Nan Mustard's Recovery

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

Sunday, July 01, 2007

Nan very weak, please pray

Dear Ones,
I am writing at 9:10 tonight as I intend to go to bed on time what ever that means. Our day has been eventful and alarming as well. Last night we were up 4 times, I was sleeping in our room but could hear every breath Nan took in her hospital bed in the family room below. At 2:30 she decided she wanted to move upstairs so she and I did the things we need to do and stood her up, the pain was so intense in her feet that she could not handle it and sat back down and then laid down in the bed and decided to stay put. At 7:30 this morning she started chilling so gave tylenol, ice packs under the arms, uncovered her and infused the antibiotic right then. Her fever climbed to 102.6, leveled off and then started to slowly decline. After awhile she was normal again. Later she decided she wanted to sit in the chair so once again we did the things to prepare for moving and she put her hands around my neck and I lifted her up that way. I would take a small step back and she would shuffle forward and in that manner we made it to the chair where she stayed for the next 4 or 5 hours. Dana fed her a delicious lunch, Keanna and Nikki came to visit and eat and Keanna announced upon coming in. Grammy I have come to make you feel better, it was totally true. Mid afternoon Nan decided she wanted to trek to the upstairs bedroom with the comfortable bed. It took Dana, Nikki and myself to help her handle it. She walked to the three steps from the family room and we lifted her up for each step, then into a rolling office chair for the short ride to the stair chair, that transition was a tough one but she finally got into the chair and rode it up, then getting her out of the chair into the walker seat was even tougher and she started to go down. We all grabbed and lifted her up causing a lot of pain. She rode to the bedside and climbed in breathing heavily. Before long she was asleep and she has remained asleep most of the afternoon with brief waking moments to say good by to Keanna and Nikki and to have bags emptied and temperature checked. She says the bed is so much more comfortable than her hospital bed and has really rested well with only one shot of dilautid this entire afternoon. She says her entire body feels as if it has been beat up and we are thinking the Sprycel might be the culprit. I sent an email to Dr. Morgan asking what kind of side effects people who take it have. After the 2nd fever in two days I called Dr. Ganey who was on call and he ordered blood cultures be taken tomorrow, Terry is already on it with plans to pick up the correct tubes at a lab in Brentwood at 7 in the morning. We also heard today that a nurse is coming from John Muir to help her bath and assess her needs and a physical therapist is also supposed to be coming. Tomorrow evening our pastor Jim and some of the elders from our church are planning to come and have a special service called prayer and annointing. Years ago when things were very bleak we had the same service and God answered by getting us into the Sutent trial at City of Hope. That trial supressed her tumors for nearly 18 months before failing. We are just seeking God's special intervention in her life and want to avail ourselves of this special service.
Today we have enjoyed and appreciated the messages that have been written to the blog. We heard from very precious people who we know and love, all four messages are heart touching and encouraging to be sure.
Dana and Nikki were both very helpful today with mom. The extra weight which was added due to excess hydration at the hospital has made it much more difficult for Nan to rest or to walk. Her feet are once again very painful due to the fluids in her tissues. We have emptied many beakers of fluid today which means we are starting to get some of the extra stuff off.
Dana has once again prepared spendid food and Nan enjoyed having such good items to eat and drink. In addition Dana has been on a tare to clean cabinets in the kitchen and so many loads of trash have made there way to the dumpster for a morning pickup.
I had an agenda today to complete and have completed none of it, I have worked at my desk a lot but failed to complete appraisals that people are asking for in the morning, yikes! I have bounced up every few minutes to attend to this or that and found it almost impossible to concentrate on work. Having nan so near by and so very weak and ill, thats where I want to be, with her.
So questions that confront me this evening, should I have nan back in the hospital? Should we put off this evenings dose of Sprycel to give her body a chance to bounce back? will skipping ruin the chances of tumor reduction or control? Will we have to contend with a fever tonight? Can Nan find her courage and fight herself back to being on her feet again? I think we were all surprised to find out how weak she was today. It is a shock really.
I took my last dizzy antibiotic this morning and hope what I have in my body will continue until the bugs are gone. I'm finally feeling better this afternoon with less pain in my stomach. What a challenge life is.
Can I ask you to pray tonight for Nan. God knows her full medical history and the current state of things inside, no one else seems to have a clue. So I ask that God will do His will in Nan. My will is that she gradually regain strength, alertness and hope. Thank you for your prayers and thank you Di and Steve Souza for the beautiful flowers that came yesterday, what timing, in the midst of disaster here came beautiful flowers. And Irene your cards are very very special and your emails are always helpful. Art and Pam, I could not manage without your calls of support and love for us both, Mary you are the mother we both wish we always had, you are so special to us and we know your heart of love.
It seems almost impossible that Dana has to leave on Wednesday but she does, I know things will work out but at this point I don't know how yet. We will certainly miss her.

