Rolling along

Dear Friends, Family and GISTers,
I read the messages from the blog to Nan tonight after I got home from work. She listened intently and chuckled and commented. They were good medicine for her on a very tough day. We spent the entire night last night working through a very nasty fever of 104.1 which we discovered about midnight. From there on we were up each 1/2 to full hour checking temps, making sure the ice bags were in contact, removing the sheet, taking Tylenol and praying for relief. Finally early this morning the temperature was normal again and we could really rest. I slept in until after 9 this morning knowing I would need the rest for the day. The fever being so high totally knocked Nan out for the day. She has been awake many times but for just a few minutes. She has had almost no pain meds today and only a couple hits of Adavan. I first knew she had a fever when I heard her talking about little boys around a campfire and then on to other subjects unrelated. When the fever goes up the lucidity goes away. I worked downstairs until about 3 when Loree was kind enough to come work at the office instead of at her lovely home office so she could hear if Nan needed help and I drove to San Jose to do an appraisal. Then comparables and then back home to mom. Traffic was decent and I got home about 6:30. Nan was starting a new fever at that point and so when I got settled in I started with liquid Tylenol, ice bags under the arms, tried to get the sheets away but they kept being returned to keep away the cool of the AC and started checking the temperature. For awhile it went up to 102.3 and then gradually, every so gradually it is slipping down to about 100.7 right now hours later. This one does not want to give up.
This morning as soon as offices opened I started trying to find out what had grown in the blood cultures taken on monday, the answer was nothing. There are no new infections going. So why the constant fevers? I starting asking questions and at first the doctors office said since there were no new infections then there could not be any new antibiotics. I talked to someone who was very sharp at the office and together we decided that we should give the same antibiotic that was given at the hospital when she was admited a try again. My reasoning was that after just 24 hours of the antibiotic she had no fevers for the next 4 days. So why not try it again and she agreed so in the middle of the afternoon Critical Care had a delivery at our door with the new antibiotic and more of the kind we are already using. We give this one every 6 hours day and night and it comes in a little baby bottle with a balloon inside. The medicine is in the balloon and when you hook it up to the picc line the pressure in the balloon pushes the medicine slowly out for the next 30 minutes and its done. Very clever indeed. So when I got home I did one immediatelly. Still the fever is going down slowly.
We also made a discovery about Sprycel. Terry, nurse, kept saying she thought the drug might be causing the fevers but Boston had said no, so I sent a second email to Dr. Morgan just to be safe asking about fevers. He replied that he did remember one patient who while on Sprycel did exibit fevers, then the pharmacist at Critical Care found an article about Sprycel and the second side effect was flu like symtoms which include fever. So are attaching Nan's fevers in two ways. We have stopped the Sprycel completely as of this morning and are trying a known antibiotic as well. It is my hope that by the time Jason and Jo come this weekend to see mom she can be fever free. I will say that I think the Sprycel has relieved some of the tumor caused pain as Nan is taking much less pain meds than at the hospital.
This caregiving business is pretty intense yet we have such a great group of people to rely on. I am often asked these days when the AMN will be available and as of yet we do not know that. On the web site, Liferaft.org, a web site for GISTers there is discussion of a couple other new trials taking place that hold excellent promise as well. We sure were glad to hear from fellow GISTers in the last couple of days, how we love Richard in Hilo, what a powerful spokesman for the disease and what a fine man he is. We have had lunch with him in Hilo several times over the past years and enjoyed every visit so much. The view of the ocean from his home is unbelieveable. We have appreciated the promises of prayers as well. We are aware that one has to careful about pushing any one religion on the web site since different people have different belief systems but on our blog we want God to be in charge and we love hearing that people are remembering Nan at this time in their prayers all over the world. She is touched by that and even though her mind is a fog part of the time that message came through clearly to her.
Loree once again demonstrated her loving concern today by working here so I could get out and see a property. Thank you Loree for doing that and for caring so carefully for Nan.

And now its time to rest and pray that the nasty fevers will not return tonight. As soon as nan falls completely asleep I plan to take her sheet away to get her temp down but she keeps waking up to check on me. Its hard to take away her sheet but its very effective in getting a high fever down quickly. We know from experience.

I am feeling much better, I am only dizzy when I move quickly or have my head down and then come up. I continue to have what feels like a solid center between my ears which can be painful if I work at it. I think Barb and Gerry are going to be able to come down on Tuesday and leave about Wednesday noon next week. That will help a lot.

So this has been a day of discovery regarding side effects of Sprycel and possible solutions in new antibiotics being applied. We are thank you for each of you, for your concern, your prayers, your help in so many ways.

Tonight we think of the Skau family. Paul, loving father, husband and church elder has died after being in a care home for some time. He will be remembered as one who was always searching for answers, who kept every magazine he ever read and for his love of the Lord and his family. He sure helped us many times over the years and he and Mary Alice have been wonderful friends for the past 30 years or so.

Good night my friends, please keep Nan in your prayers.

love

tim and nan
ps, Dana is home and enjoying her own bed, her family and the weather (rain). Thanks Dana for checking in on us.