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
Thursday, February 12, 2009
DAY 21 - THURSDAY
February 11, 2009: Jill received a call about her blood tests from Dr Stivala. He said that her platelets were elevated to 665. Normal values are 140-390. I contacted Kate, Dr Burt's nurse practitioner and she said that all her levels were good and that her platelet count would go down in time.
She is definitely feeling better because she wants to go places again and she hasn't had the strength to do that for a long time.
Dr Burt's office is receiving hundreds of calls inquiring about Stem Cell Transplants for MS. The broadcast on CBS News is bringing hope to others suffering from this devastating disease.
Love and Hope to All,
Doreen
She is definitely feeling better because she wants to go places again and she hasn't had the strength to do that for a long time.
Dr Burt's office is receiving hundreds of calls inquiring about Stem Cell Transplants for MS. The broadcast on CBS News is bringing hope to others suffering from this devastating disease.
Love and Hope to All,
Doreen
Wednesday, February 11, 2009
DAY 20 - WEDNESDAY
February 11, 2009: Hi Everyone: This is just to let you know that everything is progressing better than as expected. First, our flight back home on Monday, 2/9 was great. We landed one half hour earlier and Ernie (Jill's father) and Aunt Doris were waiting for us by the carousel. We had the first row in the plane and were assisted from boarding to departing, and the attendant stayed with Jill in the wheelchair until she got into the car at the curb. This was a first. Usually, they wheel you to get your luggage and then take the wheel chair and leave you there. We flew home Jet Blue because it was a lot less for a one way ticket and we couldn't book round trip when we left because of the uncertainty of the departure date.
We had to get up early to leave and although Jill was a little tired from the flight, she was better than I had expected. She watched the TV on the plane and actually stayed up during the flight. On the way down Jill slept for almost an hour and was cold. She was a little steadier than before the SCT (stem cell transplant).
Don't forget, Jill has the RSV virus and it knocks you out. Her stomach was hurting her because of the constant coughing caused by this virus. You feel as though someone has punched you in the stomach. Her coughing has lessened almost entirely, and her feeling of exhaustion is much less. She is on no meds for the MS except the anxiety medicine and the Provigil, which she hasn't taken since the transplant. This is wonderful. Jill always hated taking medications and would have preferred to treat the disease holistically, which she did for the first 3 1/2 years. Unfortunately the turn the MS took didn't allow this treatment to exist anymore.
Jill had an appointment to see her PCP (Dr G Stivala), yesterday (2/10) at 12 pm. She was the last appointment so that she would not be in contact with other sick patients. Her mask and gloves were on and Dr Stivala was so happy to see her. He has been a constant support for Jill during this time. He was instrumental in getting her to see Dr Richard Burt. Sue, his office manager and Dr Burt's office manager, Kim, did all the paper work necessary for the first evaluation. It took over three months for this to happen.
He made all the arrangements for the weekly blood draws she will have to have during this critical time home. Dr. Stivala spoke to a supervisor so everything would go smoothly and the results will be sent to him and Dr Burt as soon as they are in. Jill will also be faxed the results. I will keep everyone informed as the results are gathered so you can follow along.
Our Journey Begins back home on the Road To Health!
Love to All,
Doreen
PS: Yesterday morning my son Frank called and told us to watch channel 2 News because a story about MS and Stem Cells was going to air. We waited for it to come on and this 22 year old explained how he was helped by a Stem Cell Transplant at Northwestern Medical Hospital in Chicago by Dr Richard Burt in 2006. He is symptom-free and feels as though he doesn't have the MS anymore. Technically, he still does, but his body doesn't know it. He was lifting weights in a gym and is not facing being in a wheel chair anymore. God Bless Him and everyone else. The study has opened up to many more MS patients. Now we have to spread the good news! Here is the link to this story (copy & paste in your browser): http://www.cbsnews.com/stories/2009/02/10/earlyshow/health/main4789551.shtml
We had to get up early to leave and although Jill was a little tired from the flight, she was better than I had expected. She watched the TV on the plane and actually stayed up during the flight. On the way down Jill slept for almost an hour and was cold. She was a little steadier than before the SCT (stem cell transplant).
