Nan Mustard's Recovery

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

Thursday, June 28, 2007

Moved to a new room at John Muir Hospital, Concord Campus, A3124

Hi Out There,
We are settling into a nice new room on the 3rd floor, the oncology floor where we should have been brought in the first place. Its ironic because there is pretty much concensus that Nan will be going home tomorrow afternoon. In a few minutes we start the Sprycel. Someone replied to the blog re: the compassionate use of AMN107. We believe the facts to be this, if you are going into a trial then you cannot have used anything but Gleevec and Sutent and failed both, but Nan would not qualify for the trial since her creatins are 2.8 and the upper limit is 2, also she has been on the IPI 504 trial and has had Rapamune, all of these mean the trial would be out of the question. However it is our understanding that the rules for compassionate use are much more relaxed than for the trial. On that basis we are proceeding with the first Sprycel pill this evening. The oncologist who visited today said that Sprycel is like Gleevec on steriods so we are at least hoping and praying for some relief from it. Dr. Melynk sent word today with Dr. Shoba that Novartis has already responded and requested additional information. Dr. Melynk was working on getting it together to reply to them. All of this is good news.

Our new room has a full bed for guests, lots of room and is very comfortable. We have a nurse that was with us before and we even included a picture of her and Nan about 7 weeks ago. She is young, full of energy, sings while she works and we just love her. What a privilege to get to have her again. Nan is getting her pills, oxycontin is now 60 mg in the morning and evening, they have a new medicine that replaces Acephix since that conflicts with the Sprycel, her TPN is in place and she is settling in for the night.

I ran over to SF this evening to shoot some comp photos and managed to get back just as they were moving her from the 4th to the 3rd floors, They used an entire hospital bed to hold all our things, computer, table, recliner, nans bag, computer bag and lots of other smaller things. I now have the room set up for office and visitors to be by Nan. As doctors came in today they discussed various things, Peter Benstock from infectious diseases mentioned that some of the tumor growth he saw in the CT scan appears to be necrotic, centers filled with fluid and sort of dying. He is wondering if the infection could be caused by escaping fluids from the tumors. It is his impression that Nan can go home with antibiotics to follow, then Dr. Shoba was also of the opinion that Nan might be able to go home tomorrow and the kidney doctor also thought she could probably head home. The exist planner came by to start the process as well. So there is a strong possiblity that Nan will be heading home tomorrow. She was put on full diet today and we helped that along with food from the Spaghetti Factory where Dana and I had lunch. She has had almost no nausea since being here and the fever was only with us for the first day.

Well Nan just took the first Sprycel. We had a brief prayer over the bottle before she took the pill asking God to be in control and to cause healing to take place. We are grateful to all those who have helped Nan be able to obtain Sprycel, that includes Dr. Melynk, Dr. Morgan and Travis. We are also thankful that the kidney doctor was sharp and noticed the conflict with anti acids.

Dana has been here most of the day and is feeling better again. She went grocery shopping on her way home and I'm promised Okra and potatoes when I get home, yea! I continue to be dizzy when I put my head down but can drive without a problem. I'm just not well yet and have a few pills left to take.

Per the message to the blog, Bob and Carrol are back safely from Lake Tahoe and their sad report about the fire is alarming, Tahoe is such a beautiful area and to think of it damaged and so many people out of their homes, well it is heart breaking. I have done a couple appraisals on homes in the very area that was burned and it was an area filled with trees, rolling hills and quiet.

Nan is much better this evening, her voice is no longer slurred, her thinking is clear and concise, her appetite is good and her outlook is more positive. She is happy to be on the 3rd floor and she thinks this bed is more comfortable than her prior one, all good things. We are glad that her care has been good and that once again the doctors and nurses have helped her get back on her feet.

I enjoyed reading the blog messages today, Wes always has a clever message which makes me smile in the morning when I read, we appreciate the positive encouragement from everyone and let me tell you it does make a difference to us. Human support is a wonderful manifestation of God's care. Irene is a great example of that and we thank her for coming yesterday. Nan continues to enjoy her little doggie that breathes thanks to Pam Whitted. Everyone thinks it is so cute and Nan really loves it as it reminds her of a little dog at home that is waiting for her return.

So tonight we once again ask for your prayers, prayers that Sprycel will work, prayers that God will cause Nan to recover and protect her from infections. Prayers that Nan will feel better, have more hope and be able to enjoy the arrival of Timothy and the wonderful medicine called Keanna.

We send our love,

tim and nan and dana

7 Comments:

  • At 9:12 PM, Anonymous Marilyn in Lincoln said…

    Hello Tim & Nan,

    Good news all around - new room, new bed, new medication and a promise of going home tomorrow!! What a day. I am so praying that this new medicine will be just what is needed to stop the tumor growth for you Nan.

    Tim, I'm also praying for your dizzy head!!! At least it's only when you are bending over and you can still drive OK. Hope it all clears up with the last of your drugs - Nan needs you to be strong and well!

    Too fun waiting for little Timothy. Grandbabes are just bundles of joy and this one will be too! Just think Keanna and another one to watch grow up and love!! God is good!!

