What a positive day!
First and foremost, mom finally had a talk with the neuro-oncologist. She said that dad's prognosis is excellent. And in fact, she says that there is no visible tumor left and chemo at this point is unnecessary. She won't even see him until he is discharged from rehab, then they will start to monitor him via MRI, and then chemo will come into play if they see anything crop up in the future. For now, the tumor is (was) exactly the same as it was 20 years ago, and it is non-aggressive, and slow-growing. The docs say that they are here to "wait on the sidelines" until they are needed. Dr. Oncologist also believes he will rehab quickly. And, importantly, his current "hazy" condition is still due to the length of the status epilepticus and he will recover from it. This is the best possible news we could hope for. (Interesting though that another doc had eluded that the tumor had "crossed surgical margins" and was aggressive.....now we know that is not the case.)
Tomorrow he is being transported to the new rehab hospital. Yipee! Out of BNI! Now that's progress!
This evening they put in the new feeding tube. Mom also mentioned that his swelling is much better and he looks more like his regular self. He talked to Carolyn on the phone today, which I'm sure lifted his spirits.
Oh, and as a side note, Dr. Oncologist also told mom that there is an excellent, top-notch doc here in Dallas that is her counterpart and can pick up on his care whenever they get moved out here. Another great discovery.
(I'm still doing a little jig around the living room, I'm so excited!)
-Darcy
Friday, August 31, 2007
Thursday, August 30, 2007
Thursday
Today was a good day all around.
After much physical therapy, dad had a shower. Seems so menial, something we all take for granted, but it's a simple act that can help make someone feel so much better. He had a good shave and mom gave him a little "foo foo." Mom said he's talking more and reading a lot. I talked to him again and he seemed a little refreshed and positive. Better than yesterday.
Tomorrow morning he will have the procedure to place the feeding tube (percutaneous endoscopic gastrostomy - PEG) directly through his abdomen. His swallowing reflex is still not adequate.
The cardio doc paid him a visit and said things cardio-wise continue to look positive.
The rehab hospital closer to mom and dad's is sending someone out to evaluate dad to see if he's a candidate for their facility. Otherwise, he'll stay where he is and mom will have to keep puttin' miles on the ol' Saturn.
We've found a gem amidst the tight-lipped, poor-communicating docs that we've dealt with so far. These are the terms mom and Jen use to describe dad's latest speech therapist:
After much physical therapy, dad had a shower. Seems so menial, something we all take for granted, but it's a simple act that can help make someone feel so much better. He had a good shave and mom gave him a little "foo foo." Mom said he's talking more and reading a lot. I talked to him again and he seemed a little refreshed and positive. Better than yesterday.
Tomorrow morning he will have the procedure to place the feeding tube (percutaneous endoscopic gastrostomy - PEG) directly through his abdomen. His swallowing reflex is still not adequate.
The cardio doc paid him a visit and said things cardio-wise continue to look positive.
The rehab hospital closer to mom and dad's is sending someone out to evaluate dad to see if he's a candidate for their facility. Otherwise, he'll stay where he is and mom will have to keep puttin' miles on the ol' Saturn.
We've found a gem amidst the tight-lipped, poor-communicating docs that we've dealt with so far. These are the terms mom and Jen use to describe dad's latest speech therapist:
- "Very nice"
- "Very reassuring"
- "Everything you would want in a doctor"
- "I want to go into therapy with her myself"
Although dad still has to go through a battery of assessments, Dr. Wonderful Speech Therapist said she thinks he will rehabilitate quickly. (Is it appropriate to hug your doctor?) And this is the best part: She moved to Phoenix last year from.....(drumroll)....Heath, TX. That's right, my new hometown. Since mom and dad still want to try to move out here, she was able to give her good information about doctors, hospitals and facilities for dad. She even gave mom her personal email, and recommended a hair salon for me, which happens to be about 1 mile from my house. Ah, serendipity. Or perhaps divine intervention.
On a closing note, one visiting doctor, aiming to assess dad's memory, asked him, "Who is the President of the United States?"
To which dad replied.....
"Unfortunately, George W. Bush."
Get a good belly laugh, ya'll!
Wednesday, August 29, 2007
Wednesday
We've made contact! (Well Dad and I at least, the doctors still seem to be MIA.)
Today Jenny facilitated my first phone conversation with dad. It felt wonderful to hear his voice, however raspy and weak it may be. He asked, "How's my granddaughter doing?" and when I asked him if he missed me, he said, "You bet," quite emphatically I might note. He also mentioned that he was happy to get an email from Bob Baker. And he thanked me for keeping on top of his email. I'm naturally a "daddy approval-seeker," so it felt good to know that he appreciated this. It would be dishonest of me to say that he sounded great and just like his old self. So in a sense it was difficult to talk to him, but, as I discussed with mom, it's important to remember that he is still in recovery mode and he's going to get better, even if it's a long haul.
