Nan Mustard's Recovery

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

Tuesday, July 31, 2007

Family day

Dear Family and Friends,

Well Nan had a rough night which started with a 102 temp but ended this morning with a 99.7. She vomited once, we pumped her stomach once or twice, we gave Dilautid and we made it through. She came down fairly early this morning to an empty house. Dana and taken David and Joe to breakfast. Soon they arrived back and went to try out their new fishing poles in the lake and eat their breakfast burritos on the back deck. I moved Mom's recliner around so she could witness what they were doing. I left late morning to once again see the same property in Rohnert Park, you see I just happened to go to the wrong house when I was there before and discovered it as I was writing up the report so back again, 2 hours each way. Sleepy time coming home, almost had to stop and nap for a minute. I've been listening to Jack London short stories and that one was like a sleeping aid. When I got home Nan was sleeping, had thrown up and was distressed so Dana gave her Adavan. We woke her at 6 to go over to Steve and Nikki's for the BBQ dinner. We had a great time there with Steve and Nikki being the wonderful hosts they always are and the food was plentiful and wonderful. Even the steaks looked good but my garden burger did the trick for me. Keanna was in great form having just finished her first day back at school.

Then home and right now Nan is sleeping in her recliner, Dana will wake her soon and then she will take her pills and go up for the night. I have the new TPN bag already going now.

I have included several photos and I think they tell the story. Wes, Dana - sister, David - brother, Joe - brother, Nan - sister totals 4 in all. Now wasn't that easy Wes!!

Tomorrow morning David and Joe head back to Texas and Dana has to drop them off about noon. Then our dear friend Marilyn is arriving from Rhode Island tomorrow afternoon at about 5:40 so Dana is going to locate a mall to enjoy while she waits the time in between. Dana is excited and so is Nan as both love Marilyn and Dana and Marilyn will have a few days to be together before Dana has to go back to Texas to begin work in her school district. We will never forget the selflessness Dana has shown this summer, she has purchased groceries, filled the car with gas, made dozens of trips and been so very good to Nan and she was great tonight helping get all the stuff ready for the dinner.

Nan has enjoyed talking to David and Joe and just being with them is special. We are sorry they have to go back so quickly but very grateful that they could come and enjoy Nan's company.

Please pray that the AMN will do its work, that the fevers will be less, that the tumors will be controlled and that Nan will feel better and stronger.


tim and nan and dana and john and david and joe

ps yes thats right, the mighty threesome actually caught a large catfish today, waited until I got home to take a photo and then released it back into the lake. All in all a good day!

Monday, July 30, 2007

Monday evening, David and Joe arrive from Texas

Dear Friends and Family,
Tonight we have the entire 4 some of the Nelson family under our roof. What an honor. Dana drove up to Sac this afternoon and collected them arriving home about 4. nan was very happy to see them in spite of not feeling so well. This afternoon she picked up a fever of nearly 102 and that really drove her down. She tried to eat a little bit but it really didn't work very well. The siblings enjoyed catching up and told Mema stories, that is stories about their mother who is now living in a rest home and still raising lots of trouble as she goes.
Nan started the day with a visit from the visiting nurse Terry. She had some fever at that time and Terry was not able to draw blood from the PICC line so had to come back this evening after a very long day of helping patients. Yes she was able to draw the blood tonight and in a few minutes a courier was at the door to take the blood to San Jose. Pretty amazing how all things work out.
Tonight we are still wrestling with whether we can give Nan a bit of children's Advil or not. In the literatrure we have received it is clear we cannot do Tylenol. We hope to be able to get better data. nan has had a terrible stomach ache this evening and finally vomited. Then she began to feel better again. We have given her Zophram, Adavan, the normal oxycotin and Aciphex and I think she is finally resting quietly now.
Dana has been great today, she started the day early and has cleaned things, cooked and BBQed up a storm, played Taxi, arranged their bedroom and kept everyone happy. What a blessing she is and she is so good with Nan. It is hard to think about the time when she has to leave but God will care for that time as well. This evening we got a call from Sharon who was just checking on Nan to make sure she was doing OK. Pam had checked in earlier and still earlier my brother Jerry called. Mary called too to check in on Nan.
We pray that nan can have a good day tomorrow as this will be the only full day with the guys. Then on Wednesday Dana takes them back to the airport. Nan hopes she feels well enough to go to the airport with them, we will see.
It was sure good to hear from friends today both responding to the blog and sending private emails. We appreciate every one of them.
So for now I'm heading to bed and just pray that God will work on her fever and help the AMN work on the tumors. How we all long for help with Nan's health.

So good night.

We send our love

tim and nan and dana and joe and david and john

Sunday, July 29, 2007

Oh waiting for the brothers to arrive.....

Dear Family and Friends,
It is now Sunday evening, we are sitting here in the family room enjoying the cool of the AC and watching our 18 year old big screen which amazingly still has a good picture. Dana, Nan and I along with Starr have just completed eating and Nan has just finished taking her meds for the night. She has had an amazingly good day in her recliner. She came down at 9 this morning and has been here ever since. Dana helped her acheive something she has wanted for days. That is new hair color, "excellence by Loreal". She stood at the sink and Dana helped her wash, color, rinse and then she walked back to the stairs and down to the recliner. Yes Nan was tired but very satisfied with the results. If you see her it might be good to comment on her hair color!!!

Tomorrow Joe and David arrive in Sacramento at 2:45. Then the kids will be all together again. Dana says tomorrow night when we get home we'll have pizza and relax. The guys will be very tired as they are driving many miles before boarding the plane in San Antonio. Then they fly hours to get here and then 1.5 hours from airport to home at this end.

Nan has not gotten a chance to see her brothers in several years so she really looks forward to their coming. Fortunately they are coming at a time when Nan seems to be doing better and is more alert and aware.

Now its time to take Nan up to bed for the night. She has been up 13 hours and is really ready to rest and deserves it totally.

My concerns remain about what will happen now we are through with the antibiotic for her blood infection. We have a few more days of the other ones left. So we watch the temperatures and pray that God will watch over Nan.

So good night friends and family,


tim and nan and dana and john

Sunday morning report

Dear Friends, Family and GISTers,

After a rather bleak report last evening I thought perhaps I should follow up this morning with a brighter one.

Nan slept with few interuptions until nearly 9 am this morning. She woke feeling pretty well and we did Zophram for hints of nausea. She insisted on getting up and coming downstairs which I was only to happy to assist with. She walked to the stair chair on her own, rode down on her own and got into the wheel chair on her own. I drove her to the Art ramp as she calls it and we went gently down to the family room. At the recliner she got out of the chair by herself and turned and settled into the recliner. Her fever was down to the 99s tonight instead of the 101s yesterday. We did all her meds, AMN, Oxycotin 100mg, Asifex, Lovenox 60 mg in the fatty tissue that is getting harder and harder to find as she shapes up, fruit cup, cold water and a sheet. We sat beside the open rear door and enjoyed the fresh cool air until it was not cool any more. She is dozing now but without extra pain meds on board. We ended up giving her no Tylenol or Motrim last night as the comments that came back to us on the web site seemed to suggest they were not a good idea.

In an hour I leave for Rohnert Park which is about a 1.5 hour trip on a good day to do an appraisal. Dana and John went to an early movie, the Simpsons this morning and will be back by the time I leave. Nan is doing remarkably better than 3 weeks ago or even 2 weeks ago. Today was the last vancomicin and time will tell whether the vanco was holding infection away or not. The next few days will once again be crucial. It is our hope that the AMN might do something to calm the fevers as it begins its work on the tumors.

Well its off to the shower for me and Nan is resting quietly having gone through the mail this morning already and helping out in other ways.

Both her phones are by her side if you happen to want to call. Cell is charged and the house line, 925 634 6132 might even work this time.

We thank God for a good night and what looks like a good day. And we thank Him for providing Dana too. She has been an amazing help and we will miss her so much when she has to go back home. We look forward to Joe and David coming tomorrow. nan is thrilled to get to see them again and for a brief time all four of the children will be together again. That does not get to happen all that often.

