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
Sunday, January 25, 2009
DAY 3
January 25, 2009: Jill is still feeling the effects from the chemotherapy. She is running a temperature, and she broke out with a rash all over her upper body. It looks like a butterfly rash because of the shape, but it is also on top of her head like eczema. It is very itchy so she is back on prednisone for the inflammation. It was given in the IV line so it would take effect immediately. She is extremely uncomfortable and very tired.
Jill keeps trying to sleep but she is checked around the clock which makes it almost impossible. Her counts continue to fall. Today is only day three although it seems much longer. On day five, which is Tuesday, things should start to turn around.
The girl in the room next to Jill that also had the transplant the same day for scleroderma feels a lot better. Her mother said if you touch her skin you can actually squeeze it a little and see little folds. It was like leather only three days ago. The symptoms for that disease are externally visible, so you can see results right away. MS affects the myelin sheath in the brain, so it takes much longer.
She thanks everyone for their prayers and hopes she will be up to writing soon.
Love
Doreen
Jill keeps trying to sleep but she is checked around the clock which makes it almost impossible. Her counts continue to fall. Today is only day three although it seems much longer. On day five, which is Tuesday, things should start to turn around.
The girl in the room next to Jill that also had the transplant the same day for scleroderma feels a lot better. Her mother said if you touch her skin you can actually squeeze it a little and see little folds. It was like leather only three days ago. The symptoms for that disease are externally visible, so you can see results right away. MS affects the myelin sheath in the brain, so it takes much longer.
She thanks everyone for their prayers and hopes she will be up to writing soon.
Love
Doreen
Saturday, January 24, 2009
DAY 2
January 24, 2009: Jill had a bad afternoon. She started to get ready for a shower and all of a sudden she started to go into a cold sweat. Then she vomited and had pains in her stomach. The nurse was about to cover the PICC Line with plastic so it wouldn't get wet in the shower but Jill was just too weak to stand up or sit down for the shower. Then she started getting chills so she went back to bed. She is sleeping now (poor thing).
I think that between the chemotherapy and her blood counts still falling, it just is taking all of her energy. All of this is considered normal for the procedure she went through. Her WBC is 0.3. Her platelet count is 60 and something called the Absolute Neutrophils is too low to calculate.
She is very susceptible to infections while these counts are so low. If her platelet count goes below 10 they will transfuse.
She has diarrhea too, which knocks you out. Stool samples are taken every time she goes. If the results are negative three times in a row, then they rule out virus or infection. This morning all her three tests were negative, so it is a result of the chemotherapy.
We have to be patient and soon she will be doing better. I told her this is a small price to pay in exchange for better health.
Love
Doreen
I think that between the chemotherapy and her blood counts still falling, it just is taking all of her energy. All of this is considered normal for the procedure she went through. Her WBC is 0.3. Her platelet count is 60 and something called the Absolute Neutrophils is too low to calculate.
She is very susceptible to infections while these counts are so low. If her platelet count goes below 10 they will transfuse.
She has diarrhea too, which knocks you out. Stool samples are taken every time she goes. If the results are negative three times in a row, then they rule out virus or infection. This morning all her three tests were negative, so it is a result of the chemotherapy.
We have to be patient and soon she will be doing better. I told her this is a small price to pay in exchange for better health.
Love
Doreen
Friday, January 23, 2009
Day 1
January 23, 2009 – From now on the days are counted from the day of the stem cell infusion. Yesterday was day 0.
Jill's white count is now 0.3, which is very low. Her platelet's were 279 and are now 79. The doctor's keep telling her not to worry that all of this is normal. The fluid retention brought her weight up to 133 but now it is 120. She is not eating again because she is very weak. She gets full from just a few bites. All she keeps asking is, "Can I sleep?" Her spirits are up and she is just waiting to feel better. She has to take one day at a time and it will happen. On about day 8 to 12 the new stem cells should engraft. You will know by the blood counts. They will go up dramatically. On day 5 she will have neupogen shots to stimulate the growth of the stem cells.
The only problem seems to be her asthma, but it could be her MS. A swallow study is ordered for Monday.
This study will examine the mechanisms of the throat.
She is having a breathing treatment now and I hope it gets her through the night.
Love to all
Jill and Doreen
Jill's white count is now 0.3, which is very low. Her platelet's were 279 and are now 79. The doctor's keep telling her not to worry that all of this is normal. The fluid retention brought her weight up to 133 but now it is 120. She is not eating again because she is very weak. She gets full from just a few bites. All she keeps asking is, "Can I sleep?" Her spirits are up and she is just waiting to feel better. She has to take one day at a time and it will happen. On about day 8 to 12 the new stem cells should engraft. You will know by the blood counts. They will go up dramatically. On day 5 she will have neupogen shots to stimulate the growth of the stem cells.
The only problem seems to be her asthma, but it could be her MS. A swallow study is ordered for Monday.
This study will examine the mechanisms of the throat.
She is having a breathing treatment now and I hope it gets her through the night.
Love to all
Jill and Doreen
Thursday, January 22, 2009
Stem Cells Administered!
January 22, 2009: Jill had the stem cell transplant around 2 pm this afternoon. She is doing well. She has had so much medication that between the Ativan and the Benadryl, she is sleeping. She smells like creamed corn and that is from the preservative that was used for the stem cells.
