Thursday, December 31, 2009

home alone

at 4pm eastern time today, my brother steve and his 4 kids left for their home in carlislie, arkansas. this marks the first real amount of time we (karen, kyler, jenna, and me) will have been home alone for any amount of time since Aug 20th. there was one monday after karen's parents left in November before my aunt and uncle came but we will have 3 days here before we go to duke for a 3 day appointment, and then a couple of days before a friend from arkansas comes and stays for a week. when she leave on 16th, she will be the last scheduled visitor/helper we will have. starting jan. 18th we will have to figure out things on our own again (like we have for the last 21 years). i am not sure if i will know how to act without these people here, but there is a side of me that understands we need some time to ourselves to figure it out. so many people are on the edge of their seats ready to help us, it is great to know there are so many willing and ready at a drop of a dime. this is good because i am not sure i could do this alone. feel free to call karen during the school week to talk to her, but call on her cell line it is cheaper for us.

Tuesday, December 29, 2009

today's events

today karen had the MRI that is going to determine if this treatment is working. things seem to be really good so i hope that is a good sign that things are working.

my brother steve and his 4 kids are here right now. karen feels safer using the "guest" bathroom for some reason. karen does not pay attention sometime to if the lid is down or not, and has not had to in a long time. the lid is normally up and the seat is normally down. someone put the lid down and she didn't notice that it was down...when she sat, she slide right off. she has a big bruise on her elbow, and her pride is hurt a little but i think everything is OK. the small thing you have to think about is almost overwhelming.

Jan 4th we take the MRI films with us to find out...pray please

Monday, December 28, 2009

no news to report

there is actually nothing to really to talk about today.

Sunday, December 27, 2009

wow

Thursday Dec 24th, I took my uncle paul to the emergency room here. he could not walk and by the time we got to the ER he could not even move his legs and the pain was almost unbearable. He had called the neurosurgeon that had done 2 surgeries on hi neck back in St Louis for advice. he told us to go to the ER and get an MRI. The ER doctor told us there were no symptoms to warrant an MRI, he could only treat him for pain (we could only guess that he thought the pain was the was causing the lack of motion even though we begged for and demanded an MRI...he said he just could not do it with the symptoms). My aunt Georgia was also coming down with some kind of cold and was not feeling well. we had a big discussion to either take my uncle to a different ER around here, or just get him home to st louis and let them take care of him. the final choice was for me to help get them back the STL. Georgia could drive but could not help Paul in anyway if he needed to get out of the car for any reason. i quickly called some people (Kim Chapman, Doyle and Bonnie Chapman, Lori Roark, Terri Tumlon, and Ester Baker) who gladly helped with Karen here while i drove to STL. My aunt and uncle bought me a one way ticket to fly back to Atlanta. So, just after opening presents on Christmas day, making sure that karen had her chemo and lunch, we drove to St. Luke's Hospital in south STL (10 hour drive) and arrived there at 9pm central time. by 4 am the ER doctor there had ordered an MRI which showed something at the base of his spinal chord that looked like a bulging disk, AND a growth around a kidney. a neurosurgeon was called in who did emergency surgery to remove the disk (8am) by noon the next day he was back in his room resting from the surgery...it should take a shot amount of time for him to get back his movement in his legs from rehab. the kidney thing is something they will have to deal with in the next few weeks. i flew back in to ATL 9pm last night and Coach Worsham picked me up and brought me home.

Steve my brother and his kids showed up at 3 am for a short visit this week

what a weird house i live in.

Wednesday, December 23, 2009

what is wrong with this house

karen and i were discussing in the car on the way home today from therapy, how people may not want to visit this house. karen's problems aside, my aunt has come down with laryngitis and a cough, while my uncle paul cannot move right now with lower back problems that we have no idea how or where it came from. so, we have nearly immobile karen, uncle paul in so much pain he is thinking about calling 911 and going to the ER, and a aunt who could not talk to you very well.

my aunt wants to make a reality TV show about us called "coach, Cancer, kids, and the people that stay with them" it might be funny.

maybe we are cursed!!

Tuesday, December 22, 2009

not so great day

karen has been very tired and and sluggish today. she has said her stomach has not been feeling so good. overall though not feeling well, no throwing up or diarrhea so i guess it could have been worse.

on a good note, we took family pictures on the McDonough square today in santa hats...i will try to post them here and on facebook as soon as i get them off the camera

Thursday, December 17, 2009

1st bad day

today was karen's first really bad day on the new chemo. she didn't feel well today and threw up her lunch. her left arm has a muscular lock up at the elbow joint, and it has been hard to message out. her rash looks terrible...jenna had a chorus concert tonight that my aunt and uncle took her to, i am staying home with karen to make sure she is good. they will video and take stills of her singing for us. hope

Tuesday, December 15, 2009

rash is not fun at all

the rash is on Karen's face very bad. it looks like the worst kid you ever saw with the worst achene ever. it is very itchy to karen, and she is not liking it at all. duke says it will be bad for about 2 weeks then it will get better but not go away (as long as she is on the chemo she will have the rash). hopefully this will pass fast and she will not be to uncomfortable the next few weeks.

Monday, December 14, 2009

rash

Well, they told us there was a 99.2% chance that karen would get a rash from one of the chemo types. we were given an antibiotic and cream for it when it started. it has started. it will cover her face and upper chest like achene. so, karens face looks very teenage-ish right now. so, now she has one more pill to take twice a day with all the others.

karen has it seems like a million pills to take but it is just 2 types of chemo's but they had to divvie up the dose to fit pills they had. it ends up being 25o mg or one and 175 mg of the other.

Thursday, December 10, 2009

24 hours in

two days worth of treatment and karen is doing great. so far no diarrhea or nausea. she does not even seem to be getting too tired, and after a full day of therapy, and Christmas shopping she is very, very talkative tonight...imagine that. i understand that she may get a little tired as things go and there is going to be a rash sometime soon, but if things stay close to what they are now i would be super happy.

