Nan's pain level increases but no fevers
Dear Family and Friends,
This evening Nan is resting quietly after a day of bursts of pain, hits of Dilautid ranging from 2 to 4 mg, hours in our portable recliner. As Nan puts it, not as good of day as yesterday. During the night her right leg became numb so this morning she had another CT scan to see if there were any new problems, there were not. It appears from reading the reports that there are about 4 major tumors and 2 have mostly died but have small tumors growing in their dying midst. One is 15 by 8 cm and the others are smaller. In light of the recent tumor growth I decided to call Dr. Warrens office, he is the head oncology surgeon at UCSF. we have met him after we came home from Boston and he offered to help in any way he could if needed. His office assistant Diane suggested I fax over the CT reports which I did. He will study the reports and then if he needs more data I will drive over the CT CDs so he can study them. I am doing this because I think we need to cover all options. We are fully aware that the chance of a surgery is minimal at this point but of course that is what we were told before going to Boston last year. Based on what Boston has communicated to us we have also restarted Gleevec. We waited all day today to speak to her doctor about the Gleevec but we never saw one so we just decided to start it again. The doctors here not being fully aware of GIST tumors are always having us stop taking Gleevec, they do not realize that even when Gleevec has failed and tumors are growing it still controls their rate of growth, much better than just letting the tumors run free. I called our oncology office this morning and was promised that someone would call me back with the progress of AMN, all day I waited and at this point I don't think anyone is going to call. In light of the severity of the situation that irks me just a bit. We need that drug, not tomorrow but now.
Today Nan was so delighted to see Donna and Shawn Want. They drove all the way over from Lodi to visit, bring Sees candy and a beautiful carnation arrangement. They stayed only briefly but it was so great to see them and hear their words of comfort and cheer. Early this morning Nan got a call from Dolly who encouraged her and prayed with her, it helped a lot.
Today it has been confirmed that Nan does have staph infection in her blood, as the cultures develop other bugs may become visible but the meds being given for the present infection are doing a great job, she has had no fevers, no confusion since entering the ER on monday. She has had meals and this time around there must be a new cook, the food is very good. This morning she had cream of wheat and for lunch baked mac and cheese and a fresh peach, this evening good tomato soup and a piece of sees candy!
With the help of excellent nurses Nan's care has been good today, this evening an aid has just been tremendous, he offered a soda and brought me a case and ice, when he brought Nan's ice bucket he brought a towel for it to sit on so it won't sweat and make a mess, he is gentle and very very good at what he does.
Dana will be here in the morning and I intend to get an appraisal written when I get up in the morning, then mid day I will see a property in Alamo which they hope is worth 1.9 million dollars. That one appears to be COD which will help with the growing crisis of the lack of money to cover expenses.
Nan was delighted to hear from Joe and David today. They plan a visit on August 1 and we look forward to seeing them again. Nan woke up while Joe was on the phone and got to talk to her mom briefly. Of course it is unknown if mom could hear anything since her hearing has left the room some time ago.
Jo and Jason continue to adjust to their precious new guest and Jo is battling some health issues too. They both need our prayers tonight. Julie has been a big help with the baby but has to go home this weekend.
It was very good to read the comments made to the blog from friends, thank you for your concern, prayers, cards, flowers and Sees candy.
So we pray for a quiet calm night with no pain, tumor reduction, answers and God's will be done.
