Overwhelmed by your feedback, thanks
Dear Family and Friends,
This day started early this morning at 4:45 when Nan needed some liquid removed with the pump. Then back to sleep until about 7:45 expecting Terry to arrive at 8. she was help up and did not get here until afternon 9. Then the picc line refused to let her draw blood so after doing the rest of her routine she had to go for the day. She is coming back this evening when she gets home from Kaiser where she has been doing picc lines herself today. A very long day for our dear Terry. Marilyn got caught up a bit on her sleep and we all had a quiet day here. I worked producing a review and am almost through with a relo for a home in Martinez. I have been praying for direction and for blockage breakage.
I decided on a whim this morning to write an email to Travis Quigley, trial coordinator for Dana Farber. He has been so good to us in the past and is an amazing person in all that he gets done for so many patients. He responded instantly and offered to help with gathering material or anything else needed to make the AMN drug happen. He asked that I get the email address for our oncologist, Dr. Melynk. I tried from noon on today to get his office to get me the email address and as of tonight I have no call back, perhaps its our lousy Vontage line. That was disappointing. Also on Life Raft.org our GIST website someone was writing about her father who is on compassinate AMN right now, she said it took about 6 weeks to get the drug. So we need to get cracking on this.
We have pumped Nan's stomach several times today and this evening she tasted the juice of a fresh cherry that Art and Connie had brought to us, she loved it, just to taste something normal again. Marilyn is helping her change her dressing but when Nan peeled off the old bandage there was NO liquid there at all, totally dry, not sure if that is because we are pumping liquids out but no draining at all.
This afternoon at 1 pm Nan decided she needed a quiet nap so she walked to her stair chair and rode up, walked to bed and I gave her Adavan. She slept from 1 to 7 without waking at all. Tonight she seems more rested which is a very good thing.
This morning I was peppered with phone calls about payments that are slightly and not so slightly behind but todays mail brought no checks, boo.
We really enjoyed the messages that were sent through the blog today. Everyone touched our hearts and reminded us of happier days. When you write it helps and now that Nan can sometimes manage her computer she will get to read the messages herself. Thank you.
Its now 10:35 and Terry is still not here, I think she might need to come in the morning. She has had a very long day and must be too tired to even think.
This afternoon after nan's nap she mentioned that I needed to empty her colostomy bag, yes it had some liquid, very foul inded, in it and amazingly a gleevec tablet. Nan has not taken gleevec for at least three weeks and here is a tablet floating away. Not sure what all this means except that tablet got past the blockage somehow didn't it.
So for now good night my friends, please pray that we can get moving on the AMN drug paperwork, that the blockage will release, that the tumors will be stopped in their little tracks.
And while you are praying ask God for another one of those cows he has on a thousand hills, I'll take it in the form of checks actually.
Tomorrow I'm off to SF and Daly City after working in for a while in the morning. Marilyn is very comfortable helping Nan with pumping and stuff.
Today the repair person called and said he had changed his mind about buying the AC compressor from VW. He said Napa has a new supplier that is supposed to produce a better quality unit and would I mind going by and picking it up, I jumped at the chance but it never came in after all. Now it will come in tomorrow when I am in the city and I'll lose a day of bug use, oh well. The Fiero is growing on me, I'm actually enjoying driving it again.
Good night or morning dear friends, nan is doing OK and still awake now waiting for Terry, She and Marilyn are watching a frazier episode, the back door is open with cool breezes wafting in.
love
tim and nan and marilyn
This day started early this morning at 4:45 when Nan needed some liquid removed with the pump. Then back to sleep until about 7:45 expecting Terry to arrive at 8. she was help up and did not get here until afternon 9. Then the picc line refused to let her draw blood so after doing the rest of her routine she had to go for the day. She is coming back this evening when she gets home from Kaiser where she has been doing picc lines herself today. A very long day for our dear Terry. Marilyn got caught up a bit on her sleep and we all had a quiet day here. I worked producing a review and am almost through with a relo for a home in Martinez. I have been praying for direction and for blockage breakage.
I decided on a whim this morning to write an email to Travis Quigley, trial coordinator for Dana Farber. He has been so good to us in the past and is an amazing person in all that he gets done for so many patients. He responded instantly and offered to help with gathering material or anything else needed to make the AMN drug happen. He asked that I get the email address for our oncologist, Dr. Melynk. I tried from noon on today to get his office to get me the email address and as of tonight I have no call back, perhaps its our lousy Vontage line. That was disappointing. Also on Life Raft.org our GIST website someone was writing about her father who is on compassinate AMN right now, she said it took about 6 weeks to get the drug. So we need to get cracking on this.