[Caveat: I'm sure it's apparent and understood, but any feelings we have that lean towards being scared or sad about dad's situation are left to the confines of this blog and we would prefer them NOT to be communicated to dad. Although someday he will read this and hopefully it will be insightful to him.]
Without a sit down with Dr. Oncologist or at least a pathologist, Jenny obtained a copy of the final pathology report from some neurologists today. The report indicates final grading of the growth as oligodendroglioma grade 2.5. This is good news because it means that it is exactly the same as it was 20 years ago - a slow-growing, somewhat manageable tumor. We learned that dad will take an oral form of chemotherapy when the doctors decide he's ready for it. Gone are the days of in-hospital, drip-drip from a bag, loose your hair and your stomach chemo. Gone are the days when chemo wasn't even an option for primary brain tumors because the drugs couldn't permeate the blood-brain barrier. 20 years later, we have better options for management of this disease that hopefully will only have minimal uncomfortable side affects for dad. We hope he will be as successful on this chemo as Grandma has been on hers. :) I guess I should mention that he requires chemo because one doctor somewhere along the way in the last week told us that there's indication that the surgeon was not able to successfully remove the entire growth and that it may be lingering in small hiding spots. Enter chemo. Target and destroy meandering tumor cells. Job done.
Another hiccup along the way - poor ol' dad now has a case of shingles. Ouch! But they're going to start him on some antivirals soon. Hopefully it will run it's course quickly and not cause too much pain. (Damn that dormant chicken pox virus...)
Tomorrow they're going to remove his feeding tube because it's been there too long and could start causing problems. Instead they'll perform a procedure to insert it directly through his abdomen. Still hoping that he won't have to be on it for too much longer. Apparently he really wants a light beer and almond M&Ms. Breakfast of champions. Right now he's allowed limited satisfaction - Ice Chip! Jen! Now! (Ice chip only once per half hour, delivered on schedule by Jenny!)
The other big development is that they feel that within a few days they will be willing to release him to acute long-term rehab, whether that be at the current facility or a rehab hospital, of which there is one close to mom and dad's house. They mentioned that they want the family to be involved in his therapy. Like there's so many of us - and we live there - and mom doesn't have to work. Not really realistic. Not sure how we're going to handle that.
Onward and upward dad. We're all confident in your strength and determination.
Darcy
Today Jenny facilitated my first phone conversation with dad. It felt wonderful to hear his voice, however raspy and weak it may be. He asked, "How's my granddaughter doing?" and when I asked him if he missed me, he said, "You bet," quite emphatically I might note. He also mentioned that he was happy to get an email from Bob Baker. And he thanked me for keeping on top of his email. I'm naturally a "daddy approval-seeker," so it felt good to know that he appreciated this. It would be dishonest of me to say that he sounded great and just like his old self. So in a sense it was difficult to talk to him, but, as I discussed with mom, it's important to remember that he is still in recovery mode and he's going to get better, even if it's a long haul.
[Caveat: I'm sure it's apparent and understood, but any feelings we have that lean towards being scared or sad about dad's situation are left to the confines of this blog and we would prefer them NOT to be communicated to dad. Although someday he will read this and hopefully it will be insightful to him.]
Without a sit down with Dr. Oncologist or at least a pathologist, Jenny obtained a copy of the final pathology report from some neurologists today. The report indicates final grading of the growth as oligodendroglioma grade 2.5. This is good news because it means that it is exactly the same as it was 20 years ago - a slow-growing, somewhat manageable tumor. We learned that dad will take an oral form of chemotherapy when the doctors decide he's ready for it. Gone are the days of in-hospital, drip-drip from a bag, loose your hair and your stomach chemo. Gone are the days when chemo wasn't even an option for primary brain tumors because the drugs couldn't permeate the blood-brain barrier. 20 years later, we have better options for management of this disease that hopefully will only have minimal uncomfortable side affects for dad. We hope he will be as successful on this chemo as Grandma has been on hers. :) I guess I should mention that he requires chemo because one doctor somewhere along the way in the last week told us that there's indication that the surgeon was not able to successfully remove the entire growth and that it may be lingering in small hiding spots. Enter chemo. Target and destroy meandering tumor cells. Job done.
Another hiccup along the way - poor ol' dad now has a case of shingles. Ouch! But they're going to start him on some antivirals soon. Hopefully it will run it's course quickly and not cause too much pain. (Damn that dormant chicken pox virus...)
