March 20, 2009: It has been a while since we have updated everyone on Jill's status but she has been trying to get back to “normalcy,” as she says. We apologize for this lapse in our blogs.
Jill went for her second blood draw a few weeks ago with her dad, Ernie, and she passed out cold while walking. Because of the genetic heart defect in my mom’s family, this resulted in her getting checked by a cardiologist. The results came back completely normal and the doctors believe she must have had some sort of anxiety attack. Jill says, "I got scared because as they were drawing my blood it just stopped going into the vial." Since that incident she says, "I have definitely taken a step backwards."
After the transplant Jill immediately started thinking clearly, but since the passing out incident, she has become somewhat confused again. She didn't even know she passed out. She still forgets things but nothing like she used to. The doctor says it will just take a bit more time to get her back on schedule. Jill's blood counts are good. Ernie said he noticed that she is a lot more stable than she was.
Jill has to go every 2 weeks now for her blood counts. Her tremors are a lot less noticeable. When she does a lot in one day, it wears her out. Tuesday, she went for blood work, and then we ran some errands and went into three stores. At the last destination she had enough and became exhausted inside the store so we left. We had one more stop at CVS to pick up her meds. The pharmacist told me she saw the News when Jill's story had appeared on TV. It was when they did the "From Broadway with Love" interview. The pharmacist said she was so moved that it brought tears to her eyes. She noticed Jill's name and realized that this was one of her customers. She was happy to see the news air something positive for a change and said they should do more stories like that. When she saw Jill, she smiled and wished her well. She told Jill how she watched the interview and it made her cry. Jill was moved and her eyes filled with tears as she smiled and thanked her. There are so many well-wishers out there that are cheering her on for a recovery. It is so inspiring because she is surrounded by love. She slept for 3 hours when we got home.
We are still waiting for the date that she returns to Chicago for her follow up visit. It should be the end of April. She will have to go to an MS Specialist at Rush Medical and then has to see Dr Burt. They will do an MRI to see if there are any changes to the lesions in her brain.
I know that everyone is waiting hear good news.
Love,
Doreen
Friday, March 20, 2009
Friday, March 6, 2009
DAY 36 - FRIDAY
February 27, 2009: For those of you who don't know what happened in December, here is a story that I thought you would find amusing:
When we left for the first round of chemotherapy and the initial stem cell collection, Jill brought a list of names of people that she wanted to thank for their prayers and donations. It was very difficult for her to write these cards because she was having tremors and her handwriting was difficult to read. I had offered to help, but she insisted that she wanted to do them herself. Jill spent hours finding inspirational quotes and quotes from the Bible that she inserted into every card. She wrote more than forty Thank You Notes and it took a couple of weeks to complete. I went out in the bitter cold Chicago weather to get the stamps and helped her put them on the envelopes. As I was leaving the hotel to mail them, I spotted a “mail chute” in the hallway right outside our door. I had my coat on and was ready to walk to the John Hancock Building where there was a Post Office, but when I saw the clear glass mail chute with a Gold Mail Sign on it, I was thrilled, how convenient!
I ran back in and said, "Jill I don't have to leave the hotel because we can mail the cards right here in the hallway." It was freezing outside so this was perfect. I gathered up all the forty something cards and proceeded to drop them down the chute. Near the last ones, I noticed that one was stuck between the floors so I called the front desk and reported what happened. She said she would send a technician up to check on it. We left the next day and a week later asked if anyone received the Thank You Note. The answer was “No” so I started worrying and called the hotel. I was put on hold a couple of times and then someone told me that the Hotel Manager would call me back. The next day the manager called and apologized for the inconvenience and said, "Mrs. Bevilacqua, we are trying to find out how you got the mail down the mail chutes. They have been sealed for over twenty years and there is a sign on top stating so." I replied that I never saw a sign and the chute was open. I explained that I was able to get five or six cards in at the same time. He apologized again and said they were going to get a construction person to see what could be done, but he felt they were permanently stuck between floors and it would require a major renovation to get them out. Well, Jill wanted to kill me, but I had no idea it didn't work. I was excited and impressed to see mail chutes in the hallways because it reminded me of the old fashioned up class hotels you see on the old movies.
I personally want to apologize to anyone who was missed on the Thank You List, and also for some of you who received two Thank You Notes. We wrote Thank You Notes again and we do not know if we missed anyone.
Jill wants to emphasize how much your prayers and support have helped her; you will be in her heart forever! She thanks each and every one of you each night as she kneels down to pray.
I am happy to report that Jill's blood work this week came back in the normal range. She will have to be careful for a long time, but this is good news. Our next visit to Northwestern Memorial Hospital in Chicago will be in May.
