Not a report I want to give
cindysuetoyou
Member Posts: 513
I've put off posting for a while, and now there is so much going on that I feel overwhelmed to write about all of it.
I am up at OHSU and I don't think we are going home any time soon. But I need to back up a little.
I posted on here when David got his puppy. I think it was Dec. 7th. In that post, I mentioned that David was "off." Well, he gradually became more and more "off." I called the dr the day before he was scheduled to be admitted for the BBBD (he was admitted on 12/14) and I told the receptionist that I wanted to talk to someone about David's odd behaviors and how he was not talking very much. The drs were all in clinic doing BBBDs and checking on surgery patients. They were supposed to call me back but they never did. I figured it was because they were going to see us the next day when they did the BBBD on David.
So when we checked in on Wed. night, I told one of the BBBD team members (a neurologist) about my concerns when she was doing evening rounds. She did all the neurological checks and of course David did them all really great. The next am, I told the BBBD team about David's behaviors, esp. how he "freezes" up and can't move--did I mention that in my post? He gets stuck and can't complete a task, like getting dressed, brushing his teeth, etc. Anyway, they instantly said, "Seizures." I didn't think so…but what do I know? If they were seizures, he was having an awful lot of multiple seizures every day.
Now I wonder...should I have said (insisted) that maybe we need to postpone the BBBD treatment and see what is up with David?
I am going to jump ahead because I'm too heartsick to write a lot. When David was finished with the BBBD treatments and he finally came fully out from under all the sedation, it became very obvious that something is seriously wrong. The doctors do not know what happened. It's not a stroke, not a blood clot. David couldn't stick his tongue out, couldn't swallow, (he can stick his tongue out now, and he can swallow off and on), but he can barely talk and he can't do much of anything. Can't use his phone, can barely feed himself, can't answer even yes and no questions some of the time. He has spells where he drools. I cannot even begin to describe the way I feel when I see him drooling. Like an actual physical knife is in my heart. He is totally aware of his condition. That makes it even more heartbreaking, I think. He has spells where he is better and can swallow and answer questions, using sentences with maybe 3 or 4 words. The nurses describe his issues as "transient."
They had a swallow therapist, an occupational therapist, and a physical therapist all work with David today. He walked around the hospital wing, but barely. He had to use a walker, and a therapist walked right behind him and kept her hands on his hips to keep him steady.
I had a talk with David in order to encourage him. I told him him that I am thinking that....this stinks. STINKS STINKS STINKS. But he has fought hard, valiantly, courageously, and uncomplainingly since the day he was diagnosed. Now this is a setback that we didn't expect and do not want....but we will go forward from this point on. Even if we go forward with baby steps to start out with. David can do therapy-type exercises just like he does his stretching and yoga exercises every day, and we can take therapy walks with his little puppy Jackson. Recovery will take some hard work, but David is a hard, determined worker, and we can do this. He needs a little time to recover from these treatments so it's okay that he is tired and discouraged right now, and we will be sure that he gets lots of rest, good food, and TONS of TLC from mommie dearest and all of his family and friends, and then we will start working really hard to recover. The occupational therapist said that David will have days like the weather...some good and sunny days, and some rainy, not so good days. But the weather one day does not mean that the weather the next day will be the same. I like that analogy. Our wonderful, amazing family---well, part of it---came up today and spent some time with me and David in the hospital. Such awesome, priceless therapy! We talked about crazy Christmas traditions, like cutting down your own tree in the pouring cold rain and mud---such a fun tradition--and just laughed and joked around about different things. My sister, niece and I walked down to the cafeteria and got David a nice dinner so he could have a break from the usual items on the hospital menu. David ate a good dinner---salmon, rice, potatoes, even a slice of his cousin's pizza. He was eyeing his sister's Starbucks, so she gave him her drink, and he really enjoyed it. He was smiling and he would make one or two word comments. He even chuckled once. He is totally aware of what is going on. I also read a wonderful, just-for-us Scripture to David that my sister wrote down for us: "I am the Lord your God Who takes hold of your right hand and says to you, "Do not fear. I will help you." Isaiah 41:13. How incredibly perfect is that? I told David that it's our verse now, and we both wept. Just a little. We're okay now.
Before my family left, we all prayed for David. My niece Tammy prayed for me…for strength and rest. David started to weep. It broke my heart. Even in his condition, even in his situation, his grief and concern are for me. What an amazing man…what an amazing son.
I forgot to mention…the MRI they did right before the BBBD showed some swelling in his brain. They said it made it hard to read the MRI but they are fairly sure that there has been some slight reduction in his tumor. That's good. But I think David's participation in the BBBD clinical will be seriously reconsidered. I think this treatment could literally kill him. It's very disappointing because we all thought (including the doctors) that he would tolerate it well, since he is young and was in such great shape.
