Charles and I have been home since 2. He's been sleeping off an on. We were both SUPER happy to be able to shower! At least we were prepared for the surgery in some ways this time around since we didn't have a whole lot of advanced notice (having a shower seat, etc). He's been taking the max dose of codeine that he can, and also tylenol. He's due for another dose at 11, in addition to some more decadron (steroid- it sucks). Some fluid has pooled under his eye and it's nice and green and puffy. He's eaten a good amount today and that has made me very happy! Last night he drank a little broth and that was about it. This morning he had a little scrambled eggs and some orange juice. When we got home, I made him some chicken & vegetable soup. I was hoping he would be able to swallow some of the veggies, and he tried drinking it through a straw and it didn't work out so well, so we sent it through the blender! It worked really well... turned into a chicken veggie bisque or something. I was very happy he actually got in some protein & veggies. He also had some mashed potatoes and a couple spoon-fulls of applesauce.
We also got a brief visit from Osh & Michele which was lovely... and they fed the cats for us :-D Awesome. I SUPER appreciate not having to do that tonight! I'm ready to crash... poor Charlie is in pain.. I gave him the pain meds a little early, I hope it will kick in soon and he can get some good sleep in.
Anything else I can update about later :)
Goodnight! Thanks everyone :)
Thursday, September 8, 2011
Wednesday, September 7, 2011
Day 2
Day 2 has been tough for Charlie. He has been in pain pretty much all day. He tried getting up twice and it caused more pain both times. He walked a little bit on the first go. The second try he went to the bathroom and sat in a chair for a bit. The second time they wanted him to sit in the chair until Dr. Al-Mefty came around. Apparently he REALLY wants to see his patients sitting on the 2nd day. Well when he finally showed up, Charlie was back in bed. He had sat in the chair for a half hour, even though it was really painful and he kept asking to get back into bed. The doctor wasn't pleased, but there was me and 3 nurses telling him, he WAS up, he DID walk, he was sitting waiting for you, but he's in too much pain! He babbled on about needing to get up and walking and sitting. I understand he's just trying to keep Charlie safe. If he stays laying in bed too long, he could get pneumonia or blood clots and of course we don't want that! But still it's tough for him because his head hurts so much.
A while after we saw the doctor, his partner came by. We had spoke with him in pre-op last week, and he kind of helped explain things better than dr al-mefty had. He stopped by to check in on Charles and asked about his pain. He said as long as it stays consistantly the jaw and on the right side then it was OK and expected. But if it changes, becomes stabbing, or starts hurting the rest of his head then it could be an indication of something being wrong. No one mentioned when he should go home. I definitely don't see him getting out in the morning at least. Maybe if he does really well he will get out tomorrow evening, if not, probably Friday morning.
He has moved out of the NICU and up to a regular room. He's been asleep pretty much the whole time since he has moved. He was given some more codeine about a half hour after he arrived and has been conked out since then, so that's nice. It's late. no one is going to be bugging him to do anything tonight so the more rest he gets the better and hopefully he will feel up to doing a bit more in the morning.
We had some other visitors today. Dr. Samuels stopped by and checked in on him. He said he was very happy with how Charles was doing, and said that his mother sure does talk! He mentioned having her for dinner and Charles said "I bet she tasted bad." Haha. Apparently Suzanne and Susie have been having a lovely time catching up, so that's nice! It's good to have something to relax her a little bit, she has had such a stressful summer!
We also got a visit from Dr. Prasad the neuro-opthalmologist. Charlie saw him for an exam this summer, and had been scheduled to see him for a follow up next week. He wasn't around last week when Charlie needed a pre-op eye appt, so Dr. Prasad wasn't able to do it. He had checked in on his case and was happy to see that his eye sight hadn't gotten any worse. He said that he had been very cautious and worried because his concern was the eye sight and that the surgery was very risky and could have lead to worse problems with his sight. So he was very relieved that the surgery had gone so well.