Here's hoping you have a good day with love to your family and friends,

tim and nan

Saturday, July 28, 2007

A quiet day of recovery

Dear Friends and Family,
Today is Nan's first day on AMN. Unfortunately she woke with a fever and has kept it all day. I left her this morning and took Keanna to Sabbath School in Tracy. She enjoyed herself and made a cute little craft. Then it was home so she and her family could drive to Fresno for a birthday party for a family friend. I came home and Nan was ready to come downstairs. She made the trip down smoothly and then settled into her recliner to wait for the wound care nurse. that experience was painful but much needed. Nan has been running a fever of about 101 and above all day and it has kept her from really enjoying the day. She and Dana have managed to catch a couple movies and some naps today. Dana made some very good bacon sandwiches, beef for nan and vege for me. We have loved the biscuits and gravy, the excellent tomatoes from Keanna and Steve's garden.
Nan took her second AMN this morning and was so grateful to finally have it.
Dana has watched over Nan all day and has helped with bags, food and enjoyment. Now its evening and we are watching a cute movie with Julie Andrews as a queen. John is still asleep, he has his days and night backwards, stays up all night watching TV and eating and then sleeps all day long. So we hardly ever see his smiling face.
This evening I am not sure what to do about her fevers. One person wrote on the Life Raft to us that when on AMN she was anot allowed to take Tylenol or Motrim. We need to do something but are not sure what to do. We have one more day of one of the antibiotic and 5 more days of the other one. We hope that we do not have high fevers back when the antibiotic ends but I am very concerned about what to do.

Our hope is that the AMN will help with the fevers too. nan is still doing well mentally but the higher fevers concern me too.

Please pray for our precious nan, that God will help her feel better, that her tumors will shrink and that her fevers will diminish.

We send our love to each and every one of you. Thanks for your love,

Tim and Nan and Dana and John

Friday, July 27, 2007

Nan takes first AMN capsule!

Dear Friends and Family,

Finally this evening after a lot of very hard work by many concerned people Nan took her first AMN107 capsule. It went down smoothly and she was so relieved to get it in hand.
Dr. Melynyk's office called this morning and ask if Nan could come in for a visit with the doctor. So we hurried her out of bed and into the car and to the office. There she signed papers and the Dr. sold us Novartis had shipped the drug yesterday but was not sure where to. After we arrived back at home and nan was settled into her recliner the office called to say the drug had arrived in the Concord office and Gloria would be bringing it out to Antioch. So at 2:45 I picked it up. I then headed to Oakland to do an appraisal and then back to Longs to get prescriptions for Nan and then home to find Nikki and Keanna visiting and eating. Dana had prepared a spread fit for a king or a princess. Keanna handed the pill bottle to her Grammy who opened it and took her first dose. We all hold our breath and pray that it will be helpful with the tumors.
Nan took some Adavan around noon and slept and rested in her recliner until about 9 this evening when John and Dana helped her walk and ride up to bed. She has had a tired but excellent day and is demonstrating more and more strength each day. We did have a fever this morning but this time around it does not seem to hold her down. We have two more days of one antibiotic and 5 days of the other one. Our delivery of TPN and other needed medical supplies arrived a little while ago, that right about 9:45 or so. In a few minutes I will prepare her new TPN for the next 24 hours. I may get to take Keanna to SS in the morning, we'll see how she feels in the morning.
I have included two photos, one of the nice lady handing me the meds and then Keanna handing them to her precious Grammy. This is the beginning of an incredible experience, just even being able to be considered for compassionate use of the drug is pretty amazing and then the staff going through all the steps to get it approved and here, also amazing. We are deeply grateful for everyone involved in the process and especially Dr. Melynyk who was very pleased that it was finally here.
We thank God for His leading and blessings.


tim and nan and dana and john
ps yes I know there is a photo of a house again, now if I could learn how to take a photo out of the blog!!

Thursday, July 26, 2007

Nan gets to hold baby Timothy

Dear Friends and Family,

We are home from MBA after a quick trip that turned out wonderfully. It was so good to see baby Timothy, Jo, Jason and Grammy Julie. Timothy is a beautiful little boy in every way. He is strong, moves his muscles, opens his eyes, turns his head and just charms you in a second. Jo is such a good mom and is gradually growing stronger but is still having antibiotics to deal with some stubborn infections. All three are getting used to Timothy's schedule of feeding, resting and then feeding again.
Nan got to hold him many times including an afternoon time when she fed him his bottle, burbed him and they even took a nap together. Nan slept well last night with minimal pain meds and maximum sleep. We didn't really wake until 8 this morning. The weather was blissfully cool there and we enjoyed having our windows open. We arrived there last evening and left this evening at about 7 arriving home around 10. It seemed I hit every bump in the road and Nan felt them all but we had a safe trip and so did Dana who followed behind in the van listening to her Harry Potter book on CD.
I have included some more photos of our little dude and we send our prayers for the little family as they adjust to this precious new arrival. We thank them all for letting us visit and enjoy this precious person.
Tomorrow we are required to take Nan to the doctors office to sign her application for AMN107. Does that mean we get the drug tomorrow? I don't know and neither did the person in the office. We are so thankful that it is getting closer. Nan is much stronger now than 3 weeks ago. She handled the steps into the motorhome very well and can not sit up by herself and stand quite well too. Her mind is clear and she even corrects me at times, like I would ever need correcting?
Please keep Nan's tumor grown before the Lord asking Him to deal with those nasty things in His way.

tim and nan and dana and john

Wednesday, July 25, 2007

Grammy meets Timothy, love at first sight!

Dear Ones,

We are settled in the motorhome tonight parked next to Jason and Jo's home at Monterey Bay Academy located on the Pacific Ocean, Monterey Bay. Dana is snoring gently in the rear bedroom with her TV on, Nan is sleeping in the front bed and of course I am blogging. I hope to be able to attach photos of Nan with precious Timothy in her arms. It took a long trip through traffic to get here but Nan thinks it is worth it.

Our day started with Nan having yet another fever and planning . hoping to head to MBA. We talked a couple times and I could tell she was not happy with the progress of things. I talked to Critical Care Home health and they said they had heard nan was being released so we started to plan that way. I took care of paper work at the office, loaded medical things we would need into the motorhome and then headed over to the hospital. Dana was also on her way, got a much needed oil change in Nan's van and then helped Nan get packed. When I got close I parked a block away as the motorhome and hospital parking lot are not really made for each other. We loaded up the many items from the room into the van and then when nan was released I grabbed the motorhome. She was wheeled to the motorhome but walked up its steps and to the bed waiting for her. Then we headed to hayward to Critical Care to pick up TPN and other needed antibiotics etc. That took awhile since our exit was blocked by a truck on its top and cops everywhere. Then from Critical Care into 880 4:30 traffic which was a mess all the way down to San Jose where we caught 101 south to 129 which goes directly to Watsonville and to MBA. The trip took a long time but finally we arrived at MBA and Jason brought Timothy out to play. Nan lovingly held him for a long time just looking at him and treasuring the experience. Our baby has a baby, wow. I went in and talked to Jo and Julie who are both tired but happy. Dana also enjoyed holding the little guy. He is so cute and stretches his arms, opens his arms wide and his big eyes too. How precious, how beautiful.

Our prayer tonight is for God's leading and healing. We are tired and ready to go to bed.

This has been another big day for Nan who has longed to be with this little guy for two weeks. Her will power has once again conquered her fears and circumstances and she is here tonight.

We were informed by research at the oncology office that they hope to have AMN by Friday. I am assuming that the review board passed the drug today but no one told me that yet.

We are thankful and yet apprehensive at the same time. nan has incredible pain at times especially at 65 miles per hour down the freeway over the bumps yet she endured through it all. This is one very special lady and I thank God for her on behalf of our entire family.


tim and nan and dana and jason and jo and timothy and julie
sorry about the multiple copies of the same photo, I know how to put them in but don't know how to take them out and the nice room, well thats up in Rohnert park and has nothing to do with anything, its late, be forgiving please.
I hope they have a quiet night in the house. Sir Timothy sometimes likes to be up during the night and Joe, Julie and Jason seems to have a sleepy look in their eyes.

Tuesday, July 24, 2007

Tuesday evening, calm, somewhat better

Dear Friends, GISTers and family,
It is about 8:30 and nan is sitting in her recliner. She has a pillow behind her, one under her feet a sheet over her to keep away the chills and is watching something. She has a level of pain all the time but only sometimes does it protrude so badly that it has to be dealt with. The higher level of basic pain meds seem to be helping somewhat. She once again had a fever this afternoon of 100.4, is on a couple different kinds of meds and is totally lucid and involved. She has almost no appetite now even though the trays keep coming to the room. When i am around I help out with a few bits here and there. Dana was kind enough to help nan have a bath this afternoon and a shampoo with the clever hat thing.
I rose early this morning and washed the motorhome, it was no longer white. Then I did some mopping in the house where the doggies forgot and used the floor instead of going outside. I tidied up a bit and then did conditions at my desk. Finally I headed this way, once again i got caught behind a red light that did not change and then needed fuel and no card would work at first, turned out it was a station computer problem not my cards, yikes that was sort of scary.
Dr. George Miller, long time friend from the Tracy church had been at a conference meeting and came by to visit. He was kind enough to wait until I got here and then I walked out to his cute little SUV and got a great big bear hug, good stuff! nan was so pleased to see George. In the whole world there is no one like George and Yvonne!
After I was here with nan for awhile I drove to Rohnert park to do a 442, final inspection of a property and then back, traffic was minimal. The agent at the sales office has had some very tough times with lots of hospital time and he is really interesting to talk to.

