Some precious good news at last

Dear Family, Friends and GISTers,

We have good news to share this evening. Nan's oncology office called this afternoon with the good news that Novartis has decided that Nan can have AMN107 on the compassionate basis. While the process still has hospital review boards to pass we are well on our way to having access to this important drug that is in phase II trials already for GISTers. How thankful we are for this development which interestingly comes just one day after the prayer and annointing service last evening. I could tell from the phone call that the people who work in the doctors office were very happy with this development. I asked that they let Dr. Melynk know how much we appreciate his work toward this end.

A few minutes after the call from the Dr. office came in Loree called to tell me that she had just deposited over $1,000 in the Nan's recovery fund which had arrived from the Tracy SDA Church. That is just about the same amount that I spent last week for the Sprycel drug for a week. I felt such a lifting of the shroud of despair that has been on my shoulders for weeks. I am fully aware that we have not received the drug yet and that Nan continues to face serious issues of infection, fever, weakness. This afternoon she sat in the recliner in our room for several hours and did the walking both ways to and from the bed. When I returned from an Oakland inspection I found Nan back in bed but alert and engaged. Dana had prepared food and brought it up and Nan had dinner, She is watching a Law and Order episode and drifting in and out of sleep now. Since our morning fever of 103 when we woke the rest of the day has been normal temps.

About three years ago we had a prayer and annointing service led by pastor Jim. In a few days Nan was admitted into the Sutent program which gave us over a year of tumor stability. The news we received today a day after the service last night is a glimmer of hope in a sort of dark time. We are very thankful for that glimmer of hope and for Nan's improvement in alertness and condition this evening.

The doctors office and lab both let us know today that so far they have no idea of what infection is alive as the tests so far are showing nothing wrong, it may take at least another day before the blood cultures grow out something interesting, like fungus. So for now we keep the same antibiotic going even though it seems to be doing nothing to solve the fevers.

We are having to deal with Dana leaving in the morning, Mary has offered to drive her to the Sac. airport, we appreciate that so much as we were not sure how to get her there and still watch over Nan at the same time. Dana will fly out at 1:45 and land in Phoenix, then hope to catch a flight to Houston arriving home around 8:30. Ronnie and John will be so glad to see her and we will miss her terribly yet her being here has been wonderful and I've gained some weight as I enjoyed the tasty food, like hot cereal and bisquits for breakfast this morning.

Now Nan is sleeping soundly as we approach time to go to bed. We have had a good day and made some progress along the way. We are thankful tonight and deeply appreciate the help we received today to help with the cost of the Sprycel. Nan decided last night and this morning to go ahead and take the Sprycel just in case it might help. Now that we have AMN on its way I'm not sure what she will decide tonight regarding taking another Sprycel. Once again it will be her decision. Just now she had a bad hit of pain and she cried out.

So once again our situation changes and we continue to face severe challenges. We want to express our deep appreciation for the many messages that were emailed to the blog today. Nan was touched by each message was so happy to hear from each person. It lifted her day.

We send our love to each of you.

tim and nan and dana