Love,
Doreen
When we left for the first round of chemotherapy and the initial stem cell collection, Jill brought a list of names of people that she wanted to thank for their prayers and donations. It was very difficult for her to write these cards because she was having tremors and her handwriting was difficult to read. I had offered to help, but she insisted that she wanted to do them herself. Jill spent hours finding inspirational quotes and quotes from the Bible that she inserted into every card. She wrote more than forty Thank You Notes and it took a couple of weeks to complete. I went out in the bitter cold Chicago weather to get the stamps and helped her put them on the envelopes. As I was leaving the hotel to mail them, I spotted a “mail chute” in the hallway right outside our door. I had my coat on and was ready to walk to the John Hancock Building where there was a Post Office, but when I saw the clear glass mail chute with a Gold Mail Sign on it, I was thrilled, how convenient!
I ran back in and said, "Jill I don't have to leave the hotel because we can mail the cards right here in the hallway." It was freezing outside so this was perfect. I gathered up all the forty something cards and proceeded to drop them down the chute. Near the last ones, I noticed that one was stuck between the floors so I called the front desk and reported what happened. She said she would send a technician up to check on it. We left the next day and a week later asked if anyone received the Thank You Note. The answer was “No” so I started worrying and called the hotel. I was put on hold a couple of times and then someone told me that the Hotel Manager would call me back. The next day the manager called and apologized for the inconvenience and said, "Mrs. Bevilacqua, we are trying to find out how you got the mail down the mail chutes. They have been sealed for over twenty years and there is a sign on top stating so." I replied that I never saw a sign and the chute was open. I explained that I was able to get five or six cards in at the same time. He apologized again and said they were going to get a construction person to see what could be done, but he felt they were permanently stuck between floors and it would require a major renovation to get them out. Well, Jill wanted to kill me, but I had no idea it didn't work. I was excited and impressed to see mail chutes in the hallways because it reminded me of the old fashioned up class hotels you see on the old movies.
I personally want to apologize to anyone who was missed on the Thank You List, and also for some of you who received two Thank You Notes. We wrote Thank You Notes again and we do not know if we missed anyone.
Jill wants to emphasize how much your prayers and support have helped her; you will be in her heart forever! She thanks each and every one of you each night as she kneels down to pray.
I am happy to report that Jill's blood work this week came back in the normal range. She will have to be careful for a long time, but this is good news. Our next visit to Northwestern Memorial Hospital in Chicago will be in May.
Love,
Doreen
DAY 33 - TUESDAY
February 24, 2009: It has been almost a week since the last entry, but I feel at this time, that unless there is something happening or some progress to report it would be giving you information that is inconclusive.
Yesterday, Jill went to the lab for her third blood draw since she arrived home. The results will be in tomorrow so there will be an update following this one. Last week, Jill passed out completely, but yesterday she was fine. She reported feeling tired in the afternoon, but other than that she did very well. She was afraid that it might happen again but thank God everything was good. The technician even sang to her. She was so nice and compassionate.
Tomorrow she goes to the cardiologist to see if there is any connection between the passing out and her heart. Dr Burt suggested that she wear a monitor to detect any abnormalities. Since our family has such a strong history of heart problems and Cardiomyopathy, it is better to have this episode checked out further.
Jill's eyebrows and eyelashes have fallen out too. The chemotherapy that she was given when she went back for the transplant caused whatever was left to fall out. She looks frail, but her spirits are up. This is a difficult time because of the restrictions she has to follow. I know that she can't wait to be able to go out again. She has been cold and sneezing a lot which I think is from allergies. I can't wait for the warm weather so she can sit outside again.
Love
Doreen
Yesterday, Jill went to the lab for her third blood draw since she arrived home. The results will be in tomorrow so there will be an update following this one. Last week, Jill passed out completely, but yesterday she was fine. She reported feeling tired in the afternoon, but other than that she did very well. She was afraid that it might happen again but thank God everything was good. The technician even sang to her. She was so nice and compassionate.
Tomorrow she goes to the cardiologist to see if there is any connection between the passing out and her heart. Dr Burt suggested that she wear a monitor to detect any abnormalities. Since our family has such a strong history of heart problems and Cardiomyopathy, it is better to have this episode checked out further.
Jill's eyebrows and eyelashes have fallen out too. The chemotherapy that she was given when she went back for the transplant caused whatever was left to fall out. She looks frail, but her spirits are up. This is a difficult time because of the restrictions she has to follow. I know that she can't wait to be able to go out again. She has been cold and sneezing a lot which I think is from allergies. I can't wait for the warm weather so she can sit outside again.
Love
Doreen
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