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
Saturday, January 24, 2009
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
Tuesday, January 20, 2009
Last Day of Chemo!
January 20, 2009: Jill was completely worn out today. She is retaining about 10 lbs. of fluid. The doctor has her on diuretics twice a day and the dosage was increased today. She has to make about four trips an hour to the bathroom, so as soon as she starts to rest she has to get up again. This schedule is taking a toll on her. She doesn't have the energy to eat because it takes energy just for her to chew. Taking a shower is also a chore. The good news is that today is her last day of chemo!
Her face is flushed from the steroids. No fever today, but her blood pressure is still very low. Last night she had a tremor in her leg and was told not to stand or even attempt to walk without assistance.
Her platelet count has gone from 259 to 176 Her hemoglobin was 10.3 and is now 9.5. Her white count is still in the normal range because she is on steroids. Once they are stopped that is when they will bottom out to 0.
With all this going on her spirits are good and she is fighting to get through this phase.
The nurses were telling us that patients come from all around the world to have Dr. Burt care for them. He is considered a king here. His associate, Dr. Alessandro Testori is the prince.
All test results go on the Northwestern Physicians web site so the doctors can access the information at any time. They can order tests and view the results immediately. There is also a computer in each patient’s room that the doctor uses instead of charts. All of the patient’s medical care and history is logged on to the computer. It is really amazing to see.
Love,
Doreen
Her face is flushed from the steroids. No fever today, but her blood pressure is still very low. Last night she had a tremor in her leg and was told not to stand or even attempt to walk without assistance.
Her platelet count has gone from 259 to 176 Her hemoglobin was 10.3 and is now 9.5. Her white count is still in the normal range because she is on steroids. Once they are stopped that is when they will bottom out to 0.
With all this going on her spirits are good and she is fighting to get through this phase.
The nurses were telling us that patients come from all around the world to have Dr. Burt care for them. He is considered a king here. His associate, Dr. Alessandro Testori is the prince.
All test results go on the Northwestern Physicians web site so the doctors can access the information at any time. They can order tests and view the results immediately. There is also a computer in each patient’s room that the doctor uses instead of charts. All of the patient’s medical care and history is logged on to the computer. It is really amazing to see.
Love,
Doreen
Monday, January 19, 2009
Not a Good Day - Jill Needs Your Prayers
January 19, 2009: Today was not a very good day. Jill struggled so much with the terrible side effects of the chemotherapy. She was miserable and nauseous, with a temperature of almost 101 degrees.
At one point, the nurse and Vinny had to help her up off the bathroom floor because she is so weak from her very low blood pressure - it got as low as 50/40! She is also retaining fluids from the chemo and is on Solu-Medrol, another medication that makes her retain even more. She is not eating enough either.
It was very heartbreaking to see her cry from the pain and the suffering that she's going through with the chemo - her ears and throat hurt again and because of the fever, she went into a cold sweat. Dr. Burt tried giving her a pep talk about keeping a positive attitude and reassured her that she will be so much better after all this is over.
Although this was expected, until it happens, you forget how bad it can be. Prayers are needed at this time to help Jill get through this very rough period.
Love,
Doreen
At one point, the nurse and Vinny had to help her up off the bathroom floor because she is so weak from her very low blood pressure - it got as low as 50/40! She is also retaining fluids from the chemo and is on Solu-Medrol, another medication that makes her retain even more. She is not eating enough either.
It was very heartbreaking to see her cry from the pain and the suffering that she's going through with the chemo - her ears and throat hurt again and because of the fever, she went into a cold sweat. Dr. Burt tried giving her a pep talk about keeping a positive attitude and reassured her that she will be so much better after all this is over.
Although this was expected, until it happens, you forget how bad it can be. Prayers are needed at this time to help Jill get through this very rough period.
Love,
Doreen
Sunday, January 18, 2009
Chemotherapy and Low White Blood Count
January 18, 2009: Last night, Jill didn't get much sleep at all. She had to make several trips to the bathroom because she is on a diuretic to flush out the chemotherapy. The IV machine kept beeping and the nurses kept coming in the room either to fix the machine or change the medication bags. They also monitor her temperature and blood pressure during the night.
She was exhausted this afternoon and slept three hours straight. She was completely worn out. This is normal as we are watching her counts start to fall. The chemotherapy will eventually bring her white blood count down to zero. The doctor explained that she will probably need about 2 liters of blood at that time. Almost all the transplant patients need transfusions. She may also need platelets. When the chemotherapy is administered she is also given a blood thinner. When she was admitted, her White Blood Count was 5.3. Last count was 4.4
After her nap, she felt much better.
Love
Doreen
She was exhausted this afternoon and slept three hours straight. She was completely worn out. This is normal as we are watching her counts start to fall. The chemotherapy will eventually bring her white blood count down to zero. The doctor explained that she will probably need about 2 liters of blood at that time. Almost all the transplant patients need transfusions. She may also need platelets. When the chemotherapy is administered she is also given a blood thinner. When she was admitted, her White Blood Count was 5.3. Last count was 4.4
After her nap, she felt much better.
Love
Doreen
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