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
Tuesday, January 27, 2009
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
Thursday, January 22, 2009
Stem Cells Administered!
January 22, 2009: Jill had the stem cell transplant around 2 pm this afternoon. She is doing well. She has had so much medication that between the Ativan and the Benadryl, she is sleeping. She smells like creamed corn and that is from the preservative that was used for the stem cells.
The doctor said that stem cells are very smart. She looked around and said that all the people in this room (There were six of us) combined are not as smart as the stem cells. Somehow, they just know exactly what to do. They start repairing what needs to be fixed. A chaplain asked God to bless the cells and Jill had a reading from the book of Psalms, "The Lord is my Sheppard." It was a new Celebration of Life!
She looks very rested now. When Jill woke up she asked if she could have STEAK. She wanted Steak Simirica from the Villa.
Right now she is getting a blood transfusion. Everything is going as planned and we are very excited.
We want to thank everyone for their prayers and support that are making this dream come true
Love
Doreen
The doctor said that stem cells are very smart. She looked around and said that all the people in this room (There were six of us) combined are not as smart as the stem cells. Somehow, they just know exactly what to do. They start repairing what needs to be fixed. A chaplain asked God to bless the cells and Jill had a reading from the book of Psalms, "The Lord is my Sheppard." It was a new Celebration of Life!
She looks very rested now. When Jill woke up she asked if she could have STEAK. She wanted Steak Simirica from the Villa.
Right now she is getting a blood transfusion. Everything is going as planned and we are very excited.
We want to thank everyone for their prayers and support that are making this dream come true
Love
Doreen
Wednesday, January 21, 2009
Chemo Side Effects Continue.
January 21, 2009:
I wish I had better news to report, but unfortunately, Jill is not doing well today. She was up almost the entire night moaning and struggling to go to the bathroom. They can put a catheter into the bladder, but it might cause an infection.
Jill also vomited again and is very weak. Today she lost 8 lbs. She shakes when she has to stand up and again when she sits down, just with the effort it takes. She was too weak to eat - no breakfast or lunch and only took a couple of bites at dinner and then asked if she could sleep again. She was up all night so her body is trying to catch up. She finally fell asleep and Vinny is asleep too.
She has been using an inhaler to breathe, but it is not working so they have ordered a breathing machine to help her. She will also be receiving breathing treatments, which are also adding to the water retention. The doctor has reduced the amount of fluids now that the chemotherapy is finished and feels that this will help with the breathing.
It's horrible to watch someone struggle to breathe - Jill told me that it feels like there's a weight on her chest and she can't get any air in. After the breathing treatment, however, Jill said she felt a bit better.
The side effects will continue for a week or so. Today she lost 8 lbs. She has no fever now, but I think this is the weakest condition I have ever seen her in.
Thank you all for your continued thoughts and prayers. It means a lot to us to know that you're all pulling for Jill's recovery.
Love,
Doreen
I wish I had better news to report, but unfortunately, Jill is not doing well today. She was up almost the entire night moaning and struggling to go to the bathroom. They can put a catheter into the bladder, but it might cause an infection.
Jill also vomited again and is very weak. Today she lost 8 lbs. She shakes when she has to stand up and again when she sits down, just with the effort it takes. She was too weak to eat - no breakfast or lunch and only took a couple of bites at dinner and then asked if she could sleep again. She was up all night so her body is trying to catch up. She finally fell asleep and Vinny is asleep too.
She has been using an inhaler to breathe, but it is not working so they have ordered a breathing machine to help her. She will also be receiving breathing treatments, which are also adding to the water retention. The doctor has reduced the amount of fluids now that the chemotherapy is finished and feels that this will help with the breathing.
It's horrible to watch someone struggle to breathe - Jill told me that it feels like there's a weight on her chest and she can't get any air in. After the breathing treatment, however, Jill said she felt a bit better.
The side effects will continue for a week or so. Today she lost 8 lbs. She has no fever now, but I think this is the weakest condition I have ever seen her in.
Thank you all for your continued thoughts and prayers. It means a lot to us to know that you're all pulling for Jill's recovery.
Love,
Doreen
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