Nan Mustard's Recovery

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

Monday, April 30, 2007

Keanna turns 4 today! Nan is getting lots of sleep

Dear Family and Friends,
Its evening now, Nan has fallen asleep and a TV program is on quietly in the background. An hour ago when I returned I found Nan's temperature was starting to rise, her heart rate was up a bit so I requested some ibuprofen. Our thoughtful nurse brought in all of Nan's evening meds and included the ibuprofen she needs to head off the fever before it gets serious. Nan has been pretty much out of it today, an example is when Art came in to say hi and ask what day it was she told him Saturday. She is not capable of doing very much for herself right now and Art thought he saw the effects of too much meds so this evening we are not doing any dilautid, last night she had two doses during the night. Her body takes a long time to clear meds through her kidneys. I wonder if we are headed for at least a single session of dialysis to pull fluids off her body and to give her kidneys a break. We hear that a kidney doctor, Dr. Rhone was here today but I was gone getting the car and Nan would not remember such a visit. Tonight there are three kinds of antibiotics going and blood cultures have been taken, the urine has been sampled and hopefully soon the actual infection can be located and wiped out. Today Nancy, the PICC line lady was able to replace Nan's line without replacing its location, unfortunately the end went up into her neck, not down into the proper artery, this error was discovered by an xray and so she tried again, same result. Third time and they got it right so Nan got three more xrays today. Nan has eaten some food at each meal time without any nausea. She has little pain going right now but her arm where they worked is causing some understandable pain.
Art took me to get Nan's van in San FRancisco and the roads were clear all the way. Not only that both Art and I had easy trips back to our respective locations. I saw the melted freeway and it is unbelievable really, huge steel girders melded down to the ground. Crews were already working on the removal of the bad stuff and then the rebuilding can begin.
This evening I drove out to meet Nikki, Steve and Keanna at Chilis in Brentwood. We had good food, welcome after the minimal food I have had the last 4 days, very wonderful fellowship and an enjoyable time with Keanna who proudly held up 3 fingers and then 4 to show her age had changed. She drew her grammy a picture which I brought back for Nan to enjoy, made her smile the first time today. After the meal they came to sing to her and Keanna hid her head under steves leg and then came up smiling. What a kid! And what a lift to the spirits to be with these precious people. It was hard to see them drive away afterwards. At the resturant my phone battery died and I could not get back soon enough to make sure Nan had not tried to reach me. She was fine and deeply sleeping. I woke her and showed her the picture Keanna had drawn and then it was pill time. We watched two TV shows together and she stayed away for them until I was on the phone to my brother and she fell asleep again. Later I will wake her since we need to do her tummy dressing yet tonight.
If I had a wish I would seek to have the fever located and a second wish would be to find a way to remove some of the extra fluid in her tissues. Can we pray together about those points tonight or in the morning when you read the blog.
Tonight we are sending our love to you from room 325 on the third floor of the Concord John Muir Hospital, Concord Campus. Pam was going to come this evening but I told her she would be sitting in a room with a sleeping very tired patient so she put off the trip until another day.
Please pray for Nan!


tim and nan
ps A big thanks to Art for his help, friendship and taxi service. Thanks Connie for sharing your guy with us for awhile today!

Miracles still happen - morning report from Concord

Dear Ones,
High fever during the night, finally down this morning, extreme fatigue, doctors and nurses on top of things. Pam coming to visit this evening.
Dr. Shoba visited an hour ago, said two issues are infection / fever and high levels of fluid Nan is retaining in her tissues. PICC line lady, Nancy, came in to check the line and was distressed to see so much of the line on the outside of her arm, ordered an Xray american style, you know large machine rolls into the room etc. A few minutes later a conference with Dr. Shoba and a decision, PICC line was not deep enough into the artery and was at risk, also needed changing since it could be the source of infection at its tip. Nancy and Dr. Shoba decided to try a seldom used exchange process where they pull out the old picc line and using a wire put a new on into the proper place without creating a new incision point in the arm. Usually only works for newly installed PICC lines but this one has been in for 2 months already. Nancy mentioned praying and God allowed her to complete the picc line exchange in Nans arm right here in the room without having to install a totally new one in a different arm. She was amazed herself that it worked and very grateful to God as we are that one hurdle was overcome with minimal pain and suffering. Nan lost her first colostomy bag today, the nurse installed it and of course is not really very used to them and it failed all over the bed. Nan is so frail and mentally slow right now that it took everything she could do to put a new one on and of course when we had it off her body decided to deliver big time, shall we say several towels will never be the same! But Nan did it and then a very nice nursing assistant came and changed the bed for the second time today but no complaining and she spoke english!!
Nan is receiving three kinds of antibiotics at the present time and has had broth and jello for breakfast, now of course after the picc line workover she is sleeping soundly and has no present fever. Somewhere in her body there is a source of fever that will not give in easily and we need God's directions to find and stop it.
Art is driving up from San Jose to Concord and will give me a ride to San Francisco where the van is parked. Then he will head home and I will try to fight my way back through the traffic. The freeways were damaged by a gas truck fire and repairs will take months to accomplish. The result will be snarled traffic for some time to come.
We will also be seeing kidney doctors and infectious diease doctors today in hopes of locating the infection. At this moment other than being very sleepy Nan is feeling pretty well. She has complained of a headache for the last few days which is troubling. She just started wiggling her feet, even in her sleep she does that to keep blood flowing. She is so faithful at things like that.
I would suggest that she can take calls but I'm not sure she will wake up enough to hear the phone ring. Her cell is beside the bed just in case.
Keanna turns 4 today offically and has asked that we eat at Chillis in Brentwood so when I get the car I will head out this evening to be with Keanna for awhile and then come back to be with Nan. Since Nan has that nsra or whatever condition she is going to get moved to a private room sometime today I think. Hopefully I can spend the night again like I did last night since it has become much more important that I be near to work with medical staff who might not know things like, she is 30 lbs heavy with fluids, that she has a low blood pressure all the time, that her resting heart rate is 110. Any of those things can cause nurses to begin treatments on their own which will not help and only hinder. I know that when her heart rate increases above 115 we are headed for a fever within an hour and when it begins to drop from its 150 or 140 then the fever is getting better.
Pam has been in constant touch with us while we were in Mexico and since we got back. She said that a murderer is in the area surrounding her school and that she needs to be extra careful. She plans to drive over this evening after she gets off work to see Nan and I know Nan will enjoy seeing her.
Steve, Loree and Heather have been great about helping with the work situation and I see from the on line banking that several deposits have been made since we left last monday. That is wonderful.
I am writing now because I'm not sure when I will get back to the room and wanted you to know how she is doing. While we regret losing our cruise we are very thankful to be safely home with good medical care and family / friends nearby. I can't help thinking that God was managing even this trip and sets things in motion for good not evil.

Thank you for your many prayers and positive messages. We treasure every one of them.


tim and nan

Sunday, April 29, 2007

Home in the good ol USA. Nan is doing well.

Dear Family and Friends,

Since Art was kind enough to blog for us last evening much has happened. As you know we were escorted off the ship and into a waiting ambulance Mexico style, all our luggage, wheel chair, Nan on a gurney and an attendant and the driver. We raced to the hospital which did not look so good from the back side where we entered. The floors were tile, the room was clean and there were three nurses ready to help us but no english could be found anywhere. Eventually the doctor who met us on the ship arrived and then an internist and then an oncologist. Nan was undressed rapidly and a nice johnnie was put on, blood was drawn with a huge needle but in the first stick and after a couple hours we were wheeled to the elevator and up to our room on the 4th floor, wow what a room, it was huge, had a private bath and a nice place for me to sleep. The doctors tried to catch up with the complicated patient Nan is and then started IVs of antibiotic. They also decided that she needed a transfusion which is of course the reason we were removed from the ship. The hemoglobin was 7. The doctors were in agreement that Nan needed to be mediflighted to her home hospital and told Amy from Travel Guard that from the beginning. She was very proactive making calls to the ship, the hospital, the doctor and my cell to keep us all heading the same direction. Mid afternoon we were told in broken english that the blood had been found. We were amazed since it often takes two days to locate blood for Nan's rare antibodies here in the states. WE were both very concerned about the blood supply in Acapulco but the doctor told us that the supply was carefully screened, we will see. Then the fun began. Early evening the first unit of blood was delivered and the nurse walks in and hangs it up and connects to the PICC line expecting it to just flow in. WRong. You have to use a pump since the PICC line puts up considerable resistance. We tried to tell her but our english words fell on deaf ears. For two hours she tried everything to no avail. We finally asked to have them call the doctor and he told them to use a pump, then he came in to make sure they did. Then for the next hour they could not get the pump to work. All the while the blood is warming and not getting into Nan's body. Finally the stubborn nurse went to get another pump but the doctor came back to tell her, just do a new IV, Nan was horrified but they came in with a big needle, found a vein and then the blood flowed well. Then Nan's heart rate started to increase signalling the beginning of a new fever. We asked for Motrin or Advil, not Tylenol but of course the language barrier prevented us. Finally the doctor called in and we got the right stuff to head off the fever. Nan's body wrestled with a bit of fever for hours but by morning it had dropped back to normal. They waited for about a hour between blood units for the temp to keep dropping. Mid evening a cute young doctor came in with excellent english and she solved many problems for us. For example we ask for something we could use to empty the colostomy and the nice nurse came in with a bottle of water! During the night one of the nurse refused to allow Nan to help her close up the colostomy and of course this morning it was all over the bed just missing the nephrostomy insertion point. Then an eager young nurse or lvn came in with a basin of cold water and soap to do a bath, she scrubbed and nearly froze Nan with the cold water, finally Nan told her enough but she meant well. I stayed in the room and helped Nan with meds about 11 pm, TPN replacement about 2 am and empying things when I could get to them before the eager nurses.

