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

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

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

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

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

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

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