When David is released from the hospital, he will need to come home with me. There's no way, unless there's an incredible, miraculous recovery, that he can be left alone. The reality, even before this procedure, is that he probably should not have been living alone for the last two weeks. I just could not take that away from him. But now we really don't have a choice. He can't even walk to the bathroom by himself. We took this approach…he will stay with us and I will take care of his puppy so he doesn't have to take it out at night to go potty. I will cook him whatever he wants, and he can hang out with his dad and brother and watch football and just kick back for a few days or maybe a week or two, and then we will go from there. We are not planning and acting like this will be a permanent move. We will continue to rent his apartment for as long as David wants us to. No permanent decisions will be made. It's far too early for that. We will work hard, pray hard, and hope for the best.
I'm sick with grief but there is so much at stake here. I MUST be strong and believe that David can recover. I do believe it.
My poor husband who has been a solid rock this whole time is just crushed. He is heartbroken and devastated. I feel bad for him, alone in Salem, grieving. I wish I could be there for him, but all that I have to give is going to David. I'll have time later to pour out attention and love on my husband….at least, I pray that I will time. I have a fear that he will have a heart attack or something. His father and uncle both died of heart attacks at 57. I just can't take that worry on right now.....
I have been watching csn to hear how everyone's Dec. MRIs turn out. Julia, did your sister have hers on the 14th? I am hoping and praying that everyone has great news to report.
Love and blessings, always,
Cindy (stuck) in Portland, OR
PS I didn't mention the long nights we've had here in the hospital when David was doing so bad and the nurses were calling Dr. N back into the hospital the middle of the night to see David. I could see the obvious concern and sorrow in Dr. N's face, and in the non-dog nurse's face. They really feel bad....I knew they really did care about David, but it's touching to see how much they are worrying and caring about him in this situation.
I am up at OHSU and I don't think we are going home any time soon. But I need to back up a little.
I posted on here when David got his puppy. I think it was Dec. 7th. In that post, I mentioned that David was "off." Well, he gradually became more and more "off." I called the dr the day before he was scheduled to be admitted for the BBBD (he was admitted on 12/14) and I told the receptionist that I wanted to talk to someone about David's odd behaviors and how he was not talking very much. The drs were all in clinic doing BBBDs and checking on surgery patients. They were supposed to call me back but they never did. I figured it was because they were going to see us the next day when they did the BBBD on David.
So when we checked in on Wed. night, I told one of the BBBD team members (a neurologist) about my concerns when she was doing evening rounds. She did all the neurological checks and of course David did them all really great. The next am, I told the BBBD team about David's behaviors, esp. how he "freezes" up and can't move--did I mention that in my post? He gets stuck and can't complete a task, like getting dressed, brushing his teeth, etc. Anyway, they instantly said, "Seizures." I didn't think so…but what do I know? If they were seizures, he was having an awful lot of multiple seizures every day.
Now I wonder...should I have said (insisted) that maybe we need to postpone the BBBD treatment and see what is up with David?
I am going to jump ahead because I'm too heartsick to write a lot. When David was finished with the BBBD treatments and he finally came fully out from under all the sedation, it became very obvious that something is seriously wrong. The doctors do not know what happened. It's not a stroke, not a blood clot. David couldn't stick his tongue out, couldn't swallow, (he can stick his tongue out now, and he can swallow off and on), but he can barely talk and he can't do much of anything. Can't use his phone, can barely feed himself, can't answer even yes and no questions some of the time. He has spells where he drools. I cannot even begin to describe the way I feel when I see him drooling. Like an actual physical knife is in my heart. He is totally aware of his condition. That makes it even more heartbreaking, I think. He has spells where he is better and can swallow and answer questions, using sentences with maybe 3 or 4 words. The nurses describe his issues as "transient."
They had a swallow therapist, an occupational therapist, and a physical therapist all work with David today. He walked around the hospital wing, but barely. He had to use a walker, and a therapist walked right behind him and kept her hands on his hips to keep him steady.
I had a talk with David in order to encourage him. I told him him that I am thinking that....this stinks. STINKS STINKS STINKS. But he has fought hard, valiantly, courageously, and uncomplainingly since the day he was diagnosed. Now this is a setback that we didn't expect and do not want....but we will go forward from this point on. Even if we go forward with baby steps to start out with. David can do therapy-type exercises just like he does his stretching and yoga exercises every day, and we can take therapy walks with his little puppy Jackson. Recovery will take some hard work, but David is a hard, determined worker, and we can do this. He needs a little time to recover from these treatments so it's okay that he is tired and discouraged right now, and we will be sure that he gets lots of rest, good food, and TONS of TLC from mommie dearest and all of his family and friends, and then we will start working really hard to recover. The occupational therapist said that David will have days like the weather...some good and sunny days, and some rainy, not so good days. But the weather one day does not mean that the weather the next day will be the same. I like that analogy. Our wonderful, amazing family---well, part of it---came up today and spent some time with me and David in the hospital. Such awesome, priceless therapy! We talked about crazy Christmas traditions, like cutting down your own tree in the pouring cold rain and mud---such a fun tradition--and just laughed and joked around about different things. My sister, niece and I walked down to the cafeteria and got David a nice dinner so he could have a break from the usual items on the hospital menu. David ate a good dinner---salmon, rice, potatoes, even a slice of his cousin's pizza. He was eyeing his sister's Starbucks, so she gave him her drink, and he really enjoyed it. He was smiling and he would make one or two word comments. He even chuckled once. He is totally aware of what is going on. I also read a wonderful, just-for-us Scripture to David that my sister wrote down for us: "I am the Lord your God Who takes hold of your right hand and says to you, "Do not fear. I will help you." Isaiah 41:13. How incredibly perfect is that? I told David that it's our verse now, and we both wept. Just a little. We're okay now.