Tomorrow they're going to remove his feeding tube because it's been there too long and could start causing problems. Instead they'll perform a procedure to insert it directly through his abdomen. Still hoping that he won't have to be on it for too much longer. Apparently he really wants a light beer and almond M&Ms. Breakfast of champions. Right now he's allowed limited satisfaction - Ice Chip! Jen! Now! (Ice chip only once per half hour, delivered on schedule by Jenny!)
The other big development is that they feel that within a few days they will be willing to release him to acute long-term rehab, whether that be at the current facility or a rehab hospital, of which there is one close to mom and dad's house. They mentioned that they want the family to be involved in his therapy. Like there's so many of us - and we live there - and mom doesn't have to work. Not really realistic. Not sure how we're going to handle that.
Onward and upward dad. We're all confident in your strength and determination.
Darcy
Tuesday, August 28, 2007
Tuesday
Crotchety, whiny moment (I promise it won't last long...) -
Thought we would get to do a sit down with Dr. Oncologist today, but she informed us that we would need to make an appointment to get our questions answered. Unbelievable. She was on vacation, now she needs us to make an appointment before she can boil down what is really going on here. She did feel inclined to tell dad that he would need chemotherapy. Wish we could have had that conversation with her first.
He has been moved to a telemetry room. He's continuing to receive regular physical therapy. We did find out that he will continue the therapy in-hospital, so his stay will be weeks/months depending on his progress. I'm sure dad's not excited about this, but I think it's positive because last time they sent him home very early and he had some out-patient therapy that never seemed to be too effective.
I wanted to thank those of you who have emailed me notes for dad. I can't tell you how much this means to him. Jenny tells me that when she reads these to him he seems to perk up. Keep them coming. Nothing is more healing than knowing you are loved and cared for.
Additional note:
I just spoke with mom and Jen after their day at the hospital. They attended a brain tumor support group this evening which they said was helpful. They also mentioned that the reason they haven't given us a full-blown prognosis is that the docs have a "don't ask, don't tell" policy. Since every case is different, they typically don't like to go down this path. I think this is wise because we should totally focus on getting him better and into remission and not about what the statistics say. Also, Dr. Oncologist said that right now we are to focus on his recovery, then we'll cross the bridge to treatment when he's more equipped for it.
- Darcy
Thought we would get to do a sit down with Dr. Oncologist today, but she informed us that we would need to make an appointment to get our questions answered. Unbelievable. She was on vacation, now she needs us to make an appointment before she can boil down what is really going on here. She did feel inclined to tell dad that he would need chemotherapy. Wish we could have had that conversation with her first.
He has been moved to a telemetry room. He's continuing to receive regular physical therapy. We did find out that he will continue the therapy in-hospital, so his stay will be weeks/months depending on his progress. I'm sure dad's not excited about this, but I think it's positive because last time they sent him home very early and he had some out-patient therapy that never seemed to be too effective.
I wanted to thank those of you who have emailed me notes for dad. I can't tell you how much this means to him. Jenny tells me that when she reads these to him he seems to perk up. Keep them coming. Nothing is more healing than knowing you are loved and cared for.
Additional note:
I just spoke with mom and Jen after their day at the hospital. They attended a brain tumor support group this evening which they said was helpful. They also mentioned that the reason they haven't given us a full-blown prognosis is that the docs have a "don't ask, don't tell" policy. Since every case is different, they typically don't like to go down this path. I think this is wise because we should totally focus on getting him better and into remission and not about what the statistics say. Also, Dr. Oncologist said that right now we are to focus on his recovery, then we'll cross the bridge to treatment when he's more equipped for it.
- Darcy
Monday, August 27, 2007
Monday
Doctors should not be able to take vacations... at least not when you need the results of a pending pathology report....
Apparently the pathology report is finalized, but the doctors able to discuss the results are still "out on vacation," or at least not able to answer a page. Hopefully more tomorrow.
We learned that the heart issue last week (which has been termed a type of "failure") was due to a complication that can be associated with the surgery. The medication he's on now is only necessary for him to take in the short term.
He should be moved from the ICU to a telemetry room sometime soon. This is not exactly a regular room, rather he will still be able to be monitored closely.
Today the physical and occupational therapists continued to work with him. They will continue to treat him in-hospital, so his stay at St. Joseph's/Barrow could go on for some time. They had him up and in a chair for about 2 hours, where he enjoyed reading his National Geographic.
The feeding tube in still in. The doctor said that it's taking some time for him to be able to swallow properly because his throat is all swollen from the length of time he was intibated with the ventilator. Once this gets better, he should be able to loose the tube.
The tremors in his hands seem to be improving. This, along with some other issues, will continue to improve as he recovers from the surgery and the brain swelling decreases.
The bacterial infections he's been suffering through seems to be clearing up. Huge relief.
