Nan Mustard's Recovery

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

Wednesday, June 27, 2007

Wednesday evening - progress

Dear Family and Friends,


Irene came to visit today and I did not think to get a photo. She was a most welcome guest and Nan loved having her this afternoon. She brought flowers, gifts and her lovely smile. She even thought of Jo with a special box of cookies from Singapore where she just visited. She brought some lovely yellow Iris flowers just starting to bloom out. She also brought a patriotic arrangement of carnations. in a red white and blue little pot. She told us all about her wonderful trip and brought a lot of cheer to the room.


Dana came over this morning and was with Nan for hours. She knew I was coming so went about her business ending up at home to rest and watch some DVDs. She is feeling much better today having recovered from something she ate. She surprised me with oatmeal for breakfast and some delicious dark toast that is about as big as the sink, huge slices.


I tried to accomplish as much as I could this morning at my desk and filled out several pages and faxed them away to a company that could send us some orders. All I wanted to do was leave and be with Nan, not push paper but paper pays some of the bills. We have such sweet clients who are as understanding as they can be yet still need their appraisal orders completed.


This morning I checked with Dr. Morgan about when we could start the new expensive medicine, Sprycel. He emailed back to tell us that we could start Sprycel immediatelly as it has no conflict with antibiotics. So I then called Dr. Ganey, oncologist and also talked to Dr. Benstock, infectious disease doctor about when to start. Dr. Ganey said we could start tonight. Later Dr. Wrone, kidney doctor came in and we went over the details about Sprycel. I mentioned the conflict with antiacids, Aciphex can cut the effect of Sprycel by 50%. She discovered that the TPN bag has Pepcid in it. She is writing new orders removing the pepcid from the TPN for tomorrow night. Then about 10 hours later we can start the first Sprycel pill.


Nan has had a much better afternoon and having Irene here to chit chat about the trip and about GIST and stuff has kept her awake and the most lucid I have seen her be since Friday. This evening the doctors are raising the level of her oxycontin to 60 mg in an effort to control the pain in an orderly way instead of relying on breakout meds during the day. These tend to put her to sleep and keep her from being mentally sharp. There appears to be progress on battling the infection and so far Nan is not suffering from too much extra fluid in her tissues.


Dr. Ganey did tell me the results of the CTscan today. He said there has been significant growth in the tumors since April. That was not good news but also not a real surprise. It means that finding something to deal with these nasty tumors is very important and we hope and pray that Sprycel will help. I am in hopes that we an locate pill partners who might be willing to sponsor a pill or two, they are $80 each and we have purchased a weeks worth already and have them on hand ready to start.

I continue to be able to work but am constantly slightly dizzy and certain moves really bring on the spinning world. Nan is beginning to drop off to sleep. She has been awake a lot today and will sleep very well tonight, at least I hope so. We continue to hold onto hope and really appreciate you being involved with us. We know you have busy lives and we appreciate the minutes you share with us in prayers, calls and kind helpful encouraging words.

We now sign off for the evening, Nan to go to sleep and for me an hour trip home, fall into bed and try to sleep. We believe God is in control but we find it hard to understand the hows and whys.
Please keep Nan in your prayers. At this moment Irene has called letting us know she is home safely. What a total blessing she is.

love

tim and nan and dana

6 Comments:

  • At 9:59 PM, Anonymous Anonymous said…

    NEWS FLASHES
    (from the blog)

    TIM GETS TOASTED BIG TIME!

    TIM ENJOYS OATS!

    TIM'S NEW MOVES CAUSE DIZZINESS!

    IRENE BRINGS A LITTLE POT!

    BEWARE THE SPECIAL COOKIES!

    TIM TURNS INTO PAPER PUSHER!

    Continuing prayers for your sucessful quest for Sprycel.

    Wes

     
  • At 11:29 PM, Anonymous Barbie said…

    Hello to Tim & Nan,

    Good news that Sprycell will be started and we pray that Nan will be one that it can help.

    We have been keeping track of the fires at Tahoe. Camp Richardson is where we have campmeeting and I am hoping all will be cleaned up in time for campmeeting at the end of July. We have friends that have a cabin close by the fire area but the fire has not gone to their neighborhood. We still plan to go up on Friday. Jeni is going to Yosemite to do some rafting on Thursday to Sunday so we will see her before we come home on Monday.

    We will be going to the 4th of July parade here in Lincoln. We love the parades in Lincoln...just home town fun!

    Peace and love...Barbie

     
  • At 8:36 AM, Anonymous Anonymous said…

    Nan and Tim,

    Life is such a YO-YO isn't it?

    The emotional drain on you both must be so exhausting in itself.

    My prayers for the new drug to help to stop the tumor growth of the dreaded GIST and shrink them to the point of at least no pain.

    I hope that you feel better Tim, can't have you down also.

    I am not familiar with Sprycel but look forward to the results.

    Stay Strong!

    Sue M

     
  • At 3:22 PM, Anonymous Anonymous said…

    I know your doctor has recommended Sprycel, but you should be aware that in order to get AMN107 for compassionate use, you cannot have been on anything other than Sutent and Gleevec, and you must have failed both. At least your doctor has to report that you failed both. You should check this out thoroughly before you take the Sprycel.

     
  • At 3:49 PM, Anonymous Anonymous said…

    Dear Nan,

    My thoughts and prayers are with you as you and your family go through these very trying times.
    "Do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."
    Isaiah 41:10

    In His Name,
    Janice Gabriel

     
  • At 5:43 PM, Anonymous Bob & Carrol said…

    Hi Tim ,Nan & Dana,

    We just got back from Lake Tahoe, What a sight that Fire was to see, so devestating in so many ways but thank goodness they seem to have the upper hand on controling it as of 11:00 am. when We left there this morning. Roads were again open and We went right through on 89 & 50 . We were able to watch the Fire Department Helicopters fill their buckets from the Lake and drop the contents on the fire on the west end of the lake. We were watching from the 18th floor observation windows at Harrah's.

    We will indeed Pray that the right Med combination will be found for Nan. She so deserves to feel better.

    Love & Prayers,

    Bob & Carrol.

    PS. What hospital are You in ?

     

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