Nan Mustard's Recovery

This blog is a record of Erin (Nan) Mustard's recovery.

Tuesday, October 16, 2007

Slight improvement for Tuesday


Dear Family and Friends,

Nan just asked if she was going to be a guinea pig forever? In a way she is a forerunner for other GISTers who will follow. For example today Dr. Ganey agreed that we could switch over to Nexavar the drug that holds some slim promise of shrinking tumors and controlling them. He was here assessing her situation. New blood cultures were drawn today and since the picc line would not allow a blood draw she has had to be stuck three times today in her left hand, she did not enjoy that at all. Our friend Art came to visit this morning, held Nan's hand for awhile and then we inspected his new coach and he took me to lunch. Art is a level headed person who has experienced his share of heartbreak in his life and is a true friend to us. Finally he had to leave and I missed him instantly. Its been a cold rainy day but Nan has shown a bit of progress. This morning her fever went up to about 103 but then started falling and is now normal. As the temp fell she was more able to communicate and we had some pretty good talk time. She longs to go home but I've explained that first we deal with the infection which is proving very stubborn and resistant. They pretty well have found a way to deal with her pain and it involves Dilautid every 2 hours or so and Adavan every 4 hours. This gives her rest and comfort while still allowing for a brief time of being awake. She is handling her water bottle well today and has far less shaking than before.

I have no idea if insurance will spring for the new meds or not, I doubt it so it may be up to us to find the funds for the medicine. It will be clear within the first few weeks if it is helping or not and if it is then we would push Bayer to consider supplying it to Nan on a compassionate basis. Lots of bridges to cross if we get the chance. Right this minute her mind is focussed on just one thing, a new hit of Dilautid as enough time has passed that she is missing it and feeling pain again.

I had the chance to talk to both Nikki and Jason today as they drove home from work. It is always great to hear their voices and be reminded the family is a team of caring people who love this lady with all their hearts.

I've been able to accomplish some work from my little laptop office here in the room which is connected to the outside world by a Sprint data card. What a little miracle that is, otherwise you have to find a landline that will work and hospital switchboards do not like to transfer data for very long.

This afternoon Mary and her little 2 year old grandson appeared at the door. What a cute little guy Owen is. They only stayed briefly since Nan had just taken her meds and was quite sleepy but it was so good to see them. I've included a photo of them with Nan. She would probably tell you that the photo does not show her at her best.

We will have a quiet evening for when she gets the Dilautid infusion she will sleep for the next couple hours probably. And I will slip out and buy a tiny desk lamp so I can work without having the lights on. Lights and hall noises are really bothersome to her just now as her sleep is shallow usually and easily disturbed.

You have heard us mention Roger and Carol who live in N. carolina. This evening Roger is traveling along with a brother to see a brother in Seattle who is very ill. Lets keep Roger and his family in our prayers as the illness is very serious. This means Carol gets to hold down the fort with all the cabins all by herself so she needs our prayers also.

This evening we ask that you pray for Nan's infection, for some solution to the tumors so there would be less pain, for her courage to not run dry and for calmer times soon.

Love to all from room 3117.


tim and nan

3 Comments:

  • At 6:45 PM, Anonymous roger and carol said…

    Hi Tim,

    Looks like you had a rather low key day. This is good. I think back through the years with Nan ~ she has been a "guinea pig" for several meds and treatments and has paved the way for treatment for other GISTers. I remember her saying, "It may not help me, but maybe it will help someone else." Some have worked for a time and others have not worked at all. She very unselfishly gave herself for research. Maybe someday someone will find something that will work for all GISTers! Thank you Nan for being willing.

    I haven't heard from Roger yet this evening. He was going directly to the hospital from the airport and there is a 3 hour time difference, so I may not hear tonight. Thank you for your concern.

    It's so good to hear that Nan's pain level is finally under control. Pain can wear you both out quite quickly. We thank the Lord for hearing or prayers on her behalf.

    I'm off to bed to get ready for another busy day.

    Love and prayers ~ Carol

     
  • At 6:51 AM, Anonymous Anonymous said…

    Tim,

    I see that you have an infection. It is obvious that it came from contact with Art. I know because I get one everytime I am with him. It is a good infection, positive, insightful and happy. I long for my next exposure and hope your infection lasts longer than usual this time.

    What a friend Nan is to others. Her journey as a (guinea pig), the one who goes first is full of difficulty and disappointment. There is of course great love and peace as well and on the days when the pain does not overcome her clear thinking she has to have a wonderful felling that few experience. The feeling that comes to those that live their lives for others! We all count our multiplied blessings that come from Nan and other heroes like her.

    Countless blessings and untold joy heaped upon your head today dear Nan, is our prayer!

    Wes

     
  • At 10:46 AM, Blogger Irene Wing said…

    Dear Tim,
    How I know that Nan is a pioneer in the GIST wilderness. Yes, her bravery in dealing with all these challenges will aid in the research for future diangostic evaluation. I look to Nan not only for that but for her courage and strength through love of her family, friends and her Lord.
    Tim, there is a special message for you on the Life Raft Group listserv (GIST website) from a very kind GISTer in Kenya. I hope it will lift you up.
    Give Nan a hug as big as she can hold.
    Love,
    Irene

     

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