And lastly, he's tired of mom and Jen starring at him all day. :)
- Darcy
PS- For fun, click on the link to the left for Postcards From Dallas.
Apparently the pathology report is finalized, but the doctors able to discuss the results are still "out on vacation," or at least not able to answer a page. Hopefully more tomorrow.
We learned that the heart issue last week (which has been termed a type of "failure") was due to a complication that can be associated with the surgery. The medication he's on now is only necessary for him to take in the short term.
He should be moved from the ICU to a telemetry room sometime soon. This is not exactly a regular room, rather he will still be able to be monitored closely.
Today the physical and occupational therapists continued to work with him. They will continue to treat him in-hospital, so his stay at St. Joseph's/Barrow could go on for some time. They had him up and in a chair for about 2 hours, where he enjoyed reading his National Geographic.
The feeding tube in still in. The doctor said that it's taking some time for him to be able to swallow properly because his throat is all swollen from the length of time he was intibated with the ventilator. Once this gets better, he should be able to loose the tube.
The tremors in his hands seem to be improving. This, along with some other issues, will continue to improve as he recovers from the surgery and the brain swelling decreases.
The bacterial infections he's been suffering through seems to be clearing up. Huge relief.
And lastly, he's tired of mom and Jen starring at him all day. :)
- Darcy
PS- For fun, click on the link to the left for Postcards From Dallas.
Sunday, August 26, 2007
Sunday
Still on feeding tube. But no fever, so that's something.
Dad still hasn't passed the "swallow test" so they're making him keep the tube. He's pretty discouraged by this, and by the situation in general. Still in ICU.
Hopefully mom and Jen will be able to meet with the neuro-oncologist tomorrow and get some further information about his situation and have some questions answered. At this point, the pathology report is still officially "preliminary." There's been some confusion with everyone they've talked to about what's really going on here. Hopefully we should have some issues sorted out by this time tomorrow or at the very latest Tuesday.
To be honest, I think the gravity of the situation is beginning to settle in with everyone and the stress is now undeniable. Please pray for peace for my family. Dad seems very withdrawn, so now would be a wonderful time to pass along any personal notes from his loved ones that may happen to land in my email inbox (darcyrd@hotmail.com). They will be promptly forwarded to mom for printing and reading to dad- STAT! :)
Dad still hasn't passed the "swallow test" so they're making him keep the tube. He's pretty discouraged by this, and by the situation in general. Still in ICU.
Hopefully mom and Jen will be able to meet with the neuro-oncologist tomorrow and get some further information about his situation and have some questions answered. At this point, the pathology report is still officially "preliminary." There's been some confusion with everyone they've talked to about what's really going on here. Hopefully we should have some issues sorted out by this time tomorrow or at the very latest Tuesday.
To be honest, I think the gravity of the situation is beginning to settle in with everyone and the stress is now undeniable. Please pray for peace for my family. Dad seems very withdrawn, so now would be a wonderful time to pass along any personal notes from his loved ones that may happen to land in my email inbox (darcyrd@hotmail.com). They will be promptly forwarded to mom for printing and reading to dad- STAT! :)
Saturday, August 25, 2007
Saturday
Kind of a tough day today.
So apparently dad pulled out his feeding tube at some point last night. I'm not sure if he's totally aware that he did it. (So it WAS him that dislodged it yesterday! Sneaky little dad.) So after much waiting, doctor checks, x-rays, etc., the tube was reinserted. He has not yet passed the "swallow test" so they're not yet allowing him to eat on his own. Too much of a risk for aspiration, and with his fever and possible pneumonia it's not a chance worth taking. Long story short, he had to wait all day for them to deliver any nourishment and liquids through the tube. Needless to say, dad is cranky - to say the least. He's still in the ICU. The pulmonary docs are still concerned about his lung situation so they're not ready to release him to a regular room. Plus he's REAL puffy and swollen all over so they've got to get that under control. Most of you know that my dad's always been kind of a bean pole, so to see him a little plump around the edges is a little strange. Payback for all the fat comments I would presume, dad. But his excuse for his missing "edit button" has always been "that they took that part out!"
I think at this point he is very frustrated and it was a very tough day on him, mom and Jen. The downside of him being neurologically a bit better is that he is totally aware of everything that is going on and it is very stressful and uncomfortable. But when mom and Jen left him this evening, he was enjoying his dose of morphine and an old John Wayne Flick. Very fitting. Dad can watch AMC for hours, even all night!