The doctor said that stem cells are very smart. She looked around and said that all the people in this room (There were six of us) combined are not as smart as the stem cells. Somehow, they just know exactly what to do. They start repairing what needs to be fixed. A chaplain asked God to bless the cells and Jill had a reading from the book of Psalms, "The Lord is my Sheppard." It was a new Celebration of Life!
She looks very rested now. When Jill woke up she asked if she could have STEAK. She wanted Steak Simirica from the Villa.
Right now she is getting a blood transfusion. Everything is going as planned and we are very excited.
We want to thank everyone for their prayers and support that are making this dream come true
Love
Doreen
The doctor said that stem cells are very smart. She looked around and said that all the people in this room (There were six of us) combined are not as smart as the stem cells. Somehow, they just know exactly what to do. They start repairing what needs to be fixed. A chaplain asked God to bless the cells and Jill had a reading from the book of Psalms, "The Lord is my Sheppard." It was a new Celebration of Life!
She looks very rested now. When Jill woke up she asked if she could have STEAK. She wanted Steak Simirica from the Villa.
Right now she is getting a blood transfusion. Everything is going as planned and we are very excited.
We want to thank everyone for their prayers and support that are making this dream come true
Love
Doreen
Wednesday, January 21, 2009
Chemo Side Effects Continue.
January 21, 2009:
I wish I had better news to report, but unfortunately, Jill is not doing well today. She was up almost the entire night moaning and struggling to go to the bathroom. They can put a catheter into the bladder, but it might cause an infection.
Jill also vomited again and is very weak. Today she lost 8 lbs. She shakes when she has to stand up and again when she sits down, just with the effort it takes. She was too weak to eat - no breakfast or lunch and only took a couple of bites at dinner and then asked if she could sleep again. She was up all night so her body is trying to catch up. She finally fell asleep and Vinny is asleep too.
She has been using an inhaler to breathe, but it is not working so they have ordered a breathing machine to help her. She will also be receiving breathing treatments, which are also adding to the water retention. The doctor has reduced the amount of fluids now that the chemotherapy is finished and feels that this will help with the breathing.
It's horrible to watch someone struggle to breathe - Jill told me that it feels like there's a weight on her chest and she can't get any air in. After the breathing treatment, however, Jill said she felt a bit better.
The side effects will continue for a week or so. Today she lost 8 lbs. She has no fever now, but I think this is the weakest condition I have ever seen her in.
Thank you all for your continued thoughts and prayers. It means a lot to us to know that you're all pulling for Jill's recovery.
Love,
Doreen
I wish I had better news to report, but unfortunately, Jill is not doing well today. She was up almost the entire night moaning and struggling to go to the bathroom. They can put a catheter into the bladder, but it might cause an infection.
Jill also vomited again and is very weak. Today she lost 8 lbs. She shakes when she has to stand up and again when she sits down, just with the effort it takes. She was too weak to eat - no breakfast or lunch and only took a couple of bites at dinner and then asked if she could sleep again. She was up all night so her body is trying to catch up. She finally fell asleep and Vinny is asleep too.
She has been using an inhaler to breathe, but it is not working so they have ordered a breathing machine to help her. She will also be receiving breathing treatments, which are also adding to the water retention. The doctor has reduced the amount of fluids now that the chemotherapy is finished and feels that this will help with the breathing.
It's horrible to watch someone struggle to breathe - Jill told me that it feels like there's a weight on her chest and she can't get any air in. After the breathing treatment, however, Jill said she felt a bit better.
The side effects will continue for a week or so. Today she lost 8 lbs. She has no fever now, but I think this is the weakest condition I have ever seen her in.
Thank you all for your continued thoughts and prayers. It means a lot to us to know that you're all pulling for Jill's recovery.
Love,
Doreen
Tuesday, January 20, 2009
Last Day of Chemo!
January 20, 2009: Jill was completely worn out today. She is retaining about 10 lbs. of fluid. The doctor has her on diuretics twice a day and the dosage was increased today. She has to make about four trips an hour to the bathroom, so as soon as she starts to rest she has to get up again. This schedule is taking a toll on her. She doesn't have the energy to eat because it takes energy just for her to chew. Taking a shower is also a chore. The good news is that today is her last day of chemo!
Her face is flushed from the steroids. No fever today, but her blood pressure is still very low. Last night she had a tremor in her leg and was told not to stand or even attempt to walk without assistance.
Her platelet count has gone from 259 to 176 Her hemoglobin was 10.3 and is now 9.5. Her white count is still in the normal range because she is on steroids. Once they are stopped that is when they will bottom out to 0.
With all this going on her spirits are good and she is fighting to get through this phase.
The nurses were telling us that patients come from all around the world to have Dr. Burt care for them. He is considered a king here. His associate, Dr. Alessandro Testori is the prince.
All test results go on the Northwestern Physicians web site so the doctors can access the information at any time. They can order tests and view the results immediately. There is also a computer in each patient’s room that the doctor uses instead of charts. All of the patient’s medical care and history is logged on to the computer. It is really amazing to see.
