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
Saturday, October 29, 2011
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.
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