So I say good night, we love each of you and we thank you for everything you do every day.

love

tim and nan and dana

12 Comments:

  • At 3:53 AM, Anonymous Anonymous said…

    Hi Nan, Tim and Dana,

    I found your blog following a link from the GIST support digest. My name is Claire, and I live in NSW Australia. I joined the support digest after I was told on the 23rd of Nov 2006 that I had a GIST. Lucky for me it was not.

    Anyway, I have been reading through your blog, and I wanted to send you a letter of encouragement and prayer. I understand what you are going through at the moment, and I am keeping you all in my prayers, and also have emailed my friends who will also keep you in their prayers. The power of prayer is an amazing thing. The same day I had a partial gastrectomy (when they still thought the tumor was a GIST), my Dad went into a coma. He had broken his neck 2 weeks before, and had become increasingly unwell. The Dr's didn't think he would live, and 2 days after my surgery my Dr let me fly down to see him before he died. 8 months later, after an amazing recovery, Dad is alive and well, and has returned to his full time job as National Director of Education for the SDA church here in Australia. There is no way that Dad could have recovered if it were not for the prayers of family and friends, and for the healing hand of God.

    Daily I recite Philippians 4:13, I can do all things through Christ who strengthens me. I will keep you all in my prayers.

    Love

    Claire

    clairekosac@gmail.com

     
  • At 4:35 AM, Anonymous roger and carol said…

    Dear Tim,

    What a day you had yesterday! . Your heart must be heavy as you see her getting so weak. You want to help her and make her comfortable yet you feel so helpless to know just what to do. As you said, "God knows her full medical history and the current state of things inside, no one else seems to have a clue. So I ask that God will do His will in Nan." That is the best thing you can do for her, Tim! Now trust that He is doing His will.

    Little Keanna is such a blessing to you. She is a breath of fresh air in the midst of pain and frustration. Yes, she is one of God's gifts to you. You have a very special daughter who seems to pop in at just the right times. And you have a son and daughter-in-law who have been caring and supportive and now about to present you with a little Timothy. Dana and Sharon have been very helpful and nurturing. You have been blessed with a very special family! You have a home health nurse who is gentle and helpful. Many friends have come to help and be with you and you have literally hundreds of praying concerned friends around the world. Yes, you are blessed!

    With Nan upstairs now you may need to move your office upstairs to be near her. Too bad that gel mattress hospital bed is not more comfortable for her. The location would be easier on you.

    Our prayer today is for God's ministering angels to be near you both, for wisdom to know what to do, for patience to let God lead in Nan's care, for peace in your hearts, for relief from pain for both of you, for God's sweet spirit to surround you today.

    We love you both and we hold you up in prayer today and everyday!

    Love and prayers ~ Carol

     
  • At 5:28 AM, Anonymous Anonymous said…

    Tim and Nan,

    I know not what to say, I am not that good with words it seems. Long ago, when I was so ill with an unrelated illness to GIST, I lay in my bed in pain and fear and I remember reciting the Lords Prayer over and over again.


    Our Father, who art in Heaven, hollowed be thy name,thy Kingdom come, the will be done, on earth as it is in Heaven.

    Give us this day, our daily bread, and forgive us our debts as we forgive our debtors. And lead us not into temptation, but deliver us from evil.

    FOR THINE IS THE KINGDOM, AND THE POWER, AND THE GLORY

    FOREVER

    AMEN

    SUE M

     
  • At 7:56 AM, Anonymous Bob & Carrol. said…

    Hi Tim & Family,

    My Heart is breaking for You this morning, Since 3:30 I have only been able to sleep a few minutes at a time, My thoughts were so troubled and a big part of that was concern for You & Nan.

    Dear Lord, hear Our Prayers for this Valiant Lady that has given Us all so much joy. How We want Her to be restored to Us all and have the Healing & Comfort that only You can give Her. Thy Will Be Done.

    Tim, We echo the comments & thoughts of each One that is responding to Your message this morning. Be assured that We will continue to lift Nan up to the Lord in Prayer .

    God bless & Sustain You,

    Love,

    Bob & Carrol.

     
  • At 9:43 AM, Anonymous Anonymous said…

    Hi Nan, Tim & Dana

    I am from GSI, my husband is the GIST patient. Please know that throughout your trials, you are an encouragement and inspiration to others fighting the same battle. I am praying that these recent trials are just a "bump" in the road to better days. Lifting you all up in prayer.

    Vicky

     
  • At 10:06 AM, Anonymous Anonymous said…

    Tim,

    I hope that today offers some encouragement. It is so difficult to constantly live with a shadow over your head with no relief on the horizion. There was one silver lining in your blog. The Keanna quote, "I'm have come to make you better", reminds me of another quote, " I have come that you might have eternal life".