Now we are preparing for a possible Nan exit from the hospital tomorrow. Of course we are never sure but the discharge planner and Dr. K think that is the plan. We plan to pick Nan up in the motorhome here at the hospital and drive to MBA to see a precious little man. Our experience teaches us that if they say noon then plan for about 5 pm so we will see how this works. My problem is I can't begin to park the motorhome anywhere near the hospital and it will be hard to coordinate times, anyway it will work out, things always seem to.

I have butterflys in my tummy when I think about taking nan from this protective place into my world yet it seems to be time to do so. May God help us as we venture out once again.

We have heard nothing from the hospital review board, not a yes, not a no but hope to hear tomorrow.

Please pray for Nan's high pain level, for her general health and for the AMN which we hope will give us some help. What a blessing that would be to get some relief from these looming tumors.

So we say good night and perhaps we will be blogging from MBA tomorrow night.


tim and nan

Monday, July 23, 2007

Slow progress

Dear Family and Friends,
Nan is drifting in and out of sleep as I sit by her bed writing. We are watching a medical show about heart transplants and its sort of interesting to see how they handle medical things. Nan has had her pain meds increased to 100 mgs of oxycotin morning and night plus still has Dilautid to count on for her other breakout pains. She continues to flirt with fevers, it was 100 last vitals an hour ago. Yet her heart rate was 110 which is normal so the fevers are not too serious. There is talk of nan being able to leave tomorrow but I'm thinking probably the next day, we will see what happens. Dana had me bring home the motorhome tonight so she could clean it and get sheets on the beds etc. I stayed the night last night here and then drove home this morning. Could not reach Dana, her battery had died in her cell phone last night while she was talking to Ronnie. Dana left after I got home today and came to be with Nan. She and Nan got Nan up into her chair for hours and they decided they needed banana splits so Dana was headed out to locate the good stuff. Nan had a few bites and the rest went into the freezer to wait for me. I knew it was here and that helped me drive faster to get here.
I worked at my desk and cleaned up many conditions, wrote a big appraisal, rewrote another for Rohnert Park and then left home to come back here. It was about 7 when I finally got away. I went by Longs to pick up a bottle of diabetes meds and then headed to Concord. My goal to get here before the front doors were locked. I made it.
Today Steve was able to take advantage of a clients generosity. When I was in his home he mentioned he wanted a huge salt water tank out of his house. I told him we might be interested. Well today Steve and his friend drove there, loaded it up and its in Steve and Nikki's garage now. It has very expensive lights, exhaust fans in the lid, solid stand, solid lid/cover. I can't believe that the two of them were able to move it by themselves but of course this is Steve we are talking about, he really can do just about everything and anything.
When I stopped by tonight Keanna said, Pappa we have a new fish tank in our garage. She was so excited. One more time Steve's enclosed trailer came in helpful.
Mom and I are slowing down now and she is trying to find a position that will relieve her pain which is often breathtaking.
As of this evening we have heard nothing back from UCSF and of course tomorrow is the key day for the AMN107, last hospital review board decision. Things to keep in prayer over.
Sometimes in life stuff happens that we will never know why, I was driving home today and 2 lanes of traffic were waiting for our turn to turn left, well our turn never happened, the light signals were broken and our lights never changed so finally we all began to wake up to the fact that we would be there forever or work our way over to other lanes and go the other way, it took awhile but finally we all moved away and got going again. I think it cost me 20 minutes and I always wonder why, did I avoid an accident this way, a ticket.
When I got home today I was pretty low. I thought it was emotions but it finally dawned on me that I was having a blood sugar meltdown so I made yummy peanut butter sandwiches with tomatoes. Steve and LeAnn had both brought fresh tomatoes and they were so ripe and erfect, tasted like heavenly fruit. So good that I went and made another sandwich later in the day. What delicious food. When Dana is at our house she only buys whole milk. Well nan will never let us buy whole milk and does not even like it much but I am sure enjoying whole milk!
So in the next day or two I think nan will be allowed out and we will load the motorhome up and head down to see a precious little boy for a couple days and perhaps help out a bit as well. Jo is doing better and feeling better too which is wonderful news.
Talked to Nikki tonight and she was on her way home from the gym, she was so tired she could hardly stand up, kick boxing, weight machines etc. Go girl! I'm so proud of her. Keanna was sorting her Barbies when I stopped by and she was happy to see me and ask about grammy.
So in a few minutes I'll head home I think, perhaps I might stay but I think nan sleeps better when I am not here, not sure about that. I'm confident that she receives good care here and that helps me sleep well too.
Can I ask for your prayers tonight for the events coming up this week for Nan, tomorrow's review board decision, whether to stay or leave the hospital, how to get TPN if we do take her home, surgeon decisions at UCSF. Only God knows the right course of action and we ask that He make the way clear for Nan and her caregivers.
This evening I am witnessing an unusual event, that is nan has turned on her side in the bed. She usually cannot stand to be on her side yet here she is on her side and has been that way for a long time, all part of her coping method for the pains she suffers from.

We send our love,

tim and nan

ps Thanks Irene for the cards, Nan loved hers this evening and thanks for driving up last night.
psps nan is so excited about her brothers coming to visit. Joe says he has never been to California in his life so he looks forward to the trip. He and David come in on Sunday and leave a few days later. Hard to believe they are really coming!

Sunday, July 22, 2007

Temperatures rising

Dear Family, Friends and GISTers,
Just now our aide has taken Nan's vitals and she is showing a 100.2 after a day with mostly normal temps. This is sort of disheartening for both of us. Where are these temps coming from? Dr. Benstock held off on the extra antibiotics to see if the basic one she is getting would solve the fevers. Well I expect that we will see new ones tomorrow.
This has been one of the best days in weeks. nan woke up at about 9:30 or so this morning and has been awake the entire day. Dana arrived mid morning with popcorn, pizza, ice tea and cheer. She is an amazing person and has helped so much since she has been here. Dana stayed for hours and she and nan traded places, Nan in the recliner and Dana in bed. Eventually Dana headed for home around 4 pm.
Before Dana arrived this morning Nan got up and walked to the door of the room, then to the bathroom door, then to the door and then back to the recliner. She walked strongly. Then she was up in the chair for about 4 or 5 hours. She managed that very well.
She has had some food here and there today and 4 Gleevec tables. She has decided that she will stop Gleveec as of tomorrow since she might get the new drug AMN by Friday. Her decision as we need 5 days after Gleevec before a new drug.
Nan just got a Lovenox shot and this time it is hurting a lot. Suddenly after a very good day nan is emotionally drained, is in tears and I have decided to stay the night. She is much stronger than she has been, very alert and awake.
This afternoon she got a nice call from Irene saying that she was coming up to visit. It was late in the afternoon and nan was concerned that she would not be able to get home before dark. Well Irene came and we had a very nice visit ending in a prayer before she left. We love this precious lady and appreciate her involvement in our lives.
We know more about the schedule for AMN approval this week. On Tuesday the review board gives its final approval, then Novartis signals the FDA for approval, then Novartis ships the drug overnight. So if all goes well and medical stuff rarely does, we could have meds by Thursday or Friday. God willing!
So good night dear friend. We are thankful for the many blessings we have enjoyed and long for healing and health. How I want nan to be able to see baby Timothy soon, how I long for her to feel better with less and less pain. Oh that Nan could get back on her feet.
I will spend the night here tonight and then head home in the morning. We are praying for orders, for God's help with the business. Seems like we have turned into very needy people but God knows our hearts and our needs.
Please pray for Nan, hours without fever, then fever, then pain, then pain lets up and then fever. Yet in spite of it all Nan is better and I could swear that the tumor is smaller than it was, Nan thinks I am crazy and perhaps I am, wishful thinking.

love to all

tim and nan

Sunday morning report

Good morning,
Nan had a pretty good night without fevers, minimal pain meds, long periods of rest. She has had breakfast of Bagel and Cream Cheese, fruit plate and milk, taken her meds including Gleevec, had a new hospital gown and washed her face and is now resting with new pain meds on board. Her vitals were solid all night and continue to be so this morning.
She has a higher level of pain than she is used to and the oxycontin at the higher dose is helping control it.
I slept here on a bed that is slightly less ideal than usual but slept fine. Did'nt get up until 9:15 this morning, could not see a clock and just didn't know what was happening. Felt good to get some rest.
We wish we could be with a dear friends today at Dollywood in Tenn. Nan loves that place so much and they are there with their children and grandchildren to day and tomorrow. Its wonderful that they can be together and have this happy time.
Nan enjoyed viewing a page Jo has created which shows photos of the new baby and proud parents. When I get the email address I'll include it so you can enjoy the photo show too.