Tuesday, December 8, 2009

tomorrow is the day

karen's new chemo pills arrived today and when i say pills i mean pills...there are 9 of them to take every day. i guess they only come in certain dosages so to get the correct amount they found away in 9 pills.

there is about a 100% chance that a rash will develop on her chest and face, but nothing crazy. there is a pill and cream for that when it comes. they told us that the nausea has not been a problem in most people, but that she may be tired after the pills.

jan 4th and 5th is our next visit to duke, and hopefully we will hear that everything is going great.

Monday, December 7, 2009

two steps

when i got home tonight karen was standing across the room, and demanded that i come to here. i did, and she wanted to walk without her walker. she grabbed my hand and started to walk with me. she was doing so good i told her to walk without holding me and she took 2 steps without me. it was so great to see and she was so happy. she told me she had done a few steps earlier with my uncle by her side, too. things are going so good, i cannot help but pray even harder that this chemo will be a long term answer not a short one.

Saturday, December 5, 2009

mrs independent

my aunt and uncle bought a kitchen cart for karen the other day. i will try to get some video to post here of this but this cart has helped karen be very independent. she leaves her walker where the cart is and then uses the cart as her balancing item. she then can get things from around the kitchen and take it to the table where she can fix it and eat or whatever she needs to do. she looks great doing this.

Wednesday, December 2, 2009

oh by the way

while we were at duke, my uncle pual and aunt georgia who are staying with us, along with the kids put up Christmas lights on the house and our tree. karen loves this kind of stuff and was very surprised and happy when we drove up.

just like karen's parent, they are doing a great job.

proud of her not of me

i was very nervous going into this trip to duke for alot of reasons but one main reason was the use of bathrooms on the way up there. when you are driving 6 to 9 hours there are going to be bathroom breaks, and i could not guarantee single restrooms where i could go in and help her...she would have to walk in herself and get everything done. i was always worried that the floors may be slick or the safety bars for handicapped access are on the wrong side, or some other problem would occur where she might get hurt in the process. well, i was very proud of her and how well she did. not one problem really to speak of. i am also reassured to the kindness of people in the world. in this day and age where people can be so nasty, we did not run into any nasty people but people who were very helpful.

on the other side of the coin i have been noticing over the last 3 months that i am not very good at my role in all this.

now the particulars about her treatments to start next wednesday. she is going to do the drugs from the last post. she will take them everyday. every 28 days we will travel to duke for a two day workup to check her progress. the pills will be mailed to us and she will have to do local blood lab work weekly and those results will be sent to duke. if the drugs do their job and control the tumor she could be on them for up to a year, but no longer (we were told that no chemo is every really given more than a year). both of these drugs are FDA approved for other types of Cancers, but this trial is to see how they work together, and on brain cancer. they have shown great things in the past, and seem to have been doing good in this trial so far.

last thing, i don't post some information that i am not sure if people want to hear about. things that you might be wondering about. if you have specific questions please ask, or if you want to hear more about other stuff, please ask.

Monday, November 30, 2009

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.

Saturday, November 28, 2009

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.

Thursday, November 26, 2009

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.

Monday, November 23, 2009

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.

Sunday, November 22, 2009

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.

Thursday, November 19, 2009

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.

Tuesday, November 17, 2009

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

Monday, November 16, 2009

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.

Thursday, November 12, 2009

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

Saturday, November 7, 2009

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.

Sunday, November 1, 2009

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.

Thursday, October 29, 2009

getting better

karen, her mom, and me are just sitting here talking about karen's physical therapy and how well she is doing with her walking. she is definitely getting better and stronger with that.

karen's mom and dad are leaving during the thanksgiving break and as soon as i can set it up with my family, my uncle paul and aunt georgia will come down and stay for awhile so we can evaluate her status for staying at home alone.

things seem to be going in the right direction. karen is getting stronger and she has not had a seizure in a few weeks. i just pray that the avastin is working like it should and this can take her through a couple of years until something better comes along.

Tuesday, October 27, 2009

2nd treatment

after her second treatment karen seems to be doing fine today. i will be on watch for any of the bad side effects they talk about that could happen. i am not really sure if i even need to look for them now, but will look for them.

just pray for her and that the treatment is working on controlling the tumor. in 2 weeks she will have the 3rd treatment, then a week after she will have an MRI. 2 days later we go in to find out if it is working. my nerves will be on edge until that day.

Sunday, October 25, 2009

plan and friends

the plan for this week is to continue physical therapy twice this week, and a visit to the chemo tuesday morning (1 hour treatment).

physical therapy will continue 2 or 3 time a week until further notice and she will have a 3rd treatment in 2 weeks. after the 3rd treatment she will have an MRI to determine if the Avastin is working. if it is she will continue treatments every 2 weeks for 30 minutes. i am sure they said she would have an MRI after every 3rd treatment from that point on to make sure it is continuing to work.

let me just say that what i think is a good sign so far is the lack of seizures. in the past when the tumor was growing the seizures were happening on a fairly consistent basis. this is only my opinion and continues to be my prayer.

many people have asked about visiting and thanksgiving. let me just say that even though we really love seeing everyone the toll that the visit take on karen and her mom seems to be very high. it might be better if you live more than 8 hours away to wait and see how the next two treatments go before visiting. the timing might be better.

also, even though karen's parents will be here for thanksgiving, we are not planning to cook or have a big thing. in fact it should be very low key with very little happening. karen would like it to be very slow and calm here that week. Karen's parents may try to go back to arkansas after that week too.

so what i might need is some who can come and stay for the weeks after thanksgiving until the Christmas break. i am hoping that my aunt and uncle Newby's can come for that 3 or 4 week time while i am working. during that time i will evaluate if karen will be able to be alone during the day after the Christmas break or if we need some assistance.

after Christmas possibilities: it may be that karen's parents might need to come back and be with us. this to me is a low possibility seeing how good karen is doing. what we are thinking is that we may need someone or a group of people who can stop by during the day to check on karen. i will use the weeks after thanksgiving to evaluate and if needed set up some kind of list of people to help. i may need to look into hiring someone if we cannot find volunteers for this. we will do what we can to help out karen's parents. they need to be able to go home after thanksgiving.