Nurse Gerry stopped by for a visit today too, which I thought was very nice. He was around last night when Charlie was in the worst pain, and was very relieved to have found out that his night was actually fairly calm, he was worried he would have a rough night. I also explained to him what the doctor had told me about why they didn't want him taking pain meds, and he appreciated that.
His night nurse was Jody who was nice, and his nurse today was Jean Anne who was also great. His nurse right now is Tracey and she seems pretty awesome, too bad she's going to be off shift soon, let's hope his overnight nurse is great as well!
It's almost 9 and no one has said anything to me about visiting hours or leaving... I know before they were like well you need to talk to the overnight nurse, so Tracey might be just leaving me be since I'm not causing any problems. Or maybe the NICU nurses told them I'd want to stay, I'm not sure. I haven't mentioned anything because I don't want to be told I have to leave, haha. Even though it would probably be smart to find out and make arrangements if I need to leave... I've got a high back chair, a pillow, and a chair to rest my feet on... I'm actually fairly comfortable... I could probably spend the night here OK if I needed to. I don't think I'd sleep GREAT but I probably wouldn't sleep much better not being here. We'll see! Who knows what will happen.
I'm happy that his roommate doesn't seem to be so lousy this time. He's an older man who just had a stroke. His middle aged daughters and wife were here when we arrived, they were all very polite and left about an hour ago. He has been pretty quiet. I did hear them discuss that he had problems sleeping... so I'm not sure if that might be a reason that they may make me leave... but he's been quiet and not watching TV loudly or talking to anyone, so that's good with us! He's not obnoxious or smelly, so THAT's good! They might make me leave due to old man privacy issues... we'll see, like I said.... wish me luck! I'm kind of just winging it at this point... because I'm content with where I am right now. If Charlie needs me, I am right here where I am supposed to be.
A while after we saw the doctor, his partner came by. We had spoke with him in pre-op last week, and he kind of helped explain things better than dr al-mefty had. He stopped by to check in on Charles and asked about his pain. He said as long as it stays consistantly the jaw and on the right side then it was OK and expected. But if it changes, becomes stabbing, or starts hurting the rest of his head then it could be an indication of something being wrong. No one mentioned when he should go home. I definitely don't see him getting out in the morning at least. Maybe if he does really well he will get out tomorrow evening, if not, probably Friday morning.
He has moved out of the NICU and up to a regular room. He's been asleep pretty much the whole time since he has moved. He was given some more codeine about a half hour after he arrived and has been conked out since then, so that's nice. It's late. no one is going to be bugging him to do anything tonight so the more rest he gets the better and hopefully he will feel up to doing a bit more in the morning.
We had some other visitors today. Dr. Samuels stopped by and checked in on him. He said he was very happy with how Charles was doing, and said that his mother sure does talk! He mentioned having her for dinner and Charles said "I bet she tasted bad." Haha. Apparently Suzanne and Susie have been having a lovely time catching up, so that's nice! It's good to have something to relax her a little bit, she has had such a stressful summer!
We also got a visit from Dr. Prasad the neuro-opthalmologist. Charlie saw him for an exam this summer, and had been scheduled to see him for a follow up next week. He wasn't around last week when Charlie needed a pre-op eye appt, so Dr. Prasad wasn't able to do it. He had checked in on his case and was happy to see that his eye sight hadn't gotten any worse. He said that he had been very cautious and worried because his concern was the eye sight and that the surgery was very risky and could have lead to worse problems with his sight. So he was very relieved that the surgery had gone so well.
Nurse Gerry stopped by for a visit today too, which I thought was very nice. He was around last night when Charlie was in the worst pain, and was very relieved to have found out that his night was actually fairly calm, he was worried he would have a rough night. I also explained to him what the doctor had told me about why they didn't want him taking pain meds, and he appreciated that.
His night nurse was Jody who was nice, and his nurse today was Jean Anne who was also great. His nurse right now is Tracey and she seems pretty awesome, too bad she's going to be off shift soon, let's hope his overnight nurse is great as well!