Well look at that, I found the address so you can enjoy the photos also.

I hope to complete three appraisals today and ask that you join me in prayer that some new orders will come in. We are very slow as a company right now and our usual clients keep mentioning they are in a slump right now with little loan activity happening.

I expect there to be some talk about Nan being released from the hospital soon. We have been told that we can take home the antibiotics and give them ourselves. Neither nan or I are anxious to leave this safe place with its good care. So we will follow Doctors advice and allow God to lead. Nan continues to grow stronger than she was. She can walk when she needs to right now and is totally in control of her mental facilities now.

So we send out our love and it was so great to read the comments to the blog and side emails also received. What a difference it makes to be remembered, what comfort from not being alone.


tim and nan

Saturday, July 21, 2007

Sabbath evening, more calm, less pain, no fever

Dear Family and Friends,
I am writing at 11 pm and tonight I am staying here at the hospital. Dana is taking good care of things at home, feeding the fish, doggies, kitties. John is reading his new Harry Potter book and Dana is probably talking to Ronnie who has a couple days off.
We are settling in after a day of contrasts.
When I arrived this morning I found a very tearful Nan who said she had fever during the night. She was so devastated by the news. The morning vitals found a temperature of 101.3. Dr. Melynk and Dr. Benstock were doing rounds and ordered new blood cultures just to be sure. The common thinking is that when the aid caused the kink in the drainage line the kidneys reacted with the fever. The rest of the day the fevers subsided and this evening she sat up in her recliner for over an hour partially awake and partially nodding off. Now she is back in bed, has 4 mgs of dilautid on board, all her pills including Gleevec and is ready to sleep.
During the day she has managed to gradually feel better and has enjoyed Keanna and Nikki's visit so much. This morning Dana arrived after I did having found both a CD version of the Harry Potter book and the real thing for John. She put the first CD in the laptop and listened to it here. The guy is a great reader and the writer writes a very interesting book. I have never heard or read any of the Harry Potter books so was not aware of the various characters. Later in the morning Dana left to take John's book to him and to relax at home.
Dr. Melynk told us that the compassionate use of AMN will be going through the final review board on Tuesday, then Novartis will refer it to the FDA where it will get a 24 to 48 hour turnaround and then Novartis will ship the drug overnight mail to our doctor. The oncology group have invested an enormous amount of effort into getting this drug approved and we deeply appreciate what they have done for Nan. Meanwhile we are on Gleevec hoping that it will have an effect on the tumor growth, possibly even shrink it.
We have had nice conversations with Jason and Jo, Mary, Pam, Art, Sharon and perhaps more that I don't know about. Nan is now able to care for her own colostomy bag, make phone calls and answer them, eat some food at meal times and drink water, take her pills and rest. She stood just fine tonight when we were getting her into the chair and back into the bed.
Thank you for your many many prayers in Nan's behalf and we hope we have seen the last of the fevers.
We send our love tonight and deepest appreciation of your involvement in our lives.
Our prayers are with Jo and Jason tonight as Jo has experienced some complications today. Baby Timothy is doing well and Jo's mom is staying another week which will be such a huge help.

tim and nan

Friday, July 20, 2007

Crisis averted once again

My PS on the last report mentioned a non draining nephrostomy. It developed into a full blown crisis with intense pain and no relief as the kidney filled with no place to drain. The nursing staff brought someone over from Interventional Radiology, a couple people and one was a doctor. They removed the Perk u STay was was installed this morning and there it was a full blown kink in the tube, totally blocked off. Our nurse thanked me for keeping after everyone that something was very wrong. They placed a new Perk U Stay and carefully locked the tubing so as not to create a kink. I had called Aunt Ann in Oklahoma to pray and she did so I called her back to thank her. As soon as the kidney got a chance it started to drain and is now draining clear liquid rather rapidly. I hope this solves at least one of the sources of pain for dear Nan this evening. Since she has 6 mg of Dilautid on board and .25 mg of Adavan she is deep in slumber now with no break through moaning like before. She has pills to take but we decided to let her sleep a bit longer before waking her for the pills.

So good night friends and Family,
love from our room to yours,

Please keep Nan in your prayers,

tim and nan

Friday afternoon report AMN is on its way!!

Dear Fellow GISTers, Family and Friends,

I am just back from taking a drive over to UCSF to deliver the CD of the CT scan taken this week. They called and requested it so Dr. Warren can have a much better idea of what he is facing as a surgeon if he should decide he can help Nan. Alisa called, she is his personal assistant and seems to be everywhere making things happen. I was glad for the follow up as we had faxed the written reports two days ago and heard nothing back. Silence in this case was not golden in my mind.

I called East Bay Oncology this morning again and this time spoke to Danna. She said that next Tuesday is the final meeting of a review board and Dr. Melynk expects the drug to arrive on Thursday from Novartis. She also said that someone in a research facility somewhere either at the doctors office or at the review board had spent 12 hours getting everything in order. Nan and I certainly appreciate the tremendous effort that has gone into this request. As non medical people looking in we have no idea of what is involved in the process or the hours that have been spent. Travis writing from Boston this morning mentioned a bit of the weight that each participant carries for Nan's well being as they move this compassionate use through the mountains of red tape. We will continue on Gleevec until we see the drug coming or at least hear for sure that it is coming by a certain day. We are supposed to have a 5 day window between drugs.

Doctors from oncology, kidney and infectious disease have been in. They have tackled the staph infection in the blood and it is being dealt with. They are going to allow us to keep taking the vancomiacin at home whenever that time comes. Neither Nan or I are anxious to leave this place with its constant loving care and safety. Yet there will be a time, probably over the weekend or perhaps next Monday when we will be released. Dana and Nan have cooked up a plan to leave here in the motorhome and drive directly to Jason and Jo's to see and care for baby Timothy. Of course we will have to coordinate with Jason and Jo to see if that will be helpful to them. The plan involves Dana sort of taking over where Julie has been helping, mainly the night duty and Nan getting to hold baby Timothy at times. Perhaps we can be helpful. Dana will drive the van so we will have a car if needed at any time.

We are taking things on a day by day basis here. Nan is in some pretty heavy duty pain and yesterday they upped the pain med, oxycontin from 60 mg to 80mg morning and night. Considering that Nan just had her first dose of Dilautid now at 4:30 since having it this morning at 9 am it is pretty clear that the higher dose of oxycontin is working. No one has explained yet to either of us why the increased pain but just guessing I would say tumor mass is pushing on nerves and taking up much needed space inside. Nan has been very clear in her conversations when she is awake today. She has spoken to not wanting to slip away while I am gone without getting to say goodbye. With all the doctor activity and discussions going on I think she has the impression that everyone has given up on any chance of recovery or coming through this. While her situation is very serious she has positive things going for her as well. Her hemoglobin is strong, her heart rate is normal, blood pressure is normal for her, creatines are now down to 2.5 which is good for her, infections are being dealt with and she can stand, walk and think clearly. Her lungs are clear, her bones seem to be strong, her basic organs are intact and functioning well. What we have are several tumors, some growing rapidly, that are causing havoc and pain. On the horizon is AMN and for the present is Gleevec with a possibility of Dr. Warren doing a surgery, that is certainly a last option and a very scary one for all.

We are grateful for many things, our good medical care, family support, friends and prayer pardners on duty, for no fevers and for little nausea. I believe we are doing everything we can do at this point to support Nan and help her. She is very much in God's hands and only He knows what lies ahead for us all. At times like these all of life's busyness, pursuing things, entertainment falls away and the basics become front and center. God has created a very special person in Nan, she has lived her life in service for her family, her friends, her fellow GISTers. She has been honest, kind, caring and hard working. She has created numerous times of joy around the dinner table or the Christmas tree or birthday packages. She has made trips to Hawaii happen for the family over and over again arranging every detail so no one had to worry. She has handled the finances paying bills on time and remembering so many different facts and figures in her head, it amazes me. She has purchased all the groceries, the clothes, the dog groomers, the fish tank, she has done it all never complaining, just making things happen. She was a very good appraiser with honestly as her benchmark, she was organized and kind to the homeowners. I often marvel that I been able to have this beautiful woman by my side through so many ups and downs, her loyalty unquestioned, her love treasured. She has taken me where she found me and backed me, prodded me and stood by me no matter what.

Husbands, take a few minutes and sit quietly, consider where your life would be without the person you love, your wife. Consider how blessed you are to have been on the receiving end of so much love and joy. Tell her until she actually believes you. Don't let another day go by assuming that she knows how you feel, tell her what makes her special to you, how blessed you are to have her give her life to you.