Wednesday, October 21, 2009

Visit with Karen

Hi everyone. It's Daren. Leslie and I were able to drive to Atlanta to see Karen over the weekend. It's the first time I have seen Karen since I left after her surgery. First, let me bring everyone up to speed on Karen in case you are a little fuzzy about her current condition since the surgery.

Most of you know that Karen was left with paralysis on her left side as a result of the surgery.As of today, Karen is using a "mini" walker as I call it, to get around. She regains more and more feeling in her leg and foot on her left side everyday. She attends rehab twice a week and they work on her leg and her arm. Her arm hasn't shown much improvement at all and it remains in a sling so it is not hanging at her side. She has to have help getting to the bathroom and doing all of the simple tasks we don't even think about when we do them. She still doesn't have any feeling in the left side of her face and it seems her sight has been affected on her left side, especially her peripheral vision. She will continue therapy until further notice and she has been focusing on her balance as of today at therapy. The goal is to be able to get to the bathroom by herself. First things first, right?

Now, as for the treatment. The plan was to start a clinical trial drug, but that option became unavailable. She has now started Avastin, the only FDA approved drug on the market for glioblastoma tumors. As Doug stated, this is not a cure, but will hopefully paralyze the tumor itself until a better option comes along while giving Karen a productive life. Obviously, this is not the best situation, but we'll take it and are thankful we still have Karen in our lives today.

As for the visit with Karen, I won't lie and say everything was wonderful. It's painful to watch Karen struggle with so many things like walking. After all, it's walking right? Not so!Thank the Lord for these miracles everyday of your life. I've realized now more than ever that these are not "little" things as we like to say. She is upbeat at times and gets really frustrated at other times. It brings a wide range of emotions to everyone talking to her or watching her at times. The trip was helpful for me in some ways, but even more worrisome in others. My mom is beaten down at the end of everyday and the physical toll this has had on her is noticeable. So, please continue to pray for Karen, my mom, my dad, Doug, Kyler, and Jenna and if you talk to any one of them, just encourage them to keep going forward and looking forward to tomorrow. Let them know that whatever they are feeling, it is normal and okay. Karen told me she just gets frustrated at times. I told her and mom that being mad is okay. You have to get that out of your system once in awhile.It's like the recent country song I used to hear on the radio, "I just wanna be mad for awhile" . Just tell them it's okay . Thanks for reading.

Tuesday, October 13, 2009

1st treatment over

first thing this morning we had to visit karens neuro-onocolgist. I am not sure why because all he did was remind us about all the bad things that can happen with the avastin. so, treatment went good. karen took a little one and a half hour nap while the avastin dripped in her IV while i read a book. now we just have to look for signs of bad side effects. i will just keep praying that this is the thing that will keep karen around for a long time to come. 2 week until the next treatment and then 2 weeks until the 3rd. at that point there will be an MRI that will tell us if it is working...

Monday, October 12, 2009

1st treatment in the morning

Karen must be at emory u tomorrow at 8am. they will do lab blood work then. 8:30 she must see euro-oncologist, why i am not sure but he wants to see her. then at 9 we will go down to start the treatment. they told me that there should be some large amount of paperwork to do first so not to expect to start the treatment at 9. hopefully it will start by 9:30. this first treatment is an hour and a half long IV drip. they tell us that they will give her a high dose of allergy meds first because some people have an allergic reaction to avastin. they also tell us that this should not make her sick or have any bad side effects. i will try to update this tomorrow as soon as i have time to get on the computer.

Sunday, October 11, 2009

family helping

karen's dad is back with us in GA. he was brought by karens aunt and uncle who are going to stay a day or two.

karen's mom has been the greatest help that we needed and could not have been without, and when her dad was here he too was great. now he will be here for awhile to help her. her aunt and uncle have spent today fixing and doing things for us. stuff that i just have had not had time to worry about and really may not have had the money to do. we can never thank them enough.

sometimes it is hard having so many people in your house doing things. it is crowded and it seems like i am in the way at my own house. what they are doing is great and i am very grateful. karen needs to visit with her family and it is great for her.

karen's first treatment is tuesday morning, please pray that it goes well and works on this tumor.

Saturday, October 10, 2009

up and down

let me say first that i am sorry that i cannot post every day. i wish i could. this week has been up and down. after spending the night in the hospital for the lung blood clots and talking to the emory people about it, one thing we learned was that brain surgery has a higher chance for developing blood clots. they also said that if karen had bad headaches that would not go away with the use of Tylenol to let them know it may be a clot in the brain. they also told us and i forgot somehow that because she was off her steroid for swelling that if these headaches came to get her back on that. karen kind of panicked when she started having headaches all day and because i forgot about the steroid we all were not sure what might happen and there looked like a chance that we were going back into the emergency room and hospital for a brain blood clot. the good news is after talking to the emery people they reminded us of the steroid and as soon as karen got back on it she has felt alot better and has become her chipper self again.

as i sit here today she is complaining that she is getting more feeling in her foot which then makes her want foot messages all day to help it feel better. she doesn't understand why we all wont stop and message her feet 24/7. hopefully she will feel this good all weekend and the first treatment will go great.

