NESP Forum

It's the heart of the Soul Patrol here!

When we look at how well you all are doing on the Cookbook Challenge, it's obvious!

NESP Rocks!!

Have they heard of http://www.caringbridge.com? They could set up a site
for her and post updates, people could leave her good wishes,etc.

Update from Suzanne:

Here's an email that Leslie, Mary Beth's mom, sent Natalie.

I have been told that a miracle is the only hope that Mary Beth has - but they do happen, so why give up hope! I know strong prayer will help.

She is thrilled about the cards coming in from the Soul Patrol - on behalf of Mary Beth, THANK YOU Soul Patrol

Talk to you soon,

Suzanne

Begin forwarded message:
Subject: Mary Beth Update

Hey Suzanne

Here is the email from Mary Beth's Mom, Leslie:

Hi everyone! The cards keep pouring in! She is now getting cards from the Soul Patrol and received an autographed Taylor Hicks CD. Post cards have arrived from England and France. It is unbelievable what e-mail can do for communication in getting the word out.

Mary Beth went into the hospital on Thursday evening as she had been having to work hard to breath for most of the day. They have not figured out what the cause is specifically, but they have put her on a bi-PAP machine to help her breath. This is like a C-PAP machine that people with sleep apnea use. It is helping her to rest and she slept most of the day on Friday and today. They have put her on high does of steroids again incase the BOOP inflammation is the cause. They have also put her on multiple antibiotics in case she has an infection. They did a CT scan but it didn't show anything different from the last one. The cancer does not seem to be growing at the present time. We are presuming that this is due to the chemotherapy that she had ten days ago.

On a bright note, we did go to see a movie on Wednesday afternoon before she began having these problems. We saw the Pirates of the Caribbean 3, which was not very good per Mary Beth. I thought it wasn't either but far be it from me to critique a movie. I am usually not in the majority.

Today we did spend about an hour reading cards today which was the high point of her day. Just wanted to keep everyone informed.

We don't know how long we are looking at for this hospital stay. If it looks like it will be several weeks, I may try to bring her home and do the antibiotics at home with a bi-pap machine. I just don't want her to have to stay in the hospital very long.

I'll let you know when she gets out or give you an update in a couple of weeks.

Thanks for everyone's positive thoughts and prayers of healing. They are most appreciated and helpful.

Take care-

Leslie

Thanks for posting this update/letter-glad she's hearing from the
Soul Patrol family

Let's hope there's a miracle in one of those messages! KOPS is sending her a goodie bag too. I think she's feeling the love.

Keep her in your prayers, that is the GREATEST thing you can do for her!

Thanks friends. You're the best!

Another update from Suzanne:

Suzanne,

I just got this email this morning from Leslie, Mary Beth's mom.  It means sooo much to them what the Soul Patrol is doing and how they are making an impact on their lives.

Thank you thank you!
Love, Nat
She writes:

Natalie,

You just wouldn't believe the response that the Soul Patrol hs had to the card drive,  She is receiving anywhere from 5 to 15 cards a day from them.  It is unbelievable.  Also, she received a Taylor Hicks Cd that was autographed with Keep Fighting - TH and an autographed picture.  Tell your friends thanks so much!  We spend time together each day opening and reading the mail.  It means a lot to her.

Luv ya,
Leslie

I sent her a card yesterday and plan on picking something up for her over the weekend. Perhaps a couple of us in the group can send her a little something.

I think of her often and wonder how she's doing.

She must have been happy to get a signed CD from Taylor!:heart::heart::heart:

Please keep sending cards and letters. If you've done it once, please do it again. You're making a difference!

Subject: mary beth update - sending to u...love, nat

Hi everyone! For those that it applies to, I hope you had a wonderful Father's day!

Mary Beth was able to come home from the hospital on Friday night June 15 at about 11:00. She is still on IV antibiotics and large doses (100 mg) of steroids. She is also still on a bi-pap machine pretty much 24/7. She had become so weak that Bob and I had to get her up our front steps and into the house.