When one faces realities like we do right now nearly everything passes through your mind. And the things you remember are not when when you got to get a new dining room table or a new car or even a new house. The real things are moments of joy spent together watching the sunset over a Hawaii seascape, a hike through the high country, the moment of birth of your children, their graduations, their marriages, their children.

This week has been a rollorcoaster ride, moments of sanity, witnessing extreme pain, searching for hopeful moments, possibilites of recovery and hours of restful sleep, free from pain. Friends and family calling, visiting, loving and praying.

At this moment Nan is sleeping with soft moans coming through her sleep from the pain. She had hoped to sleep for a couple hours but so far not so good or deep.

Oh that God would heal her. What a blessing that would be. I am trying to do some work while she is asleep so I can devote my time to her full time when she wakes for awhile. But I really am not into working in spite of what I know needs to be done. People remind me to eat and care for myself but in doing so it seems so selfish, I can move about freely, eat what I want and drive places while Nan is stuck in the bed without options. I do appreciate friends helpful suggestions and I listen to every one of them, just don't always instantly comply. How nice it would be to take the dogs to the park again but that is time I can be here with Nan, how would you chose?

I have bent your ear long enough. We both appreciate your prayers very much. Over the weekend we hope to see someone, even for a few minutes, takes Nan's mind off her pain and down memory lane depending on who comes to call. We have good memories with all of you.

We send our love to each one of you. Things are not easy here but we are still doing everything we can to make it better and trusting God for His outcome.


tim and nan

ps. At this moment, 6:18 pm, we have developed a problem. Nan's right nephrostomy tube has stopped draining like it is supposed to and the back up is causing her great pain. Kathy changed the perk u stay which holds the tube in place as it comes out of the body and perhaps it got kinked inside or something. Anyway we have a big problem as it is causing Nan extreme pain on top of everything else. Not good.

Thursday, July 19, 2007

Much pain, much joy

Dear Friends, Family and fellow GISTers,

11:30 here, I'm home from the hospital and Pam just called as she is leaving the hospital for Lodi. Nan is sleeping soundly with the help of Adavan. She has had a day of extreme pain and the joy of Nikki and Keanna coming to spend hours with her. This evening Mary came after her work and then Pam came as I was leaving at around 10 or so. Doctors suggest that the pain may be caused by necrotic tumors, ones that have nearly died and have fluid in the center that might be leaking out. The primary source of the fevers has been determined to be staph infection in the blood once again with some bugs showing up in the urinary tract and bags. She is having some nausea again, actually started before we restarted the Gleevec last evening. She has had some meals today and lost several meals. Suction is continual to remove stomach fluids. She has been getting Dilautid up to 4 mg every two hours or so when pain dictates. She slept long periods of time last time puctuated by extreme pain. Kind nurses helped her find a comfortable position which afforded her several extra hours of rest.

Dana arrived first today and they enjoyed time together hatching plans of how to see the baby and help Jo and Jason. I arrived at 11:20 having decided to stay home and finish an appraisal that was promised out this morning. Then at 12 I left for an appointment of an interesting home in Alamo, 11 minutes from the hospital. That one was COD which is always nice. Then back to Spaghetti Factory to have lunch with Nikki and Keanna who surprised Nan with a visit. Nikki took the day off so she could spend time with her mom. It was a great investment, Nan enjoyed the two of them so much as you can see from the photos I took. While mom slept after taking some meds Nikki and Keanna hit the mall, then back to be with mom again for awhile and then finally home to eat with Dana here at the house. I took a nap also as I only get a few hours of sleep each night and it catches up with me.

At one point the pain was almost overwhelming and nan asked to get up into the recliner. We did that and she had some relief and stayed up for the next few hours. When she is awake she is totally lucid now with no memory loss or confusion. Her hands are steady and her resolve is strong.

I once again called our oncology office this morning to find out about AMN and they promised to call back by end of day but NO CALL. I'm losing my patience with these people, a call back, how hard can that be. I did not hear back from Dr. Warren at UCSF either as to whether I should drive the CD of the CT scan over. A day of waiting for the phone to ring. Meanwhile the care at the hospital has never been better. The doctors are doing what they can but much is beyond them, she is complex in so many ways. Today her calcium is running high, no one has a clue why. Her creatins are down to 2.5 now, much better than 3.5 a week ago.

Nan thinks her visible tumor might be a little smaller today, I hope she is right.

On a different and less important front our financial situation has been going steadily downhill for a couple weeks with almost no income. The Lord saw fit to bless us with over $6,000 today which will allow us to make a sizable payment to AMEX that I have been promising to them for nearly a week. Thank you Lord and dear clients, thank you.

So now its to bed for some rest until 6 tomorrow morning. It has been a day of terror, watching nan in such pain and a day of joy as Keanna and Nikki lifted her spirits. How this dear woman needs God's help and soon.

Pray please...


tim and nan and dana and john

Wednesday, July 18, 2007

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

We need you prayer warriors!

Its late but I am wide awake thinking about the huge tumor that is growing rapidly, confirmed by the CT scans today. It has grown a lot in the past 2 weeks since the last CT scan. We really don't know how to proceed or what can be done about it. I just wrote an email to our beloved Dr. Morgan and Travis Quigly in Boston asking their advice. The worst mistake we have made was to stop Gleevec after our trip when we were flown back to Concord. The thinking was that the Gleevec had failed so why bother with it, but it was allowing slow growth, now without it we have huge growth. I ask Dr. Morgan if we should start it up again tomorrow until the AMN drug arrives, I also ask if we should try to see Dr. Warren, head oncology surgeon at UCSF.

I am asking you to seek God's intervention and guidance for Nan and for her doctors, for the speedy arrival of AMN. Suddenly Nan is alert and awake, gaining in strength, not troubled by fevers and has to face this terrible tumor. Please take this tumor to God asking that He do what we mortals seem not able to do.

I would also mention that Nan is alert to take phone calls during the day. If you call keep it short and positive, she needs reassurance right now that she is not alone and that she is loved. Her cell number is 925 354 7677.

On Nan's behalf I thank you for praying and caring.



Tuesday, July 17, 2007

Much better

Dear Ones,
Nan is throwing me out to go home to rest so this has to be short tonight. Nan has had a very good day with much better energy, no fevers, antibiotics running strong, blood infection discovered, consults with several doctors, roast beef sandwich this evening thanks to gormet Dana.
Nan called me this morning and it seems like a different person than the one with confusion and high fevers. She began to talk about taking a walk when I got back. Doctors came and confirmed what we already knew, the tumors have grown a lot in the past two weeks, that is hard news to take. It makes the arrival of AMN all the more important and as of yet no word on that front.
I drove this afternoon to the Modesto area to do an appraisal and just before I left Dana arrived with movies to watch and her usual cheer. She stayed with mom all day and they could not make the DVD player work not realizing that the laptop plays DVDs very well. They chatted, napped, talked on the phone and even Sharon noted from afar that Nan was making perfect sense now. The difference is remarkable to observe. Nan has only had to have a couple hits of Dilautid all day and has received excellent care. She is receiving some powerful antibiotics for the infections already discovered and is now on the hospital TPN. As I finally completed my work and headed this way Nan called and asked if we could walk when I got back, at that moment I realized that I did not have the walker in the car after all so I went by the house and then raced to the hospital before Nan got too tired to walk. She climbed out of bed by herself, grabbed a robe and walked around the nursing station on her own without incident but was very tired and bit dizzy by the time she got back, it was the furthest she has walked in over a month and she did it her way, fast and smooth. What a lady, what determination. Now she is ready to rest and I'm ready to let them care for her as she sleeps.

She started off the day on NPO, nothing by mouth and by end of day was eating a roast beef sandwich Dana got from Subway, the doctor saw her eating so took her off food restrictions altogether now. Nan has downed two bottles of water today, ice tea, hot tea. She is doing very well this evening.

We just watched the snapfish photos Nikki took of the baby and loved seeing Keanna and Timothy together, how proud we are of our grandchildren and our children too.

Please pray for the AMN and for Nan's continued improvements.

tim and nan in good old room 127.

Monday, July 16, 2007


Thank you for your prayers in Nan's behalf. This evening as I sit here beside her bed in Concord at the John Muir Hospital Concord Campus in her room 127 on the 3rd floor I am watching a different lady than the one this morning who was so destroyed by fevers and pain. Terry, nurse, came this morning and found Nan in very bad condition. She helped with calling the doctor and arranging things for the day. She was not able to draw very much blood and the picc line would not allow any blood draw at all.

