August 8, 2009: Hi Everyone, Last week Jill had a follow-up appointment with Dr. Burt and the neurologist, etc. at Northwestern Memorial Hospital in Chicago. Outwardly, her progress seemed to be extremely slow so that is why we did not post any progress reports since April 26th. After undergoing extensive testing, the neurologist said that there is an improvement with the "Execution of the Walk". He explained that Jill starts out better but there is weakness in her left leg and ankle. He suggested she go for physical therapy to try to strengthen the muscles. The doctors are pleased with Jill’s progress and said that right now her immune system is confused because a lot is going on. It will take longer for her memory to recover. He doesn't know how much until the 2 years pass. Her balance is also better. We look forward to improvements as the months pass. It will take 2 years for it to reach completion. Jill is so blessed to be in this trial because it gives her hope and will stop any progression of the disease. She is happy and that is all that matter! She thinks she can do more than she can, but that is a good sign. We pray and wait for God to direct the stem cells to work their miracles. Jill and I thank each of you for your continued support and prayers.
Our Heartfelt Thanks and Love,
Doreen
Saturday, August 8, 2009
Sunday, April 26, 2009
DAY 94 - SUNDAY
April 26, 2009: Jill's appointment with Dr. Burt and Dr. Balabanov, at Northwestern in Chicago, went well. The MRI showed no new lesions. Both doctors were extremely pleased that Jill looked well and even the receptionist remarked about her appearance and said that she looked so much healthier.
Jill walked the 500 meters unassisted and I did notice that she seemed much steadier than before the transplant. Her color has greatly improved and her tremors have decreased. Dr Balabanov told us that we will see a vast difference in 6 months.
There are cells dying and new ones rejuvenating constantly. A lot is going on inside Jill that we can't see. I feel like something new is continually replacing something that is broken. Remember, stem cells are very smart and know exactly what to do! It’s a mystery for us to understand; they repair what needs to be fixed!
Dr Burt's office has been overwhelmed with people wanting to participate in the trial. The Stem Cell Transplant is the only thing that will stop the progression of this debilitating disease. Jill has received e-mails from MS sufferers all over the US wishing her well and they are all praying for her recovery. They all say that this is giving them hope that they never had before.
There are no words to express how much Jill appreciates everything that is being done for her. This has been and continues to be an emotional and grateful time in our lives. To know how much support Jill has from everyone out there makes this journey so much easier for her. Jill picked out a quote: "No one is more cherished in this world than someone who lightens the burden of another." This is what all of you have done for her!
Our Heartfelt Thanks and Love,
Jill and Doreen
Jill walked the 500 meters unassisted and I did notice that she seemed much steadier than before the transplant. Her color has greatly improved and her tremors have decreased. Dr Balabanov told us that we will see a vast difference in 6 months.
There are cells dying and new ones rejuvenating constantly. A lot is going on inside Jill that we can't see. I feel like something new is continually replacing something that is broken. Remember, stem cells are very smart and know exactly what to do! It’s a mystery for us to understand; they repair what needs to be fixed!
Dr Burt's office has been overwhelmed with people wanting to participate in the trial. The Stem Cell Transplant is the only thing that will stop the progression of this debilitating disease. Jill has received e-mails from MS sufferers all over the US wishing her well and they are all praying for her recovery. They all say that this is giving them hope that they never had before.
There are no words to express how much Jill appreciates everything that is being done for her. This has been and continues to be an emotional and grateful time in our lives. To know how much support Jill has from everyone out there makes this journey so much easier for her. Jill picked out a quote: "No one is more cherished in this world than someone who lightens the burden of another." This is what all of you have done for her!
Our Heartfelt Thanks and Love,
Jill and Doreen
Thursday, April 9, 2009
DAY 77 - THURSDAY
April 9, 2009: Hi Everyone, last Thursday Jill had blood work done and a chest X Ray. All of her blood work has been normal up till now. Ever since the passing out incident and the frequent dizzy spells, the doctors are still trying to find the cause. Hence, several tests for abnormalities were ordered since these symptoms are not common in transplant patients.
Jill may have uncovered the cause herself. She had to get a refill for her meds and she started reading the side effects. On two of the meds, it cautioned about dizziness and fainting. It also stated sudden death in the precautions part of the print out. Since her grandmother died of sudden death at age 35 and her aunt and cousin both have Hypertrophic Cardiomyopathy (sudden death), Dr Burt said she should stop 2 of the medications immediately. She also had a rash on her legs and arms, an allergic reaction to the medication. She didn't report the rash because she thought it was from the intense chemotherapy. The side effects also caution about extreme fatigue, which has been a constant battle for her.