One thing we discovered, no food was served the entire we were there and none was offered. Most patients have families who live nearby who bring in food so we had nothing to eat. I walked a few blocks to a large Safeway type store and bought some drinks, protein bars and peanuts but Nan had nothing to eat all day and nothing this morning either, in fact she has had nothing to eat all day today either.

Amy called to let us know that the medivac Jet would be arriving at 2 pm local time. How to get there? Well our doctor said the hospital ambulance could do the job. Oh and by the way you can only take 2 small carry ons since the jet is very small and full of hospital equipment. The doctor knew someone who could help so Roberto came to pick up our extra luggage pieces and let me know it would be about $700 for the three suitaces! That should have been a warning about what was to come. As we were preparing to leave the hospital a man said I must come now to a little window where I would pay up. So I paid for the three doctors, the ambulance, the meds and the hospital room. Only $6,600 charge to faithful AMEX.

Nan had asked to get up and dress about an hour before the plane arrived and after some effort we got her all dressed and she sat up in the recliner until time to leave. All three doctors came to wish us well and we thanked them for their caring services.

We loaded Nan in the ambulance along with the wheelchair, our two carryons and headed out through busy traffic. Our driver was pretty amazing and finally got tired of being nice and turned on the siren which continues for the next 20 minutes as we raced through traffic, dodging buses, driving on curbs and weaving in and out of traffic. The scenery was beautiful along the way I guess. Jason was on the phone at one point and said it sounded like I had robbed a bank and was being chased by the cops. When we arrived at the airport the driver pulled up to a gate that is usually opened quickly for medivac situations, not this time, the guy would not budge and after 25 minutes of sitting in a very hot and sticky ambulance we finally had to get out and go through customs, a guy wheeled my luggage out to the plane which was 20 feet away and then stood there, I thought he was an official but finally he asked someone to tell me I needed to pay him a tip. I had some change from the shopping trip so tried a 10 peso note and he was happy. We boarded our precious little jet, a citation 1 and found it to be very cramped. It had a crew of 4, two pilots with thousands of hours experience and two very professional and approachable EMTs who have special flight training. Nan was gently moved into the plane to a narrow bed and strapped in, hooked up to an ekg, blood pressure cup around her leg, no arms available without IVs in them, covered with a sheet and we took off. AFter a lot of juggling they disassembled the wheel chair and got it on board as well. The interior was hot since the temp was about 95 and humid but soon the AC system took over and we were too cold. The guys worked well together as a team and were over qualified for the trip. They showed us where the cold drinks were kept, the chips and we settled in for a 2 hour trip to LaPaz where we got out and stretched our legs, they let Nan sit up and emptied her bags and worked to make her comfortable. I had to pay 50 bucks to enter the US and show passports. Then back to the plane and to San Diego. The scenery below was mixed and beautiful, clouds, ocean, beaches, dunes, little towns. The seating was very tight and I was never fully comfortable yet the time passed. The EMT guys and pilots were great. The little jet flew at about 350 miles an hour and was fast on takeoff and the landings were perfectly smooth. In San Diego our pilots hours were up sinc they had been flying since about 7 in the morning. we took on two new pilots who told us the trip from San Diego to Concord would be 1 hour and 30 minutes. It was to the minute. We landed and the ambulance was waiting to take our jet emt guys, Nan and myself to the hospital. AFter the emt guys were satisfied Nan was delivered propertly they were taken back to the plane to fly back to San Diego and some much deserved rest.

Nan is resting quietly now and I'm staying here in the room with her in a little window bed, that is unless they admit a roomate and then I have to leave for the waiting room. I'm stuck here since our van in parked safely over in SF by the ferry terminal. Since the fire on the freeway will cause massive traffic backups for anyone trying to help me get my car tomorrow I am considering BART to the city and then walking to get the car. I've got to confirm first that I can even get the car because it is a special cruise lot and the cruise is not back until next friday.
We are so very thankful for the way God has led over the past few days. We have had many anxious moments and frankly I am having some this evening. They just weighed Nan in her bed and she is 160, that is up 14 lbs since we left monday. That means the medical center on the ship and the mexican hospital have added even more fluids than she can handle, where does it stop? I have ask the nurse tonight to put no more fluids in than absolutely vital. I called our doctor this morning to ask him to have a TPN ready for her tonight but that did not happen perhaps because it is sunday. So when this TPN bag is out she will go without for the rest of the night. Perhaps that is good though since the TPN is hydration also.

This is certainly something we want to ask you to pray about, getting rid of 30 lbs of extra fluid on her body.

We are thankful that the trip on the jet went smoothly today. She was strapped to her little bed for 9 hours of flight and yet her blood pressure and heart rate were some of the best we have seen on the trip. I am extremely grateful to be back near her oncology team and to be able to communicate in english. I want to be very careful to insure you we appreciate the efforts of all the staff at the hospital in Acapulco. There were very caring and attentive. The language barrier is huge in medical situations.

We are very sad that our cruise came to an end almost before it began but the infection that gripped Nan was very serious causing several times of 104 and above temperatures. She had some very miserable hours in the sickbay of the ship. Had her hemoglobin not been low we would not have been removed from the ship as she was much better by Sat. morning but they felt that to continue with such a lot blood count was dangerous since we were in the town with the best available hospital. We are not bitter just disappointed and I hurt for Nan who wanted this trip so much and had planned for it for months and months. The last three days have cost about $45,000 and Travel Guard is covering all of it even to the phone calls to doctors here on shore. How soon they cover I don't know but they seem to be very aware of doing a good job for their clients.

We have been touched by your kind responses to the blog and to our situation. How can we ever thank you enough for your prayers and concern. It was situation of our own making and entered into it knowing things could go wrong but we had no way of anticipating an infection so strong that the fevers were higher than ever before in her life. So in light of everything tonight I am just grateful, it was very scary last night to know our ship sailed away at 11 pm and were left there in Acapulco not knowing anyone and not sure of what was to happen next.

We took several phone calls last evening which we very helpful. Roberto Salas called from Monterey offering encouragement. He is very active with GIST organizations and it was so good to hear from someone more nearby.

Since we arrived here we have found some disturbing news. Since we left on monday on the cruise her weight has gone from 146 to 160. That means in attempts to cope with Nan's fevers and infections enough fluids have been added to her body to add 14 more lbs. It is my prayer and hope that while she is in the hospital some efforts will be directed at getting some fluids off and the weight down. When I heard she was 160 I just felt like someone hit me in the gut. She does not need more weight or fluid retention.

Well as you might guess I am very sleepy tonight. I'm settling in on a little window cot here in the room to be close to her. She is sleeping so soundly and is so tired tonight. Dr. Melynk has ordered three kinds of antibiotics and they have just been hung and are going in now. Her heart rate is 133 which usually means we are heading for a nasty fever. The nurse is very attentive and has agreed to check her temp every hour this evening just in case we need some ibuprofen which seems to always work at breaking her fevers eventually.

We thank God to be back tonight.


tim and nan
The three men with Nan were her doctors in Acapulco. The others are of the air transport.

Saturday, April 28, 2007

Nan in Acapulco Mexican hospital

Hi I'm Art and doing the Blog for Nan & Tim tonight. They want to thank eveybody for thier prayes. They left ship this morining at 8:30 AM. Nan was put into hospital and doing well. She is getting a transfusion of two units blood. Travelguard insurance is flying them home tomorrow. Via Learjet Ambulance they are flying into Concord. Nan will go stright to Mount Diablo hospital. Had a small scare tonight and temp was going up tonight again. And once again they thank everybody for there prayers and support. Mary and friends visited Nan in hospital today, thank you that was very special. Looking forward to safe trip home, and being with and family again. And seeing Keanna on her fourth birthday. Thank you all for reading and being with us through the blog. Love Tim & Nan (art) I was on the phone with Tim......

Friday, April 27, 2007

The cruise is over....

Dear Friends and Family,
This evening our hearts are pretty bummed out, the doctor came in this afternoon and told us we would have to leave the ship for a hospital in Acapulco to yet be determined. We will be leaving the ship in the morning right after we arrive. A local agent of Princess Cruises will arrange transportion and a hotel room for me and a hospital room for mom. Can you possibly imagine how disappointed she is tonight. She has had two more high fevers but now they catch them sooner with tylenol and that seems to head it off so it does not get so high. But the big issue the ship doctor is removing mom is low hemoglobin, today it was 7.5 and he says that is too dangerous to be on ship or even fly so he wants her to have a transfusion in a mexican hospital. That really frightens us a great deal.
Our ship doctor has arranged the entire shore process with Travel Guard our travel insurance. Once we are at the shore hospital and they access Nan they will talk to Travel Guard and suggest a plan, if they say she can fly then Travel Guard will find commercial flights home, if they determine she is too ill to fly commercial then they will bring a jet ambulance in but they will only go to San Diego unless they make a special waiver, not likely. As I left the room this afternoon to have dinner with Mary and to pack our room up, Mary actually did the work, Nan was beginning yet another fever session, was throwing up a bit and had a nasty headache. As they keep telling us Nan is a very sick woman.
I am in total disbelief that we are being put off to a Mexican hospital for of all things a blood transfusion. I hope to be able to persuade the mexican doctor to allow her to fly home in spite of hemoblogin being 7.5. So we will see.