Monday, October 5, 2009

some better news

this morning we drove to emory u for karen's first treatment with full knowledge that we probably would not get to do the treatment. i was very worried that the blood thinner may set things way back. after talking to the PA for doctor voloschin she said we just need to wait a week to start the treatment. karen needed to be on the thinner and let it stabilize for 5 days or so. so, not knowing the exact date, either next monday or tuesday karen will have her first treatment.
i have now given karen 2 lovanox shots...i did not like this at all. i will do what i have to do and get it done, but it really hurts me to have to hurt karen.
karen has 2 therapy appointments this week, one thursday and one friday.

Sunday, October 4, 2009

major set back

saturday at 4am, karen woke up and we walked to the restroom and back to the bed. when back at the bed she was not breathing very well and was complaining about pain in her left rib area. even though i was somewhat sure this was not a heart attack, but i could not be that sure because of her left side numbness. after lynette and i talked we decided to call 911 and we went to the hospital where we found out karen had a blod clot in both lungs. she stayed over night and came home today on blood thinners. the problem with this is that for the avastin treatments cannot be done while there is any blood thinner in her system. i am not sure if she can EVER star the avastin because of this. tomorrow is going to be a big day for me as i try to figure out what is next and if we now have to search nation and world wide for help.

Tuesday, September 29, 2009

treatment news

today we found out that there are not any clinical trials open right now (i am not sure if they meant anywhere or i think it just meant at emory). so, karens only option at emory is to go with the Avastin. just to remind anyone who is reading. Avastin is the only FDA approved drug for brain tumors. it has what they call a 40% success rate in those who use it. she will go for 3 treatments starting next monday and one every other monday for 2 more. then she will have an MRI to see if it is working. this is not a cure but a control of the tumor. as long as the tumor is not growing it is working. what does this really mean. as far as i have read and what i get from the doctors that translate into my mind, is that this is something that may work for many years to come, but in a reality will only work for 1 or 2 years. so, in the mean time i am looking hard at other treatments that may be out there or clinical trials that may be about to open. i am thankful for the Avastin (even 2 years ago there was not even this), but my family wants and prays for more. so we are praying that the avastin can be a long term answer that gets us to better treatments.

if there is something you don't understand, don't be afraid to ask...others may have the same question. if there is something you NEED me to know, let me know ASAP.

thanks for all the prayers and if you talk to lynette tell her how good she is doing, but don't tell her i said anything.

Saturday, September 26, 2009

MRI done

This morning we went to emory and karen got through the MRI without pain.

Monday karen will start her out patient physical therapy.
Tuesday we go to emory to find out when and what treatment she starts.
Wednesday karen has an appointment for an AFO(?) a brace like thing for her left foot that will aid in her walking.

Karens walking is better and better every day. her mom and i still walk with her but when i am with her i do nothing at all.

her left arm is just not coming back very much at all. hopefully the therapy will help that move along faster.

please continue to pray for her and the cancer treatment to work.

Wednesday, September 23, 2009

MRI

today was not a great day. karen has had many (20+) MRI's over the past 5 years without problems. today 35 minutes into the 50 minute event her right (good leg) hip started hurting to a point that she could not stay still. she must have this MRI before treatments can start. we now must set something up before next tuesdays appointment and get it done if she can.

please, please continue to pray.

the warden

karen has been calling her mom lynette the "warden!" this is because she make karen work hard as they do her exercises at home. she keeps karen going and also has been working hard to keep the house up to specks. lynette is doing a great job here. as a football coach i do what i can do to make the pay check and be home as soon as i can, but there are just some things lynette has had to do and take over for karen. taxi, maid, and helping make sure karen is keeping up around the house. out patient therapy starts monday, and we should know when cancer treatment starts tuesday.

please keep praying.

Sunday, September 20, 2009

home the family is together

karen is home now for a full 24 hours. her first night in her own bed was great. debbie her cousin and her friend jamie came from arkansas for the day. it was a good but short visit for karen. they ended up taking dewey (karen's dad) home with them. he needed to get back to the farm and take care of what they needed done. even though people have been helping them out by looking after the farm, he needed to get back. he will see karen at thankgiving when we travel back. karen's mom is staying until thanksgiving to help. we need it and she has been great. not to mention karen's dad fixed a hole in our selling while he was here. again what a great help they have been.

i will try to post some limo pictures of karen coming home soon.

this week karen has an MRI and next week we schedule the treatment for the cancer.

Saturday, September 19, 2009

today karen goes home

as usual it seems to be hurry up and wait. we are soooo ready to get home, but we have to wait on the nurses to finish their paperwork, the therapists to finish their paperwork, and the doctor to get here and sign off on it all. i think we all know that sometimes doctors move at their own speed no matter how badly we want to go. so it is about 11AM our time and it looks as if 12:30 to 1:30 is when we will be able to leave.

the booster club president at my school has offered and we have accepted for him to provide a limo he owns to pick karen up. she will be going home in style. pictures will follow.

please continue to pray for the cancer treatment to be a success and for karen to be with us for 40+ years to come.

Thursday, September 17, 2009

thinking of you

i have been sitting here with karen night after night as soon as i can. she always amazes me with her thought of you. yes i mean you, all of you. she is constantly asking me about people she knows especially those of you who are also having some issue. "how is she, i need to call them, have you found out, we need to do something for, and we need to pray for" are all things coming out of her mouth constantly. no matter how much i beg her to not worry about other things right now and just concentrate on herself for once and beating everything in front of her, she just continues to think about everyone else. daren is right when he basically said there is hardly a person that has ever stood next to karen who didn't get to know her or was not her friend instantly for life. karen thinks of every one of you daily or weekly. i cannot think of anyone who has not been blessed to know karen even if they did not return the blessing back on her.

please, please, please continue to pray for her.

Wednesday, September 16, 2009

going home saturday

i left a note to her doctor here at the rehab telling him that i wanted karen discharged by saturday...she needs to be home with her family, and i spend the entire tuesday helping her and doing what needed to be done. so, she needed to be home...he agreed and is discharging her saturday. i don't know what time yet but we cannot wait. kyler and jenna are very very happy that mom is coming home, along with me.