Love,
Doreen
Her face is flushed from the steroids. No fever today, but her blood pressure is still very low. Last night she had a tremor in her leg and was told not to stand or even attempt to walk without assistance.
Her platelet count has gone from 259 to 176 Her hemoglobin was 10.3 and is now 9.5. Her white count is still in the normal range because she is on steroids. Once they are stopped that is when they will bottom out to 0.
With all this going on her spirits are good and she is fighting to get through this phase.
The nurses were telling us that patients come from all around the world to have Dr. Burt care for them. He is considered a king here. His associate, Dr. Alessandro Testori is the prince.
All test results go on the Northwestern Physicians web site so the doctors can access the information at any time. They can order tests and view the results immediately. There is also a computer in each patient’s room that the doctor uses instead of charts. All of the patient’s medical care and history is logged on to the computer. It is really amazing to see.
Love,
Doreen
Monday, January 19, 2009
Not a Good Day - Jill Needs Your Prayers
January 19, 2009: Today was not a very good day. Jill struggled so much with the terrible side effects of the chemotherapy. She was miserable and nauseous, with a temperature of almost 101 degrees.
At one point, the nurse and Vinny had to help her up off the bathroom floor because she is so weak from her very low blood pressure - it got as low as 50/40! She is also retaining fluids from the chemo and is on Solu-Medrol, another medication that makes her retain even more. She is not eating enough either.
It was very heartbreaking to see her cry from the pain and the suffering that she's going through with the chemo - her ears and throat hurt again and because of the fever, she went into a cold sweat. Dr. Burt tried giving her a pep talk about keeping a positive attitude and reassured her that she will be so much better after all this is over.
Although this was expected, until it happens, you forget how bad it can be. Prayers are needed at this time to help Jill get through this very rough period.
Love,
Doreen
At one point, the nurse and Vinny had to help her up off the bathroom floor because she is so weak from her very low blood pressure - it got as low as 50/40! She is also retaining fluids from the chemo and is on Solu-Medrol, another medication that makes her retain even more. She is not eating enough either.
It was very heartbreaking to see her cry from the pain and the suffering that she's going through with the chemo - her ears and throat hurt again and because of the fever, she went into a cold sweat. Dr. Burt tried giving her a pep talk about keeping a positive attitude and reassured her that she will be so much better after all this is over.
Although this was expected, until it happens, you forget how bad it can be. Prayers are needed at this time to help Jill get through this very rough period.
Love,
Doreen
Sunday, January 18, 2009
Chemotherapy and Low White Blood Count
January 18, 2009: Last night, Jill didn't get much sleep at all. She had to make several trips to the bathroom because she is on a diuretic to flush out the chemotherapy. The IV machine kept beeping and the nurses kept coming in the room either to fix the machine or change the medication bags. They also monitor her temperature and blood pressure during the night.
She was exhausted this afternoon and slept three hours straight. She was completely worn out. This is normal as we are watching her counts start to fall. The chemotherapy will eventually bring her white blood count down to zero. The doctor explained that she will probably need about 2 liters of blood at that time. Almost all the transplant patients need transfusions. She may also need platelets. When the chemotherapy is administered she is also given a blood thinner. When she was admitted, her White Blood Count was 5.3. Last count was 4.4
After her nap, she felt much better.
Love
Doreen
She was exhausted this afternoon and slept three hours straight. She was completely worn out. This is normal as we are watching her counts start to fall. The chemotherapy will eventually bring her white blood count down to zero. The doctor explained that she will probably need about 2 liters of blood at that time. Almost all the transplant patients need transfusions. She may also need platelets. When the chemotherapy is administered she is also given a blood thinner. When she was admitted, her White Blood Count was 5.3. Last count was 4.4
After her nap, she felt much better.
Love
Doreen
Chemotherapy Begins
January 17, 2009: Jill is doing well.
She was hooked up to 5 different IV bags that went into her PICC line (peripherally inserted central catheter).
The lab technicians take blood twice a day to monitor her potassium, calcium and sodium and confirm they are still in the normal range.
She is hydrated continually and gets medicine to coat her bladder to prevent infection from the chemotherapy. Sometimes the irritation from the chemo causes the bladder to bleed and you will notice it in the urine.
She is also on Solu-Medrol (Prednisone) IV. They give her a daily water pill to make sure the chemo passes out of the bladder as soon as possible.
Jill is very tired and wanted to write the blog herself, but didn't feel up to it.
She sends everyone her love
Love
Doreen
She was hooked up to 5 different IV bags that went into her PICC line (peripherally inserted central catheter).
The lab technicians take blood twice a day to monitor her potassium, calcium and sodium and confirm they are still in the normal range.
She is hydrated continually and gets medicine to coat her bladder to prevent infection from the chemotherapy. Sometimes the irritation from the chemo causes the bladder to bleed and you will notice it in the urine.
She is also on Solu-Medrol (Prednisone) IV. They give her a daily water pill to make sure the chemo passes out of the bladder as soon as possible.
Jill is very tired and wanted to write the blog herself, but didn't feel up to it.
She sends everyone her love
Love
Doreen
Friday, January 16, 2009
Prentice Women's Hospital @ Northwestern - Admission @ 7:00 A.M.
