January 29, 2009: Jill coughed all night. She had three breathing treatments during the day that seemed to help, but only for a little while. This afternoon, two infectious disease doctors came in to examine her and new blood tests were ordered. They are trying to make sure that she has not contracted a viral infection. It may just be her asthma out of control, or her MS. In spite of coughing all night, she did have more energy than yesterday. Her counts have basically not changed, but it is normal for them to stay low until the new stem cells engraft. I hope she has a better night's sleep tonight. Her cough reminds me of when she was little and had bronchial asthma and coughed all night. It also sounds just like Adele's did too.
She was able to video chat with Mark, Nina, & Isabelle tonight. That made her very happy.
Love to all,
Doreen
Thursday, January 29, 2009
Wednesday, January 28, 2009
DAY 6: WEDNESDAY
January 28, 2009: Jill finally had a good night's sleep. She took a sleeping pill that helped. Her WBC was only 0.1 yesterday, but it is back to 0.3 today. Yesterday's counts were the lowest so far. That explains the exhaustion.
She felt better in the morning, but as the day progressed, she was tired again and slept most of the afternoon. The Neupogen shots are causing some pain in her lower back. It could get a lot worse, but we are thinking positive. Her white count went up three points from yesterday. That is a very positive sign because they did it on their own.
She doesn't eat much but she likes her raspberry sherbet! She drinks most of the time instead. The fluids fill her up so fast, she just can't eat. The nurse is making her shakes from orange sherbet, vanilla pudding, and milk. She loves them and it doesn't require any effort for her to drink.
Love,
Doreen
She felt better in the morning, but as the day progressed, she was tired again and slept most of the afternoon. The Neupogen shots are causing some pain in her lower back. It could get a lot worse, but we are thinking positive. Her white count went up three points from yesterday. That is a very positive sign because they did it on their own.
She doesn't eat much but she likes her raspberry sherbet! She drinks most of the time instead. The fluids fill her up so fast, she just can't eat. The nurse is making her shakes from orange sherbet, vanilla pudding, and milk. She loves them and it doesn't require any effort for her to drink.
Love,
Doreen
Tuesday, January 27, 2009
DAY 5: TUESDAY
January 27, 2009: Jill coughed all night and also ran a temperature. She seems to have a head cold because her ears hurt and she has some congestion in her throat. Last night she felt great and walked around the hallways again. She even went on a stationary bike in the visitor's lounge. We don't know what triggered it, but the doctor said that things could be like a roller coaster ride for a while. When her counts come up, she will be more stable.
Tonight she gets a neupogen shot in the tummy, like before, to stimulate the stem cells to grow. There can be side effects like pain in the bones and you can feel like you have been run over by a truck, but that means that the neupogen is working. If this happens, she will be given meds for the pain.
Today her energy level was very low, but she was up most of the night, so that can be one of the reasons. She feels better now and has had another breathing treatment to help with the cough. Her rash is still visible but is fading.
Jill sends her love
Love,
Doreen
Tonight she gets a neupogen shot in the tummy, like before, to stimulate the stem cells to grow. There can be side effects like pain in the bones and you can feel like you have been run over by a truck, but that means that the neupogen is working. If this happens, she will be given meds for the pain.
Today her energy level was very low, but she was up most of the night, so that can be one of the reasons. She feels better now and has had another breathing treatment to help with the cough. Her rash is still visible but is fading.
Jill sends her love
Love,
Doreen
DAY 4: MONDAY
January 26, 2009: Jill started feeling much better in the early morning about 4 am. I noticed that she was walking to the bathroom by herself and didn't call for assistance; this continued all day. She didn't even take a nap today and her appetite came back; she is eating!
Her platelet count fell again so she has to be very careful brushing her teeth. Her gums will bleed easily and can possibly swell. Platelets are the little stoppers that prevent us from bleeding from our orifices.
This afternoon, she walked around the hallway three times. This is a wonderful sign. She is also steadier and stronger. The nurses commented on how much better she looks.
The rash that she developed on her chest and back has faded, but you can still see the distinct butterfly shape. It is puzzling for the nurses and doctors because they have never seen it before. It looks as if someone took an iron and branded this perfect shape on her chest. It is in at least three different places. I looked on the computer and couldn't find a picture to show you so that you could get an idea of what it looks like. It is raised all around the edges and very red. The inside is clear. It looks like she was branded like the way they do cattle. We are watching it closely and trying to see if anything triggers another flare up. The chemotherapy does a lot of strange things to your body.
Love,
Doreen
Her platelet count fell again so she has to be very careful brushing her teeth. Her gums will bleed easily and can possibly swell. Platelets are the little stoppers that prevent us from bleeding from our orifices.
This afternoon, she walked around the hallway three times. This is a wonderful sign. She is also steadier and stronger. The nurses commented on how much better she looks.
The rash that she developed on her chest and back has faded, but you can still see the distinct butterfly shape. It is puzzling for the nurses and doctors because they have never seen it before. It looks as if someone took an iron and branded this perfect shape on her chest. It is in at least three different places. I looked on the computer and couldn't find a picture to show you so that you could get an idea of what it looks like. It is raised all around the edges and very red. The inside is clear. It looks like she was branded like the way they do cattle. We are watching it closely and trying to see if anything triggers another flare up. The chemotherapy does a lot of strange things to your body.