Support is Unbelievable

UNBELIEVABLE!!! This is the word that keeps popping into my head and keeps coming out of my mouth since Karen found out that our fears are once again a reality. I say this not because of the fact that the tumor is back and it consumes my daily thoughts that Karen will have to go through this dreaded process again, but instead because of the support that all of you have shown during this time.

As Karen's brother, I would take her place without hesitation just as she would want to do the same for me. This is just how it is when you have a close family. I don't think or at least I didn't think anyone else could feel worse or care for Karen as much as we do. I have to apologize to all of you for my perception. I am completely wrong! There have been so many people call or ask about Karen and constantly remind Doug and I that they are praying for her or they have put her on a prayer list at their church that it is truly unbelievable!! I hope you all know how much this means to all of us and please don't stop because it is as inspirational as Karen's attitude. Every time I talk to Doug, I ask him are the kids okay? He says fine. I ask if he is okay. Of course he says fine. I ask if Karen is okay and of course he says she is better than he is. But the thing we have talked about is the support that everyone has given them. It makes him feel better and I know from talking with Karen nightly that it makes her feel better. She always tells me of someone that has called or about the piles of cards she has received and she tells me she just can't believe it. She told me the other night about the donations they received from several people and groups both here in Arkansas and Georgia and she just didn't understand it. Again, what she told me was unbelievable. I thought that because of the money we raised the last time around that it would primarily be up to mom, dad, and myself this time to help them through the financial hardships that come along with this. Your donations have made this burden easier to share. She honestly felt like she should give it back. Doug and I have told her repeatedly that it is a true and honest reflection of her and how people feel about her. Has anyone ever met her for 15 minutes and not felt like they know her? Has anyone ever gotten her to quit talking for 15 minutes might be the better question? My point is that I am as shocked as Karen sometimes and just say to myself "unbelievable". This whole scenario is unbelievable, but you guys make it easier to take on. So again thank you and I don't think you will ever understand how much all of you guys mean to our family unless you have dealt with a similar situation.

Tuesday, September 15, 2009

fight of her life

well, today we had a very long day. Dr. Voloschin, the neuro-oncologist was the first visit. he confirmed that karen's tumor is now the worse type of tumor a person can get. when he said something about the prognosis not being good, karen asked what that meant. he said that most people only have about 14 months with this. tears were shed by both of us. we were reminded though that there are new things being developed as we speak. right away the fighter in karen came through and she inspired me one more time. she vowed to fight this for 20+ years. at this point Dr V explained how the 2 clinical trails out there and the other drug avastin how they kind worked so that we could choose the direction we wanted to start. avastin is an FDA approved drug for tumors (brain tumors just 2 months ago). it works by causing your body to stop making blood vessels, which cuts off the food supply to the tumor, which then starves to death. the problems with avastin is that it can cause bleeding or blood clots, or even death in very few cases. this seems to be the last choice drug of both doctors we talked to. the two clinical trial drugs have been showing really great things at emory U. the best sounding one to me the surgeon Dr. Olsen called it MLN after the company that first owned it millennium. the name is to hard to pronounce. it is much like avastin without the harsh side effects. it cuts off the blood, too. the other trail comes at the tumor from a different direction but is even newer and only a few people have used it. the side effects are limited but as the doctor put it, it is soooo new they are not even sure what all the side effects may be...true Ginni pigs are the people trying this.

what is next: well karens has an MRI next wednesday to make sure the tumor is progressing in a way that makes the trails the best way to go. then we see the oncologist a week from that to make the final decision and start treatments. they cannot start until then anyway, she has to be 100% healed from the surgery for any of the 3 choices. the avastin would e an IV drip, but the other 2 could be pill or IV drip.

karen is so inspirational to me. everywhere we were today she was making people laugh and putting smiles on their faces. talking to them about anything and everything. mind set on beating this with only 1 second of doubt. she makes me feel good to be around her.

oh by the way i explained to kyler and jenna that this is bad, and that we all need to be warriors for mom...i think they understood and will be the great kids they always have been. they too amaze me at how great they are, and how i might not deserve such great kids. they seem to be good.

Monday, September 14, 2009

the night before

tomorrow morning we go to emory to talk to the neuro-oncologist about karens future cancer treatment. i am very nervous and anxious at the same time. we have not talked about how karen is feeling but she seems to be OK right now so i am not really bringing anything up because i want her to have a good night sleep. i really don't think i will sleep well but its not about me right now. i will update tomorrow night what we learn.

please pray for great treatment options and a long future for karen with us all.

Sunday, September 13, 2009

tickle

every once in-a-while karen has me help her take off or put on her non-slide socks. when i do this i always tickle her feet to see how she reacts. yesterday when i tickled her left foot, she laughed and said stop. i asked her if it tickled and she said that it did. this is the first time she really has been able to tell i was tickling her and not just touching her. baby steps every day as progress.

tuesday we visit the onocologist to see about future cancer treatment.

Saturday, September 12, 2009

karen's parents

As i sit here with karen on this saturday night, watching football on tv. i cannot help think about how great karen's parents have been taking karens place. they have mentioned that they have forgot how much work being the kids taxi can be. karen being a football coaches wife has always known that football season is a time of the year where she is like a single parent. now, i think her parents have a little respect for what she does during this time of the year. they are even doing alot more than normal because the few times i would be there to do stuff, now i am at the hospital with karen. so, they are even picking up my slack. they are doing such a great job for us. so, if you call and talk to them let them know that they are doing a great job. thanks

Thursday, September 10, 2009

new information

i just talked to someone in charge of updating the family about progress here at the rehab.

right now she said the goal is to discharge karen at the end of next week. her progress has been good enough, and they said her attitude is the best.

we also discussed about how we would trasport karen to the oncologist, and made sure that was set up and ready. i was not sure that this place understood how important this appointment was to us, but i think we are all clear on the matter and it is set up.

sorry about the late posts

i am sorry that i have not been able to post the last few days.

karen did FINALLY get her stitches out. she will get to have her first real shower tomorrow morning, and she is really looking forward to that.

her right leg has been a little sore from all the therapy but she is fighting through it.

every thing on the left side is coming back very very slowly and certainly not fast enough for us, but again karen's attitude has been great. i am sure i could not do what she is doing.

she or even we are getting a little cranky, and that is more just from not being home...she wants to be home and we (including the kids and everyone) want her home bad, too.

please keep praying for her...next tuesday we are going to talk to the oncologist about the future treatment of the cancer.