(January 16, 2009) Jill had the PICC line placed at 7 am this morning. The procedure went smoothly. It was a lot easier than the line she had placed in the jugular vein for the collection of the stem cells early in December.
She was admitted to the Prentice Hospital at Northwestern where several large vials of blood were drawn. All of her blood work is given to her on a print out so she can monitor her counts from the day of admission through the 3 weeks of hospitalization.
She was given medication for the prevention of future lung infections that could occur during this time. It was administered through a machine like a nebulizer that made her cough. This took about one hour.
All her blood results so far are normal and the MRI of her heart showed no signs of Cardiomyopathy.
Jill will be hydrated through the IV and the chemotherapy will start tomorrow.
Love
Doreen
She was admitted to the Prentice Hospital at Northwestern where several large vials of blood were drawn. All of her blood work is given to her on a print out so she can monitor her counts from the day of admission through the 3 weeks of hospitalization.
She was given medication for the prevention of future lung infections that could occur during this time. It was administered through a machine like a nebulizer that made her cough. This took about one hour.
All her blood results so far are normal and the MRI of her heart showed no signs of Cardiomyopathy.
Jill will be hydrated through the IV and the chemotherapy will start tomorrow.
Love
Doreen
Thursday, January 15, 2009
January 13, 2009
As scheduled I met with the cardiologist at 9 a.m. He did an EKG which was normal and heard my heart murmer. He felt addition tests should be done because of my family history. An appointment scheduled in the afternoon for an ECHO DURING STRESS/ REST WITH DOPPLER. The first half of the test was simple and went well. The second half was a disaster. While I was on the treadmill, the technition accidentally pushed the wrong button which made the speed of the treadmill increase. I have problems walking, let alone running. I started to stumble and tightened my grip. The other technition yelled get her off, and they syopped it. I fell into a gurney alongside the treadmill and tears streamed down my face. Once the pace rapidly inreased I knew I wouldnt last very long. I have trouble walking unasisted, never mind at a fast pace. It was decided that an MRI should be scheduled for tommorow. When I returned to the waiting area and by the expression on my face Vinny knew something was wrong. I explained the traumatic ordeal and he was furious. He couldn't understand why someone would expose me to that danger knowing my situation. I then had to calm him down because he was ready to go back there and wreak havok.
That temporarily put that bad experience behind me.
love,
Jill
That temporarily put that bad experience behind me.
love,
Jill
The Prentice Hospital at Northwestern
Monday, January 5,2009
Before Jill was told by Dr Burt to wait until Friday this is what I wrote in the morning.
It is information that I am sure you will find interesting.
Jill will be admitted to the Prentice Building. It is a brand new Pavilion that has been added to the many different ones here. It is actually a Woman's Hospital for all their needs. Gynecology, Breast Cancer, a special birthing facility etc.
The 15 th floor is for transplant patients. The sixteenth floor was for pre transplant therapy. That is where Jill was the last time. This building is only one year old.
The fifteenth floor has it's own heating and cooling system. The air on this floor does not interact with any other floor. It is a sterile environment for the patients because their immune system is compromised and they are susceptible to infection. Anyone that has a cold or infection is not permitted on this floor. If you are healthy, you still have to wear a mask and disinfect your hands upon entering the room.
Patients are not permitted more than 3 visitors at a time. Each room has a couch that converts to a bed for one family member to stay with the patient.
All meals are prepared individually at the time you order. They are delivered to the room immediately so that the food does not stand around and sit in hallways on trays. When you finish you call for your tray to be picked up.
All rooms are private. You cannot use the patients bathroom. It is for them only. Bacteria can be transmitted there and can lead to infection.
The Hospital is one block from Lake Michigan. The view is magnificent. All rooms have a flat screen TV that also can be used as a computer. A keyboard is provided. Your stay is long, so they try to make it as comfortable as possible.
This is the most BEAUTIFUL hospital I have ever seen. They even have a library open to the public on the first floor. Computers are provided there for use by the public. There is also one in the waiting room for you to use.
All the pillows and bedding are hypoallergenic. Only pull down filtered shades are on the windows.. No blinds,draperies, or valances because they collect dust.
Jill is in the best place and in the best hands. That is comforting for us
Love
Doreen
Before Jill was told by Dr Burt to wait until Friday this is what I wrote in the morning.
It is information that I am sure you will find interesting.
Jill will be admitted to the Prentice Building. It is a brand new Pavilion that has been added to the many different ones here. It is actually a Woman's Hospital for all their needs. Gynecology, Breast Cancer, a special birthing facility etc.
The 15 th floor is for transplant patients. The sixteenth floor was for pre transplant therapy. That is where Jill was the last time. This building is only one year old.
The fifteenth floor has it's own heating and cooling system. The air on this floor does not interact with any other floor. It is a sterile environment for the patients because their immune system is compromised and they are susceptible to infection. Anyone that has a cold or infection is not permitted on this floor. If you are healthy, you still have to wear a mask and disinfect your hands upon entering the room.
Patients are not permitted more than 3 visitors at a time. Each room has a couch that converts to a bed for one family member to stay with the patient.
All meals are prepared individually at the time you order. They are delivered to the room immediately so that the food does not stand around and sit in hallways on trays. When you finish you call for your tray to be picked up.