It's almost 9 and no one has said anything to me about visiting hours or leaving... I know before they were like well you need to talk to the overnight nurse, so Tracey might be just leaving me be since I'm not causing any problems. Or maybe the NICU nurses told them I'd want to stay, I'm not sure. I haven't mentioned anything because I don't want to be told I have to leave, haha. Even though it would probably be smart to find out and make arrangements if I need to leave... I've got a high back chair, a pillow, and a chair to rest my feet on... I'm actually fairly comfortable... I could probably spend the night here OK if I needed to. I don't think I'd sleep GREAT but I probably wouldn't sleep much better not being here. We'll see! Who knows what will happen.
I'm happy that his roommate doesn't seem to be so lousy this time. He's an older man who just had a stroke. His middle aged daughters and wife were here when we arrived, they were all very polite and left about an hour ago. He has been pretty quiet. I did hear them discuss that he had problems sleeping... so I'm not sure if that might be a reason that they may make me leave... but he's been quiet and not watching TV loudly or talking to anyone, so that's good with us! He's not obnoxious or smelly, so THAT's good! They might make me leave due to old man privacy issues... we'll see, like I said.... wish me luck! I'm kind of just winging it at this point... because I'm content with where I am right now. If Charlie needs me, I am right here where I am supposed to be.
Surgery Facebook Updates
I've made a lot of facebook updates since the surgery. I figured I'd post them all here as well.
About pre-op:
Getting up at 4:30 am is just inhumane!
September 1 at 6:54am via mobile
Brigham and Women's fails... his pre op stuff is all messed up. We might have to be back here at 7 tomorrow. Awesome.
September 1 at 7:36am via mobile
Saw an old man with a bow tie today. Bow ties are cool.
September 1 at 7:53pm
If once was inhumane, I don't want to know what twice is... but its awful. I'm impressed we got here alive, I am so incredibly.exhausted I can barely keep my eyes open. Wow. Not looking forward to next week! Must get lots of sleep this weekend.
September 2 at 6:58am via mobile
I love how much doctors love Charlie. He is such a blast. The op tech loves him right now :) she is pretty awesome though.
September 2 at 9:18am via mobile
It has been one craaaaaaaaaaaaaaazy week!
September 2 at 2:27pm
SURGERY:
At the hospital admitting Charles for brain surgery for another shot at removing his brain tumor. Had hoped we would never be back here. It doesn't seem real. Please keep him in your thoughts and prayers.
Yesterday at 5:35am via mobile
We have said our see you laters... its a long day ahead. They have the OR booked for 9 hours. Dr. Al-Mefty is slow but thorough. Please send Charles all the good wishes you can!
Yesterday at 7:05am via mobile
We have left Charles Horn with the anesthesiologist. At least the day will go by quickly for him! It will be a long day for us! They have the OR booked for 9 hours. Dr. Al-Mefty is slow but thorough. Please send Charles all the good wishes you can!
Yesterday at 7:13am
No news is good news. We were told that the surgery (scheduled for 7:30) didn't begin until 8:50. But I think that's because the doctor is super thorough and slow. We prob won't be seeing him for a few more hours. Keep your happy thoughts coming!
20 hours ago via mobile
Charles Horn is still in the OR. They started closing him up a bit less than an hour ago and said it should take at least an hour. So, hopefully we'll hear from them sooner than later. Really really really really hoping they will give us good news!!!!!!!! Please keep rooting for him!! ♥
18 hours ago
Charles Horn has made it through surgery! They just told us that it was finished at 3:00. We will hopefully hear from Dr. Al-Mefty soon!! YAAAAAYYYY!!!!!!
18 hours ago
Charles Horn IS OK!!!!!!!!!!! Dr. Al-Mefty just came out and told us that he thinks he got all of the tumor, went into the optic canal and got lots out, it was wrapped around everything and it's all away from the left optic nerve and all out and YAAAAAY! It will be a bit before he's awake but OMG YAY!!!!! Keep your fingers crossed!!!! They have to do an MRI to make sure it's all out, but YAY!!!!!!!! Thank you all for everything!!!