Don't forget, Jill has the RSV virus and it knocks you out. Her stomach was hurting her because of the constant coughing caused by this virus. You feel as though someone has punched you in the stomach. Her coughing has lessened almost entirely, and her feeling of exhaustion is much less. She is on no meds for the MS except the anxiety medicine and the Provigil, which she hasn't taken since the transplant. This is wonderful. Jill always hated taking medications and would have preferred to treat the disease holistically, which she did for the first 3 1/2 years. Unfortunately the turn the MS took didn't allow this treatment to exist anymore.
Jill had an appointment to see her PCP (Dr G Stivala), yesterday (2/10) at 12 pm. She was the last appointment so that she would not be in contact with other sick patients. Her mask and gloves were on and Dr Stivala was so happy to see her. He has been a constant support for Jill during this time. He was instrumental in getting her to see Dr Richard Burt. Sue, his office manager and Dr Burt's office manager, Kim, did all the paper work necessary for the first evaluation. It took over three months for this to happen.
He made all the arrangements for the weekly blood draws she will have to have during this critical time home. Dr. Stivala spoke to a supervisor so everything would go smoothly and the results will be sent to him and Dr Burt as soon as they are in. Jill will also be faxed the results. I will keep everyone informed as the results are gathered so you can follow along.
Our Journey Begins back home on the Road To Health!
Love to All,
Doreen
PS: Yesterday morning my son Frank called and told us to watch channel 2 News because a story about MS and Stem Cells was going to air. We waited for it to come on and this 22 year old explained how he was helped by a Stem Cell Transplant at Northwestern Medical Hospital in Chicago by Dr Richard Burt in 2006. He is symptom-free and feels as though he doesn't have the MS anymore. Technically, he still does, but his body doesn't know it. He was lifting weights in a gym and is not facing being in a wheel chair anymore. God Bless Him and everyone else. The study has opened up to many more MS patients. Now we have to spread the good news! Here is the link to this story (copy & paste in your browser): http://www.cbsnews.com/stories/2009/02/10/earlyshow/health/main4789551.shtml
Thursday, February 5, 2009
DAY 14 - THURSDAY
February 5, 2009: Today Jill received a phone call requesting her to go for a final Chest X-Ray. She is officially cleared to go home.
There are a lot of restrictions she will have to follow for at least one year. The first three months are the most dangerous as far as catching any viruses or infections. She will be tired and will have to recognize her limits. She has to avoid large crowds for at least 3 months She cannot go to restaurants, or malls, movie theaters or anywhere that has heavy traffic. Mask and gloves are to be worn when going to a clinic for blood draws or hospitals.
There will not be daily blogs from here on in, but there will be updates about what she is experiencing and what new developments occur. She will keep everyone informed about any changes she has for the good and any setbacks that might occur. Any new tests that are ordered will be posted with results.
Remember she is not on any medication for her MS. She is only on medications for the stem cell transplant.
I am sure she will have physical therapy to help rebuild muscles and improve balance.
Thanks for your love and support.
Love,
Doreen
There are a lot of restrictions she will have to follow for at least one year. The first three months are the most dangerous as far as catching any viruses or infections. She will be tired and will have to recognize her limits. She has to avoid large crowds for at least 3 months She cannot go to restaurants, or malls, movie theaters or anywhere that has heavy traffic. Mask and gloves are to be worn when going to a clinic for blood draws or hospitals.
There will not be daily blogs from here on in, but there will be updates about what she is experiencing and what new developments occur. She will keep everyone informed about any changes she has for the good and any setbacks that might occur. Any new tests that are ordered will be posted with results.
Remember she is not on any medication for her MS. She is only on medications for the stem cell transplant.
I am sure she will have physical therapy to help rebuild muscles and improve balance.
Thanks for your love and support.
Love,
Doreen
DAY 13 - WEDNESDAY
February 4, 2009: Jill is still coughing but it has changed to a looser cough instead of dry one. Her breathing is much better though. She saw Dr Burt at 4:30 p m after having her blood drawn in the lab. He seemed very pleased with her in spite of the RSV. He asked her if she noticed any difference from before the transplant and now and she did say that she feels stronger and isn't as tired, which is amazing for a person with MS. Most of the time being exhausted is part of their every day routine.
