Nan Mustard's Recovery

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

Monday, October 08, 2007

"V" is our new helper, Interesting GIST news!

Dear Family and Friends,
V came at 10 this morning and we like her. She is a 22 year old gentle soul who is willing to work, willing to sit quietly and very willing to help Nan with her needs. She stayed until 6 this evening when I got home from buying ice, water and a few other basics. Terry came this morning for vitals and Nan's lungs sound clear. I went to Riverbank today, a small town that is experiencing lots of new development and inspected a 3 year old home that was near perfect, 2,200 sf and selling for $340,000. Comps were easy. Just after I completed the inspection I got hit by a rare low blood sugar episode and finally realized what was happening. One does not think that clearly when the blood sugar gets too low. Art happened to call and talked me to a Mexican place where they took good care of me and I had a wonderful lunch. I walked out feeling fine, shot my comps and then headed home.
I had a very wonderful phone call this morning from a GIST expert who deals with hundreds of GISTers on a daily basis. He has helped us many times before with advice and his call gave us a glimmer of hope. He called to let us know he was in prayer for us and that several GISTers in nan's situation, that is tumor growth on Gleevec, Sutent and perhaps now on AMN, well several of these people have had significant tumor REDUCTION using a drug that is approved by the FDA and available for use. Its primary purpose is to treat kidney cancer but an off label use seems to be very helpful in reducing stubborn GIST tumors when nothing else seems to be working. He cautioned me that not everyone has been helped but more have been helped than not. So in light of the information he shared I made an appointment with Dr. Melynk for Friday at 2:15 and we will bring it up. A possible problem, insurance is not likely to cover the cost and the drug is very expensive. Our friend suggested that the drug company might be willing to do the drug on compassionate use in the same manner as Novartis is doing AMN right now. He also cautioned me to not jump to conclusions regarding the changing shape of Nan's visible tumor. He said that until scans confirm growth that tumors can shift in shape without being actually larger. All in all his call was extremely helpful in light of our understanding that we were totally out of options. Thank you friend for your call.
Irene is in Portland tonight, getting ready for her office visit with Dr. Blankey, one of the worlds best GIST experts. She is fortunate to be able to meet with him and get a second opinion regarding the tumor growth she is experiencing. She had called nan but Nan was asleep and missed the call.
Last night I failed as a nurse. I left the valve open on her left nephrostomy tube so fluid leaked all over the bed and Nan was very cold. We did not discovery the problem until this morning so remove the sheets I put on last night and wash them. V was willing and able to remake the bed for us. Nan has forgiven me but Terry said I was a very naughty nurse. Could be the 24 hour fatigue that sets in at times.
I wanted to say thankyou to a couple people tonight, first to jason for creating the blog so long ago in a crowded motel room in Boston the next night after Nan's surgery, secondly to Loree who covered everything for months while we were away, you just can't imagine all the stuff she did for us during that time, thanks Loree, also thanks to Jim, our computer guru. He has kept our aging computer equipment working year after year and often without being paid promptly or lately at all and thanks to Ken who keeps me mostly out of trouble with the IRS and EDD, to LeAnn who not only supplies tomatoes but also is often willing to pop in to help Nan or check on her.
Please pray that Nan can experience the miracle several of you have mentioned lately. I had almost given up on hope but you have reminded me that God is in charge.
Thank you for your love, prayers and time,

tim and nan


  • At 11:52 PM, Anonymous Anonymous said…


    Poor guy I didn't think it was as bad as that. Reduced to buying ice and water. Tsk, Tsk. The real problem was where to put all the things that used to be attached to your refrigerator. Magnetic devices from around the world holding on to wonderful pictures painted by local artists and princesses. There is enough stuff to decorate two rooms and then some.

    I am glad you stayed out of the shower and joined us in song instead, "We have this hope ...". Yes we do, do I hear and a men?

    I'll keepa praying you keepa going and Nan keepa healing, there are good days ahead!



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