This was one of the hardest hospital stays in a good while because we had to discuss whether or not to put DNR orders in her chart. They didn't think that it would be necessary to invoke this hospital stay, but it was precautionary. This meant that we had to have discussions with Mary Beth about what she wanted in the way of resuscitation in case she had respiratory or cardiac arrest. This was a very emotional discussion in light of her current situation with cancer regrowth and having problems with her lung disease. This is something that you are never prepared to do with your child. She and I talked about it and both of us cried as it just brought up the issue of death all over again and she told me she was afraid. When it came right down to it, she said that unless it was temporary or it would improve her quality of life, she did not want to be intubated for any reason.

She also discussed chemotherapy with her oncologist and she decided ultimately to pursue this treatment one more time to see if it was what made her sick or not. We are hoping that her stomach problems were from a virus and that she will handle the chemo this time much better. It is the doctor's intent and Mary Beth's intent for her to feel good while the chemo is slowing the growth of her cancer so that she can enjoy whatever she is capable of doing, given her lung constraints, during the time she has left.

We have basically set up a hospital room in her room, including hospital bed, bedside commode, refrigerator for her IV medications, oximeter, bi-pap machine, etc. I am administering antibiotics every 8 and 12 hours via IV along with her other medications. We are actually doing the hospital thing ....checking her vitals every 4 to 5 hours because she has had high blood pressures and they have to be monitored, checking blood sugars before meals, giving breathing treatments every 4 hours if she will let me and administering her oral medications and insulin shots. She is definitely in much better spirits and seems to be getting a little bit stronger each time she gets out of the bed. I am hopeful that this will continue. Tomorrow I hope to get her to sit in a chair for part of the day. Because of her bi-pap she is somewhat stuck in her room. We will try to take her off of her machine maybe three times tomorrow and see how long she can endure without her bi-pap.

Needless to say, I'm very tired, but this will only last a week and I get to sleep in my own bed! I am just so glad that Mary Beth gets to be at home with her cat, dogs, books and electronic equipment. I have a real appreciation for what the nurses do at the hospital. Of course I'm much slower than they are - learning curve and age I guess. Right now I feel like a resident who goes to lie down between calls.

Mary Beth's job at this point, with help, is to get weaned off of the bi-pap machine and strengthen her legs. She and I have talked about her trips and she understands that if she doesn't get stronger then she can't go to the aquarium in Atlanta and Paris is definitely out. She is physically capable of getting stronger if she will focus on increasing her activity during the day. If she's able to wean herself off of her bi-pap during the day and getting strong enough to walk up about 10 steps at a very slow pace, I think we will try to take her to the Atlanta aquarium the weekend of July 28th.

She will go to clinic on Tuesday, June 19th and start another 21 day chemotherapy cycle. We will do the chemo at home after the first day of each week over the two week regimen. Fortunately this is during the waking hours and I will be able to get some rest once the antibiotics are completed. I am very hopeful that she doesn't have any side effects from this next cycle and feels well enough to continue building her strength so she can go to the aquarium at the end of July. I haven't figured out when we will go to Paris, if we ever get to. It just depends on getting her strength back so I have put this on the back burner for the present.

By the way the cards keep coming in. We spent another hour on Saturday opening cards from Friday and Saturday. It is so good to here her laugh or giggle at a card or see a picture of an animal that someone has sent and say in her sweet way "oh, how adorable....". It is certainly giving me moments to remember.

I appreciate all of the notes to me as well. They area a bright spot in my day. Today I put on real clothes and got to go to the drug store, Bed Bath and Beyond and the grocery store. This is the first time in two weeks that I have gotten to do this and I felt such freedom. I didn't think that not getting to get out of the house/hospital was bothering me until I got to go out today. It was such a relief. I was gone for about 3 hours and my list only had about 8 things on it. Kind of sad when you can say that running errands was the highlight of your day. But I actually enjoyed it. I never realized what people go through as a 24/7 care giver for someone that can't be left alone. I have now walked in their shoes and have a much better understanding of the difficulty involved.

I am going to call it a night as Mary Beth's IV just finished and I can get a couple of hours sleep before giving her the next IV antibiotic. I will update you again as things change or we have good news to report.

Take care and God bless-
Leslie

Just seeing this Liz - will pass it on!! Thanks!