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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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

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.

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

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

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.