day 1 at Duke

today we met Dr. Henry Friedman, one of the 3 brain cancer doctors here at duke and we met his PA Yung Kim.

after reviewing our history they wanted karen to do the Avastin with CPT - 11 option through their clinical trail (this means the avastin $11000.00 a pop would be free). then after looking over karen's last MRI, they came back and said they found blood on her brain which would cancel out the avastin.

this disturbs me 2 ways: first, at emory we were going to continue the avastin with the CPT - 11 added based on the same MRI they looked at today. emory either missed the blood which could have been fatal or duke's doctors are reading something into the MRI that emory doctors don't agree with. second, the avastin was to me one of the last straws that we had to fall back on. i am not sure if this disqualifies it all together, or if we can come back to it later if needed, but right now all we have are clinical trials.

so, the duke doctors want to start karen on a clinical trial involving the drugs DASATINIB and ERLOTINIB (wow they are as hard to type as to say). this is a phase one trail and as i read the information about it (http://clinicaltrials.gov/ct2/show/NCT000609999) i see it is a trail where there is no placebo and that has been going on since jan 2008 and has a possible end date of Jan 2010. it also shows that as this study goes on new people to enter will get the knowledge learned to this point considered into their dosages. they have given us a consent to participate (17 pages) form to read over tonight, and tomorrow at her appointment she needs to have decided to do it or look into other options. they said there may be other options but this looks to be the best to start with at this time.

what i do know is that these are 2 pills that are taken everyday at the same time about 2 hours apart. one can be with or without food and the other should be 1 to 2 hours after a meal. this sounds to me like the first should be taken before or after breakfast and then the next 2 hours later. there are several POSSIBLE side effects which include what seems to be the standards - nausea, weakness, diarrhea, rashes, and various others...they never tell you the chances or percentages of these happening. MRI's will come every 4 weeks for the first 3 months and then 8 weeks after that. we find out more tomorrow when we talk to the clinical trial dude here at duke.

tonight, we might try dinner and a movie, she deserves it!

arrived in Durham ready for Duke

From atlanta to durham is supposed to be a 6 and a half hour drive.

i was a little nervous leaving knowing that there would be restroom breaks where karen would have to walk in on her own in who knows what conditions.

after a two and a half traffic jam and 4 successful restroom breaks, we finally made it to our hotel. tensions were a little high at that point, but we settled in and had a good nights sleep.

hopefully duke u has something great for karen...that is my prayer.

even MORE blessings

today, my aunt worked on a bag that goes on the back of karen's wheel chair that will hold her walker as we move so we don't have too. i had an idea of ow to take a pillow case put some Velcro on it so that the pillow can be attached to the wheel chair handles, and then her walker goes into the pillow. it looks great. then our neighbor brought a bag that she made that attaches to her walker that can hold stuff like mail, a water bottle, a snack, or what ever small thing she needs to get from one place to another. it was just what we have been talking about and needed. as january comes and karen is becoming more independent, we are thinking of things she could use around especially the kitchen to help her. one project we are thinking about is a wheeled like cart/table that she can put a drink on, maybe a sandwich and chips that she can move from the fridge to the table safely. something may already be invented or we may build something, but we will be working on that soon.

continued blessings

you always find out what is really deep down in peoples hearts during times like this. we all know some people who offer to help but then don't come through when the time comes. with us though, we have found that the people we know that have offered have come through. baby sitting, house sitting, car pooling, and anything we have needed someone has offered and made good. for this duke trip we have had many offer to help in many ways from places to stay to travel vouchers and even discount for hotels. I cannot name all the people who have actually done something for us because the list would be too long, and i would forget someone and their feels would get hurt. let me just say a great big thanks to all of you and hope that i can repay you some how in the future. even in the cases where we either have not used the offer yet, or could not work out the details to get something done, thank you for even just thinking about us when you have some much in your lives. we say special prayers for you all, please keep praying for us.

thankful for sooo much

there is no way we can even come close to list ALL the things we are thankful in this house, but here are a few i just feel like i need to talk about...we are so thankful for lenette and dewey and how much they did for us in the last 3 month/20 years, thankful for all the Friends and family who have sent money for doctor bills and such, thankful for the friends who have offered to stay with them near Duke U to help us save money, and thankful for paul and georgia who are here to stay with us until the Christmas break. i am really thankful for all the prayers we have and are still getting, and i am thankful for everyday that this family is together. i hope you have as many things to be thankful for as we do...please keep praying.

Appointments at Duke

Duke U called today to tell us they have appointments for us on next Monday and Tuesday. It is a 2 day process minimum and maybe longer. we will drive up after church on sunday. hopefully we will leave there with the right answer for karen's tumor.

karen's parents have left

at 5 am this morning karen's parents left for arkansas.

i don't think they understand how much we or even i love them and how much help they have really been. karen's mom and i both have a hard exterior that comes from our childhoods, and sometimes we have a hard time showing how we feel.

there is a part of me that understands it was time for them to go and get done what they need to around their house and we needs some time without them, but we will miss them and understand that they will come back at a notice if we need them. more of me wishes they could stay.

we will have a few days to ourselves before my aunt and uncle get here. a different perspective of help than from meme and papa. i am not sure if i can do this alone and welcome all the help i can get.

i am not sure when i will post next, when there is news, so hopefully everyone reading this has a happy thanksgiving - there is so much i am thankful for and cannot even begin to thank everyone properly.

please keep praying.