Sending our love,
Tim and Nan
This evening Nan is resting quietly after a day of bursts of pain, hits of Dilautid ranging from 2 to 4 mg, hours in our portable recliner. As Nan puts it, not as good of day as yesterday. During the night her right leg became numb so this morning she had another CT scan to see if there were any new problems, there were not. It appears from reading the reports that there are about 4 major tumors and 2 have mostly died but have small tumors growing in their dying midst. One is 15 by 8 cm and the others are smaller. In light of the recent tumor growth I decided to call Dr. Warrens office, he is the head oncology surgeon at UCSF. we have met him after we came home from Boston and he offered to help in any way he could if needed. His office assistant Diane suggested I fax over the CT reports which I did. He will study the reports and then if he needs more data I will drive over the CT CDs so he can study them. I am doing this because I think we need to cover all options. We are fully aware that the chance of a surgery is minimal at this point but of course that is what we were told before going to Boston last year. Based on what Boston has communicated to us we have also restarted Gleevec. We waited all day today to speak to her doctor about the Gleevec but we never saw one so we just decided to start it again. The doctors here not being fully aware of GIST tumors are always having us stop taking Gleevec, they do not realize that even when Gleevec has failed and tumors are growing it still controls their rate of growth, much better than just letting the tumors run free. I called our oncology office this morning and was promised that someone would call me back with the progress of AMN, all day I waited and at this point I don't think anyone is going to call. In light of the severity of the situation that irks me just a bit. We need that drug, not tomorrow but now.
Today Nan was so delighted to see Donna and Shawn Want. They drove all the way over from Lodi to visit, bring Sees candy and a beautiful carnation arrangement. They stayed only briefly but it was so great to see them and hear their words of comfort and cheer. Early this morning Nan got a call from Dolly who encouraged her and prayed with her, it helped a lot.
Today it has been confirmed that Nan does have staph infection in her blood, as the cultures develop other bugs may become visible but the meds being given for the present infection are doing a great job, she has had no fevers, no confusion since entering the ER on monday. She has had meals and this time around there must be a new cook, the food is very good. This morning she had cream of wheat and for lunch baked mac and cheese and a fresh peach, this evening good tomato soup and a piece of sees candy!
With the help of excellent nurses Nan's care has been good today, this evening an aid has just been tremendous, he offered a soda and brought me a case and ice, when he brought Nan's ice bucket he brought a towel for it to sit on so it won't sweat and make a mess, he is gentle and very very good at what he does.
Dana will be here in the morning and I intend to get an appraisal written when I get up in the morning, then mid day I will see a property in Alamo which they hope is worth 1.9 million dollars. That one appears to be COD which will help with the growing crisis of the lack of money to cover expenses.
Nan was delighted to hear from Joe and David today. They plan a visit on August 1 and we look forward to seeing them again. Nan woke up while Joe was on the phone and got to talk to her mom briefly. Of course it is unknown if mom could hear anything since her hearing has left the room some time ago.
Jo and Jason continue to adjust to their precious new guest and Jo is battling some health issues too. They both need our prayers tonight. Julie has been a big help with the baby but has to go home this weekend.
It was very good to read the comments made to the blog from friends, thank you for your concern, prayers, cards, flowers and Sees candy.
So we pray for a quiet calm night with no pain, tumor reduction, answers and God's will be done.
Sending our love,
Tim and Nan
posted by Tim Mustard @ 9:10 PM
2 Comments:
At 7:40 AM,
Anonymous said…
Tim,
Now I know the secret of your success. When others are not performing as needed or expected you are irked a little bit. No wonder you are so successful. In the case you mentioned regarding the call back from the doctor I would have gotten passed irked and moved over to hateful! That of course explains why I am less sucessful.
Your friends and family are very proud of you and the way you deport yourself. It makes you a good friend as well which is a nice side benefit.
We here continue to pray for you, Nan and Jo as well as your other friends that you make time to mention that need prayer. You do the parts you can do and we will do the parts that we can do and that will be the best that can be done. Whoa! What will we worry about then?
Love from our family to yours,
Wes & Nan
At 8:10 AM,
Anonymous said…
Hi Tim,
It sounds like Nan's vitals are stable even if the tumor is not. Being without the fever and nausea is a good thing at least. Good food in the hospital? That's a novel thought. That staph infection is not good, however. Now to get input from the Dr. who doesn't return calls......
Good news on getting a COD appraisal. That's always a positive to know the money is actually coming in a timely manner.
Busy day here! We're having a "get together" with our guests today. The grand kids are here. We close on that "flip" house today. Just a normal day at Lakemont.
Today we pray for you, Nan, Jo, Jason and little Timothy. We place all of you in His hands.
Continued love and prayers ~ Carol
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