It is highly unlikely that I will be able to blog again once on land. However my cell phone will work, 925 998 9855.

Please pray for both of us especially Nan as she is totally upset by all that has happened. We knew we were taking a risk but really hoped and prayed that her health would hold for the trip. It did not. We have infection someplace, eloevated white count. Not good at all.

Please pray real hard for the next twenty four hours. Pray for Nan's health and for His guidance over all involved. We might need some transport once we get to San FRancisco or we may end up in Houston, just not sure what will happen right now.

So I'm signing off and for those of you who know me well, you know a mental state I am in. Thank God for Mary who has been like a rock for us.

There is lots more to say but I'm out of minutes and the nice guy here is going to refund some minutes back that I have left over.
Tomorrow we pay in full for the medical care we have receiving on ship, wow and then we pay for the Mexican hospital to be paid by later by the insurance company.

love to all, how I wish we were home with Keanna tonight.

tim and nan

Please pray, persistant fevers up to 104

Dear Friends and Family,
The bounce did not last. Nan had a terrible night with high fevers and shakes and shivers for hours. To help her cool down they put a fan and just a sheet covering her and she endured incredible misery until the fever finally turned downward. We have learned to watch her heart rate, when it starts to climb we know a fever is coming, then the shakes set in and finally the temp begins to register on the thermometer.
I spent the night on a bed across from her bed and laid down at 2 am and got up at 4 am to find her doing better. She enjoyed some peace, a hot tea and we changed her dressing, gave her Zophram and then we saw the heart rate being to rise, soon the shivers and then the fever started to climb. Nan cried out to the nurse, can I have tylenol sooner this time and they allow her a 500 mg. So this most recent fever toped out at about 101 or so. I continue to be by her side and have taken a break at her demand that I take a nap in our room and blog to ask for prayers specifically for the fever and its infection source. Until we stop this circle she can't begin to function normally again or even leave the hospital room on board.
Nikki could you call Terry Hall, our home health nurse, 925 382 5106 and let her know what we are facing here. I've been concerned that we may not have kept the TPN cool enough. Our little frig is maintaining a temp of 50 to 54. Can you ask her if that is adquate to maintain TPN day after day? The put a not in reply to the blog and I'll try to pick it up that way later in the day. I tried to call her from the ship but missed her. we are trying to solve any known or unknown source of the infection and so far we are drawing a blank so Nan is getting three kinds of antibiotics over and over in spite of the side effects.
Our world is pretty scary here right now and we do not know what happens next. We are praying that God will step in with His divine healing for Nan one more time.
I wish we had better news but we don't at this point. Nan is full of courage and hope, you'd be impressed for sure. We miss all of you and at this point we are stuck on a big boat a long ways from home, our worst fears have come to be.

So at this point we need to know God's leading out of the tough situation Nan is in.

Please pray,


tim and nan

Thursday, April 26, 2007

Nan bounces back!

She chose the title just before I left her room in the ship hospital. As I left her latest temperature was normal again after a day of 104+ and extensive vomiting this morning. The hospital crew could not have been better or more caring. First they decided that she must leave the ship when we arrived due to her complexity. Gradually as we got to know them and shared what Nan has already experienced and won over they began to mellow. Finally we arrived at a compromise. They would do antibiotics available to them and if she was not better by Saturday they will ship her out to a local hospital. In spite of being very sick and nearly out of her head she refused to consider going to a hospital in Mazatlan today. For hours her fever would not break and continued at nearly the 104 for hours. So she got three different kinds of antibiotics today, is now getting 1 liter of saline with potassium, her level was not out of range but at the lower end which is good news, the potassium in the TPN bag must be working. Her creatines were 2.7 today which is not bad really. They found bugs in her urine again, like always. Something was very resistant to tylenol and the other kind of fever buster as well but finally yielded. How can we every thank you for the prayers that have placed in Nan's behalf today. I have prayed nearly constantly today for God to do His thing, not ours for Nan and this evening she is lucid, asked if she could have asparagus soup and amazingly they found some on the ship, she loved it. mary was a wonderful friend and was with us for hours this afternoon encouraging both of us and working the phone to make sure our travel guard is in full effect. It is and Nan bought the highest level so even if she has to be flown home it covers.
So now what is up? They have let me come sleep in the hospital with Nan tonight and I plan to do just that to keep a watchful eye on her. We hope that Nan is back to her old self tomorrow and can be out and about after a good night and morning of rest. For awhile today I watched a heart rate of 152 and then it gradually began to slide until now it is about 105 to 110, her normal rate. We have had to intervene many times today with information that the medical people did not have and together I think we have accomplished a real turn around for Nan.
While in port the doctor showed me how to use the cell, calls to the us require +1 in front of them. So I've been able to be in touch with some of you that I could reach. Unfortunately just when nan was feeling good enough to talk on the phone we were sailing out and leaving the cell service behind. Next time will be on Saturday.
Thank you each and every one for your prayers. Lets face it we were all concerned about Nan being so far from medical care and today proved that to be true. I am praying that God will help us in spite of our lack of perfect judgement and bless Nan with a positive experience. She certainly has had enough bad times over the past year.

So we send our love and our appreciation to each of you.

with love

tim and nan


Dear Friends and Family,
Nan is very ill, started late last night with being chilled, woke with high temp and many episodes of vomiting. She has been at the ship hospital since 10 this morning and is on antibiotics. Ships doctor may yet transfer her to the shore hospital here in Mazitlan. We leave today at about 3 pm I think and will be at sea for a day and then in another large city. I've seen high fevers before but this one won't go away, went down and then back to 103.3. Mary has been a dear and helped us, is sitting with mom now so I can come and ask you to pray for her.
Nan is not responding like I would like, as I left the room I noticed her heart rate had started to decline from the 152 it was. When she gets high fever her heart rate usually goes way up. It was only 102 when we first got to the infirmary.
We were doing so well and I know Nan is crushed with the idea of having to go into a Mexican hospital. Mary is working on flights home or even to houston, anywhere in the states without tranfering planes. All of this is just in case her fever does not head back to normal. Can you imagine how I feel right now? Your case is overwhelming to anyone and Pams medical history she created for the doctors has been a big help.
Please pray that God will keep his protective arms around Nan and His healing to her fever. I am finally at a place where my cell works now but it is very expensive to use and will not be working tomorrow or evening this evening. Suddenly this ship seems like a prison instead of a getaway. Nan is lucid and just very sleepy right now, is aware of what is happening and shakes her head no when Mexico hospital is mentioned. I think we have the dr persuaded to allow her another day at sea to see if the meds work and then we'll take it from there. We have the best travel insurance one can buy so whatever we need will be covered.

Please pray, pray, pray.


tim and nan

Wednesday, April 25, 2007

A very good day at sea

Dear Family and Friends,
How I wish you could be here with us. We slept well last night, had an equipment failure of the colostomy but Nan knows just how to fix everything and within 15 minutes we were asleep again. Always shocking to discover it has failed.
We woke later and I got up and went to the internet room to talk to the office and discovered I can use my own laptop connected to their system. So I got my emails in and Nan can read them later. It was so nice to hear from so many of you responding the blog and we are really thankful for the blessings of being able to be here. For Nan it seems like a miracle considering two weeks ago she was still in the hospital running fevers etc. She has to be very careful what she eats and only eats tiny portions but she has been able to taste lots of good things so far. When I went back I read for a few minutes and then she was awake so we dressed her for the day, watched a bit of an old time movie with a happy ending from Turner Classics, then headed out with Mary to have lunch. AFter that we played dominos on the deck with Mary and saw dolphins beside the ship playing and putting on a show. Since we are in the middle of nowhere out here, the dophins were a special treat. The seas have been calm so far, the weather is gradually warming and it has been a wonderful day. Right now Nan is resting up for dinner and a show about piano tunes this evening, supposed to be good.
I was able to talk to Loree this morning with the instant messenger hooked to the laptop and it sounds like all is well back home. She knows a lot about fixing little typos and keeping people happy and on board so to speak. Steve is working hard and Heather has been able to help some too.
We miss being able to talk on the cell phones. It just does not seem right for Nan not to get to talk to Sharon or Dana like she does nearly every afternoon.
Loree let me in on a secret, that Syliva came and cleaned house and it looks and smells great. Thank you so much for doing that Syliva, we left it sort in a mess and I'm so sorry someone had to deal with our leaving disaster. Thanks Syliva, thanks so much.
We are relaxing, resting and spending tons of time together, a real pleasure since we rarely get to spend this kind of time together. Nan is feeling better today than yesterday with less nausea. Today she walked a long ways on the deck using the wheel chair as a walker. She did a great job and was proud of herself afterwards.
I know Nan misses talking to keanna in the evenings. She keeps mentioning Keanna and hoping she is going to have a great birthday party coming up. That little angel certainly has wound herself into our hearts and we treasure her so much. How wonderful that Nikki and STeve allow us to have so much contact with her. We Miss Her!
We really look forward to seeing Jason and Jo (with Timothy), Nikki and Steve and Keanna when we get back. Seems we are so far away.
We thank you our dear friends for your support and love, seems strange not to have Barbie and Gerry or Art along on this cruise. We miss them too.