Jill is off the medications and it should start to help eliminate some of the side effects. Her spirits are great and she is anxiously waiting for the transplant to show all it's magic.
On a positive note, I just want to reiterate some of the improvements Jill’s has already experienced since her stem cell transplant on January 22, 2009:
Before the Stem Cell Transplant, Jill was on the verge of going from Relapsing Remitting MS to Secondary Progressive MS. Now that prognosis has changed!
There was an immediate improvement in her thinking. She said she felt as if a “cloud was lifted” and she started remembering things.
Her tremors have greatly lessened; I hardly see them anymore.
Jill looks forward to her future now, whereas before she was so scared of what tomorrow might bring (everyday, I watched her getting worse).
She was so depressed; she had to take 2 Xanax a day to stop her crying. Now she only cries when she is happy!
We hope and pray that all will go well from here. In ten days, she'll be back in Chicago and we will post the outcome of her visit as soon as we know.
Thanks for all the good wishes and prayers.
Love,
Doreen
Jill may have uncovered the cause herself. She had to get a refill for her meds and she started reading the side effects. On two of the meds, it cautioned about dizziness and fainting. It also stated sudden death in the precautions part of the print out. Since her grandmother died of sudden death at age 35 and her aunt and cousin both have Hypertrophic Cardiomyopathy (sudden death), Dr Burt said she should stop 2 of the medications immediately. She also had a rash on her legs and arms, an allergic reaction to the medication. She didn't report the rash because she thought it was from the intense chemotherapy. The side effects also caution about extreme fatigue, which has been a constant battle for her.
Jill is off the medications and it should start to help eliminate some of the side effects. Her spirits are great and she is anxiously waiting for the transplant to show all it's magic.
On a positive note, I just want to reiterate some of the improvements Jill’s has already experienced since her stem cell transplant on January 22, 2009:
Before the Stem Cell Transplant, Jill was on the verge of going from Relapsing Remitting MS to Secondary Progressive MS. Now that prognosis has changed!
There was an immediate improvement in her thinking. She said she felt as if a “cloud was lifted” and she started remembering things.
Her tremors have greatly lessened; I hardly see them anymore.
Jill looks forward to her future now, whereas before she was so scared of what tomorrow might bring (everyday, I watched her getting worse).
She was so depressed; she had to take 2 Xanax a day to stop her crying. Now she only cries when she is happy!
We hope and pray that all will go well from here. In ten days, she'll be back in Chicago and we will post the outcome of her visit as soon as we know.
Thanks for all the good wishes and prayers.
Love,
Doreen
Friday, March 20, 2009
DAY 57 - FRIDAY
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
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 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
Wednesday, February 18, 2009
DAY 27 - WEDNESDAY
February 18, 2009: Hello Everyone, Jill went for her second blood test on Monday. The technician started drawing the blood and the vein must have collapsed because nothing came out. Jill started feeling nauseous and dizzy. Her color changed and the technician went to get Ernie (her father). She started feeling hot and took her mask, gloves, and headscarf off. Ernie tried to help her reach the bathroom but she collapsed while walking to the bathroom. The technician and Ernie lifted her on to a table to lay her down. She was out for about one and a half minutes. All she remembers is walking and then opening her eyes to find she was lying on a table. She immediately sat up and began vomiting. Ernie said she was ice cold and he wanted to call 911, but the technician said it happens all the time.
I notified Dr Burt who wants her to see a cardiologist asap because of the family history of Cardiomyopathy (sudden death).
Her blood results are in and her platelet count is still high 665. Her white blood count is low 3.6. A few other counts also came back low.
It may take some time for everything to return to normal. She came home and slept for three hours. She has been completely exhausted and she say's her memory is a little hazy. This will all pass soon and she'll be on track again. She's a strong young woman and compared to the transplant and what she went through this is nothing.
BTW Today is Jill's Birthday! Her new birthday is the day she had the Stem Cell Transplant: January 22, 2009.
Love,
Doreen
I notified Dr Burt who wants her to see a cardiologist asap because of the family history of Cardiomyopathy (sudden death).
Her blood results are in and her platelet count is still high 665. Her white blood count is low 3.6. A few other counts also came back low.
It may take some time for everything to return to normal. She came home and slept for three hours. She has been completely exhausted and she say's her memory is a little hazy. This will all pass soon and she'll be on track again. She's a strong young woman and compared to the transplant and what she went through this is nothing.
BTW Today is Jill's Birthday! Her new birthday is the day she had the Stem Cell Transplant: January 22, 2009.
Love,
Doreen
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