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.

duke it is

after as long as a talk as we could have and input from o few other sources, karen has decided to try duke u.

we have everything in motion and i have been in contact with Dr. Henry Friedman at duke. he said he would get his people on setting things up and that we needed to get our end going.

dr voloschin's PA at Emory has already faxed karen's reports to duke (upwards towards about 55+ pages. she has also requested that her pathology slides be sent (this usually take about 5 days to get there).

i have requested an MRI cd be made and sent also (this by regular mail should take 3 to 5 days).

we cannot get an appointment until all is at duke for them to review, but when dr friedman's PA called me today to say that she is on it and that as soon as she gets it all she will contact me about the appointment that could be as early as next tuesday. she did say that holidays sometimes mess up the scheduling, but we have about a 14 day window that we need to get in to and they seem to be working to get us in as fast as possible.

on a side note, karen's parents are leaving on sunday morning to go back to arkansas. this will be a very sad day. there is absolutely no way we could have made it this far without them. they need to get home and get things in order there. they may come back sooner than later, but hopefully after Christmas karen won't need anyone with her. we will see. i cannot lie and say that it sometimes can be hard to have people living in your house that are set in their ways, and we in ours, but we made it through and needed them.

we will not be alone though. my aunt georgia and uncle pual are coming down to stay until they want to leave somewhere in the Christmas break.

who knows what the future holds for all of us, please continue to pray for karen and the kids.

not so great news

today at school i received a call from karen. emory called and wanted us to come in right away this morning to talk about the MRI instead of waiting for the appointment tomorrow. i don't care who you are that can't be good news.

when there, the doctor told us that the MRI showed that there was some areas of the tumor that the avastin was working on, but there was other parts that had some new growth meaning the avsitn is not working there. he said this was a concern because usually when the avastin works well and for a long time there is no new growth.

so, what he wanted to do is add a chemo drug to the avastin treatments. he explained that when avastin was first going through its clinical trails it was first done in conjunction with this chemo drug CPT-11 (for short, it has a long fancy doctor name). when it came time to FDA approve the avastin the stats showed that the CPT-11 on average did not effect the outcome in any way. this means that for some people it helped alot and for other it did not help at all. so the avastin was approved without the CPT-11.

if we choose to do this the side effects may be nausea and diarrhea, but the avastin may not still work and the tumor may still grow.

i brought up the chances of clinical trails. emory has none right now but he looked into one at duke u. that is testing and avastin like drug called XL-184. this is a drug given in pill form. it is a clinical trial that has shown alot of great promise, but is still just a trail. emory said they would help us look into the trail if we choose to do that.

at 8pm tuesday night we have to decide what direction we should go. this has to be done by sometime tomorrow morning.

i am very confused

the decisive MRI today

today karen had THE decisive MRI. this is the MRI that will tell the doctors if the avastin treatment is working. the doctor reads all his films late tuesdays. we visit him at 8:30am wednesday to find out if it has been working (working means controlling the size or no growth). today before we went in we said one last prayer before the MRI but will continue to pray until the doctor walks in on us wednesday. i can say even though i have put this in Gods hands, i am very nervous. karen seems a little bit nervous too. she did not sleep very good last night and i know i will not sleep tonight or tomorrow night.

we thank everyone for the prayers, and ask for as many more as we can get.

3rd treatment down, now waiting

tuesday karen did her 3rd treatment. karen's dad took her and everything went well. she seems to be doing great. she has not had a seizure in the treatment time. monday we go to have an MRI. then wednesday we go to the doctor so he can tell us if the treatment is working. i have been praying very hard for it to be working and we have heard about so many people on avastin doing well.

thanks to everyone who has been continuing to pray for her, please keep it up

kyler's soccer party

tonight we went to kyler's end of the year soccer party. it was at the home of the team mom's. this was one of the first times we have been out to do something social. there were 5 stairs to go up to get into the house...this was her first time at anything over 1 step. she did great in and then out after. walking around the house with her walker was great too. i think we are all getting a little more comfortable with karen walking on her own around our house and tonight i was with her but really only helped up and down those stairs.

her 3rd treatment is tuesday, please pray for her.

on her own

for the last few days Karen's has been walking through out the house on her own. little things we take for granted that her mom, dad and i have been helping her with - getting around, dressing and redressing herself are things we have been helping her with but that she has now been doing on her won. all are important as for the future especially after Christmas when we may not have a full time person here.

karen's parents are going back to arkansas either monday or tuesday of the thanksgiving week. i am sure that they want to leave now but know how much we need them until then. i have an aunt and uncle who will be staying with us from then until Christmas. during this time we will be evaluating what should be the best way of moving forward with karen at home after Christmas.

i am sure karen will be able to stay home but we will want people to stop by and check on her on a daily basis. we have had some volunteers already for this, and i know we will need more so that there can be some type of rotation so that people can continue to have their time and be able to help too.