07-25-2007, 10:49 AM
New Update. This gal is something else! What a fighter! Good job Soul Patrol! Keep the cards headed to her mailbox!
Hi everyone!
This update follows the update of July 7. Mary Beth was just finishing up her chemotherapy and having some stomach cramps from the chemo. The stomach cramps lasted until July 16. Not much to tell. She is contemplating having them reduce her chemo to possibly avoid this week to 10 days of stomach cramps.
On July 16, we loaded Mary Beth and all of her medical equipment in the car and drove her to Camp Smile-A-Mile! We weren't sure she would make it or that they would be able to accommodate her needs, but all worked out and she had a great week without any incidents. She now has a scooter that allows her to have some independence. Also allows Mom's back to get a little relief except when breaking it down and putting it back together again. Great exercise though! She took her scooter to camp. It's a good thing that they have roads that lead to everything. The scooter doesn't have off road tires on it so it didn't make a good hiking vehicle.
Mary Beth had a great time, spent most of the time visiting and talking with everyone.
While she was at camp, I had a family member pass away and spent time at the funeral home and the cemetery. Last year Bob and I had discussed going ahead and making funeral arrangements for the family using some kind of pre arrangement. We have put this off, so I went ahead and gathered some information. I would rather have this done and available when needed than have anyone in the throws of emotional upheaval having to make these decisions for any of us. Let me say, if you haven't thought about it, land prices are not cheap even at the cemetery.
When she left for camp, she didn't have a costume for the Friday night dance. The theme was Outer Space and she decided to be a Space Cowgirl. She has never won anything before in her life and ended up with first place in the costume event. This was very exciting for her. Her scooter was her horse, she painted her head black (she is hairless remember) and painted glow in the dark stars on it, had a cowboy hat and pistols at her sides. I was very happy for her. She also had a date to the dance. One of the counselors invited her to go. This was very sweet (especially since she has never had a date before). She told me on Saturday when we picked her up that her back was killing her. I asked why it would be hurting and she said that she danced too much on Friday night. You have to remember she is either in a wheelchair or her scooter, so it never occurred to me that she would be dancing. She didn't even dance when she wasn't in a wheelchair. Go figure! She said that she upper body danced while in her scooter and her scooter could move around the dance floor. She told me, when we picked her up, that she felt better than she has felt in the last 4 to 6 months.
Once we got home she climbed into bed and said she needed about 24 hours of sleep. Bright and early on Sunday I got the call to get up and prepare breakfast. She told me that we would be getting up early now that she had been to camp. She had been getting up at 7, getting dressed, eating breakfast, going for an activity and then going for a nap before lunch. Having lunch and then going for a nap after lunch when everyone else had bunk time. Having activities in the afternoon, shower, dinner and night time activities with bed at time and lights out at 11. She is trying to whip me into shape with her new routine. Unfortunately it doesn't always jive with her away from camp life of clinic visits, etc. But we are trying to conform as best as possible.
Mary Beth had clinic today with a CT scan. Her blood work looked good except for low platelets which puts chemo off until next week. She is still trying to decide what she wants to do with regard to chemo. Her CT scan was stable meaning that there were no changes. Dr. Friedman talked with her about her chemo options. He also discussed with her that at some point the cancer would become resistant to the chemo. He said that they could try other drugs if it began to grow again but at some point they would run out of drugs to try and wouldn't be able to stop it.
She has plans to see Harry Potter at the IMAX this week and go to the Atlanta Aquarium on Saturday as a day trip. I will be making plans for returning to the beach and hopefully going to Paris. I hope we are able to get it all done before she has any additional problems. We aren't promised any length of time. She has indicated that she really would like to be around for the Christmas holidays. I am very hopeful that she gets her wish even though the doctors are saying it is doubtful. Mary Beth hasn't responded to anything the way that they thought she would, so I would guess her prognosis is not accurate for her either. We will just have to wait and see.
My job is to keep her well and out of the hospital, to give her the best quality of life she can have while I'm doing it and make plans for her to do things that make her happy! I am doing my best to do this. Some days are not as easy as others, but the good days make it very worthwhile.
Cards continue to come in from all over. I think yesterday she received about 25 cards from a Sunday School class in Arab. The cards were the same on the outside, but each note was from a different person and all had something different to say. It continue to amaze me that the message of the notes is still circulating to new people via the internet. People are sharing this with their church, their church friends, their family and other friends and neighbors. It is just amazing. We have one gentleman who send her a card almost every day. They are all different and the notes her writes are different. It is like he has taken her on as a ministry. It is so sweet. He lives in California. She also has been getting post cards from "Joy". She and Betsy are traveling the world and Joy sends a card from everywhere they stop and tell Mary Beth a little about what they are doing. It is like traveling the world through their eyes. She had one teenager who went on a choir trip from Tennessee who wrote her every day and has now returned home and written her a letter. A pastor from a church in a small town wrote her a three page letter. She is receiving cards from Churches all over the United States. We don't know the connections and how everyone found out. One day we will have a list of everyone she has received cards from and where they live. I'll let you know what we come up with. She still asks me everyday to go get the mail when it gets about mail time. This has been a wonderful thing for her. I will never be able to thank everyone enough for this.