Monday, September 7, 2009

tomorrow

Karen's stitches come out tomorrow, but we will not be able to see the surgeon. hopefully i will get a picture of her head to post.

her next appointment is a week from tomorrow with the oncologist to see the direction he wants to go and hopefully have a starting date for all of it.

Sunday, September 6, 2009

Sunday

hello everyone:

Sunday night and i am just arriving at the hospital after church and football pregame planning.

Karen had the day off from therapy. she has had many visitors today and she enjoyed all of them. she definitely has liked the candy, fruit, and flowers people have sent.

She will have her sutures taken out tuesday and then we will see her neuro-oncologist the next tuesday after that to discuss the future treatment of the cancer.

the therapy lead doctor meets with all the therapists on wednesday to evaluate the patients. they should let us know if and when karen will be able to go home.

Saturday, September 5, 2009


hey:
it is saturday afternoon and i am up at the hospital with karen. things are getting better but very very slowly. when hey get karen up to walk she gets a brace on her left ankle that keeps her foot and toes up so that they do not drag behind. this helps her put her foot flat on the floor as she moves it forward. she uses what i would call a fancy cane (picture on lef tof karen walking in to see jenna and kyler today) on the right side. it is a cane with 4 legs at the bottom of a box like frame. still just a cane though. her therapist stands to her left to insure her balance is good because if she fell now she really would have near nothing to stop her self with.

she will have her stitches out on tuesday. there is a chance we will talk to at least one doctor about the future of the cancer treatment, but she has another appointment on tuesday the 15th to really finalize what her neuro-oncologist wants to do (at emory). we still plan to meet with the duke u oncologist as soon as we can but have not even talked to them about appointments yet.

again karen would love to talk to you or for you to even visit if you can but don't be surprised if she is very tired and may cut it short. the room number again is 770 909 2316

Wednesday, September 2, 2009

Karen's Address

Hi everyone. It's Wednesday night and I'm filling in for Doug tonight. This was his first day back at work and and he was just getting in the car leaving practice as of 9:30 EST. He has of course been to the rehab to see Karen today during down time, but we all know that the bills must be paid unfortunately. I talked to Karen and she told me that of course everything was going great. She said she walked up and down the hall which totals about 120' and all other therapies went good. Then, I called Doug to get his opinion which I knew would be more objective. He is good with the way things are going, but admits that he is too impatient which is understandable. The therapist told them it could take 8 to 10 wks. for all movement or limited movement to come back. Apparently, there hasn't been much improvement as far as any more tingling or sensations in her muscles in a couple of days, but that doesn't mean there won't be in the future. The bigger muscles will come back first and the fingers and toes will be last and this appears to be happening with Karen. She can move her hip and is beginning to push with her shoulder. When I said she was walking, I meant with a walker that is off to her side somehow. It is different than a standard walker if I understand Karen's description right. They keep her busy most of the day and she is very tired at the end of the day. Doug seems to think it might take two to three weeks before they let her go home. After that he figures they will want to do some in house thing where they come to their house for therapy. Either way, it seems they have a ways to go not even considering the treatment she will undergo later. She will meet with her doctor Tuesday. I'm not sure about the time. It's really awesome to see the comments here and facebook and the phone calls to Karen are really appreciated and I know Karen enjoys that. Please keep them coming in because it really keeps everyones spirits high and it does give off a sense of empowerment knowing everyone is praying and pulling together for Karen's recovery.

On that note, I talked with Doug and asked him if it would be appropriate to post their address for anyone that wanted to send Karen or Doug or the kids for that matter a little note of encouragement. So if you're one of those people here it is:

Doug, Karen, Kyler, or Jenna Means
108 Cole Walk
McDonough, GA 30253

Tuesday, September 1, 2009

people have been asking

many have asked what is next for the cancer, and i have not had alot to say. we are waiting for the pathology report to come back. it should be back any minute, but now that we have moved it may take a little effort to get the answer. we do know that karen will get her stitches out tuesday the 8th and then we will See dr. volochin tuesday the 15th. on both occasions we will talk about the next steps and their opinions. we will also be getting in touch with duke U soon to see when we can get over there and get their opinion.

please keep praying, and thanks so much for EVERYTHING everyone has done so far.

walking

I got a call in the room from the nurses desk through the room call button. it was a little startling but i answered and the nurse called me down to the station. there karen and her therapist were waiting. karen wanted me to see her walk, and what was an immediate shock to me was that there was not the elaborate walking thingy bopper she had at emory. there was just this fancy four legged cane on her right, and a ace type bandage around her left foot and calf holding her toes up. karen stood up and started walking down the hall very slowly. the therapist was right by her side holding on for balance and to make sure she didn't fall but for the most part she was walking with nothing but that cane. it was awesome, and the joy in karen's face was priceless to me. she wants to do so well and be out of here.

occupational therapy is at 1.

first night without anyone

last night was karens first night without either her mom or me staying with her. it was very hard for me to know that no one was with her, but it is the way it has to be to help her get out of rehab as fast as possible. the rehab people show us studies that show that family members cause rehab to last longer than it needs to...family help the patient too much and it interferes with the patent's ability to do for themselves faster. so, we are going to do our best to help motivate karen to get out as fast as possible, which means following the instructions at all times.