Dana was a wonderful help as we began to plan getting Nan down and into the van's comfortable bed. It is an amazingly far distance from our bedroom upstairs down the stair chair, then into the wheel chair down the ramp to the family room and then move the ramp and down the ramp into the garage and then to the van door. Nan stepped up on to the little stool we have and with some help from us made it to the bed where we had a slip blanket ready, she lay back and we pulled the blanket and her into position in the bed. Then we loaded the luggage in, adjusted the AC to the right cool temperature and drove to Concord. Nan was becoming much more lucid by the time we got to the van and talked with LeAnn our precious neighbor before leaving. She complained that I hit every bump the entire trip and when we got here she and I figured out how to get her out and into the wheel chair. Then into the maze but in a few minutes she was in room 9 that has two amazing features, 4 walls and a door, some people never make it out of the hall in ER. We were there about 5 hours or more. Dana arrived a little later, had driven the bug and got muchies for the room, a tiny pizza for me to eat and popcorn which I just finished a few minutes ago. Pam told me to eat protein and I think popcorn is full of protein, right!

Our good fortune held at the ER as a great and gentle doctor was assigned her case. He listened carefully and did all the right things for her care and avoided doing stupid ones like before. Then Dr. Ganey came in, we were delighted to see him as he is a bull dog about getting good care for Nan. His orders got everything going for good. Blood was drawn again from Nan's poor arm, CBC and blood cultures, urine samples you know the drill. She was given enough pain med to control her hard hitting pain and she was totally alert and lucid the whole afternoon. Not one strange statement or comment. What a change had come over her and also no fevers during the afternoon. Her heart rate returned to her normal, her blood pressure was adequate and after a morning of 161 heart rate and fevers over 103, total confusion, body in a fetal position. What a change.
This evening Nan is resting quietly with her favorite nurse watching over her for now. She is getting blood in a few minutes, has at least 4 bags of important things going in and still has no fevers. When we arrived up here on the floor she hopped off the gurney and stepped unto the scales to find that her weight was once again her target weight 131.5. After all these months of hydration and weight gain, at times up to 161 she is now back to normal.
Nan has enjoyed talking to Sharon and Jan and I got to talk to Nikki and Jason. Jason and Jo got to bring Timothy home today to his little bed, his little clothes, his little diapers, his little carseat and new life. What a cutie he is even if I do say so in a totally impartial way as a proud Grampa.
Well its time to go home to rest, Nan is resting very well now with 2 mg of Dilautid onboard and appears comfortable. She was lucid all afternoon and evening, none of the confused stuff at all.
We are thankful to you for your prayers today, I firmly believe God chose to send some extra blessings down to Nan, she was certainly due some.
So thanks for your love, prayers, tender phone calls and for being there for all of us in the family.
Dana has been a trooper today, snacks in the room, dog food in the car for home and wonderful help this morning with an unresponsive Nan.
We send our love to all,

Tim and Nan in Room 127


Good Morning All,
I am writing from our bedroom recliner so I can be near Nan. She went to sleep with a 101 or higher fever and slept all night. but her quietness was not a good sign at all. This morning I found her sort of on her side with her knees pulled up breathing shallow breathes. Her temp was over 103, perhaps 104, hard to tell as different places read differently. When I tried to rouse her to take Tylenol I could not get her to be aware of needing to swallow, I finnaly knocked at Dana's door and she came and I held Non in an upright position which we both tried to talk to her to get her attention through the fog so she would take the liquid Tylenol. Dana used a eye dropper and we finally got most of the med into her but it was very tough, her bed was bent forward and she did not know what was happening. Her body shakes an involuntary shudder from time to time. I got the ice packs and put them under her arms and she sleeps fitfully now under just a sheet with a cold cloth on her head. The nurse will be here in a few minutes for monday blood draws and I expect her to say mom needs to be in the hospital. If she goes by ambulance they will only take her to Sutter Delta which is not where we want her to be, she gets much better care in the hospital in Concord. So we will see what happens. She is in deep trouble as the fevers cannot be controlled and are making it very tough on her whole body. As I write she is lying on her back trying to clear her throat, is gently shaking from the cold of the ice packs and effects of the fever and is mostly asleep still. I have a bag of hydration going in and its almost in now. I'm afraid I'm out of home options. I've made no progress with the fevers at all and they are wearing her down.
Nan needs your best and most powerful prayers in her behalf. This is the weakest and most ill I have seen her since Boston.
We both want to see Timothy so much! We thank God for His blessings in this little bundle of life and joy. Jo and Jason will be good parents and raise him right.
I'm not sure what I feel at this point, I long for Nan to feel better yet baring a miracle I fear that may not happen. God has touched her so many times in the past and I always seek yet another healing, another recovery, another smile or laugh. What does God have in store?

Thank you my dear friend for whatever you can do today for Nan, she is worthy of your prayers and positive thoughts.

So I reluctantly sign off hating to loose this connection with you. I feel frightened, lonely, uncertain, detached......


tim and nan

Sunday, July 15, 2007

Sunday evening, calm and quiet

Dear GISTers, Family and Friends,

We started this day at 2 this morning with 103.4 temp. Did our normal things but today including Nan vomiting and some cleaning up to do, then pumping stomach, tylenol and by morning less fever. We never got to normal today. I had appointments today taking advantage of Dana being here with Nan so went to Vacaville and Benicia, then med Dolly who has some pretty amazing diet supliment that we intend to give a try, It has helped some pretty sceptical doctors and has some good science to back it up. I spoke to two different doctors today, one from infectious disease and one from oncology. I learned that there are fevers that come without infection. When the body has a tumor on board it does not like it much and can try to get rid of the tumor by raising the basic temperature thinking the tumor might be harmed. Its called tumor fever and it is only names when all other sources of infection are ruled out. Tomorrow's blood work will tell us if we have infection, white counts, if creatins are better or worse and whether we need a transfusion again. We are pretty sure we have limited bowel blockage though there was some material in the colostomy bag this evening. When I got back home at 5 I brought nan down the special freeway using the ARt bridge and set her up in her recliner for the evening. Shortly after she came down Nikki and Keanna dropped by to stay for awhile so Nan got to see them and talk baby and other interesting things, that is until mom went back to sleep. Dana and John had left as soon as I got home for shopping and videos, games etc. They got home just as Nikki and Keanna were driving out. John unloaded the car with its dozens of sacks of groceries, paper goods etc. Nan woke up when they came home and Dana discussed the nutrient suppliment Dolly had shared with us and Nan agreed to try to Dana made Jello to eat with the nutrients and we'll see if we can get some help from this natural way to aid the body in its distress. Thanks Dolly for thinking of us.

Dana wants to buy some for herself as it can help a lot of things get better. You would never believe that Dana just had surgery as she manages everything with this huge bandage around her arm.

Nan managed all evening without pain meds and only had a fever of just above 100 when she went up to bed. Now we have given all the meds, dilautid and adavan in hopes she can get ahead of the pain and get some rest.

Nikki put some photos of Timothy in an email this morning and put many more on Snapfish if some of you use Snapfish. I think you will enjoy this wonderful newest addition to the family. Due to his jandice he gets to stay one more day in the hospital in his little tanning booth. Jo is so ready to get him home and begin to enjoy him. Jo's mom is here to help too for a week.

So we are hanging in here, the tumor keeps growing, the fevers keep coming back, less confusion than in prior days, more stability and strength when walking, funny little comments at times.

We got an email from Marilyn today in Rhode Island and she might be able to come back to visit again, soon, what great news for all, she and Dana get along great and the more the merrier for Nan.

Tomorrow nan has blood work drawn at 8 am with results on Tuesday, I will do hydration early in the morning to help her blood be less thick and easier to draw.

Please pray for Nan as you have so many times before. We are anxious to see how God will work His will out through her. She has certainly suffered enough.

sending our love

john and dana and tim and nan

Saturday, July 14, 2007

Nan up all day, Dana arrives, Pam keeps a watchful eye, Nikki confirms baby is beautiful, We go to Camp Meeting and never leave the house!

Dear Family, Friends and Fellow GISTers,

This has been an eventful day. This evening as Nan is trying to go to sleep a new level of pain is gripping her which is not responding to our normal pain meds. She has a temperature of 100.3 as we start into the night.