Mom said again that the long term memory seems to be good, but he seems to not be totally registering the short term. I think they're having to re-explain things a lot, which is adding to his frustration level. Mom said his tremors were improving a bit. It's my opinion that these issues will decrease the farther into recovery he gets. If I remember right, these were more like side affects from the last surgery so they're bound to be an issue (maybe even a greater issue) after this most recent surgery. The nurse did mention that each additional time someone has this surgery the harder it is to recover from it. But dad is a trooper and with a lot of prayer, love, support and encouragement from all of us, he can get back to were he was, if not real close.
This morning mom sent me a pic on my cell phone of dad. With the glowing oxygen sensor on his finger, he was pointing to the camera, as if to say "Phone Home." It was very nice to see him again, even if only on the tiny screen of my cell phone.
Our love and thanks to everyone for all your continued prayers and support.
So apparently dad pulled out his feeding tube at some point last night. I'm not sure if he's totally aware that he did it. (So it WAS him that dislodged it yesterday! Sneaky little dad.) So after much waiting, doctor checks, x-rays, etc., the tube was reinserted. He has not yet passed the "swallow test" so they're not yet allowing him to eat on his own. Too much of a risk for aspiration, and with his fever and possible pneumonia it's not a chance worth taking. Long story short, he had to wait all day for them to deliver any nourishment and liquids through the tube. Needless to say, dad is cranky - to say the least. He's still in the ICU. The pulmonary docs are still concerned about his lung situation so they're not ready to release him to a regular room. Plus he's REAL puffy and swollen all over so they've got to get that under control. Most of you know that my dad's always been kind of a bean pole, so to see him a little plump around the edges is a little strange. Payback for all the fat comments I would presume, dad. But his excuse for his missing "edit button" has always been "that they took that part out!"
I think at this point he is very frustrated and it was a very tough day on him, mom and Jen. The downside of him being neurologically a bit better is that he is totally aware of everything that is going on and it is very stressful and uncomfortable. But when mom and Jen left him this evening, he was enjoying his dose of morphine and an old John Wayne Flick. Very fitting. Dad can watch AMC for hours, even all night!
Mom said again that the long term memory seems to be good, but he seems to not be totally registering the short term. I think they're having to re-explain things a lot, which is adding to his frustration level. Mom said his tremors were improving a bit. It's my opinion that these issues will decrease the farther into recovery he gets. If I remember right, these were more like side affects from the last surgery so they're bound to be an issue (maybe even a greater issue) after this most recent surgery. The nurse did mention that each additional time someone has this surgery the harder it is to recover from it. But dad is a trooper and with a lot of prayer, love, support and encouragement from all of us, he can get back to were he was, if not real close.
This morning mom sent me a pic on my cell phone of dad. With the glowing oxygen sensor on his finger, he was pointing to the camera, as if to say "Phone Home." It was very nice to see him again, even if only on the tiny screen of my cell phone.
Our love and thanks to everyone for all your continued prayers and support.
Friday, August 24, 2007
Friday
Here's the latest-
- Dad still has a fever, and they're still trying to figure out the cause. One possibility is pneumonia, so they've cultured him.
- Still on the feeding tube, but they will allow him to try some food on his own and if he can swallow ok then they'll remove the tube. Somehow today the tube was partially dislodged so it was "re-installed" and mom said he handled it like a champ. Apparently he's really jonesin' for a Pepsi...
- The speech therapist and physical therapist met with him today. Should hear soon what their plans are on helping him and what his needs are for therapy.
- Dr. "Short On Words" Brain Surgeon checked on him today and said he was healing well.
- Mom says he's trying to talk, but his chords are still shot from the vent tube, so he's a little frustrated that he can't communicate very well. This should get better as the days allow his throat to heal up.
- Mom said his memory seems to be intact and he understands what has happened and the length of time this has been going on. But dad's long-term memory has never been a problem. He mostly has trouble with the short term.
- His blood pressure continues to be an issue, but hopefully the more days of rest and recovery he gets under his belt, the more likely it will be to resolve on its own.
Mom promises that she's going to sneak a picture of him on her cell phone and send it to me tomorrow. Can't tell you how much I miss him.
- Darcy
Random dad memory:
There were a few times in the winter that we got a good enough freeze that Fanno Creek behind our house in Greenway Park would freeze solid enough to walk on. So two or three times dad bundled me up in his old coat from when he was a kid and we went for an outing (once even in the freezing rain!) to trek through the ice and snow for a winter walk. There's even a picture somewhere that he took of me where I'm standing on the frozen Fanno Creek so bundled up you can't even tell it's me.
Thursday, August 23, 2007
Thursday
Hi everyone-
Good news! Dad is off the ventilator! This is a huge step in the right direction. Mom said he seems to be doing well, despite a very sore throat. It might be a few days before he can fully and comfortably speak again, but at least now he's able to communicate better. Again, neuro-wise he seems to be doing well. He's wearing his glasses and watching TV - business as usual. His nurse said that he'll probably be able to leave the ICU in a few days.