Please pray that God will continue to bless Nan with health and recovery.

Love from our love boat to yours,

tim and nan

Tuesday, April 24, 2007

400 blogs, a great day at sea

Dear Land Lovers,
We are having a relaxing time and Nan is doing pretty well so far. She had a rough morning with some lingering nausea so she added a patch behind her ear and after a couple hours of sleep she felt better. We dressed her, loaded her into the wheel chair and went searching for adventure. We never found it but we did find the shops on board and she enjoyed looking at things and got a very cute little gift for Keanna that was 1/2 price. We avoided the art auction which in the past has been her undoing but of course no art this year. We went to lunch and Nan found a few things she could handle and enjoy. Then we ventured around for a bit more and finally went back to take a nap. I couldn't sleep much so found the library and a good book which I brought back to the room and sat on the balcony above the sea reading. Mary came and spent some time lying on the bed talking with Nan. Then we took the last of the TPN out of the cooler and to her room where we filled her frig so it is all safely in our 2 frigs now. I am just back to the internet cafe now after getting her ready for night, into her jammies, hooked to a new TPN for the night and when I left the room she was taking her meds and settling in for the night. We have avoided the formal dining room, Nan has some concerns about all the food smells and being able to handle it or lose things and embarrass herself so we eat at the Lido deck which has good food and is less formal and right over the ocean.

Our ship is going full steam ahead and we are many miles off the Cal. coast as we head down to the Mexican Rivera. Nan is enjoying herself and does not appear to be any worse for being on the ship vs being at home. I am having somewhat of a tough time relaxing when I am so use to a full schedule and racing here and there, taking calls, emails and seeing properties. Vacation, a strange concept really yet I am finding it renews my ties with Nan's heart, slows my heart rate and I am almost never hungry, good food everywhere one looks. Our ship is about 10 years old but is very clean, attractive and has comfortable beds, snug little rooms and a wonderful balcony to enjoy the sea air. We have our door open to the sea a lot for fresh air and the sound of the waves crashing against the ship as we speed along.
Tomorrow is Wednesday and so far we are doing well. This evening Nan wanted to see a funny guy do his act so we went and laughed a lot. It was great fun. Although it was formal night we did not dress up this time, just avoided the formal places and events but the ship was crawling with black tie and gowns. Most of the people on this cruise are older than we are with a few younger ones sprinkled in. The comedian played to the older group very well.
My friends we thank you for your faithful friendship over the past 10 months. We are yet on another adventure that I would never have even considered when we were in Boston and we are treasuring every minute of the time together.
To our family, Nikki, Steve, Keanna, Jason and Jo. thanks for the part you each played in helping us get to this trip. To our extended family, we miss the phone calls, Sharon, Dana, David, Jo and Linda, Irene, Jan and even mom althought she never can hear or understand what is being said. I miss my calls to Art and my brother Jerry and Pam. Yes Pam we are doing fine and have not had to use your history of Nan's GIST experience yet and hope not to have to but thanks for doing it.

Love to each and every one of you,

Tim and sleeping Nan

Monday, April 23, 2007

She made it

Dear Friends and Family,
Yes we are at sea, just saw the Farralon Islands go by a few minutes ago. It was an emotional moment when we passed under the golden gate bridge sitting at a little table sipping iced tea. Who would ever have guessed during those long days in Boston that this would ever happen and that Nan would feel up to a cruise.
Our day did not go routine. While we had planned to just get up and load up and leave I ended up having to complete an appraisal, our course the computer stopped working for about two hours and I was not sure what the outcome would be. But finally I think the Lord showed me a tiny error I had made on a sketch and when fixed everything starting working again. We quickly loaded up and Nan did everything she could to help. We drove to Hayward and they were ready with the final TPN box, then to the port of San Francisco, unloaded nan and all the 7 boxes and suitcases, went to find parking, got lost but finally got parked. Then they were very kind to help us board and get settled. Then came the muster where all have to go to the muster station to learn how to escape the ship when it sinks. Well the steward let Nan stay in the room and I went, bumped into Mary and let her know we were doing well. She was so relieved to see us.
Then when the bridge was coming up I pushed Nan up in the wheelchair to see it and to grab some grub. I had to fix two appraisals which Loree kindly emailed to me and I got them fixed I hope and they were going out over the data card just as the ship sailed out. Close!
Now we are at sea and there are no ways to communicate cell phone wise. We were told by Cingular that all cruise ships now have a cell phone tower on board and charge $2.49 a minute to let you talk, wrong, this ship has no such tower but we are hooked up to Mexico cell service so we may be able to get messages when we are in port at places.
I am still processing the reality that we are at sea and will be for the next 11 days. we will miss our precious Keanna who has a birthday while we are gone, I will miss hearing from jason and jo, from Loree and STeve and Heather and Jean. But for a few days work is far behind.

Please continue to remember us in prayer, that nan will be able to hold onto her health and enjoy this precious opportunity we have been granted. We really wish each of you could be here with us and it seems like fairy land that we are here after all the grief and suffering nan has experienced in the past year and even beyound that.

So we say good night and we are thinking of you.

Love to all,

Thanks family for your help in getting us here. Thanks STeve for covering for me while I am gone. Thanks Loree for wearing so many hats and doing each perfectly.

Sunday, April 22, 2007

Sunday evening, the count down continues...

Dear Ones,
Nan is doing pretty well today, Terry pronounced her ready for the cruise when she was here this afternoon. She has been up for most of the day and we just finished some raviollis which turned out to be less than perfect. She has been drinking water, cranberry juice and playing with lemons today. Pam arrived this afternoon to sit with Nan and help her create a short history on Nan's GIST experiences.

We are finishing up on packing the medical supplies and pretty soon I have to start packing my own stuff. And of course my computer is acting up as I need to write at least one more appraisal before we go.

Right now we have a fire burning and Nan is choking down her many pills, never an easy process because they require lots of water and that creates nausea. She usually makes it through though.

We plan to head out tomorrow about 11 for Hayward first to pick up some more TPN and then to the ship in San Francisco. We board and the ship sails at around 3 pm we think. I think we will follow the coast down for the next day. Hopefully during that time we will be able to use the laptop. Sprint told me today that their service will not work in Mexico which is contrary to what the lady at the desk at Sprint told me. So it will be a challenge to blog for the next 10 days. However we will try to get the good word out.

Nan continues to slowly lose the extra weight and fluids she is carrying and gradually I think she might be feeling slightly better overall. She was heartened this morning by a call from Jason. He and Jo were heading to the aquarium for the morning and then back for campus security duty which I'm sure they are all taking a bit more serious these days with so many awful things happening at schools.

I have such mixed emotions tonight. After nearly a year of intense concern for Nan's health and very little down relaxing time the thought of doing nothing but relaxing for the next 12 days seems unbelievable. So we move into a new experience, adventure and we hope, pray that God will guide and protect as we travel, enjoy some sun, sea breezes and good food.

Well we must wrap up for the evening. Thank you for your love, prayers and support.