All rooms are private. You cannot use the patients bathroom. It is for them only. Bacteria can be transmitted there and can lead to infection.
The Hospital is one block from Lake Michigan. The view is magnificent. All rooms have a flat screen TV that also can be used as a computer. A keyboard is provided. Your stay is long, so they try to make it as comfortable as possible.
This is the most BEAUTIFUL hospital I have ever seen. They even have a library open to the public on the first floor. Computers are provided there for use by the public. There is also one in the waiting room for you to use.
All the pillows and bedding are hypoallergenic. Only pull down filtered shades are on the windows.. No blinds,draperies, or valances because they collect dust.
Jill is in the best place and in the best hands. That is comforting for us
Love
Doreen
Transplant postponed until Friday
Today, at about 11:30 am, Dr Burt's office called to make sure everything was set for tomorrow. Kate, Dr Burt's nurse spoke to Jill and asked how she felt. She was feeling stuffy and her ears hurt. Her throat was also bothering her. Kate phoned Dr Burt to report on her condition. He wanted to see Jill to check her ears and throat. He was not in the clinic at the hospital today, so we had to coordinate a time to meet..
After examining Jill, Dr Burt decided to postpone the transplant until Friday. He explained that it is not advisable to go ahead if there is any type of infection, cold, or virus. It is simply too dangerous.
He prescribed Z pack for Jill and wants to make sure she feels okay on Friday. He told her that she is the best indicator of how she feels. If she doesn't feel well,she will just have to wait.
It's better to be safe instead of sorry.
Jill will keep you posted on how she feels
Love
Doreen
After examining Jill, Dr Burt decided to postpone the transplant until Friday. He explained that it is not advisable to go ahead if there is any type of infection, cold, or virus. It is simply too dangerous.
He prescribed Z pack for Jill and wants to make sure she feels okay on Friday. He told her that she is the best indicator of how she feels. If she doesn't feel well,she will just have to wait.
It's better to be safe instead of sorry.
Jill will keep you posted on how she feels
Love
Doreen
January 15, 2009
Today I went to have the MRI of my heart done at 4:00 p.m. It was almost 2 hours long but unlike the other MRI's I have gotten, I couldn't fall asleep. I had to stay awake to hold my breath many times. This is not protocal for stem cell patients but considering my family history, I had to have this test done as a precaution before the transplant. While I was having the test done, Dr. Burt's office called my mother and gave her the great news that I am scheduled for admission for the stem cell transplant at 7 a.m. (yay!) Now the hard part is getting there on time! I'm so happy, I'll be MS free soon!
love,
Jill
Today I went to have the MRI of my heart done at 4:00 p.m. It was almost 2 hours long but unlike the other MRI's I have gotten, I couldn't fall asleep. I had to stay awake to hold my breath many times. This is not protocal for stem cell patients but considering my family history, I had to have this test done as a precaution before the transplant. While I was having the test done, Dr. Burt's office called my mother and gave her the great news that I am scheduled for admission for the stem cell transplant at 7 a.m. (yay!) Now the hard part is getting there on time! I'm so happy, I'll be MS free soon!
love,
Jill
Monday, January 12, 2009
Monday January 12, 2009
Today I met with Dr. Burt at Northwestern Hospital. He examined my ears and said I was looking much better. He gave me a prescripton for ear drops and told me I was to be admitted tomorrow at 8 am.
My mother was talking to Dr.Burt about my cousin that just passed away. It was sudden and without warning. They think he may have died from the same thing my grandmother had when she passed away. She was only 35 years old and she just stopped talking while siting in a car and died suddenly. At that time the technology wasn't
available to diagnose the cause of death. They now think it was Verticular Cardio Myopathy. Now a cardiologist is going to check me again tomorrow just to be sure I don't have this condition.
I'll let you know when I will be admitted.
Love
Jill
Today I met with Dr. Burt at Northwestern Hospital. He examined my ears and said I was looking much better. He gave me a prescripton for ear drops and told me I was to be admitted tomorrow at 8 am.
My mother was talking to Dr.Burt about my cousin that just passed away. It was sudden and without warning. They think he may have died from the same thing my grandmother had when she passed away. She was only 35 years old and she just stopped talking while siting in a car and died suddenly. At that time the technology wasn't
available to diagnose the cause of death. They now think it was Verticular Cardio Myopathy. Now a cardiologist is going to check me again tomorrow just to be sure I don't have this condition.
I'll let you know when I will be admitted.
Love
Jill
Sunday, January 11th:
Jill's admission has been changed again. She has to meet the doctor tomorrow afternoon at the hospital.
He wants to examine her again before they admit her.
Her ears still hurt and they are afraid to go ahead with the transplant until she is completely over this cold.
It is a little disappointing but I know the doctor is looking at what could happen if this isn't taken care of first.
She may have to go on antibiotics again.
Love
Doreen
Jill's admission has been changed again. She has to meet the doctor tomorrow afternoon at the hospital.
He wants to examine her again before they admit her.
Her ears still hurt and they are afraid to go ahead with the transplant until she is completely over this cold.
It is a little disappointing but I know the doctor is looking at what could happen if this isn't taken care of first.
She may have to go on antibiotics again.