Dr. Cardiologist said his heart issues are minimal and can be controlled with meds. Mostly high blood pressure issues, which seems to ebb and flow based on his stress level. Mom and Jen are helping to keep him calm and assured that he is on the mend.
If anyone is curious, here is a link to more info about oligodendroglioma.
http://en.wikipedia.org/wiki/Oligodendroglioma
I'm very anxious to be able to talk dad on the phone and hopefully will be able to do so once he gets his voice back and is transferred to a regular room that does not have phone restrictions.
Monday mom should be able to speak with the neuro-oncologist at length and get some questions answered about the recurrence and what that means in terms of further treatment. The first occurrence (in 1988) required surgery and a few rounds of radiation. At least we've already got the surgery out of the way.
On a sentimental note, when we were little, dad would play Blackbird and rock us in his dad's old rocking chair. It's a beautiful memory.
Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise
Blackbird singing in the dead of night
Take these sunken eyes and learn to see
All your life
You were only waiting for this moment to be free
Blackbird fly,
Blackbird fly
Into the light of the dark black night.
Blackbird fly,
Blackbird fly
Into the light of the dark black night.
Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise
You were only waiting for this moment to arise
You were only waiting for this moment to arise
Good news! Dad is off the ventilator! This is a huge step in the right direction. Mom said he seems to be doing well, despite a very sore throat. It might be a few days before he can fully and comfortably speak again, but at least now he's able to communicate better. Again, neuro-wise he seems to be doing well. He's wearing his glasses and watching TV - business as usual. His nurse said that he'll probably be able to leave the ICU in a few days.
Dr. Cardiologist said his heart issues are minimal and can be controlled with meds. Mostly high blood pressure issues, which seems to ebb and flow based on his stress level. Mom and Jen are helping to keep him calm and assured that he is on the mend.
If anyone is curious, here is a link to more info about oligodendroglioma.
http://en.wikipedia.org/wiki/Oligodendroglioma
I'm very anxious to be able to talk dad on the phone and hopefully will be able to do so once he gets his voice back and is transferred to a regular room that does not have phone restrictions.
Monday mom should be able to speak with the neuro-oncologist at length and get some questions answered about the recurrence and what that means in terms of further treatment. The first occurrence (in 1988) required surgery and a few rounds of radiation. At least we've already got the surgery out of the way.
On a sentimental note, when we were little, dad would play Blackbird and rock us in his dad's old rocking chair. It's a beautiful memory.
Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise
Blackbird singing in the dead of night
Take these sunken eyes and learn to see
All your life
You were only waiting for this moment to be free
Blackbird fly,
Blackbird fly
Into the light of the dark black night.
Blackbird fly,
Blackbird fly
Into the light of the dark black night.
Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise
You were only waiting for this moment to arise
You were only waiting for this moment to arise
Wednesday, August 22, 2007
Wednesday update
Hi everyone-
Two steps forward, one step back.
Neuro wise, dad is still making great strides. The doctors are pleased at his alertness and response. Still moving in a good direction.
We did find out today that the preliminary pathology reports show that what they removed during the surgery was in fact a re-occurrence of the brain tumor - oligodendroglioma. We're still waiting on the final word, but if this is the case, it's almost good news, because it's a very slow-growing, non-aggressive tumor. And hopefully all of it was removed in the surgery anyhow.
Today he had a small set-back. He had some blood pressure and heart rate issues, and they gave him a blood transfusion. Still not sure what is going on with that and I am still waiting on word from mom once she talked to the cardiologist tonight.
Ava and I are back in Dallas for the time being.
Please keep my dad in your thoughts and prayers.
-Darcy
Two steps forward, one step back.
Neuro wise, dad is still making great strides. The doctors are pleased at his alertness and response. Still moving in a good direction.
We did find out today that the preliminary pathology reports show that what they removed during the surgery was in fact a re-occurrence of the brain tumor - oligodendroglioma. We're still waiting on the final word, but if this is the case, it's almost good news, because it's a very slow-growing, non-aggressive tumor. And hopefully all of it was removed in the surgery anyhow.
Today he had a small set-back. He had some blood pressure and heart rate issues, and they gave him a blood transfusion. Still not sure what is going on with that and I am still waiting on word from mom once she talked to the cardiologist tonight.
Ava and I are back in Dallas for the time being.
Please keep my dad in your thoughts and prayers.