We had a decent night last night, slept most of it, had fever this morning, did normal things and it dropped rapidly, then I ask and Nan accepted the idea of coming downstairs early so by 9:30 we were downstairs with her deposited into her recliner. She managed the transition well and after some Adavan slept for a bit while I watched Camp Meeting sermon by pastor Black, chaplain of the US Senate. Great preaching and very interesting. Dana was not able to make the first flight as there were seats available but they were all broken so she had to wait for 3 hours for the next possible flight. She arrived with John about 3 in San Jose and I picked them up, then missed freeway connections and ended up wasting about 1/2 hour just getting out of town. Dana was hungry having had no meals so we found an Olive Garden in San Leandro, worlds slowest service I think, food was good, then to Oakland to pick up her luggage that had made the first flight she was going to come on. Then home. Pam had been with nan all day and had tidied up a bit, slept some and relaxed, talked with Nan when she could and cared for her as only Pam can do. Shortly after we arrived home and after Pam had some of the take out food from Olive Garden she drove home. Nikki called a couple times and saw the baby twice, first time baby had a mask on and is in his own little sun tanning booth, seems he is jandiced a bit, second time the mask was gone and Nikki got to see him, she says he is beautiful with wavy hair, and looks like Jason. jason drove to the San Jose airport this afternoon and picked up Jo's mom who can stay for a week and will help with little Timothy. She is excited like we are about this new miracle in the family. Jason and Jo are doing well and learning fast to sleep when the baby sleeps. He is a good baby and gives them a break now and then.
Nan stayed in the recliner the entire day and was fairly comfortable. I believe it makes her stronger than lying flat in the bed all the time and she enjoys being around people. She was very funny this morning but has had serious bouts of pain all day. In reality she has slept most of the day but does have waking moments and often makes perfect sense and then there is the tent she wanted me to remove from our bed, the nuts and bolts that were scattered over the bed, the whole issue of what day it is. When I came in she thought i had been gone all night and was just getting home.
Questions I have: why so confused? where is the AMN drug? should we be back on Gleevec until AMN arrives? what is causing the fevers? is she getting enough fluids on board?

Tonight I want to thank Donna for the dish, we enjoyed campmeeting so much over the hope channel both for church and this evening, Art for the ramp so nan can safely move about, Pam for being willing to come and stay with nan today, Dana for coming back to be with nan, Nikki for checking in with us to let us know about baby and our precious Lord who gave us a safe trip to and from the airport. Our hearts and thoughts are with a number of people who are suffering from a loss, Kathy Flom and daughters as they say goodnight to Herb, Arts uncles family as they adjust to his passing, Bob and Carrol's family as they cope with the loss of a man just 62 and our friends Debbie Reed and sons as they learn to live without Paul. This life we treasure is precious and very much like the flicker of a candle in a windstorm, only in God's hands do we find eternal safety and security. Long ago the Father endured seeing Jesus die for human beings who often do not even appreciate what He has done for them. Because of Jesus we have hope for healing, courage to live, assurance of eternal life in a better place than we know now.

Nan needs our prayers, she is weak, confused, in pain, torn by pain and suffering and fearful at times. How she longs to see Timothy and as soon as we can we will help that happen.

Good night my friends and we appreciate you,

tim and nan and dana and jonathan

Friday evening ends better...

Dear Family, Friends and fellow GISTers,

Had I written this a couple hours ago it was would have been less upbeat. Its been a very sleepy day for Nan. PT lady came at 8:30 and nan walked and moved legs as told, then back to bed. She woke at 4:30 with 102.4 fever which we worked on for the next two hours until she was almost back to normal. After the PT nurse left nan went back to sleep and basically slept until 4 this afternoon when I went up and just stayed in her face gently until she woke up and agreed to get up, come down and sit in her recliner. After a few minutes she did just that. We made the trip easily and she walked better than before. She settled into her chair and we talked a bit and watched some programing on the new dish that was installed today thanks to Donna. Clear picture, several channels and new options to feed the soul. Then she slipped into sleep. She drank a glass of cranberry and rasberry juice and slept. Later we were pleased and surprised to find Nikki and Keanna with us. Although they could only stay a few minutes it was a great lift for Mom and Keanna had brought her a book mark she had made, so cute and its in a book already. Then more sleep and I discovered that Soquel Campmeeting was on the Hope Channel, we love that campmeeting with its grounds near Santa Cruz and also very near Jason and Jo's place at MBA. I enjoyed listening to some good preaching and decent music. Later I started the TPN. During the evening Sharon called and nan talked to her for awhile, she was also able to talk to Donna Want thanking her for the dish and new programming. Art called later too and I talked to him and when I was through Nan had woken up and was alert and involved. We had to change her colostomy bag, do some basic cleaning, change her nightie and then we rode back up. This time she walked unassisted from the stair chair to the bed and I think she knew she did well. Then nan settled into bed, took her pills, hooked up to TPN and had some Adavan. She is now sleeping peacefully.
I had an unrewarding talk with the Dr. office this afternoon. I laid out the issues, need AMN now, need help with constant fevers, she suggested we needed an appointment so we made one for next friday afternoon but nothing was resolved at all and I did not find out where we stand on AMN.
We had some very sad and tragic news this afternoon. I had not looked at our email messages to Nan's computer for some time and when I did I discovered that our dear friend Herb Flom who was a fellow GISTer with very serious tumors had finally lost his battle. The kind remarks filled the web site as fellow GISTers wrote their thoughts and memories of Herb and Kathy. We personally have enjoyed their company many times and always were touched by the kindness and concern they expressed for Nan. Herb went through Gleevec, Sutent and most recently a trial in Las Vegas but the tumors kept growing and causing more and more pain and grief. So now our dear friend rests having fought a very good fight and setting an example of coping that lifts everyone who knew him. GIST is a terrible disease which now effects nearly 10,000 people each year in the US.
Nan ended this day stronger than at any other time all day. She was pretty clear mentally and even funny at times. It was a nice end to a troubling day. I have worked around here today and had two different cable guys here. Our internet is causing trouble with drops in signal several times a day, the tech was a great guy who has been experiencing personal problems, his young wife just up and left and he is recovering so we talked and got to know each other a bit. He found a bad cable that will have to be replaced by a different crew with Comcast, a cable that started at 21 in signal but was only 4 at the other end, it had massive leakage which could explain why our signal drops out at times. Then a second cable guy came and installed the dish I have already mentioned. he was great and stayed with the job until it worked perfectly. The mail brought a check, for a whopping $75. And I needed $7500. Oh well it is Sabbath now and I will concentrate on Nan and getting Dana home from Oakland airport at 11:45 tomorrow morning. We are so delighted she is coming back, she is getting a straight thru flight and leaves Houston at 9:30.
Nan seems more rested this evening and was without fever when I took her up, the chair seems to help her drop degrees.

Please pray that Nan's fevers will cease, that AMN will arrive, that the pains can be controlled, that the confusion will be less and that God will be in charge of everything.

To our dear friends we say thanks for caring and thanks Pam for coming over to be with Nan in the morning while I go to Oakland.


tim and nan

Thursday, July 12, 2007

The Ramp works great! Timothy settles in.

Dear Freinds, family and fellow GISTers,

For Nan this has been a frustrating day in that she wants to be with the baby so much and knows she cannot due to her extreme weak condition, at least not yet and somehow we need to get her mind more clear before we make that trip. This morning on her own with a 102 fever clouding her mind she got on the phone and talked info into finding the birthing center in Santa Cruz. She found out that Jason and Jo were taking a nap, they didn't bother to tell her the baby had been born hours before but we found out a little later when a very happy Jason called with the news. He said all were doing fine and then Nan began to relax with fewer tears and anxious moments.

This evening she pulled another one, was confused about the time and called Sharon at 9:45 our time, or 11:45 Sharons's time, she was sure it was morning and could not figure out why Sharon sounded sleeply, I finally think I persuaded her although I am not sure. She is a Nelson and they can be pretty set in their ways at times.

This afternoon about 4 I went up as I sensed she was waking. Sure enough she was wrestless so I asked if she wanted to come downstairs, mary was here too and together we mostly watched as Nan got up, walked to the stairchair, rode down and climbed into the wheel chair. I then was able to drive her through the dining room and down the new ramp that Art so lovingly built and drove her right to the recliner. She stood and plopped down into the chair where she settled in for the next 4 and 1/2 hours. Her fever soon went away and she first talked to Mary, then was hit with a wave of pain so asked for Adavan, in a few seconds she was gone. She was full of funny comments this afternoon and Mary and I enjoyed hearing her cute words, words said without a thought of what someone would think, just whatever came to mind. It was great but then she was asleep so Mary and I talked for awhile and then she went home to pack for a trip to Sunset Beach which is next to MBA where Jason and Jo live. I went back to the office which is in earshot of the chair and worked hard getting a very difficult appraisal completed and out and around 8:30 I found her waking. She asked for a hot drink as I could not get her to eat anything at all. She had some sips from it and then was hit with pain again. Then she decided to call Sharon and that was funny too. Dana told us today that Nan's brothers might come out for a couple days at the end of the month, she would like to see them very much.

We battled fevers of up to 102 all day but after sitting in the chair the fever subsided. I think I have heard that before that the chair helps even with fevers. She is stronger than a week ago and much stronger than two weeks ago yet there is so much to regain and I pray for her sanity, that she can regain total control of her thoughts and actions.