Love
Doreen
Sunday, January 11, 2009
Saturday, January 10, 2009
If all goes as planned, Jill will be admitted to the hospital at 10 am Monday, Jan. 12th. She has been resting and finished the antibiotics on Friday. The sore throat is gone and she said her ears hurt just a little; they feel stuffy. I think the plane ride definitely affected the ear pressure and made the situation worse.
Her father made a big pot of beef soup. That definitely helps you feel better.
The apartment has a fully equipped kitchen that makes it so much easier. We don't have to worry about ordering from a restaurant because we have been doing all the cooking here. It keeps us busy and is so much cheaper.
I am sure you know that it has been snowing almost every day, but this is Chicago, so we expected it.
While we are waiting for Jill to be admitted to the hospital, we are reading the precautions we have to take after
There are lots of restrictions regarding food and food preparation that must be adhered to so we must be very careful. Here are some of them:
Never leave perishable food out of the refrigerator longer than two hours.
Egg dishes, meat, fish, poultry, cream and mayonnaise based foods should not be left unrefrigerated for more than one hour.
Do not eat raw meats, fish or sushi.
Do not eat food from salad bars.
Wash tops of canned foods before opening.
Clean the can opener after each use.
During food preparation, do not taste the food with the same utensil used for stirring.
Cook egg until whites are completely hard and the yolks begin to thicken. The yolk should no longer be runny but need not be hard.
Do not buy meats or cheese at the delicatessen. Packaged deli meats and cheeses are okay.
Avoid unpasteurized dairy products that contain molds (e.g. blue cheese).
NEVER TASTE FOOD THAT LOOKS OR SMELLS STRANGE!
Keep foods at safe temperatures: hot food above 140 degrees and cold food below 40 degrees.
There are a lot of other restrictions that I will inform you of in future blogs.
Love, Doreen
If all goes as planned, Jill will be admitted to the hospital at 10 am Monday, Jan. 12th. She has been resting and finished the antibiotics on Friday. The sore throat is gone and she said her ears hurt just a little; they feel stuffy. I think the plane ride definitely affected the ear pressure and made the situation worse.
Her father made a big pot of beef soup. That definitely helps you feel better.
The apartment has a fully equipped kitchen that makes it so much easier. We don't have to worry about ordering from a restaurant because we have been doing all the cooking here. It keeps us busy and is so much cheaper.
I am sure you know that it has been snowing almost every day, but this is Chicago, so we expected it.
While we are waiting for Jill to be admitted to the hospital, we are reading the precautions we have to take after
There are lots of restrictions regarding food and food preparation that must be adhered to so we must be very careful. Here are some of them:
Never leave perishable food out of the refrigerator longer than two hours.
Egg dishes, meat, fish, poultry, cream and mayonnaise based foods should not be left unrefrigerated for more than one hour.
Do not eat raw meats, fish or sushi.
Do not eat food from salad bars.
Wash tops of canned foods before opening.
Clean the can opener after each use.
During food preparation, do not taste the food with the same utensil used for stirring.
Cook egg until whites are completely hard and the yolks begin to thicken. The yolk should no longer be runny but need not be hard.
Do not buy meats or cheese at the delicatessen. Packaged deli meats and cheeses are okay.
Avoid unpasteurized dairy products that contain molds (e.g. blue cheese).
NEVER TASTE FOOD THAT LOOKS OR SMELLS STRANGE!
Keep foods at safe temperatures: hot food above 140 degrees and cold food below 40 degrees.
There are a lot of other restrictions that I will inform you of in future blogs.
Love, Doreen
Thursday, January 8, 2009
Thursday January 8, 2009
Unfortunatly there is another delay with my admission to the hospital for the transplant. I spoke with the nurse practitioner this morning and she asked how I was feeling. I told her that my ears were still bothering me and my throat hurt a little. She told me she would give me a call back after reporting it to Dr. Burt. A few minutes later she called me back and he decided to postpone the admission until Monday.
Love,
Jill
Unfortunatly there is another delay with my admission to the hospital for the transplant. I spoke with the nurse practitioner this morning and she asked how I was feeling. I told her that my ears were still bothering me and my throat hurt a little. She told me she would give me a call back after reporting it to Dr. Burt. A few minutes later she called me back and he decided to postpone the admission until Monday.
Love,
Jill
Monday, January 5, 2009
Jill will be admitted to the Prentice Building. It is a brand new Pavilion that has been added to the many different ones here. It is actually a Woman's Hospital for all their needs. Gynecology, Breast Cancer, a special birthing facility etc.
The 15 th floor is for transplant patients. The sixteenth floor was for pre transplant therapy. That is where Jill was the last time. This building is only one year old.
The fifteenth floor has it's own heating and cooling system. The air on this floor does not interact with any other floor. It is a sterile environment for the patients because their immune system is compromised and they are susceptible to infection. Anyone that has a cold or infection is not permitted on this floor. If you are healthy, you still have to wear a mask and disinfect your hands upon entering the room.
Patients are not permitted more than 3 visitors at a time. Each room has a couch that converts to a bed for one family member to stay with the patient.
All meals are prepared individually at the time you order. They are delivered to the room immediately so that the food does not stand around and sit in hallways on trays. When you finish you call for your tray to be picked up.
