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

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

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

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.

Love

Doreen

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