karen looks great this morning. she was in regular clothes and sitting in her wheel chair when i got here. she just got done with speech therapy. even though we don't think she needs it the rehab center has to do it or the government will not give them their funding.

karen and every patient MUST have 3 hours a day (15 hours a week) of therapy. 1 hour is speech, 1 hour is physical, and 1 hour is occupational therapy. The rehab place also want their patients out of bed as much as possible. so even when karen has free time she is encouraged to be up in a chair or in the wheel chair moving around the hall, reading, or whatever. its was very nice seeing her chipper self in regular clothes up when i cam in. soon after she moved herself off to physical therapy. family are not allowed to go to the therapy except for sessions where they teach us what we need to do wen the patient is at home.

i wanted to be here for this first day to make sure i was as comfortable with how things work here as karen is. unfortunatly for both of us, in order for us to pay the bills i must go back to work tomorrow.

i will try to post something later after all session of therapy to let eveyone know how today went.

Monday, August 31, 2009

she has moved

Karen just arrived at southern regional, and is in room 316. the phone number is 770-909-2316, and visitor hours are from 9 am to 9 pm.

hopefully she will not be here for long.

Please keep praying for her.

Karen is Moving today

The works are on going, and i do not know exactly what time she is, but she will be moving to Southern Regional Hospital. The 3rd floor there is a full time rehab center and she will get her own room. this will cut or drive in about half.

as soon as i get a room number and phone number for there i will post it.

visiting hours are from 9am - 9pm.

Monday Morning

9:00AM monday morning and the physical therapist was just here. she had karen up out of bed and in the hall way walking. she took about 10 steps with a little help from the therapist and a big walking frame walker dealie bopper thingy. they really don't want me to help at all and that is very frustrating for me, but i cannot even imagine how frustrating it must be for karen or anyone with paralysis to be going through this. she has great spirits and the right attitude. after all she comes from a long line of great talkers and great attitudes.
we should hear from a therapy coordinator/social worker today to see about her moving to a rehab/physical therapy full time facility. i will update as soon as we know anything about that.

Sunday, August 30, 2009

Sunday Night

It is Sunday night here at emory. No physical therapy this weekend, but karen's left leg is moving a little more today. She had a couple of nurses help her get into the chair and sit for a while...reading. she has been told to sit for at least a couple of hours while here (or more). Karen also didn't sleep very much today. i take this as a good sign, but she is very tired now at 8 PM. Hopefully tomorrow we will find out when she will be moving to the full time rehab/physical therapy facility and which one. The left hand still has not shown much improvement.

Don't be surprised if you call that Karen keeps the conversation short. the hand she has to hold the phone with is on the same side as the brain surgery, and the phone bothers her after a few minutes.

Saturday, August 29, 2009

Saturday Morning

Saturday morning is here and Karen slept alot better last night. She is ready to get out of the hospital, and really wants to go home. We both understand that 2 or 3 weeks in a physical therapy apartment will be better for her and the family. She is ready to start it so she can get home faster.

Many have asked about future treatment of the cancer. we have not talked to any doctors about the pathology or the direction she will go. we just know that whatever the next step is, it cannot even start for 4 or 5 weeks after the surgery for proper healing. some of the possible treatments inhibit self healing in some way, so all healing from the surgery must be complete.

Call if you want to talk to karen, me, or her parents. room # 404 712 3234

Friday, August 28, 2009

Phone Number for Karen's Room

Just talked to my mom and she told me that anybody can reach Karen at her room by calling 404-712-3234. She has been up all day and doing fine. She is recieving therapy three hours a day. Her movement is improving and they have been using some type of a stimulator on her muscles which helps her alot. She will be moving out of the hospital Monday or Tuesday to another hospital closer to her house. She will be placed in the rehab section for two weeks where she will recieve more therapy. My mom said Karen would of course be happy to talk to anyone that wanted to call. Don't be afraid to call her because she will not mind.

Just thought I would mention for those looking for the donation stuff that the paypal link is at the top of this blog and the account is open at the Bank of America . For information on the account, read the very first blog and it will give you the details or you can email me at dspurlock@pgtc.com.

Thursday, August 27, 2009

new room finally

karen has been moved out of ICU to a regular room: G234. Apparently i only get spurattic cell service in this room only when i stand in the window on two chairs piled on top of each other holding a metal rod in my left hand andthe phone on my foot...that's the only way.

Email

I hope these posts have been helpful for everyone. Thanks Doug for keeping up with this blog. Just wanted to let you guys know that you should see a little envelope underneath the posts. If you click on this icon, you should be allowed to send the post to someone via email if you need to fill someone in or just copy the link to this blog for them. If this isn't working, comment and let me know and I will try to fix it. Thanks to everyone for all of the thoughts and prayers. It helps all of us a ton.

tid-bit

it seems that emory is doing such good business that there is not even one room open. this may mean that there are too many sick people keeping this place in the money, but as the doctor said, it creates a bigger problem. there are several people like karen really ready to move to a regular room out of ICU, but can't and there are several people that are having to put off their surgery because there is no ICU rooms to go into. i cannot imagine being one of those families waiting for an important surgery and being told they can't do it this week because the hospital is full and there are no rooms. i hope there is a plan B for emory and where they can put poeple...maybe crawford long?