I don't know if I am imagining it or not , but I think that she is speaking better. Her speech is not as delayed and she is thinking clearer. I know it is much too early to tell.
Love
Doreen
I don't know if I am imagining it or not , but I think that she is speaking better. Her speech is not as delayed and she is thinking clearer. I know it is much too early to tell.
Love
Doreen
Tuesday, February 3, 2009
DAY 12 - TUESDAY
February 3, 2009: Today, Jill rested and caught up on her e-mail messages.
She is still coughing and will see the doctor tomorrow.
Finally a day with no interruptions!
Jill had a good nights sleep last night and started reading a book today.
Love to ALL
Doreen
She is still coughing and will see the doctor tomorrow.
Finally a day with no interruptions!
Jill had a good nights sleep last night and started reading a book today.
Love to ALL
Doreen
DAY 11 - MONDAY
February 2, 2009: Today was wonderful. I (Jill) am finally up to writing the blog myself. I intended to yesterday, but by the end of the day I was too tired. This morning I got the wonderful news that I would be discharged from the hospital today. Dr. Burt delivered the news and Dr. Testori followed with guidelines for me to follow and wrote 5 prescriptions for me fill. Some I will be taking for up to one year. I also received the wonderful news that I wouldn't have to leave the hospital with the PICC line still in. I was afraid when they started disinfecting the area and shut my eyes. They told me to take a deep breath and started pulling an 18 inch long spaghetti looking like tube out of my arm. Surprisingly I didn't feel a thing. What a wonderful feeling it was taking a shower without a line hanging out of my arm. I had my final breathing treatment and by the time my Mother got back from the pharmacy I was all packed and ready to leave.
On Wednesday I will have my blood counts checked and am scheduled to see Dr. Burt at 4:30 p.m. I am scheduled for the last appointment of the day so I will not expose any other patients to the RSV. I have to report any changes in my cough and asthma immediately.
Love,
Jill
On Wednesday I will have my blood counts checked and am scheduled to see Dr. Burt at 4:30 p.m. I am scheduled for the last appointment of the day so I will not expose any other patients to the RSV. I have to report any changes in my cough and asthma immediately.
Love,
Jill
Sunday, February 1, 2009
DAY 10 - SUNDAY
February 1, 2009: Today was very promising. Jill's blood counts are climbing. Her WBC (which Dr Burt calls the police force) are up to 5.8 from 2.7. The platelet count is up from 117 to 212. This is amazing and it all happened within one day. She has antibiotics only by pills now and is disconnected from the IV's. The line is to stay in place for now in case she needs any transfusions. She might be released to the Chicago area as early as Tuesday. If her counts continue to climb there is no reason to keep her even though she has RSV. Her new immune system will fight the virus on it's own. There were three patients on this floor that had RSV.
All hospitals carry germs, so I feel it might be better for her to stay at the apartment where she is not exposed to anyone.
Her cough was a lot better today, but is still there. She continues to have the breathing treatments 3 times a day. I keep asking her if she is thinking clearer yet because it is one of the first signs that most MS patients report. They feel like a cloud has been lifted and they are no longer in a fog. I also see her walking a bit better although Dr Testori said it takes six months to see improvements.
I know that there are a lot of friends out there reading this blog that have Multiple Sclerosis. I hope Joyce is keeping up to date with Jill's Blog. I can't wait to report all the improvements as they happen. It has taken a lot out of her, but watching the disease take over her life was much harder. I have a lot of confidence in this transplant and don't forget she may not have to ever take shots again. She has been off the Copaxone (daily injections) since September. The Interferon shot Rebif was three times a week.
Imagine having to sit on each step so you can get down the stairs.
Imagine not being able to hold something with one hand because you need two hands to help with your balance.
Imagine the fear of a new day because you don't know what to expect when you wake up every day.
Imagine not knowing what day or year it is and you ask several times a day.
Imagine being afraid to fall every time you shower.
Imagine not wondering if where you are going has a lot of steps that you can't climb.
Imagine the fear of someone bumping into you causing you to fall.
Imagine the whole world looking at you and wondering if you were drunk.
Imagine that your hands, legs, head, or hands shake and you have no control.