All rooms are private. You cannot use the patients bathroom. It is for them only. Bacteria can be transmitted there and can lead to infection.
The Hospital is one block from Lake Michigan. The view is magnificent. All rooms have a flat screen TV that also can be used as a computer. A keyboard is provided. Your stay is long, so they try to make it as comfortable as possible.
This is the most BEAUTIFUL hospital I have ever seen. They even have a library open to the public on the first floor. Computers are provided there for use by the public. There is also one in the waiting room for you to use.
All the pillows and bedding are hypoallergenic. Only pull down filtered shades are on the windows.. No blinds,draperies, or valances because they collect dust.
Jill is in the best place and in the best hands. That is comforting for us
Love
Doreen
The 15 th floor is for transplant patients. The sixteenth floor was for pre transplant therapy. That is where Jill was the last time. This building is only one year old.
The fifteenth floor has it's own heating and cooling system. The air on this floor does not interact with any other floor. It is a sterile environment for the patients because their immune system is compromised and they are susceptible to infection. Anyone that has a cold or infection is not permitted on this floor. If you are healthy, you still have to wear a mask and disinfect your hands upon entering the room.
Patients are not permitted more than 3 visitors at a time. Each room has a couch that converts to a bed for one family member to stay with the patient.
All meals are prepared individually at the time you order. They are delivered to the room immediately so that the food does not stand around and sit in hallways on trays. When you finish you call for your tray to be picked up.
All rooms are private. You cannot use the patients bathroom. It is for them only. Bacteria can be transmitted there and can lead to infection.
The Hospital is one block from Lake Michigan. The view is magnificent. All rooms have a flat screen TV that also can be used as a computer. A keyboard is provided. Your stay is long, so they try to make it as comfortable as possible.
This is the most BEAUTIFUL hospital I have ever seen. They even have a library open to the public on the first floor. Computers are provided there for use by the public. There is also one in the waiting room for you to use.
All the pillows and bedding are hypoallergenic. Only pull down filtered shades are on the windows.. No blinds,draperies, or valances because they collect dust.
Jill is in the best place and in the best hands. That is comforting for us
Love
Doreen
January 5, 2009
Today, at about 11:30 am, Dr Burt's office called to make sure everything was set for tomorrow. Kate, Dr Burt's nurse spoke to Jill and asked how she felt. She was feeling stuffy and her ears hurt. Her throat was also bothering her. Kate phoned Dr Burt to report on her condition. He wanted to see Jill to check her ears and throat. He was not in the clinic at the hospital today, so we had to coordinate a time to meet.
After examining Jill, Dr. Burt decided to postpone the transplant until Friday. He explained that it is not advisable to go ahead if there is any type of infection, cold, or virus. It is simply too dangerous.
He prescribed Z pack for her and wants to make sure she feels okay on Friday. He told her that she is the best indicator of how she feels. If she doesn't feel well, she will just have to wait. It's better to be safe instead of sorry.
Jill will keep you posted on how she feels
Love
Doreen
After examining Jill, Dr. Burt decided to postpone the transplant until Friday. He explained that it is not advisable to go ahead if there is any type of infection, cold, or virus. It is simply too dangerous.
He prescribed Z pack for her and wants to make sure she feels okay on Friday. He told her that she is the best indicator of how she feels. If she doesn't feel well, she will just have to wait. It's better to be safe instead of sorry.
Jill will keep you posted on how she feels
Love
Doreen
Sunday, January 4, 2009
While taking a break between my treatments I went home to spend Christmas with my family. In early December my hair was falling out in clumps. It was all over my pillows and clogged the drain when I showered. It was more of a hassle than anything. One morning I awoke and couldn't believe how much Bella was shedding, There was hair all over my bed. But it wasn't hers, it was mine!
So I called my sister-in-law Bethany and asked her to come over and shave my head. Her daughter, my niece Amelia was sick so odds were she wouldn't be able to make it. I then decided to call my brother Mark and he said he'd be over to shave it. My head was sore because the hair follicles were dying. It falling out didn't phase me much because I knew it was going to happen. Its hair,it grows back and it's a side effect of the chemotherapy. In the end it will all be worth it because this treatment will make me well again. Honestly it's exciting. I mean I always wanted to start fresh with my hair so this was a great opportunity, considering it would fall out anyway.
So Mark came with his buzzers and Bethany made it too. Bethany had baby clippers so it was better for my sensitive scalp. She began to shave it and it wasn't really sore while she did it. As she began to shave it tears streamed down her face. She kept repeating "I feel so bad" but I explain to her that by her doing this, it would make things so much easier for me. While she was shaving my head a freckle appeared and she couldn't believe it. "You have the same exact freckle in the same spot as Anthony" (My brother, her husband) she said. Then when she was finished, she stepped back and smiled "From the back your head is shaped exactly like Marks, only smaller. Then Mark and I stood next to each other with our backs facing my Mother and Bethany. My Mom agreed our heads were exactly alike. Then they told us to turn around and said that "I am a combination of Anthony and Mark". My Mother said now she feels like she has four sons instead of three. The next morning when my Mother woke up and passed by my room, she stopped short and backtracked wondering why Mark was in my bed. As she got closer she remembered I didn't have any hair and smiled. When Vinny and I first started dating he once said it felt like he was kissing Anthony because we look so much alike. Now he looks at me without hair and says I look exactly like Mark.