-Darcy
Previous updates
Sent: Tuesday, August 21, 2007 10:36
Tuesday update -
We are seeing improvements each day, even if little by little. Today dad seemed to be aware of us, looking at us, nodding head a little, moving toes and fingers when asked, turning head to us. He even was lifting his head up. All things that make us very happy. He's still on the ventilator, but they've decided to hold off on the tracheotomy ventilator to see if they can wean him off soon, otherwise, they'll need to do the tracheotomy ventilator to make him more comfortable. The doctors and nurses all say that they are pleased with his improvement. Still no word on pathology. They've advised us that it could be several weeks before he's ready to leave ICU. Right now he's battling a fever and some minor infections, but all to be expected considering his condition.
I'm heading back to Dallas in the morning with Ava, but Jenny is able to stay for much longer to help out. Thank you for your continued support and encouragement. I know it means a lot to my dad.-Darcy
Date: Sun, 19 Aug 2007 17:11:55 -0600
Sunday update... No seizures recorded since time of surgery. This is very significant because it indicates that the surgery did what it was supposed to do - stop the seizures and allow dad to recover from them. Because the length of time he was status eppilepticus, it will take him some time to come out of it. For those who are interested, the time period following a seizure is called a post-dictal period (the time that someone is unconscious or the brain is "slowed down" recovering from the seizure), and since the status eppilepticus was for about a week, his post-dictal period will presumably be long as well. One doctor even indicated that it could take as long as a week.
Here's more good news - he's reacting more to pain and stimulus. Today he opened his eyes a little and squeezed our hands. Can't tell you how good this makes us feel. All of his other vitals are good. We've seen him move his head and both arms and legs. All good signs. Everything seems to be in working order.
I personally reviewed his MRIs from pre- and post-op. I needed to see for myself how much brain tissue was removed, since the surgeon indicated it was the entire right frontal lobe. From what I saw and learned from the neurologist, a small area of brain tissue was removed in addition to the scar tissue or tumor that had grown into the old tumor bed. I think it puts us at ease to know that in actuality he did not loose much more tissue than what had been removed in previous surgeries.
We just learned that tomorrow they are going to replace the type of ventilator and feeding tube he is on, so he will have to undergo two procedures.
If anyone would like to send dad a message, please feel free to email it to me and we will read it to him. We've got music playing in his room and we are trying to talk to him and read to him to encourage him to wake up. Thank you for all your love and support. Please keep dad in your prayers. All our love- Darcy, Rhonda and Jenny
Date: Fri, 17 Aug 2007 18:23:51 -0600
Here is the latest news-Dad was in surgery for about 4 hours this morning. They removed most of his entire right frontal lobe to try to stop the seizures. They've told us that this removal should not leave him with significant impairment (he'd already lost a lot of it in previous surgeries.). He's resting now, but has not yet woken up.
His coma-like condition is called status epilepticus. We're waiting to see if this surgery has stopped the ongoing seizure activity and we're praying for him to wake from it. It will take about a week to find out from pathology what it was the was growing in the tumor bed area (the old tumor cavity, where the scar tissue was found and removed last time) that was also removed.
We're going back in a little while to be with him after we get some rest. THANK YOU for all your emails, calls and support. Love- Rhonda, Darcy and Jenny
Date: Thu, 16 Aug 2007 17:33:42 -0600
Hi everyone-I flew into Phoenix last night to see my dad. Mom and I just had a discussion with his doctor. They feel that unless his condition improves today or overnight (with the addition of new seizure medications) that surgery needs to proceed at 9am tomorrow morning. The pressing issue is that he continues to have seizures and they need to get them under control to prevent damage to his brain. They know now that they are originating from where his tumor was and the area shows new growth/changes that's either scar tissue or new tumor. They feel that the surgery is our chance to get him out of the "coma," although that's not technically what they're calling it. They've told us that although surgery is always a risk, they feel that it's the right coarse of action try to get him back to us. Jenny's flying in tonight. Mom, Jenny and I thank you all for your thoughts and prayers for Dad. Please pray for the doctors that they can have the wisdom and skill to treat my Dad and bring him back to us.
Date: Tue, 14 Aug 2007 20:07:24 -0600
I can't remember who I've talked to or emailed, so here is a blast email to update those of you who might want to know about my dad's condition. We got some promising news tonight. Mom met with the doctors and they believe his "coma-like" state is due to underlying continued seizure activity and they are optimistic that we he will wake up. He does not have an infection of spinal fluid. He has some new growth in tumor area, but type is undetermined. They're not saying it's a recurrence, as it could be more scar tissue growth, like what they found in the last surgery. Please keep my dad in your prayers. We are praying for him to wake up and his body to be healed from these seizures. We're hoping that the doctors can find the right combination of drugs to stop the seizures and that they will continue to give us a positive prognosis. All my love- Darcy
Tuesday update -
We are seeing improvements each day, even if little by little. Today dad seemed to be aware of us, looking at us, nodding head a little, moving toes and fingers when asked, turning head to us. He even was lifting his head up. All things that make us very happy. He's still on the ventilator, but they've decided to hold off on the tracheotomy ventilator to see if they can wean him off soon, otherwise, they'll need to do the tracheotomy ventilator to make him more comfortable. The doctors and nurses all say that they are pleased with his improvement. Still no word on pathology. They've advised us that it could be several weeks before he's ready to leave ICU. Right now he's battling a fever and some minor infections, but all to be expected considering his condition.