Imagine exhaustion that is beyond description which you struggle with every day
NOW IMAGINE THAT ALL THESE THINGS GO AWAY AND YOU ARE LIKE A NORMAL PERSON, THAT IS A DREAM COME TRUE!
Love
Doreen
All hospitals carry germs, so I feel it might be better for her to stay at the apartment where she is not exposed to anyone.
Her cough was a lot better today, but is still there. She continues to have the breathing treatments 3 times a day. I keep asking her if she is thinking clearer yet because it is one of the first signs that most MS patients report. They feel like a cloud has been lifted and they are no longer in a fog. I also see her walking a bit better although Dr Testori said it takes six months to see improvements.
I know that there are a lot of friends out there reading this blog that have Multiple Sclerosis. I hope Joyce is keeping up to date with Jill's Blog. I can't wait to report all the improvements as they happen. It has taken a lot out of her, but watching the disease take over her life was much harder. I have a lot of confidence in this transplant and don't forget she may not have to ever take shots again. She has been off the Copaxone (daily injections) since September. The Interferon shot Rebif was three times a week.
Imagine having to sit on each step so you can get down the stairs.
Imagine not being able to hold something with one hand because you need two hands to help with your balance.
Imagine the fear of a new day because you don't know what to expect when you wake up every day.
Imagine not knowing what day or year it is and you ask several times a day.
Imagine being afraid to fall every time you shower.
Imagine not wondering if where you are going has a lot of steps that you can't climb.
Imagine the fear of someone bumping into you causing you to fall.
Imagine the whole world looking at you and wondering if you were drunk.
Imagine that your hands, legs, head, or hands shake and you have no control.
Imagine exhaustion that is beyond description which you struggle with every day
NOW IMAGINE THAT ALL THESE THINGS GO AWAY AND YOU ARE LIKE A NORMAL PERSON, THAT IS A DREAM COME TRUE!
Love
Doreen
Saturday, January 31, 2009
DAY 9 - SATURDAY
January 31, 2009: The results of the CT showed upper respiratory inflammation which is common for RSV. The doctor was checking for pneumonia but thankfully the bottom portion of her lungs are clear. They did however find calcium between the vertebrae It seems that every time one test rules out one thing they discover another. I am sure that all of us would discover many things wrong with us if we had all the tests that Jill had.
Her white count went up and she is coughing a little less. The doctor said she will be contagious for one month after the coughing stops. He stresses that this disease is common and most of us have it and don't know it. It is diagnosed as a really bad cold. Since it affects the upper respiratory bronchi, it also magnifies asthma. Jill's asthma has been horrible and was not helped by the inhaler she takes daily. She had been using it every couple of hours, when it is supposed to be used only four times a day. That is why they put her on breathing treatments.
I know this scared Jill especially when her blood pressure dropped. She kept asking "WHAT DOES THAT MEAN"? The outcome could have been worse so I guess we have to consider that a blessing
This is one more hurdle that Jill has to get through. We will have to stay in the Chicago area 8 days after she is released.
I have to admire the strength that she has. Staying in the hospital for over three weeks takes a lot out of a person. It is something a lot of us will never have to go through. The Chemo is so hard and to top it off she had to get this. Her spirits are still high even though I can see this virus has worn her out.
It is so funny, the doctors come in covered from head to toe. Ernie and I have to keep masks on in and outside of the room. We wash our hands constantly and have to wear gowns to cover our clothes so no droplets get on them.
I couldn't sleep with the stupid mask on. I had to keep using my inhaler too. I took it off when I was sleeping. Tonight I am going to wait until Jill gets her sleeping pill and then I am going to the apartment to sleep. It's just too hard to keep that thing on when you sleep, besides she said all I do is talk in my sleep.
I keep waking up in a cold sweat too. I think Ernie wants to have the test for RSV when he gets home. He is the one that was sick before we left. He was coughing like a beast.
How is BELLA, we miss her
Love,
Doreen
Her white count went up and she is coughing a little less. The doctor said she will be contagious for one month after the coughing stops. He stresses that this disease is common and most of us have it and don't know it. It is diagnosed as a really bad cold. Since it affects the upper respiratory bronchi, it also magnifies asthma. Jill's asthma has been horrible and was not helped by the inhaler she takes daily. She had been using it every couple of hours, when it is supposed to be used only four times a day. That is why they put her on breathing treatments.