tim and nan

Saturday, April 21, 2007

Sabbath evening, its been a good one

Dear Family and Friends,
It is the end of a good day, not a perfect one but overall a good one. Nikki called this morning around 8:30 and said Keanna would like to go to Sabbath School so I walked through the shower, raced over and we drove a sedate 60 mph to Sabbath School. It is such a good program right now about David and lambs and lots of action for the kids to get involved with. Keanna plays shy for the first part but gets more involved when it comes to crafts and snacks. The strawberries looked so good today and Keanna wore hers home on her face. After I turned Keanna back over to her mom and day I headed back to see how Nan was doing. We woke this morning to her being sick at around 5:30 which was a rude awakening for her. Seemed to come from no where, she had just had a drink of water and wham, there it was. Nan thought it was fine for me to take Keanna so we quickly changed her bandage, now I need to make it clear how "we" change the bandage. I go and pick up a small cardboard box with all the supplies we need. Then I hand the saline solution spray bottle which she uses to clean the wound after she has removed the old dressing. Then I hand her 4 by 4 gauze packs which she uses to clean the area, then I had her hand sanitizer and then I hand her the wick material which she pokes down into the opening with the long wood handled toothpick I had her, then gauze material which she bunches and fills the hole with, then an ABD pad which she folds and places just right and then I hand her strips of cloth tape as she tapes it down, so who really does the dressing change, the patient!
She went back to sleep and slept until I returned after SS. I slept a bit and then got up to straighten things and fold some laundry I had left on the cough because we having the great honor of company, we treasure company here. Bob and Carrol, Volney and Dorthea arrived at about 2 pm for a very nice visit while the fire burned brightly in the stove. Just as they were preparing to leave the door bell range and it was Lloyd and Bernice White, our Tracy friends. All of us had been in the Adoration Singers at one time or another and so we enjoyed talking to Lloyd and Bernice, catching up on their exciting lives since they retired and finding out about Lloyd's treatment so far for his cancer issues.
Later Nan asked for clothes and we dressed her in warm clothes and we drove to Mervyns. Just as we stopped we saw and lady and a little girl walk in front of the car, It was Nikki and Keanna. So we all went in to get a few things for Nan since the extra fluids have changed her sizes completely. Then to Target for dog and cat food. By then Nan was tired, cold and not enjoying the rain at all. In fact she and Keanna played in the car while Nikki and I did the Target shopping. Then we drove home by way of Burger King for a coke icy. When we got home she nearly jumped out of the car and headed for her chair which she has been in every since. We made some popcorn, she had a few pieces and then the coke came up, bummer. Now she has had all her pills and is waiting for me to take her up, up to clean sheets and pillow cases which I changed after I did her TPN.
We think we need to do some explaining about the cruise we are trying to go on if Nan's health holds up. The decision to go on the cruise was made a very long time ago and paid for a very long time ago. Our only cost at this point is the cost of parking in SF for a week, $150 and softdrinks on the cruise which we really don't care for all that much. We are not doing any day trips at ports of call, they tend to be expense and not really right for Nan at this point so our intention is to carry out a wish nan has had for more than two years to go on another cruise. As a travel agent she used to go often with friends and family but she has lost two cruises last minute due to GIST tumors. We were set to go to Alaska but 14 new tumors were discovered and the trip had to be cancelled at the last minute due to extreme pain. Later we were set to go on a cruise with Sharon, Troy and his family but Nan was in the middle of the trial program of IPI 504 at Boston and they would not allow her to go. In fact she developed the severe blockage that led to the huge surgery at a time she would have been on the cruise. So in that context I will do anything and everything in my power to see that if she is up to it and can handle it medically she will get her cruise. I am aware that many many family members and friends think we are taking extreme risks by going. We are under no illusions about that, we are aware that medical care that we might need will not be available where we are going. However in many ways Nan is pretty stable right now. I wish she had new blood in her and that we had a better plan for hydration in case she gets dehydrated on the trip. But we do have TPN arranged for the entire trip, ice chests to hold it, all the medical supplies we need are packed thanks to Terry, our nurse. Can we afford this trip financially? Our accountant would say NO. Yet God has allowed us to pay all the big bills that I shared with you before I was facing. We have some funds left in the Nan's recovery fund in case we need something heroic while we are away. This is something Nan has wanted very badly for nearly 3 years, she has talked of little else. She is never demanding and has been through more than anyone I know. The very fact that she is here with us now is a miracle and the fact that she can even consider going on the cruise is yet another miracle and we intend to do everything we can to make this happen for this brave and gutsy woman. It is not our intention to offend anyone who has helped us over the past year nor to act like rich folks going on a cruise. This is a trip of a lifetime for Nan and we ask for your prayers that God will lead even now and bless according to His greater plans.

We thank you for being our friends, our family and we ask that you understand that sometimes people just need to do things they firmly believe in and this is one of those things.

We ask that you keep Nan in your prayers and we are so thankful today for the good people who make Sabbath School work for Keanna and the other children, for the precious friends who came to visit and encourage, for getting to meet up with Keanna and Nikki at the store and for the firewood from Art that warms our family room. Everywhere we turn we find reasons to be grateful.

With love

tim and nan

Friday, April 20, 2007

Friday evening

Dear Family and Friends,
Another week is winding down. Nan is resting in her recliner after taking her act on the road today. This afternoon we dressed her in jeans and sweat shirt, headed to Brentwood to have her hair washed and dryed, then on to see Dr. Melynk our beloved oncologist. He was very impressed with what he saw, no more red and swollen foot and leg, good blood numbers, weight is coming down, 4 lbs so far, he said no more than 1 lb a day a most. He was quite impressed with Nan's progress and wrote a letter explaining why we are bringing all the medical equipment on the ship and TPN. He hand wrote a beautiful letter in long hand, quite amazing really, beautiful letters and his signature is a work of art. He also signed a form for one of Nan's credit cards which has a policy for when you are disabled. They are no longer requiring a payment each month and no additional interest is being charged as well. He just shook his head when we discussed the cruise and made some comments about all the things Nan has pulled off since she developed GIST. He stands amazed at Nan and her courage. His lasix treatment is gradually pulling the fluid that has gone into her tissues back into the blood stream and then is cared for by the kidneys. He does not think she is dehydrated and did not think she needed a blood transfusion. I disagree but then I'm not the doctor. It just going to be very hard to find blood for a transfusion at sea.

I started my work day at 3:30 this morning and accomplished a great deal before leaving the house at 8 for Vallejo, a hour away. Then back to pick up meds, grab a vegeburger at Burger King, thanks Yvonne for letting me know they taste good and home to help Nan prepare for our afternoon out. When we got home Nan was ready to rest and I went to an appointment of a beautiful new home which is about 5,000 sf on a point lot with built in pool in rear deck, stone floors, double crown molding, huge kitchen with granite, built in frig, 6 burner gas range by Viking and everything else one could want. Nice place, probably worth about 2 million but I can only prove about 1.6 these days with the sales I have to use.

On the money front checks have come in nearly every day this week to the point that all the vital bills are covered, amex, house payment, payroll, IRS etc.

Now to bed, I'm so sleepy and tired and I know Nan is too. We are very thankful for God's leading this week, for the many messages of encouragement, for the prayers that continually ascend on Nans behalf. Thank God for Sabbath.

So good night from here, we send our love

tim and nan

Thursday, April 19, 2007

Nikki saves the day, Nan is doing OK

Dear Friends and Family,

Its 8:30 and its nice to be home with nan. I drove about 6 hours today to do one appraisal in Madera. Nice folks, had 300 chickens and sold eggs. Comps were all over the place but the trusty GPS helped me find them. Now I'm home sitting with Nan, fire burning, CSI on the TV. Nan spent most of the day in her bed resting up. Nikki was kind enough to spend the day here with mom, helped her find things to pack for the trip and Keanna entertained them both. They spent a nice afternoon together and it helped mom pass the time as well. The wound nurse came this morning to check things out and said the leaking wound is smaller all the time. She left supplies we will need on the trip.

I'm working as hard as I can right now in case the trip does actually happen. We are preparing to go and unless monday presents new health challenges we are on. Tomorrow morning I have to be in Vallejo by 9 am and then back here to take Nan to the doctor and then to see two more properties before crashing for the evening. Our visit with the doctor is important, they will do a simple cbc and that will tell us how basic in the blood are doing, hemoglobin, potassium, white count, creatins.

Jason is on the phone right now talking to his mom. Those calls are so good for Nan's spirits.

So we come to the end of a very busy and stressful week. I believe we have made progress, Nan's foot no longer hurts, she is able to move about more freely, she is pretty well free of nausea, the leaking from her nephrostomy tube has stopped. Pretty impressive when we think about it.

Thanks to Nikki's fellow workers who allowed her to be with her mom this afternoon. She was here all afternoon and they made a lot of progress working together. Finally she had to leave around 5 to get Keanna to her class. Thanks group! Thanks Nikki!

We are now heading to bed so good night or morning to our friends. We think of you in Boston, North Carolina, Colorado, Oklahoma, Idaho, California, Texas, Washington, Oregon and Hawaii.

Thank you for your prayers in Nan's behalf. We both appreciate them very much.

So good night.


tim and nan

Wednesday, April 18, 2007

Doing better, Sylvia to the rescue

Dear Friends and Family,
Another interesting day. First off Nan had a good night with lots of rest and little pain and wake time. But early this morning, 4 am there was very little urine output so I did not really go back to sleep with concern over possible dehydration. I left the house early this morning but wrote the important facts I needed in my book, then started calling Dr. Melynk, Nan's long time oncologist. His office finally caught up with him doing research and he called me directly. We discussed Nan's possible need of a transfusion and my pressing concern about possible dehydration. He was not aware of the 21 lbs Nan came home from the hospital with. So as we talked he decided that he would like to try lasix first, to pull some of the fluid she is carrying lose and out. He took the drug store number and called it in. We will see him on friday for a regular appointment and at that time we will decide about the possible transfusion and whether Nan needs one. While I was driving to Vallejo Sylvia Ahn, our long time friend from Tracy called to say she could come this afternoon to be with Nan. That was such good news. And so she came and spent the afternoon sitting with Nan and helping pass the time. She emptied every trash in the place unloaded and loaded the dishwasher and did more stuff I have not noticed yet. Thank you very much Sylvia for your help today.
Loree and I had discussed in advance if she could be available to help Nan make the transition down from upstairs mid day. Loree said she would be happy to help and did. She spent several hours here in the office today and was a great help holding the business together and dealing with the clients. Loree has a unique ability to keep tons of details in the air at the same time and to do it all perfectly, plus feed the fish, add to their water, double check the kitties and dogs and watch over Nan. Thank you Loree.
I am going to Madera tomorrow because I've put it off way too long. Nikki has agreed to stay with her mom for half the day and we are so thankful that she is being allowed to help out in this tough time by her work. Nan has already started a list of things she hopes they can accomplish as they are together tomorrow afternoon. I guess you know she is feeling some better, much less foot pain, no throwing up today so far, more alert and awake.
By the time I got back from seeing Discovery Bay properties this evening Nan had started taking the lasix and we hope there is a good result. Thanks Sylvia for picking up the meds and some milk.
At this point we are still pointed toward the cruise and with Nan feeling better our odds are getting better. As you might imagine I am working very hard to get everything done, there is just so much to do and it seems everyone wants something. Yet it is good to have business and to be able to make money.
Tonight we are very thankful for the blessings of this day, the safety of miles traveled, the sweet homeowners I met today.
So we send our love to you tonight seeking Gods answers, His healing.


tim and nan

Tuesday, April 17, 2007

Complex day, restful outcome

Dear Friends and Family,
8 pm, going to blog now before I wake Nan for meds and up time. She has had a big day.