    My Patrick is coming for a few days to help me around here. The fence needs a nail or two - we both said we don't know the first thing about fixing a fence, but how hard can it be - Dad always fixed them. We'll just do what he always did and we'll have it back to new in no time!! Patrick is always so willing to come and help me out - what a blessing kids are!!

    Hugs and prayers to you both,
    Marilyn

     
  • At 9:18 PM, Blogger taesmom said…

    Nan,
    I am Jill from GSI, I don't think we have ever spoken but I am alsp fighting GIST(Carney's Triad). I will continue to pray for you, your husband and family. I know God will take care of you and your family during this difficult time. I pray He takes away your pain and suffering and gives you the peace and comfort that only HE can give.
    Blessings,
    Jill

     
  • At 11:16 PM, Anonymous Anonymous said…

    Tim,


    Well so it begins, another exciting chapter in the continuing saga of Nan and Tim. Soulmates extraordinaire!

    The room was quite and filled with soft whispers that could only be understood if you got close but were eaily heard by the God to whom they were directed. Not only could God hear Tim and Nan's sweet appeals he could also hear the hundreds of friends and loved ones that were also praying. Praying for healing and for the new course of treatment that started today.

    This will be, as all things are, a wonderful story of love were for a fleeting moment we get to play a small part in God's grand play.

    Love and Prayers,

    Wes and Nan

     
  • At 12:20 AM, Anonymous Barbie said…

    Hello dear friends, Yes, we will be praying that Sprycel is going to be good for Nan. Happy to know that Nan is feeling better, eating real food and being positive. You are amazing, Nan!
    I tried to download the pictures from Ger's camera. I followed every step and all was going well until the final step and all the pictures disappeared! I started over 4 times and it always ended the same. Frustrating!
    Tomorrow we leave for Tahoe and how I wish you all were packing up to be there, also. We will still get your parking place in order so it will be ready when Nan is ready.
    We had two different fires here in Lincoln today. The weeds in the open spaces are soooo dry. One fire burned a garage with a classic car inside but the people expressed gratitude that they still have a house.
    I'm off to bed. Good night and have sweet dreams! Love, Barbie

     
  • At 3:04 AM, Anonymous roger and carol said…

    Good Morning from NC,

    A new day is dawning ~ new treatment, new room, new bed, regular food and homeward bound. Sounds promising for a good day today. Now to conquer Tim's dizziness! No doubt the schedule you are on would tend to cause a bit of dizziness. We thank God for the strength God gives you each day with it's new challenges.

    What a blessing to have Dana there to help care for Nan when she gets home. She has her own private duty nurse. I hope Star isn't too jealous of her new rival. She just might make short work of the new competitor for Nan's love.

    Have a good day and may Nan have relief from that pain!

    Love and prayers ~ Carol

     
  • At 5:20 AM, Anonymous Anonymous said…

    Hello from Kentucky
    Just wanted you to know that your blog is very inspirational and your Nan is quite a fighter! Keep going and I admire your strength, courage and faith in God... I pray this dreadful disease will find a cure very soon.

    Nancy Schafer

     
  • At 10:06 AM, Anonymous Bob & Carrol. said…

    Hi Tim & Nan,

    Thank You for the details on the Trial Med Programs, We too were concerned with the content of the blog message as to qualify requirements for the new program. We will pray that the Sprycel brings some quality relief from pain and reduction of Tumor growth. How complicated these medical things are to deal with.

    We are bound for the Clinic this coming Monday again (every 28 days 4 hr Aridia Infusion) it hardly seems like it has been 4 weeks since We were last there. We will at that time get the readings from the MRI Scan that Carrol had 2 weeks ago. For now plans are in place for treatment from a local Neurologist. Our Family Dr feels that this Dr. can take care of the Neuroapathy (sp) that is giving Carrol a lot of discomfort in Her Hands & Fingers.

    Thank You, Tim for the Hospital location details if You are still there his weekend We will come over for a visit, If You are Home We know where that is so We are planing on seeing You Sabbath afternoon about 2:00 or so. Remember, Marie Calendar Pies are still $5.99 so tell Us what kind You would like and We will bring it over for a treat. You supply the Ice Ceram.

    What beautiful weather We all are enjoying I hope it continues for the whole Summer! (Fat Chance of that!)

    Have a good day and thank You Dana, for being there for Nan during this difficult time , Tim does so much need the comfort level that You bring when You are there for Nan while He is on the road.

    We had a safe and comfortable Trip thanks to the "Odyssey" I can not believe the level of Stability, Economy & Power of this Vehicle. Truthfully after 50 Years of Heavy High Powered Fords including 4 Lincoln Town Cars, not one of them measured up to where I would call it "Better" than the Honda. After working for Ford Motor Co for 48 Years that is something I never thought I would admit. I still have the "Blue Oval" Focus in the Family for daily run around transportation. Hard to beat that when the price at the Pump stays at the $3.00+ level. Speaking of gas prices, at the Lake Regular was $3.69 We are at $3.03 here but get a .25 cent per gallon discount at the new Raley's store on Moroda Lane at Highway 99 when You spend $50.00 in the Store on food items. We all know how easy that is to do.

    See You soon,

    Love & Prayers,

    Bob & Carrol

     

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