I'm heading back to Dallas in the morning with Ava, but Jenny is able to stay for much longer to help out. Thank you for your continued support and encouragement. I know it means a lot to my dad.-Darcy
Date: Sun, 19 Aug 2007 17:11:55 -0600
Sunday update... No seizures recorded since time of surgery. This is very significant because it indicates that the surgery did what it was supposed to do - stop the seizures and allow dad to recover from them. Because the length of time he was status eppilepticus, it will take him some time to come out of it. For those who are interested, the time period following a seizure is called a post-dictal period (the time that someone is unconscious or the brain is "slowed down" recovering from the seizure), and since the status eppilepticus was for about a week, his post-dictal period will presumably be long as well. One doctor even indicated that it could take as long as a week.
Here's more good news - he's reacting more to pain and stimulus. Today he opened his eyes a little and squeezed our hands. Can't tell you how good this makes us feel. All of his other vitals are good. We've seen him move his head and both arms and legs. All good signs. Everything seems to be in working order.
I personally reviewed his MRIs from pre- and post-op. I needed to see for myself how much brain tissue was removed, since the surgeon indicated it was the entire right frontal lobe. From what I saw and learned from the neurologist, a small area of brain tissue was removed in addition to the scar tissue or tumor that had grown into the old tumor bed. I think it puts us at ease to know that in actuality he did not loose much more tissue than what had been removed in previous surgeries.
We just learned that tomorrow they are going to replace the type of ventilator and feeding tube he is on, so he will have to undergo two procedures.
If anyone would like to send dad a message, please feel free to email it to me and we will read it to him. We've got music playing in his room and we are trying to talk to him and read to him to encourage him to wake up. Thank you for all your love and support. Please keep dad in your prayers. All our love- Darcy, Rhonda and Jenny
Date: Fri, 17 Aug 2007 18:23:51 -0600
Here is the latest news-Dad was in surgery for about 4 hours this morning. They removed most of his entire right frontal lobe to try to stop the seizures. They've told us that this removal should not leave him with significant impairment (he'd already lost a lot of it in previous surgeries.). He's resting now, but has not yet woken up.
His coma-like condition is called status epilepticus. We're waiting to see if this surgery has stopped the ongoing seizure activity and we're praying for him to wake from it. It will take about a week to find out from pathology what it was the was growing in the tumor bed area (the old tumor cavity, where the scar tissue was found and removed last time) that was also removed.
We're going back in a little while to be with him after we get some rest. THANK YOU for all your emails, calls and support. Love- Rhonda, Darcy and Jenny
Date: Thu, 16 Aug 2007 17:33:42 -0600
Hi everyone-I flew into Phoenix last night to see my dad. Mom and I just had a discussion with his doctor. They feel that unless his condition improves today or overnight (with the addition of new seizure medications) that surgery needs to proceed at 9am tomorrow morning. The pressing issue is that he continues to have seizures and they need to get them under control to prevent damage to his brain. They know now that they are originating from where his tumor was and the area shows new growth/changes that's either scar tissue or new tumor. They feel that the surgery is our chance to get him out of the "coma," although that's not technically what they're calling it. They've told us that although surgery is always a risk, they feel that it's the right coarse of action try to get him back to us. Jenny's flying in tonight. Mom, Jenny and I thank you all for your thoughts and prayers for Dad. Please pray for the doctors that they can have the wisdom and skill to treat my Dad and bring him back to us.
Date: Tue, 14 Aug 2007 20:07:24 -0600
I can't remember who I've talked to or emailed, so here is a blast email to update those of you who might want to know about my dad's condition. We got some promising news tonight. Mom met with the doctors and they believe his "coma-like" state is due to underlying continued seizure activity and they are optimistic that we he will wake up. He does not have an infection of spinal fluid. He has some new growth in tumor area, but type is undetermined. They're not saying it's a recurrence, as it could be more scar tissue growth, like what they found in the last surgery. Please keep my dad in your prayers. We are praying for him to wake up and his body to be healed from these seizures. We're hoping that the doctors can find the right combination of drugs to stop the seizures and that they will continue to give us a positive prognosis. All my love- Darcy
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