This afternoon she told me I was to go to Brentwood and get a roast beef bagel sandwich. I needed to get my drugs which had been ready since monday at Longs so after getting her settled in and asleep I went. So far I have not been able to get her to even sample a bite and she probably won't but at least it was a try.

The bank called yesterday to tell me not to use my atm on the business account as many accounts at the bank had been victims of fraud somewhere in the Visa system, a new card is coming in the mail. That was a shocker indeed. I sometimes wonder what else can happen.

I have the Comcast guy coming for one last attempt to fix my internet, it drops out several times a day, sometimes over 20 times a day for a minute or two and then is back on again. makes working remote very difficult. Then our friend Donna who visited yesterday and gave us a Christian dish is sending someone to install it between 10 and 2 tomorrow. it will be wonderful to be able to have programing that is uplifting and positive for a change. Thank you Donna for all you have done for us and thank you Pam for helping Donna find us. Incidentially, Mike Want and Shawn Want were the builders of our home we enjoy so much.

Dana is planning to fly here on Saturday arriving sometime in Oakland and she is bringing John with her, it will be great to see both of them again and her hand is doing well so far after her surgery.

This evening can I trouble you to pray for the much needed AMN107, we have heard nothing about when it will arrive, for clarity of mind for Nan, she hates this being in a fog, for tumor control and even more for pain control. There are times that in spite of the pain meds that flow through her body she still has incredible pain. Also please pray that God will deal with the fevers that trouble her night and day. This brave woman needs a break and we call on our loving Heavenly Father to extend that break according to His will.


tim and nan
ps The photo is of the great new ramp that allows me to move Nan about safely in the house. It works great and thanks Art for making it happen.

He's Here!

Timothy arrived at 3:30 this morning via C section, he weighs in over 7 lb and over 20 inches tall, Jason sounded so happy and contented when he called. They are at a birthing center in Santa Cruz connected to Sutter in some way. Nan has been very concerned about the babys delay and on her own while having a 101 temp this morning and confusion that goes with it managed to find the number of the birthing center through 411 and talked to a nurse that said Jason and Jo were napping, didn't bother to tell us a baby had been born. Nikki pushed a bit harder and got more info and then Jason called with the great news. We thank God for His watching over them as they endured this very long process.

tim and nan

Wednesday, July 11, 2007

A day of helpers, Art, Barb and Gerry, PT nurse, Donna Want, Pam

Dear Friends, Family and GISTers,
11 pm, very worn out but what a day this has been. Nan woke with 102 fever and we did our routine and got it down, at 7:30 medical supplies were delivered and the dogs let us know, at 8:30 the PT nurse came and gave veryi practical advice to get Nan back on her feet, then nan slept for awhile. At 9 am Barb and Gerry left for their home, what a lift they have given us, sparkling kitchen, dirt free cars, and love by the buckets for Nan in this tough time. Nan then slept until about 2 pm. Art arrived around noon to begin work on the ramp so the wheel chair can be used in the house and to the garage, he worked all day and its great and very safe. Donna Want and Pam arrived about 4:30 for a brief visit and I used that time to go over to Paul Reeds home to talk with Debbie. Then back home as Art loaded up and left, he had brought all the tools he needed and even the supplies. During the day Jason would call with updates, Jo had a rough night with no development, then some medicine to promote delivery about noon and finally things started moving gradually but as of now still no baby. Nikki too has been in touch with Jason keeping up on events. They gave her an epidural this afternoon and finally Jo got some much needed sleep and rest. It is now over 24 hours of limited labor and Nan is so anxious. She even called Steve Ahn, our friend and OB Gyn in Tracy, she managed to use the phone and call when that has been beyound her all day, she is so worried about the baby and Jo's health. She feels very bad that she can be on the scene to lend moral support. We have always tried to be there when our kids were facing severe challenges and not being able to get out of bed in not to Nan's way of thinking. The PT lady was very wise today telling Nan that if she would do the exercises mentioned that she would be able to get out of bed on her own. That got Nan's attention big time.
Pam and Donna were so kind and rubbed her feet, used the tummy pump to clear some fluid and just loved Nan. We really appreciate their coming as we know their schedule is full every day. I thank Art for coming and helping like he did. While he worked in the garage I tried to get work done inside but there is still a pile to complete it seems.
Nan is not well this evening, she wakes from deep sleep with severe pains now, feels generally bad and is still somewhat spacey at times which she detests. She was glad to talk to Dana after surgery today and was relieved that Dana had less pain and less pain meds than the right hand. We look forward to her return when the time is right for her.
Once again I want to say thank you to Barb and Gerry for their visit and moral support. What a total lift they give when they come, they bring their own bedding, even their own towels so not to be a burden and they take all the boxes and bottles I never recycle with them.
So I say good night, I'm not even sure what to pray for any more. We still have some fevers in spite of no visible infection, we have some mental fuzziness, we have some severe pain and we have some gradual improvement in strength.

tim and nan

Tuesday, July 10, 2007

Dear Family and Friends,
11 pm after a huge day for all. Nan woke with a fever of 101, took tylenol and later it was gone, was so cold, actually cold, not shivering with fever that I let her have a blanket today, the room felt icy. After doing research this morning Gerry and I left at 11:30 for San Anselmo, a tiny town near San Rafael in Marin County. Gerry was amazed at the values and the tiny roads we had to traverse to get to the subject and then comparables. On the way out we found a Subway which was great. Then followed the GPS to Sonoma to a very nice home in a classy neighborhood, shot comps and then set the GPS for west sac. We arrived at 5:40 only 10 minutes from target time after driving a couple hundred miles. Did that one and then headed home finding our way through back roads and such till we found Freeway 5 near Lodi. When we got home we found Nan and Barbie had a pretty good day, no fevers, lots of good rest, a couple hits of dilautid and more clarity most of the time. Jason had called 4 times today to check in and said each time he called Mom was more clear and lucid. When he told her Jo's water had broken she started to cry. They were headed to the hospital to just get checked out but I could tell they were both excited about what is happening. While his arrival is not scheduled for a couple more weeks anytime will be fine with all of us. Dana has referenced the moon in her thought about when the little guy would arrive.
Nan called me as I was on the final leg of coming home and we spoke about her sitting up in the chair, she did and made it look easy. Then Barb made some yummy soup and Nan had a few bites. Finally it was time to go to bed so she put herself back in and cuddled up under her blanket and went to sleep. I gave her Adavan, two different kind of antibiotics, new TPN and made sure all bags were emptied. Barb had kept everything in order all day and did a great job.
Gerry was fun to have along and is a constant hoot, he does not like to eat in the car, I always do since I can get going to the next appointment that way, but Gerry is retired and not under the same time pressure I am. Gerry likes to get free drinks from where ever we go ordering them as senior drinks, sometimes it works and sometimes they just stare at us, Gerry likes to tell other drivers what to do and even me once in a while. Never a dull moment with Gerry there that is unless he falls asleep.
Today I have spoken to the pharmacist at Critical Care. Blood work results: creatins went from 2.7 to 3.5 (bad direction), hemoglobin is now 8.9, was 8.8 last week (will need transfusion soon), white count was 13.1 last week and 7.5 today, higher white count means infection so todays numbers were great, liver function was somewhat elevated but they say it goes up and down. I asked for and will get more hydration in the morning so I can give her hydration every day, that should help with the creatins. Then doctors office called and we together decided that we let the antibiotics finish out tomorrow and then wait and see what happens. Physical therapy is coming to see Nan at 8:30 in the morning which will be interesting indeed and perhaps helpful as well. In the afternoon Art is coming over to visit and we will think about a ramp, later in the day Pam and Donna Want are coming to visit, that will be so nice because Donna has been so faithful in remembering Nan in prayer and to prayer groups, every since Boston until now. Mary told me she is making some squash with onions like Nan likes so that could arrive tomorrow also. Its shaping up to be a big day.

Barb and Gerry must leave about 10 tomorrow and we will miss them. They have helped in so many ways, I only hope we can do something helpful for them in the future. The are our friends, our helpers, our courage builders and even provide laughter from time to time. And the closets are clean of available candy now that the sniffer has found it all.

We all need to remember Dana tomorrow as she once again goes under the knife getting her other hand done for carpel tunnel issues. We look forward to her return as soon as possible. Nan talks about Dana all the time and even tried to call her tonight about 9: our time, 11 hers.

Well its time to sleep, thank you for your prayers and I do believe Nan is stronger, more alert and very ready to take on control of her own life again, all good signs. She is an amazing lady and still stops my heart when I see her face, her eyes or a leg out from under the sheets, amazing!

Thank you our dear friends for all your help and good thoughts, prayers and encouragement. We hope Carrol had good answers at the dr. visit today.


tim and nan and barb and gerry