Before my family left, we all prayed for David. My niece Tammy prayed for me…for strength and rest. David started to weep. It broke my heart. Even in his condition, even in his situation, his grief and concern are for me. What an amazing man…what an amazing son.
I forgot to mention…the MRI they did right before the BBBD showed some swelling in his brain. They said it made it hard to read the MRI but they are fairly sure that there has been some slight reduction in his tumor. That's good. But I think David's participation in the BBBD clinical will be seriously reconsidered. I think this treatment could literally kill him. It's very disappointing because we all thought (including the doctors) that he would tolerate it well, since he is young and was in such great shape.
When David is released from the hospital, he will need to come home with me. There's no way, unless there's an incredible, miraculous recovery, that he can be left alone. The reality, even before this procedure, is that he probably should not have been living alone for the last two weeks. I just could not take that away from him. But now we really don't have a choice. He can't even walk to the bathroom by himself. We took this approach…he will stay with us and I will take care of his puppy so he doesn't have to take it out at night to go potty. I will cook him whatever he wants, and he can hang out with his dad and brother and watch football and just kick back for a few days or maybe a week or two, and then we will go from there. We are not planning and acting like this will be a permanent move. We will continue to rent his apartment for as long as David wants us to. No permanent decisions will be made. It's far too early for that. We will work hard, pray hard, and hope for the best.
I'm sick with grief but there is so much at stake here. I MUST be strong and believe that David can recover. I do believe it.
My poor husband who has been a solid rock this whole time is just crushed. He is heartbroken and devastated. I feel bad for him, alone in Salem, grieving. I wish I could be there for him, but all that I have to give is going to David. I'll have time later to pour out attention and love on my husband….at least, I pray that I will time. I have a fear that he will have a heart attack or something. His father and uncle both died of heart attacks at 57. I just can't take that worry on right now.....
I have been watching csn to hear how everyone's Dec. MRIs turn out. Julia, did your sister have hers on the 14th? I am hoping and praying that everyone has great news to report.
Love and blessings, always,
Cindy (stuck) in Portland, OR
PS I didn't mention the long nights we've had here in the hospital when David was doing so bad and the nurses were calling Dr. N back into the hospital the middle of the night to see David. I could see the obvious concern and sorrow in Dr. N's face, and in the non-dog nurse's face. They really feel bad....I knew they really did care about David, but it's touching to see how much they are worrying and caring about him in this situation.
0
Comments
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I drove for a long time
I read your post at work as I was finishing my shift. I took the long way home. This is not the news that I wanted about David. Your descriptions haunt me. Especially when you told me he cannot swallow. Poor poor David! He already has suffered so much! I am barely able to read your emails.
You said that the MRI is a bit better, so the tumor growth has been halted. But meanwhile he seems to have a rapid decline during december. What is his neurologist saying? Did they give you an explanation? A solution? Or they don't know? I am not a neurologist but I was wondering 1) is he on steroids? Should he be on steroids? 2) at Duke, they had suggested that my sister be on Adderall if she ever felt that her concentration was "foggy" after radiation (she and I decided against it because she has been ok without it ) 3) you say that he is "freezing" and that the neurologist are saying "seizures": then has he had another EEG? Should they change his seizure meds if this really what is going on? Or maybe he is freezing because of something else... like his medication list or it is a direct result of the BBBD. Is there anything the neurologist can give him to reverse those effects? I feel like I want to scream at your whole team. I want to scream at is this monster tumor. At this sick sick twist of faith that took your happiness, David's and your husbands. Like it took mine and my sister's.
My sister's MRI was better than the other one. So it looks like we are getting a respite after being through hell. But I don't feel comfortable waiting. I need to continue searching and searching for a cure. That is my only purpose in life.
My love to you and your family. Please write often.
Julia0 -
David and Cindy
You are in my thoughts and Prayers! Cindy I know how it is to grieve for my family that has to watch me go through this. David sounds like a great son, and I know just from what I have read about you throughout your posts that you are a WONDERFUL Mother! I am so glad that his tumor has a slight reduction, at least that is a positive note!I hate reading about the relapses, or complications, but I am so glad to have everyone on here to talk to. It is the strange thing about having AA3, the fact that I worry more about My Daddy and Husband than myself. My Father, like you, is by my side through anything I have to do! He has already went through this with my Mother who had Stage 4 Brain Cancer and passed away in 1984. Medicine has come along way since then, but he too has heart problems and his Dad died of a heart attack in his 40's. I really worry about him all the time!I have had a clean MRI for two years, and I go back on January 18th for my 3 month follow up. I will continue to keep your family in my prayers!!
I am glad that David will get to come home with you so that he can enjoy those football games with his Dad and Brother! Just in time for the Bowl Games!! Hope you guys have the Best Christmas Ever!
God Bless You!!!0
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