Last night I noticed she was shivering, sure enough headed for fever, all during the night it raged, from 101 to 102 and even this morning it was still there. So we started the day with more tylenol and after awhile it came back to normal. We noticed that the leg and foot began to respond to the antibiotics and the pain lessened. Nan was very sleepy during the evening, did not take her meds, just wanted to sleep and we discovered that the nephrostomy tube had started to leak again, this time from the actual insertion point, not the connection. So my first item of business this morning was to start calling the oncology office, then IR in Concord, they did the nephrostomy tube last week, then doctor office again and again, email Dr. Morgan in Boston to see if Nan could take Motrim as suggested by the oncologist, yes came back the answer within 5 minutes. Then the doctors office was on the phone, they had ordered the IR people to fix the nephrostomy and we should be there at 2:30, so a full day of work sort of went out the window but at least Nan was getting the help she needed. We decided to dress her in a Johnny (hospital gown) borrowed from UCSF and a robe. So we loaded her into the van, problem, her velour robe would not slide at all and to get her into the bed in the back she needs to slide, so off with the gown all the while holding her from falling out onto the garage floor, she gutted her way back to the proper place on the bed, covered with a blanket and we took off. On the way as we neared the hospital she threw up again, third time for the day. Then we were there, used the emergency doors which are much closer to the IR operating room, signed in and on time they wisked her away, once again I saw her form receeding down a hallway into misery. I used the waiting time to add many phone numbers to my phone that were in her phone, so look out folks, I have your number now. In about an hour here came Nan in her wheel chair. They could not find the leak at all but did several things to try to help it heal up. They tried a stitch but the skin was too weak to hold. So we have a nice heavy bandage over the site and another one over the connection point, new connections we can use when we go to bed so she can drain into a larger drain bag. Then we headed home and as we drove she got to talk to Sharon again filling her in on all the highpoints of the day, were there any? We stopped and got a cup of ice from Taco Bell and then again at Safeway, seems kitties want food. Then home to put a very tired precious lady to bed for a much deserved rest. Its now time to wake her and bring her down for a try at some food, any food will do at this point. The vomiting is triggered by almost anything right now. Either she is dehydrated a bit or the antibiotic is really causing her insides to be in an uproar, that is often the case with antibiotics and her GI. I tried and tried to persuade the doctors office to consider a transfusion but since the hemoglobin was good 10.2 on the cbc at their office they refused thinking she does not need one. Perhaps on friday we can persuade Dr. M to consider one over the weekend. At this point Nan has not given up on the cruise. She is fully aware that she may be too sick to go but we still have some time until the final decision has to be made.
I'm going to leave early in the morning to see properties, I cannot wait any longer and try to get back as early as I can to be with her. Loree has agreed to come help her make the move if she decides to come down from her bed. If anyone would have the time to come sit with Nan for a part of the day tomorrow it would be wonderful. If I find her to be weak or to have fever in the morning I won't go away to work at all.
We felt the warmth from hearing from Nikki and Jason today and from Mary and Pam. Dana too has called recently. These calls make a huge difference in nan's awareness and spirit. Well I hear her coughing so i think she is waking and its time for the next step in our drama.

Please continue to pray for God's guidance, healing, presence and will.

Love from our home to yours,

tim and nan

Monday, April 16, 2007

Another day, new challenges, clock is ticking

Dear Ones,
Its 8 pm on monday night. Like many other days this one has presented us with new challenges and suffering. After I rubbed Nan's feet last night they began to itch and then the pain started. Nothing she could think of lessened the pain and it was not until early this morning, about 5 am that she finally was able to go to sleep, just too much pain in her left foot and leg no matter what position or angle. I let her sleep until Terry came to make her visit, she was pretty clear that nan was suffering from infection in the foot and leg probably caused by the foot stick back in the hospital for a blood draw by atilla the hun. So while Terry was still here we contacted the oncology office and they fitted us into a 3 pm appointment. It took awhile to get nan dressed, to find clothes she can wear with all the extra fluid she is retaining. Then I turned the van back into a bed on wheels and Nan bravely walked out and climbed in. When we arrived at the dr. office the blood work from this mornings draw had not yet arrived so they did a CBC there to determine the basics. They said hemoglobin was 10.2, I doubt it but based on that there was no transfusion ordered. The doctor carefully examined the foot and determining that she needed antibiotics. Terry is bringing them this evening and every 12 hours Nan will receive the drugs through a push into her PICC line. I can only hope, pray and pray some more that the result will be less pain and more mobility.

We are at a point where I do not like to leave Nan for very long as she really can't move about on her own without being a risk. Yet I have several that are going to require me to be away for awhile. I hope we can work things out so someone who lives nearby can be on call if Nan needs some help. She is so brave and independent, hates to ask for any assistance.

I'm concerned about the extra fluids which are not going away and the distinct possiblility of Nan still getting dehydrated in spite of the fluids her body is carrying. Today the blood work showed a hemoglobin of 10.2 yet last thursday when we left the hospital it was 9.4. If this is a true number then it is wonderful but dehydration can also cause the hemoglobin to show wrong on blood test we have learned.

Nan does not feel well in general, she has thrown up at least twice today, tiny amounts but still it is not a good sign. So far no food in today, none at all. I have her drinking a little glass of cranberry juice right now and later, soon I will try to get some soup or toast or yogurt in so she can take her evening meds. It is hard to think about a week from now when we are to be on the cruise leaving San Francisco toward Mexico. Ultimately the decision to go or not go with have to be with Nan and how she feels. The antibiotic has now been delivered and we are to administer it for 7 days, every 12 hours. Have to sit it out 1 hour before pushing it in to get closer to room temperature.

So tonight Nan is resting on the couch slipping in and out of sleep with the TV on quietly in the background. I'm blogging early because I think we both need to get to bed on time tonight. I'm trying to not eat and lose weight for my thursday morning exam for a new life insurance policy. I had planned a big day today getting lots of things done and out but the health situation sort of changed our plans but I am so glad someone is addressing the redness and heat in her foot and leg, very scary stuff really.

Progress on the money front today. The bank cashed out two small IRSs and said we can deal with them on our tax form at tax time perhaps even claiming medical reasons for cashing them early. The kind lady from the bank called this afternoon and said she had deposited both into the account. We also received one check from a client who always pays promptly. It was enough to nearly cover the two house payments which Nan called in from her bed in the back of the van as we drove this afternoon. We are making progress with our immediate bills and its pretty amazing considering how far we were off last week. We are so thankful for God's blessings. Of course we don't have IRS covered or the dozens of medical bills and friday payroll but we are doing better for sure. It seems we are always short these days but I only work when I can and not leave Nan at risk.

Please, please pray for Nan this evening. I often wonder what will take place next. Just when we seem to make progress with one medical issue another pops up to challenge Nan. I can tell you that without you, her family and friends, life would be much tougher for Nan. She loves to find courage in calls she gets.

We are enjoying beautiful flowers that jason and jo brought on Sabbath. Jo always manages to pick the most original arrangements and this one is totally unique and so pretty. And the orchid is stunningly beautiful. Just seems like flowers, calls and rest keep Nan going.

I am praying that Nan will be able to sleep tonight without as much pain. She is so very tired right now.

Thanks for all you do,


Sunday, April 15, 2007

Its sure nice to be home again.

Dear Ones,
Its sunday evening and we are winding it back. Nan slept in until about 1:30 today. Then she came down to enjoy a quiet afternoon in first her chair and then the couch. We decided together to try on our own to fix the leaking nephrostomy tube. It has leaked ever since the surgery took place. We found a stray wire that should not be in the threads and it was there. So we decided to move it into the interior of the tube. Well that seems to have solved the leaking problem and Nan is very pleased about that.

I tackled the huge stack of envelopes that have been stacking up for months, they are now mostly in the trash and I am amazed at how many medical bills there are, from thousands to a few dollars, wow its quite a stack. I tried to arrange the bills in a way that I can see in advance what needs to be paid. I spent hours sorting and throwing things away. Finally I reached the bottom of the stack, what a relief. Then Nan was ready for food so we made potato soup with crackers, a couple olives, some triscuits and some candy from the Sees box. Then I set up Nan's TPN for the evening, hooked her up and rubbed her feet, however after I finished rubbing her feet they began to itch and they got worse and worse. Now she has fallen asleep for a bit in her chair with her feet straight up.

We have basked in the memories of yesterday, of having the kids here with us for the afternoon. It was a magic time, a good of being together. When parents get to interact with their adult children it is something very special. We are so grateful for them.