2nd round of therapy

11:00am and a different therapist worked with karen. it looks as if she is going to get an hour a day from a physical therapist and then 1 hour with an occupational therapist (i wonder what the difference is) and her student. so 2 to 3 hours a day of therapy for the next 3 weeks. it looked great. she is moving her left leg alot, but is still only having that feeling like her leg and arm are asleep. she is not quite moving her arm but there is something there.

the therapist had her sit up and even stand up (with alot of help). karen is still a little dizzy, but again who wouldn't be with brain surgery. every time is a good improvement and it really makes me feel alot better.

continuing to improve

9:30 am karen and i are having a nice little talk about the other people she is worried about...she is just that way not really even thinking about herself but friends that need her prayers and great attitude. she looks sooo much better even this morning. just a little more feeling on the left and the swelling on her heads right side is down so she can open her eye and see with both eyes.

they have not moved her into a regular room yet, and as far as we can tell it is because there just are not any empty rooms. they are saying she will get a room as soon as they can find her one. But they are also saying that she may go home friday or saturday.

if you have any questions call or post here.

Wednesday, August 26, 2009

physical therapy

this after noon (26th) was karens first meeting with the physical therapists. Karen had a new student being trained by a a therapist teacher. they were both very nice. the good news is that even though karen cannot move her left arm and leg, the therapists could feel her muscles tightening against their resistance. also, the left side of her face is showing much improvement. where she could not smile or her tongue moved to the right because her left muscles were not working...now her full smile is back and her tongue is great.

i know that many people all over the world have to deal with paralysis every day. if karen has some permanent loss of function we will deal with that too. I think is can say though that no one wants to have to deal with it, but you do what you have to do. I have at least one other hero other than karen and that is Kristi Justice (sorry if this is spelled this wrong) and bonnie. they have dealt and made more with a bad situation than i think i could. karen has been and will be a great wife for much longer and we will deal with what ever use or non-use she has, but i think the relief that i felt just knowing that her muscles were working some what made me and karen feel soooooo much better. i am not sure what use she will get back but we will work and make the best of it that we can.

now, to just kill out the rest of that stink'n tumor. it cannot happen fast enough for me but the doctors reminded me something they told use 2 or 3 weeks ago, and that was that they can't even start any of the options out there until she has healed for at least 4 weeks. i am trying not to be patient, but this is the one time in my life i feel i am not being very patient.

please keep praying for everyone you know who needs it, including karen please!

Dr. Olsen just in

Dr. Olsen just came in and said that the hospital was looking for a room to move her in and that is when the physical therapy would start. he is still confident that the loss of movement is temporary and that with therapy and time she will get the movement back. he also said that she would only be in the hospital a couple of more days after she leaves ICU. As for her swollen shut eye...he said tomorrow should be the worst day, and that once the therapist gets her standing up and moving, that should help her eye as much as anything. I cannot say enough about how great her parents and brother are, i am tearing up just thinking about them.

Please remember i and karen don't mind talking to you. there are just so many asking for calls that i cannot get it done. it is easier if you call us. if she is sleeping or tired i will talk to you. 770 289 2413 is my cell number.

Also, several have asked how the kids are...they seem to be great, but you can tell they are concerned. karen felt that jenna was scared to look at her after she first saw her.

Morning of the 26th

Doug here. They are telling us that they will move karen to a regular room and that it could be any minute. also, that she will start some physical therapy sometime today...karen told me she met the therapist and she was very nice. when they did her test this morning to evaluate her left side, it seems as if she is feeling more but still cannot move her left leg or arm. they also noticed that her left eye was not moving all the way to look to the left. she is feeling better. if you have any questions please ask, i am not sure if i am giving enough information or if there is something you might want to know.

Tuesday, August 25, 2009

New PayPal Account for Karen

One more thing tonight. Someone told me I could make donations to Karen's account easier if I did it throught PayPal. So, I did this for the folks who have PayPal accounts or don't want to go to the bank. Once the money has been sent, it will tie into the account set up in Karen's name at the bank. The email address you need to type in is dspurlock@pgtc.com. If you have any questions on this use that same email and ask away. I hope this will make the process easier. if you need a PayPal account just click on this link https://www.paypal.com/.

Tuesday Night the 25th

I talked to my mom a little while ago and she said Karen was doing fine. She was allowed to eat some solid food. Her right eye is now swollen shut, but she seems to be getting a little more feeling on her left side. She will have to stay in ICU tomorrow. We don't know if that is a result of something that was shown on the MRI this morning or not. The doctor will be in around 6:30 am Wednesday. The surgeon came by this morning and evaluated Karen and he seemed please with her recovery. He still thinks her left side will come back around and that is why he said all along that he would be cautious during surgery as to not do any permanent damage. A physical therapist will visit Karen in the morning as well to start trying to get things working again. I'll keep you posted tomorrow. It might be in the evening after I leave work or Doug might post. Thanks for the prayers again. Keep em coming.


Finally, in response to those of you who have asked how they can help or have offered money, I have opened a donation fund in Karen's name at the Bank of America. I chose this bank because there are some here and some in Georgia for those of you there. Please don't think I'm begging for money. I simply did it in response to those of you who have asked about it. I do know as many of you do, that no one can prepare for the financial burden that any medical condition can present to your family. Even with good insurance! There will be many tanks of gas used for doctors visits and all of the miscellaneous or "little things" that aren't covered by insurance. She will get paid for some of her time off, but not all of it. Again, Karen needs prayers more than anything and we will deal with the bills later. If you are one of the people wanting to donate, you will have to go to your nearest Bank of America and tell them you would like to make a donation to the Karen Means Medical Fund Established in Arkansas. Sorry I could not make this Internet accessible, but the bank will not let you give any info about the account over the internet such as Facebook or My Space.

Doug will be posting soon

OK. I just talked with Doug and he is trying to figure out how to post to this blog. It was a little tricky on how to let him be an author as well. I'll let him fill you in on all the details, but he did say she was okay and had a little more feeling on her left side. I just made it home from the longest drive of my life. Thank the Lord for the radio and a cold air conditioner.

I wanted to mention again for those of you that asked about the donation that you can go to a Bank of America anywhere in the U.S. Tell them you want to make a donation to the Karen Means Medical Trust Established in Arkansas. Sorry for the inconvenience.