We have pumped Nan's stomach several times today and this evening she tasted the juice of a fresh cherry that Art and Connie had brought to us, she loved it, just to taste something normal again. Marilyn is helping her change her dressing but when Nan peeled off the old bandage there was NO liquid there at all, totally dry, not sure if that is because we are pumping liquids out but no draining at all.
This afternoon at 1 pm Nan decided she needed a quiet nap so she walked to her stair chair and rode up, walked to bed and I gave her Adavan. She slept from 1 to 7 without waking at all. Tonight she seems more rested which is a very good thing.
This morning I was peppered with phone calls about payments that are slightly and not so slightly behind but todays mail brought no checks, boo.
We really enjoyed the messages that were sent through the blog today. Everyone touched our hearts and reminded us of happier days. When you write it helps and now that Nan can sometimes manage her computer she will get to read the messages herself. Thank you.
Its now 10:35 and Terry is still not here, I think she might need to come in the morning. She has had a very long day and must be too tired to even think.
This afternoon after nan's nap she mentioned that I needed to empty her colostomy bag, yes it had some liquid, very foul inded, in it and amazingly a gleevec tablet. Nan has not taken gleevec for at least three weeks and here is a tablet floating away. Not sure what all this means except that tablet got past the blockage somehow didn't it.
So for now good night my friends, please pray that we can get moving on the AMN drug paperwork, that the blockage will release, that the tumors will be stopped in their little tracks.
And while you are praying ask God for another one of those cows he has on a thousand hills, I'll take it in the form of checks actually.
Tomorrow I'm off to SF and Daly City after working in for a while in the morning. Marilyn is very comfortable helping Nan with pumping and stuff.
Today the repair person called and said he had changed his mind about buying the AC compressor from VW. He said Napa has a new supplier that is supposed to produce a better quality unit and would I mind going by and picking it up, I jumped at the chance but it never came in after all. Now it will come in tomorrow when I am in the city and I'll lose a day of bug use, oh well. The Fiero is growing on me, I'm actually enjoying driving it again.
Good night or morning dear friends, nan is doing OK and still awake now waiting for Terry, She and Marilyn are watching a frazier episode, the back door is open with cool breezes wafting in.
love
tim and nan and marilyn
posted by Tim Mustard @ 10:04 PM
3 Comments:
At 11:04 PM,
Anonymous said…
Tim,
Glad to hear about the wafting. What makes Lyn so Mari? Every where I read about this lady and everything is wonderful, positive and interesting. Can she be real? Is anyone really that good? What are the facts please. Without embelishment this time. No fish stories!
Is she for sale? I could always use an extra friend.
Praying that more than that Glevic pill makes it past the blockage tomorrow. Enough of this kinky business for now.
Wes
At 4:11 PM,
Anonymous said…
Here it is evening already! We've had a busy day with people checking in and phone calls. At least something is happening around here. The phone has been uncomfortably silent lately. We know the Lord will provide what we need, so we don't worry. Lesley is working out very well and will be starting to prune the azaleas this week. There's always work to do around here. Retirement looks very interesting to me some days.
So glad Nan has a private nurse to keep her bags emptied, stomach pumped and keep her company. I know this gives Tim peace of mind to have someone with his special lady while he works.
Now for the Dr.'s to get their acts together for the AMN drug. God only knows if the AMN drug is best for Nan or not. Our prayer is that His will be done. No one knows her body than her Creator. So, tonight we leave her in His hands.
Love and prayers ~ Carol
At 8:05 PM,
Anonymous said…
Hi Tim & Nan,
We are glad that Nan has helpful company there so that You can get some of the things done that You are needing to do with out having to worry about Nan every minute. She is in good hands.
Lets all pray that the Dr's can get things together , as Carol P. said, and things will move in the right direction at last.
Isn't this wind terrible? Worst We have had to deal with in a long time. It is so dirty here , reminds Me of Years past when the "Peat Dirt" would nearly block out the Sun during the day light hours for days on end!
Have a restful evening and Thank You,Marilyn, for being there for Nan.
Love & Prayers,
Bob & Carrol.
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