I know this scared Jill especially when her blood pressure dropped. She kept asking "WHAT DOES THAT MEAN"? The outcome could have been worse so I guess we have to consider that a blessing
This is one more hurdle that Jill has to get through. We will have to stay in the Chicago area 8 days after she is released.
I have to admire the strength that she has. Staying in the hospital for over three weeks takes a lot out of a person. It is something a lot of us will never have to go through. The Chemo is so hard and to top it off she had to get this. Her spirits are still high even though I can see this virus has worn her out.
It is so funny, the doctors come in covered from head to toe. Ernie and I have to keep masks on in and outside of the room. We wash our hands constantly and have to wear gowns to cover our clothes so no droplets get on them.
I couldn't sleep with the stupid mask on. I had to keep using my inhaler too. I took it off when I was sleeping. Tonight I am going to wait until Jill gets her sleeping pill and then I am going to the apartment to sleep. It's just too hard to keep that thing on when you sleep, besides she said all I do is talk in my sleep.
I keep waking up in a cold sweat too. I think Ernie wants to have the test for RSV when he gets home. He is the one that was sick before we left. He was coughing like a beast.
How is BELLA, we miss her
Love,
Doreen
Friday, January 30, 2009
DAY 8 - FRIDAY
January 30, 2009: After a sleepless night again and endless coughing, another test was taken to identify a suspected viral infection. At about 2 this afternoon the two infectious disease doctors came in the room with gowns, masks, and gloves on. This time the masks were different than the ones they usually wear.
It was not a good sign. The virus was identified as RSV, it is an upper respiratory virus that can develop into pneumonia. It is dangerous for small children, the elderly, and immune suppressed adults. In some cases it can cause death in these groups. There is no treatment for this virus. It just has to run it's course which takes up to three weeks. Jill is scheduled for a cat scan to see if there is any sign of pneumonia. Jill's white count is up to 0.4 today which means that the stem cells are definitely growing.
Ernie and I have to wear the gown, mask, and gloves too. The virus can be spread by droplets from the cough that gets on your clothes. RSV can live for a couple of days on contact surfaces and clothing. They do not want this to spread to anyone on this floor. Extreme caution is taken at this time.
The outlook for Jill is that she will recover as her immune system rebuilds itself. It will probably delay coming home as scheduled. I don't think she can go back to the apartment with this cough even if her counts go up. The breathing treatments are helping. All of us (Ernie, Jill, and myself ) cannot come into contact with our little grandchildren for three weeks. (We can't wait to see them) I guess Mark will just have to let us see them on the Web Cam. We saw Isabelle last night. It felt so good to see her. We were all smiling
I will keep you informed about the results from the cat scan as soon we find out
Love
Doreen
It was not a good sign. The virus was identified as RSV, it is an upper respiratory virus that can develop into pneumonia. It is dangerous for small children, the elderly, and immune suppressed adults. In some cases it can cause death in these groups. There is no treatment for this virus. It just has to run it's course which takes up to three weeks. Jill is scheduled for a cat scan to see if there is any sign of pneumonia. Jill's white count is up to 0.4 today which means that the stem cells are definitely growing.
Ernie and I have to wear the gown, mask, and gloves too. The virus can be spread by droplets from the cough that gets on your clothes. RSV can live for a couple of days on contact surfaces and clothing. They do not want this to spread to anyone on this floor. Extreme caution is taken at this time.
The outlook for Jill is that she will recover as her immune system rebuilds itself. It will probably delay coming home as scheduled. I don't think she can go back to the apartment with this cough even if her counts go up. The breathing treatments are helping. All of us (Ernie, Jill, and myself ) cannot come into contact with our little grandchildren for three weeks. (We can't wait to see them) I guess Mark will just have to let us see them on the Web Cam. We saw Isabelle last night. It felt so good to see her. We were all smiling
I will keep you informed about the results from the cat scan as soon we find out
Love
Doreen
Thursday, January 29, 2009
DAY 7: THURSDAY
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
She was able to video chat with Mark, Nina, & Isabelle tonight. That made her very happy.
Love to all,
Doreen
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
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