Love,
Doreen
Sunday, January 25, 2009
DAY 3
January 25, 2009: Jill is still feeling the effects from the chemotherapy. She is running a temperature, and she broke out with a rash all over her upper body. It looks like a butterfly rash because of the shape, but it is also on top of her head like eczema. It is very itchy so she is back on prednisone for the inflammation. It was given in the IV line so it would take effect immediately. She is extremely uncomfortable and very tired.
Jill keeps trying to sleep but she is checked around the clock which makes it almost impossible. Her counts continue to fall. Today is only day three although it seems much longer. On day five, which is Tuesday, things should start to turn around.
The girl in the room next to Jill that also had the transplant the same day for scleroderma feels a lot better. Her mother said if you touch her skin you can actually squeeze it a little and see little folds. It was like leather only three days ago. The symptoms for that disease are externally visible, so you can see results right away. MS affects the myelin sheath in the brain, so it takes much longer.
She thanks everyone for their prayers and hopes she will be up to writing soon.
Love
Doreen
Jill keeps trying to sleep but she is checked around the clock which makes it almost impossible. Her counts continue to fall. Today is only day three although it seems much longer. On day five, which is Tuesday, things should start to turn around.
The girl in the room next to Jill that also had the transplant the same day for scleroderma feels a lot better. Her mother said if you touch her skin you can actually squeeze it a little and see little folds. It was like leather only three days ago. The symptoms for that disease are externally visible, so you can see results right away. MS affects the myelin sheath in the brain, so it takes much longer.
She thanks everyone for their prayers and hopes she will be up to writing soon.
Love
Doreen
Saturday, January 24, 2009
DAY 2
January 24, 2009: Jill had a bad afternoon. She started to get ready for a shower and all of a sudden she started to go into a cold sweat. Then she vomited and had pains in her stomach. The nurse was about to cover the PICC Line with plastic so it wouldn't get wet in the shower but Jill was just too weak to stand up or sit down for the shower. Then she started getting chills so she went back to bed. She is sleeping now (poor thing).
I think that between the chemotherapy and her blood counts still falling, it just is taking all of her energy. All of this is considered normal for the procedure she went through. Her WBC is 0.3. Her platelet count is 60 and something called the Absolute Neutrophils is too low to calculate.
She is very susceptible to infections while these counts are so low. If her platelet count goes below 10 they will transfuse.
She has diarrhea too, which knocks you out. Stool samples are taken every time she goes. If the results are negative three times in a row, then they rule out virus or infection. This morning all her three tests were negative, so it is a result of the chemotherapy.
We have to be patient and soon she will be doing better. I told her this is a small price to pay in exchange for better health.
Love
Doreen
I think that between the chemotherapy and her blood counts still falling, it just is taking all of her energy. All of this is considered normal for the procedure she went through. Her WBC is 0.3. Her platelet count is 60 and something called the Absolute Neutrophils is too low to calculate.
She is very susceptible to infections while these counts are so low. If her platelet count goes below 10 they will transfuse.
She has diarrhea too, which knocks you out. Stool samples are taken every time she goes. If the results are negative three times in a row, then they rule out virus or infection. This morning all her three tests were negative, so it is a result of the chemotherapy.
We have to be patient and soon she will be doing better. I told her this is a small price to pay in exchange for better health.
Love
Doreen
Friday, January 23, 2009
Day 1
January 23, 2009 – From now on the days are counted from the day of the stem cell infusion. Yesterday was day 0.
Jill's white count is now 0.3, which is very low. Her platelet's were 279 and are now 79. The doctor's keep telling her not to worry that all of this is normal. The fluid retention brought her weight up to 133 but now it is 120. She is not eating again because she is very weak. She gets full from just a few bites. All she keeps asking is, "Can I sleep?" Her spirits are up and she is just waiting to feel better. She has to take one day at a time and it will happen. On about day 8 to 12 the new stem cells should engraft. You will know by the blood counts. They will go up dramatically. On day 5 she will have neupogen shots to stimulate the growth of the stem cells.
The only problem seems to be her asthma, but it could be her MS. A swallow study is ordered for Monday.
This study will examine the mechanisms of the throat.
She is having a breathing treatment now and I hope it gets her through the night.
Love to all
Jill and Doreen
Jill's white count is now 0.3, which is very low. Her platelet's were 279 and are now 79. The doctor's keep telling her not to worry that all of this is normal. The fluid retention brought her weight up to 133 but now it is 120. She is not eating again because she is very weak. She gets full from just a few bites. All she keeps asking is, "Can I sleep?" Her spirits are up and she is just waiting to feel better. She has to take one day at a time and it will happen. On about day 8 to 12 the new stem cells should engraft. You will know by the blood counts. They will go up dramatically. On day 5 she will have neupogen shots to stimulate the growth of the stem cells.
The only problem seems to be her asthma, but it could be her MS. A swallow study is ordered for Monday.
This study will examine the mechanisms of the throat.
She is having a breathing treatment now and I hope it gets her through the night.
Love to all
Jill and Doreen
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