Leaving home was just as eventful as ever. First, Bella knew something was going on. She was following us all over and kept going to the closet to get her leash. Her tail was wagging so fast because she thought she was going for a ride. She watched the suitcases, kept smelling them and went back to the closet.She kept running back and forth from the closet door to the outside door where the luggage was. There was no doubt, she thought she was coming with us. This time is always sad for us because saying good bye to Bella is very emotional. It will be a long time before Jill can hug and kiss her because when she gets home her immune system will be so fragile. Infection is one of the biggest risks that patients face during and after stem cell transplants. The high dose chemotherapy given before the transplant temporarily disables the body's immune system making it more difficult to fight infection. Although your white blood cell count is at a safe level when you leave the hospital, your immune system overall, will not function normally for one year or longer.There are strict restrictions you must follow if you have a pet. Animals can be carriers of bacteria that could potentially lead to infections. If you have had a pet for an extended period of time the risk should be lessened. However, it is recommended that you do not introduce new pets into your home for at least one year after the stem cell transplant or for as long as you are on immunosuppressant drugs. No picking up Bella's poop, (Jill hasn't done this for at least one year because of her balance). Her Dad has that job.Bella is a one of a kind. She weighs 95 lbs but thinks she can climb and sit on you as if she were a lap dog. She loves children and cries from the time she sees them until they get in the house.She is so affectionate and loving and yet barks like a beast at anything that passes our house. She barks when you come and barks when you leave. The only way we can quiet her is to give her a pigs ear or a bone. Yes, she has complete control of all of us.Jill's short term memory has been affected greatly. That is why she forgets almost everything. It is very frustrating for her. When we got in the car, she said she left her phone charger on the kitchen counter. We checked the suitcases first so we wouldn't have to go back inside because we just quieted Bella with a pigs ear. No charger there. I was the last to lock up and I didn't remember seeing the charger on the counter. She insisted that I moved it because it was there. Ernie went back in the house and searched. No charger was found. Jill put her hand in her coat pocket and felt a wire, it was the phone charger. She had no memory of putting it there. This happens all the time for a lot of MS sufferers. It is so frustrating for them and their care givers. This was a small example, but it affects their daily functions because either they forget to do something, or they do it over and over again. ( Some people got more than one thank you from Jill and regretfully, some didn't get any) She doesn't like the feeling of not being in control, so she won't let you help her.She often says "I'll do it" when I ask, if I can help her.I know Jill wrote about the coughing man on the plane that she sat next to so I don't have to go there. I told her to let me sit in the middle, but she said no. Then she forgot I even said it. She was almost siting on top of me after she woke up from her nap.We had to walk about the length of 2 long blocks because the attendant that escorted us out took us through the wrong door. She took us to taxi's that were reserved and they only took passengers that called ahead of time. We had to cross the divider and go to the city cabs.It's so hard to pull 2 large suitcases a carry on and a back pack and help Jill walk. I am determined to get some help before we return home because Jill will be weak and I will have to concentrate on her.We arrived at the apartment and of course I try to go through the revolving door with the large piece of luggage and get stuck. The doorman just looked at me and pointed to the automatic door. The taxi cab driver tried to help and brought the rest of the luggage in through that door for us. Jill looked at me because I embarrassed her again. I wanted to help Jill, so I figured if I got one large suitcase in then I could help Jill because she takes over and starts lifting and pushing the rest of the stuff.The apartment is beautiful. It is so much less than the hotel and we have an extra bedroom and full bath.When Ernie and Vinny (Jill's boy friend ) comes we will have plenty of room. Jill's Aunt Kim is going to fly in to see her too. It's hard being away from our family, so the morale support from them is going to be priceless.The love and out pouring of affection from all of you is immeasurable. It fills you with such a feeling that is indescribable. Our family is so loving and supportive and to know there are so many friends and strangers out there that are praying for her and wait every day to read about her on the web site each day is so inspiring. This kind of love fills every part of your heart with a feeling that is hard to describe. I wish all of you could experience this kind of love although I know you feel it for Jill.I will keep trying to keep everyone updated. If I can't write one day, I promise that I will catch up the next.May God bless Dennis for all his hard work on the web site that is making all this possible.LoveDoreen
January 3, 2009
I arrived back in Chicago this morning after having a wonderful Christmas. The flight was a good one, not that packed some rows were occupied by only one person but of course I was stuck in between two people. One person was my mother but the other was a man coughing all over me not covering his mouth!! I was getting so aggravated and made it blatantly clear so he ended up coughing into the window, still not covering his mouth. Thank God I had my mask on. Figures the only guy on the plane coughing sits right next to the girl with no hair on her head and wearing a surgical mask. Instead of staying at a hotel, we decided to rent an apartment for the month because we were able to save about $1,000.000 by doing so. The apartment is on the 27th floor in a high rise building and the view is amazing. We are one block from bloomies too bad I will be in the hospital. Oh well, good thing I'll be coming back many, many times. Hopefully then I'll be able to check it out. On Tuesday morning I'll be admitted to the hospital at 7a.m. and I will try to update the blog daily about my treatments.
Love,
Jill
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