A new week is upon us now and we look forward to good things. However at this moment Nan is in misery with her foot again, came on suddenly and now it is really giving her grief. I hope she can make it up to the bedroom with this pain.

Tomorrow is coming and we sure need your continued prayers.

Sending our love,

tim and nan

Saturday, April 14, 2007

Sabbath evening, a good day with family

Dear Family and Friends,

Its getting late and we are settled in watching a great movie on Hallmark about a boy who lost his father and decided to enter a very long race with his dads team of dogs, 500 miles. We are early on in the movie but so far its good. Nan is sitting in her recliner, a beautiful fire is burning, Starr is next to me snoring. Soon I have to prepare the TPN for the evening.

Last evening Keanna came to have a sleep over and we had a really enjoyable time. She slept well but warm all night, in fact she slept till almost 8:30 this morning, then spend some time with Grammy getting dressed. We traveled to Tracy Sabbath School and enjoyed Kim who taught about lambs, shepherds and in crafts Keanna made a little lamb. On the way home she asked if we could hit the Burger King, she wanted to slide but also to try some lunch. She enjoyed playing with three children of a mexican family who spoke no english but she spoke fun just fine with the kids. Then home to see Grammy and Jason and Jo who had arrived from MBA. We spent the afternoon with Jason, Jo and Nikki who had come over to join the fun. We had a fire going and Nan had a good afternoon with the family. Finally Jason and Jo had to go back to MBA for an evening program and Nikki and Keanna headed home as well. Nan sent me to Safeway for a few things and then we made raviollis, green olives and cranberry juice. Another fire and we settled in for the evening.

The movie is getting real good now and I need to start the TPN now. A wound care nurse came to visit today and worked on the leaking nephrostomy tube, we hope she got it plugged up and stopped the leaking. When she came into the bedroom the perfume smell was so strong that Nan threw up. Nan asked her to wash her hands and get rid of the hand cream which she did but the smell remained in the room for a very long time. Why health care people don't understand the basics I will never understand.
The movie keeps getting better and better, its called Iron Will and its on Hallmark. A story of courage and determination.
Well its time to prepare that TPN and care for my wonderful Nan. Oh and yes we got two checks in the mail today, never enough but better than nothing also.
Tonight we seek your prayers that Nan will prosper and have another decent day tomorrow.

tim and nan

Friday, April 13, 2007

Friday evening and Keanna is here for a sleep over

Dear Family and Friends,

How I wish we could spend time with each of you. Keanna arrived at about 5:40 this evening for the first sleep over since Boston I think. She no longer uses the crib, sleeps in a big person bed and had a hard time settling in tonight. The 8 pm bedtime outlined by Nikki turned into 9:30 plus but I'm pretty sure she is very tired. I just went in and she was awake, sort of warm and asked me if I was checking on her, I told her yes and she seemed reassured. She was a very busy girl this evening and kept Nan entertained. Nan had a pretty good night after the fever went away and slept till about 10:30 this morning. She finally woke up and was ready to come down. We helped her get comfortable in her recliner, she had hot tea and watched some TV. Her left nephrostomy tube continues to leak so we called the IR people in concord and they agreed to supply a new bag. I drove over and picked two bags up, then back to Pittsburg to do a review of a quadruplex appraisal, then home. Loree was kind enough to come by and help her make a trip to the bathroom since I took so long away. LeAnn came and fed the fish and brought a beautiful iris flower from our side yard. I was startled to see it this morning growing away in a tub that I thought was totally dead. What a beautiful reminder of the Creators artistry. LeAnn cut one and brought it in so Nan could enjoy it, what a nice gesture. No one could find more caring neighbors than Ken and LeAnn.

Nan stayed up in her recliner until about 4 pm when we moved her back upstairs. She can walk but several times came close to falling today, so much fluid / weight on very weak limbs. She settled in and napped until about 7 this evening. Then she came down to enjoy Keanna, actually Keanna helped me wake her. Although I changed the nephrostomy line to a new one we are still having the same leaking problem. I noticed when I unscrewed the former line that a tiny wire was extending out of the opening on the value control and was in the threads of the leg bag tube. I was afraid to change and not have the wire there knowing that the little wire is all that keeps the tube locked into her kidney yet I have never seen the wire there, it usually is somewhere else, not in the threads, I think that is why we are having the leaking but I'm afraid to move the wire out of the threads in case they have it there on purpose. So we will leak a little longer until I can reach an IR person and clear it up. Otherwise we will track down an IR person on monday and have him or her repair the leaking. Fortunately it is not leaking from the place where the tube goes through her back, that would be a different story and much more difficult to repair.

Loree reports that we got three checks in the mail today, depending on what they were paying for that certainly helps us pay yet another bill or payroll check. We are truely living day to day and now question every purchase, I mean I was lecturing the dogs tonight to cut back on how much they eat since there is no extra money to buy dog food and besides it might kill them, I don't think they cared for the argument.

Nan has had hot mint tea this morning, a yogurt for lunch and a piece of toast this evening along with apple slices Keanna shared with her and some applesause that Keanna shared with her. She has much less pain this evening than last evening, no fevers and is doing better. After laying in a hospital bed for 3 weeks I think she is doing amazingly well. I am so proud of her, her attitude, her humor, her faith, her love for family and friends.

Art told me I might be able to cash in a small IRA from a local bank without penalty for medical reasons and we are looking into that. While I hate to do such a thing yet there are bills that have to be paid.

I am so thankful this evening for friends and family who stay involved in our lives even though we have little to offer right now than our great need. This has been a tough week, not the worst ever but certainly not one filled with happy moments and carefree living yet it is good to have the Sabbath hours surrounding us now. In the morning I will take Keanna to Sabbath School and then when we get back Jason and Jo will be here visiting mom. So we look forward to a wonderful day tomorrow and I hope Mom feels up to enjoying it fully.

Thank you to those who write emails or respond to the blog. Your comments often keep us going, they remind us of more important things than our immediate needs, they are very helpful.

So we send our heartfelt love tonight and our gratitude.


Tim and Nan

Thursday, April 12, 2007

Home again, we can hardly believe it.

Dear Family and Friends,
When I got in this morning Nan was smiling. Yes in spite of losing her breakfast over some huge pills she had to take she was delighted to be going home. When the discharge nurse came in and told her 9 am tomorrow morning nan said, no the doctor told me I could go today and I want to go today, so the process started at about 1 pm and we walked out about 4:45, well I mean we wheeled out. We had collected quite a bit of stuff so I took several loads out using the wheel chair. It felt good to stop at Burger King and get some coke icees.
Nan walked into the house on her own power and has been in the recliner with Starr from then to now, about 10:30. Terry came over to sign Nan up with the new company which took some time and to show me how to hook up the pump and do the TPN. She checked Nan out and found a small fever, 99.3 and a heart rate of 130. nan had been bundled under her heating blanket and I had the space heater pointed toward her so that may account for the fever. She is having really strong pains in her right foot again this evening and now has it elevated so high it just clears the ceiling fan, well not quite that high but close. We also found some very strong support hose and have them on her feet.
This morning Art drove all the way up from Gilroy to see Nan. He was there before I arrived and they were chatting, then Wes called and talked to both Nan and Art. Art and I went to lunch nearby and it was good to talk about things with a friend. Then back to the hospital to begin the packing process. Just before we left our dear nurse came in with a procrit shot and Nans other meds that could easily been forgotten. That was a nice touch.
I made Nan some asparagus soup this evening and cut up an apple for her. She is drinking water, has taken her pills and is now asleep I hope. I can hear her TV still one but she often falls asleep with the TV on. Starr and Lady are elated that Nan is home and can hardly believe it. I am also very grateful for God's healing, for His leading and for letting her get well enough to come home. Issues remain, at least 21 lbs of extra weight/fluid, extreme pain in her left food, slight leak somewhere in her left nephrostomy system and so it goes.
Both Nikki and Jason have checked in with their mom today keeping tabs on her progress. Tomorrow night Keanna comes for a sleep over and then perhaps to Sabbath School with papa. All depends on how nan is feeling.

We extend a special thank you to those who have responded to the blog or sent private messages during these three weeks, to those who sent flowers and candy, to those who called with messages of cheer, to those who visited her in the hospital, to those who prayed often for God's healing. Yes thank you for keeping nan in your hearts and prayers. This is one very brave and stubborn lady, the courage she demonstrates every day is amazing and inspiring. I love to see her, to speak to her in the morning and to say good night in the evening. Tonight I don't have to walk out the door after I say good night, its a blessed event.

We send our love,

tim and nan

Wednesday, April 11, 2007

Getting better, Nan rules

Dear Family and Friends,
Its about 9 pm and Nan and I are about to call it a day. She is watching our little TV again since the hospital system failed yesterday and they have not seen fit to have it repaired again. So Nan is watching CSI on a little 9 inch that normally sits on her desk at home.

