, I start an IV of Hydration and they tell me to drink 2 litters of water (which means I'm peeing every 15 minuntes!) Also, one hour before Cytoxan they start and IV of a medicine called Mesna. This is to help protect my liver and Kindnesy. At last, they give me 2 types of nausea medication This is been working! well, so far. :)
Once the Cytoxan starts, its pretty uneventfully. Your body will tingle in some areas and burn in others, but not bad and goes away pretty quick. One big side effect I did have was burning tingling in my mouth, tongue and the inside of my nose. Pretty intense, took some meds and was completely cleared when I woke up this morning. Other then that, I slept good and ready to go for my last day of Chemo!
Thanks again for every ones love and support to me and especially my family. We love and appreciate you all!
Transplant day with be this Friday!
Jason
Once the Cytoxan starts, its pretty uneventfully. Your body will tingle in some areas and burn in others, but not bad and goes away pretty quick. One big side effect I did have was burning tingling in my mouth, tongue and the inside of my nose. Pretty intense, took some meds and was completely cleared when I woke up this morning. Other then that, I slept good and ready to go for my last day of Chemo!
Thanks again for every ones love and support to me and especially my family. We love and appreciate you all!
Transplant day with be this Friday!
Jason
Saturday, October 1, 2011
Chemo - Day 1 and 2
Well, after 3 weeks of test, blood work, and prep classes, I entered University of Washington Hospital on September 29th. The original plan was to start the Chemo as an out patient, but after considering all the things we had to do, we decided to do everything in the hospital. I'm so glad we did. This is much easier on me and Mayumi who would have had to help me with the medicine every 6 hours for 3 days and go to SCCA with me all day for blood work. The first to 2 days of Chemo have been good. I feel the same as I did before I came. The type of Chemo I'm taking is called Busulfan. The only way they produce this type of oral Chemo is in small 2 mg pills and my dose every 6 hours is 100 mg. Instead of taking 50 small pills at once, they put 5 pills together in one capsule. So I'm taking 10 capsules all at the same time. This will go on until Monday Oct 3. On the 4th, I will start a new type of Chemo called Cytoxan. The will be done by an IV and will go directly into what they call a Hickman line that they put into my chest last week. From this line, they can also draw blood, give me medicine etc.
Thanks again for our Ward Family, Neighbors, and Friends who have helped out over the
last few weeks. We couldn't have done this without you!
From here on out, Mayumi and I will try to start posting daily
-Jason
Wednesday, September 14, 2011
The Big Surprise
The Big Surprise:
As most of you know, Mayumi and I have been married for over 18 years. During this time, I have learned one thing...Mayumi hates surprises. She hates being surprised and she hates surprising other people. So the last thing I would ever expect is for her to throw me a surprise birthday party here is Seattle with 6 of my close friends. Well, thats what happened. Mayumi had this great idea of throwing me a surprise party for my 40th birthday the Saturday before I start the out paitent portion of my BMT. We had a great time! I can't thank everyone enough for coming out and spending some much needed time just before eveything starts. You can see all the pictures on Facebook
The next 2 weeks:
We have a full schedule for the next 2 weeks. A lot of blood work, EKG, Chest X-rays, Bone Marrow biopsy, meetings, etc. Everything is going well so far. I will try and give a good update towards the end of the weeks.
-Jason
As most of you know, Mayumi and I have been married for over 18 years. During this time, I have learned one thing...Mayumi hates surprises. She hates being surprised and she hates surprising other people. So the last thing I would ever expect is for her to throw me a surprise birthday party here is Seattle with 6 of my close friends. Well, thats what happened. Mayumi had this great idea of throwing me a surprise party for my 40th birthday the Saturday before I start the out paitent portion of my BMT. We had a great time! I can't thank everyone enough for coming out and spending some much needed time just before eveything starts. You can see all the pictures on Facebook
The next 2 weeks:
We have a full schedule for the next 2 weeks. A lot of blood work, EKG, Chest X-rays, Bone Marrow biopsy, meetings, etc. Everything is going well so far. I will try and give a good update towards the end of the weeks.
-Jason
Wednesday, August 24, 2011
Bone Marrow Transplant
About 4 months ago I started having problems with my medication. My levels were great (0.02) basically remission, but I started to have numbness and tingling in my legs, feet and hands. After a couple of weeks of this I checked with Dr. Druker and sure enough, it was a known side effect of Sprycel and if I didn't stop taking Sprycel, this numbness and tingling with be permanent. In May of this year, we started the 3rd medicine for this type of leukemia called Tasigna. All I can say about Tasigna is that its the 3rd medicine for a reason. bad side effects (bone aches, tired) and the medicine itself is very sensitive. After about two months of this, we decided it was time to get serious about Bone Marrow Transplant (BMT). We've gone through the initial testing in Nov 2010. Unfortunately, My older brother Joel was not a match and my other brother Jeff has MS so he was not even tested. The good new was they found close to 10 people in the donor bank that were a perfect match. Because of that, my age, and the Leukemia being at a low level, BMT is the best choice for me. I will start the process for BMT on September 13. The actual transplant will be October 7th. From here on out I will be blogging a lot more....
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