    It is amazing to me that a little girl can come into the room and accomplish. The room with the pain and stuggle of healing. The room with no btight spots on the horizon. The room that has had little to cheer about for a long time. The room is changed. What was different? Nothng really, just a change in attitude and perspective. The power of children, friends, prayers and God are here for you to help change the perspective.

    Do not worry it is not productive. Work hard at what you can do and rest will take care of it's self.

    My specific prayer today is for Nan to have relief from her pain so her strength can be used to fight her difficult health issues!

    Wes

     
  • At 12:59 PM, Anonymous Anonymous said…

    Tim and Nan:

    It is difficult to understand the reason why Nan has suffered so much. I read the blog and lately it seems like there is more and more pain. I also read the comments and they all make sense, I just don't know what else to write. Please know that we care and pray for you every day. A few days ago when Art left a couple of messages and didn't hear from you, we were so concerned but Art decided to wait until the next day, he knew that if you could you would return the calls - this was the day you were getting Nan out of the hospital.

    I think Nan needs to be in the hospital as she is so sick. God only knows what is best for Nan. Tim, you must take care of your health.

    Last night I fell as I was going out to the garage, I'm still sore but thank God nothing serious happen. A little ice and ibuprofen are helping.

    Art has been busy around the house - just ask him how much he has accomplished. He probably wants to make sure things are done before our next trip, probably in August.

    Again, our prayers and thoughts are with you.
    ---Connie

     
  • At 2:02 PM, Anonymous Anonymous said…

    Aloha from Hawaii,

    I have not yet had the pleasure of meeting any of the Mustard clan but I will someday. The strength that is there encourages us all.

    I know it is a battle now for everyone. I am so glad though that God knows everything and will guide and provide comfort for you all. He is the Alpha and the Omega. The beginning and the end. He knows it all and will be there for you.

    I pray that he will reveal his plans to all of you and grant you strength.

    I hope that the medicine will do its work to keep the tumors stable and that your strength will be renewed.

    Until we meet.

    Bill(5-0)

     
  • At 3:26 PM, Anonymous Richard said…

    Aloha, Nan and Tim
    I wish I could levitate Nan and her comfy bed to our favorite beach here in Hilo, where it's sunny and warm today and the trade winds are gently moving the palm trees. I pray that God will remove Nan's pain and restore her wellness. And I'll add a prayer of thanksgiving for Tim, caregiver extraordinaire. May God strengthen you and be with you always.
    Richard in Hilo

     
  • At 5:15 PM, Anonymous Anonymous said…

    To all who read this blog: I ask each of you to stop whatever you are doing and pray a special prayer for Nan at the same time that Nan is being annointed this evening. It will take place at 7:00 in California; 9:00 in Texas and Oklahoma; and for all my family in Tennessee and Georgia it will be 10:00. I truely believe in prayer and I know that God will hear our prayers. There is strength in number. We do ask that God's will be done, as He sees what we cannot. I pray that He will reach down and put His loving arms around Nan and I pray that she will feel the warmth of His touch. I pray that Tim will also feel His strong arms around him as well.
    There is nothing like the touch of our Lord. If we only knew how much He has carried each of us through when we felt we were alone, we would be on our knees for the rest of our lives, never ceasing to thank Him. I know He has carried me through some very tough times and I'm sure that is true for all of us. Tim, be still and allow Him to speak to you and whatever He feels is best for Nan at this time, thank Him for it. You know that we all love you both and be assured that we will be with you both this PM. Love and prayers always,

    Sharon

     
  • At 7:00 PM, Anonymous Louise Ladd said…

    Nan and Tim, I just read your latest news and I'm so very sorry you are going through this terrible time. I'm a 10-year survivor, as of July 4th, the day after tomorrow. It is also my 64th birthday. A ruptured tumor was my present on my 54th birthday. I've read about your fight for years, Nan, and the wonderful support you receive from your dear Tim. I am not a praying person but I will send all the good wishes I can summon your way, and they are many, believe me. I know the mind has powers we don't suspect. I have experienced some of them.
    You've been so courageous for so long. I hope you'll find your way soon, and be spared more misery and suffering. I've been down like you, and now I'm rather up, so I know this beastly disease can take many courses. Please be well, and Tim, please know that many of us care and are cheering for you and Nan.
    With love, Louise Ladd

     
  • At 7:12 PM, Anonymous Phyllis Lytle said…

    Dear Tim and Nan,

    I don't know what more to say; it seems that our hearts are united in thought and prayer for you both.

    Our Abba Father holds you closely and will give you strength, peace and healing of body, mind and soul; as only He can...your are His blessed and dearly loved children.

    Love and prayers,
    Phyllis - North Carolina

     

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