This day started rough for both of us. When Nan called she had suffered through a night with little sleep and lots of foot and ankle pain. Breakfast was not awful but not terribly good either. She had a temp of 100 at the start of the day which was a bummer. At home I was trying to cope with the loss of the computer, trying to balance needing desperately to get work done and at the same time needing and wanting to be in the room with Nan, helping her deal with the doctors and nurses and their changing treatments. The enormity of the finance situation was looming over me and I had a rough time with it all. Art was very kind and thoughful and gave me needed encouragement on the phone. Then Jim called to say that he had solved the laptop problem, the power converter in the power line had failed but he had one I could use. That was the beginning of hope for the day, what a lift to know I could be with Nan and still work, that she could check out her emails and that we could move forward. Nan called again and sounded better, she had seen a doctor and there was talk of starting the process of going home.

When I arrived Nan was sleeping so I slipped in and set up the computer and started it up, yes it worked. Then a nurse came in and she woke up. Gradually she began to feel better and better during the day and just as I prepared to leave for work Mary walked in, perfect timing. What a day she had yesterday, family needed her and she didn't get home until early this morning. Mary was with Nan for a couple hours and they got to catch up on all the news.

During the day Dr. Rhone, kidney doctor, came in and we discussed creatins, low 2s, potassium 3.5 and too much fluid, she said she would prescribe some lasix, of course that has not happened since her blood pressure is too low to qualify for lasix and she can't walk far yet due to extreme pain in her left foot, yes there is a slight improvement but still she could only handle walking across the room to sit in the chair for awhile.

As I drove back this evening Nan told me that her dinner had arrived and the soup was great, tasty and she was enjoying it. Finally I was back after stopping at Staples to buy paper, we are so out of paper at the office that we can't even function. I've been holding off due to low funds.

Dr. Rhone and the oncology doctor have indicated that all of Nan's basic numbers are much better now. There is discussion now about Nan going home tomorrow or at the latest the next day, of course there is also the fact that there appears to be some leaking around the new nephrostomy site and if a repair is needed she would have to be transported back to concord for that repair, you never know whats next.

All in all a day that started rough ended up better. Nan has done a lot of catching up today sleep wise. Tonight she is more rested. Now we are about to change the incision wound which by the way is not harboring an abcess, the fluid drawn did not show up to be infectious. Other than one temp the vitals the rest of the day are normal.

We thank you for your intense prayers over the past night. Especially I want to thank Jim from INet computers for his help and prayers, to Pam for her supporting phone calls, to Art for his heart to heart talks, to my brother Jerry for his kind calls as well and thanks to Irene who called this morning and lifted Nan's spirits.

Thank you for your prayers for Nan tonight.

So we send our love and deep appreciation for your help.

tim and nan

Tuesday, April 10, 2007

Tuesday evening - tough day

Dear Family and Friends,
How can I begin to share what is on my heart this evening? Frankly I don't think I am capable of sharing the frustration, concerns, stress I am experiencing in its entirety.

Nan and I had agreed last evening that I would not travel to the hospital first this morning but start the day off at a home in Tracy at 8:30, then travel to SF, sunset district, then to San Anselmo and then to Kentfield. We had hoped that Mary would be able to be with Nan part of the day. Nan and I spoke frequently during the day so she knew where I was and how things were going. So it was after 6 this evening when I arrived in Antioch at the hospital. In some ways the day had gone well for Nan, no fevers, felt pretty good but in other ways it was a mess, this morning after she and the newest doctor on the oncology team had visited together and even discussed Nan's going home soon, the nurse came in a turned off the pain pump and took it away saying well since you are going home soon you will need to transfer to pain pills instead of the pump. That was such a huge blow to nan because for the first time in her hospital stay the pain was managed well with the pump and she had had some relief. So now she was to get a 4 mg pain pill every 4 hours, before the pump it was IV med and every 2 hours. Then the food trays came during the day and the food was once again really bad. She ate all her mashed potatoes at lunch and in the afternoon the dietitian came to visit and Nan was able to tell her the frustrations, but when dinner came it was a mess, Nan burst into tears and told the lady to take it away, she would not let me go get her food either, she had just had it with things plus her left foot was starting to be very painful.

When I arrived I found her sleeping so I slipped in and took a nap myself in the recliner. Later we decided to walk and putting her slipper on her foot caused a lot of pain, then when she tried to put weight on it the pain was too much and she could only walk a few steps to the recliner where she sat for awhile. Then the nurse came to take vitals and found a temp of 100.2. This was a blow since we know she cannot leave the hospital with a fever. So I gave her our own thermometer and that yielded 98.2. I found the nurse and asked her to use a different unit and that time she found a 97.8. When so much hangs on fever or no fever such mess ups become very important. Doctor decisions are made based on information that is very suspect. This is not the first time, yesterday the same, three different temps within a few minutes. Nan is recovering quickly from the nephrostomy tube surgery, quicker than in the past I believe.

When I opened the lap top to check emails for Nan and to begin to work I found it was dead, no amount of coaxing would make it wake up, that was a real blow as well since having it there lets me be with Nan and yet get my work done. So I left it on the front porch of my computer guy on the way home in hopes that he can get it to work again. What is next?

Nan and I had a rough evening as she was very agitated with the foot pain in spite of rubbing it gently. I know she is anxious to come home and I believe they are going to allow it in spite of the extra 21 lbs she is carrying right now of fluid.

The room is full of beauty, the flowers, candy, Easter basket, cards but we are really ready to move on home when it is safe and prudent. I'm sure the insurance company is ready for that as well.

Please pray for Nan tonight or tomorrow. We both tire of asking the same thing over and over yet it is what only God can help with. We face the health challenges for Nan and severe financial challenges facing us in the next 13 days or so. We are ticking off the things that have to be paid one by one and trusting the Lord to touch the hearts of our clients so they will pay up. I don't know of any time in our married life when we have faced such extreme challenges. One glimmer touched Nan today, Jo and Jason are coming to visit this weekend and that made her so happy. She loves family, we both got to talk to Keanna today and that is always a lift.

Thank you for caring,


tim and nan

Monday, April 09, 2007

After a very big day Nan is back, resting and hurting!

Dear Friends and Family,

At noon today transport knocked at the door and started the challenging process of moving Nan to Mt Diablo, Concord. I have included photos which sort of tell the story of her move. We arrived there and rolled to the CT scan room for the first procedure, drawing fluid from several points in her belly, then an hour later she was rolled out through the hall to yet another operating room where they removed the existing nephrostomy tube and created a new tunnel and installed a new tube. Each time I waited trying to make the time pass quickly. A kind older nurse came and found me after the second surgery and I was able to see Nan in the hall. The hospital called transport and they were already there, same team as brought her over in the first place. Excellent people, two emts and a registered nurse. Amazingly they were called in from Marin, many miles away but no other units were available. Nan was in terrible pain and told me quietly that she screamed a lot during the process. I told her that was fine, they needed to know how she was feeling. The whole process of being flat on her stomach causes incredible pain plus their poking and prodding.

When she got back to room 111 her temp was 97.5, she was shivering and freezing (I knew a fever was on its way), her heart rate was 151 and her blood pressure was 138 over 30. Nan asked for some quick pain meds and in spite of the low blood pressure they gave it to her. They also gave her two heated blankets, well you know where that would take her, so now the temp is 103 and she just got 650 mg of tylenol. Her feet are hurting terribly at the moment and she is trying to sleep but can only do so for a minute for a minute. She keeps having me gently rub her feet with lotion and now I have a cool cloth on her forehead trying to break the fever down. We took away the heated blanks and have just one blanket over her now. Its a tough evening, these are hard because she is pretty much out of her head with fever and I need to go over to Brentwood to pick up her Rapamune and then come back but I hate to leave her, I don't think Nan is alert enough to push the call button if she gets into trouble right now. So I'll wait until later to go.

When we got back today the TVs were once again working and the cable was restored so while she tries to sleep she has the TV on, sleeps better that way. And now this moment the tray just arrived with dinner but I doubt Nan is ready to try eating at this moment. Just so much pain and suffering.

I have included several photos from today and the beautiful flowers are from Shawn and Donna Want. Shawn helped build our present home in Discovery Bay and the prior one in Tracy and his mom has been a powerful prayer warrior for Nan since the surgery in Boston last June. The flowers and Sees candy were waiting for us when we got back from Concord, lovely arrangement.

Now its 6:50 and latest vitals look better, 100.1 temp, 136/56 blood pressure and 148 heart rate. We have turned in the right direction. She is resting better now with only occassional bouts of pain in her left foot and toe.

I have spoken to Mary late this afternoon and she says she can come to spend some time with Nan in the morning. I am set to see a house in Tracy at 8:30 in the morning, then on to SF and then to San Anselmo before returning to the hospital. These are appointments we put off from today once we knew for sure that the transfer and procedures were going to take place.

We are looking forward to hearing the results of the fluids they drew from the various pools in her body. We hope what happened today will result in rapid healing and a quick release from this lovely place.

Please keep Nan in your prayers this evening, she faces some real challenges in the next couple of days, lots of back pain from the new nephrostomy site, painful feet and a healing tummy from the needle sticks. When she smelled the food that came in she lost it so I had the soup and the rest went back, not very appealing on the best of days.

Now Nan is feeling better, resting more easily and I think she might like to take a phone call or two if you feel so inclined. We are relieved that this day went as well as it did and now we pray with our whole hearts that results will be positive.
Sending love, I may blog more later as the evening progresses.
tim and nan
ps thanks Shawn, Donna and family for the wonderful Sees and the beautiful flowers. Our room smells good, has lovely flowers and is a cheery place.