We'll let you know in a few weeks how things are going. I hope everyone of you are having a good summer!
God bless,
Leslie
Hi everyone!
This update follows the update of July 7. Mary Beth was just finishing up her chemotherapy and having some stomach cramps from the chemo. The stomach cramps lasted until July 16. Not much to tell. She is contemplating having them reduce her chemo to possibly avoid this week to 10 days of stomach cramps.
On July 16, we loaded Mary Beth and all of her medical equipment in the car and drove her to Camp Smile-A-Mile! We weren't sure she would make it or that they would be able to accommodate her needs, but all worked out and she had a great week without any incidents. She now has a scooter that allows her to have some independence. Also allows Mom's back to get a little relief except when breaking it down and putting it back together again. Great exercise though! She took her scooter to camp. It's a good thing that they have roads that lead to everything. The scooter doesn't have off road tires on it so it didn't make a good hiking vehicle.
Mary Beth had a great time, spent most of the time visiting and talking with everyone.
While she was at camp, I had a family member pass away and spent time at the funeral home and the cemetery. Last year Bob and I had discussed going ahead and making funeral arrangements for the family using some kind of pre arrangement. We have put this off, so I went ahead and gathered some information. I would rather have this done and available when needed than have anyone in the throws of emotional upheaval having to make these decisions for any of us. Let me say, if you haven't thought about it, land prices are not cheap even at the cemetery.
When she left for camp, she didn't have a costume for the Friday night dance. The theme was Outer Space and she decided to be a Space Cowgirl. She has never won anything before in her life and ended up with first place in the costume event. This was very exciting for her. Her scooter was her horse, she painted her head black (she is hairless remember) and painted glow in the dark stars on it, had a cowboy hat and pistols at her sides. I was very happy for her. She also had a date to the dance. One of the counselors invited her to go. This was very sweet (especially since she has never had a date before). She told me on Saturday when we picked her up that her back was killing her. I asked why it would be hurting and she said that she danced too much on Friday night. You have to remember she is either in a wheelchair or her scooter, so it never occurred to me that she would be dancing. She didn't even dance when she wasn't in a wheelchair. Go figure! She said that she upper body danced while in her scooter and her scooter could move around the dance floor. She told me, when we picked her up, that she felt better than she has felt in the last 4 to 6 months.
Once we got home she climbed into bed and said she needed about 24 hours of sleep. Bright and early on Sunday I got the call to get up and prepare breakfast. She told me that we would be getting up early now that she had been to camp. She had been getting up at 7, getting dressed, eating breakfast, going for an activity and then going for a nap before lunch. Having lunch and then going for a nap after lunch when everyone else had bunk time. Having activities in the afternoon, shower, dinner and night time activities with bed at time and lights out at 11. She is trying to whip me into shape with her new routine. Unfortunately it doesn't always jive with her away from camp life of clinic visits, etc. But we are trying to conform as best as possible.
Mary Beth had clinic today with a CT scan. Her blood work looked good except for low platelets which puts chemo off until next week. She is still trying to decide what she wants to do with regard to chemo. Her CT scan was stable meaning that there were no changes. Dr. Friedman talked with her about her chemo options. He also discussed with her that at some point the cancer would become resistant to the chemo. He said that they could try other drugs if it began to grow again but at some point they would run out of drugs to try and wouldn't be able to stop it.
She has plans to see Harry Potter at the IMAX this week and go to the Atlanta Aquarium on Saturday as a day trip. I will be making plans for returning to the beach and hopefully going to Paris. I hope we are able to get it all done before she has any additional problems. We aren't promised any length of time. She has indicated that she really would like to be around for the Christmas holidays. I am very hopeful that she gets her wish even though the doctors are saying it is doubtful. Mary Beth hasn't responded to anything the way that they thought she would, so I would guess her prognosis is not accurate for her either. We will just have to wait and see.
My job is to keep her well and out of the hospital, to give her the best quality of life she can have while I'm doing it and make plans for her to do things that make her happy! I am doing my best to do this. Some days are not as easy as others, but the good days make it very worthwhile.
Cards continue to come in from all over. I think yesterday she received about 25 cards from a Sunday School class in Arab. The cards were the same on the outside, but each note was from a different person and all had something different to say. It continue to amaze me that the message of the notes is still circulating to new people via the internet. People are sharing this with their church, their church friends, their family and other friends and neighbors. It is just amazing. We have one gentleman who send her a card almost every day. They are all different and the notes her writes are different. It is like he has taken her on as a ministry. It is so sweet. He lives in California. She also has been getting post cards from "Joy". She and Betsy are traveling the world and Joy sends a card from everywhere they stop and tell Mary Beth a little about what they are doing. It is like traveling the world through their eyes. She had one teenager who went on a choir trip from Tennessee who wrote her every day and has now returned home and written her a letter. A pastor from a church in a small town wrote her a three page letter. She is receiving cards from Churches all over the United States. We don't know the connections and how everyone found out. One day we will have a list of everyone she has received cards from and where they live. I'll let you know what we come up with. She still asks me everyday to go get the mail when it gets about mail time. This has been a wonderful thing for her. I will never be able to thank everyone enough for this.
We'll let you know in a few weeks how things are going. I hope everyone of you are having a good summer!
God bless,
Leslie