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
Sunday, January 29, 2012
Sunday, January 22, 2012
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
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
Friday, January 20, 2012
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
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
Saturday, January 14, 2012
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
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
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
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