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.
Thursday, October 29, 2009
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.
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.
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.
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.
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.
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.
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.
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