18 hours ago
RECOVERY
Charles Horn woke up enough to tell me our code phrase and conked right back out! :) SOOOOOO happy! Will let you know when he's alive enough to tell us he can see! Granted he wont be wearing his glasses for a while but still :) ♥ ♥ ♥ ♥!!!!!!!!!!!!
17 hours ago
Well, he can see fingers!!!!! :-D Charles Horn
17 hours ago
Everything is going to be ok!!!! He said he loved me, he gave Abby a hi-5, told his mom she was an old broad and went back to sleep :) Everything is going to be JUST FINE!!!! Thank God!!!!! ♥ (Charles Horn)
17 hours ago
Poor Charles Horn is in soooooo much pain! It is just breaking my heart!!! And apparently Dr. Al-Mefty has a policy of NOT giving his patients any pain meds! Yes, brains don't feel pain, but the jaw and neck muscles you sliced through sure as hell do!!!! They paged the doctor that's on right now and I'm going to talk to him about asking Dr. Al-Mefty for pain med because it is EXCRUCIATING. Please wish him luck!!! :'(
14 hours ago
Please please please let him stay asleep for a while! Any sleep is a blessing to be relieved of a little of the pain.
14 hours ago via mobile
Well it looks like the codeine has helped some at least! He slept for about a half hour. He woke up needing a drink, so the nurse gave him 2 tylenol that she said she'd get him before he fell asleep. He took those. She asked if she could do anything to make him more comfortable and he said "not unless you can make my head heal right now". ♥ (Charles Horn)
13 hours ago
Taking a quiet moment to be so immensely grateful that my Charlie is ok!!! I have been so terrified!! And, you know what? I will declare publicly that someday I WILL (at least try to) have his babies! Haha. (though I'm at least still going to try to get him to do the pregnancy and labor bit...)
13 hours ago
Charles Horn has slept for about an hour total now! YAAAAY! :) He just woke up for a sec, had me cover him back up and get him some juice. I asked if I could get him anything else, and besides the 'new head' he also asked for a Fiona(our cat) to lay on him :) SO CUTE!!!!
13 hours ago
We've both got in a couple hours of sleep. Spent the last half hour or so chatting. So nice to see him gradually more alert and back to normal. And so lucky he doesn't have any identifiable deficits at this time! Ok back to sleep!
9 hours ago via mobile
Taking him in for a CT scan in a few. Pain is 7/10, but just got some codeine. He is thankful the CT is faster and quieter than MRI.
5 hours ago via mobile
Charles Horn is back from a quick CT scan. He's snuggled back in nicely and got an ice pack for his jaw. Pain is still moderate, just waiting for the codeine to kick in and trying to get some more sleep. He is anxious to get out of here! :) Hoping he can continue sleeping well and that the next day goes well! He said he's ready to try getting up, since he wants to get out of here ASAP. Will keep you updated! He wants you all to know he appreciates everything and thanks for the kind words.
4 hours ago
he's pretty miserable but the pain meds are hopefully starting to kick in. the nurse said she'd leave him alone for a bit, so I'm going to try to get some sleep too :) (Charles Horn)
about an hour ago
Poor boy is in lots of pain. Ate a little scrambled eggs. Or should I say swallowed. Got some more pain meds but they haven't helped yet. He's hot but his temp read OK. His right eye is a bit droopy, but he can open it OK when he tries, he said it's just easier not to, so most of the time he opens just his left eye or mostly the left and a little of the right. The whole right side of his head is in a LOT of pain.... (Charles Horn)
about an hour ago
About pre-op:
Getting up at 4:30 am is just inhumane!
September 1 at 6:54am via mobile
Brigham and Women's fails... his pre op stuff is all messed up. We might have to be back here at 7 tomorrow. Awesome.
September 1 at 7:36am via mobile
Saw an old man with a bow tie today. Bow ties are cool.
September 1 at 7:53pm
If once was inhumane, I don't want to know what twice is... but its awful. I'm impressed we got here alive, I am so incredibly.exhausted I can barely keep my eyes open. Wow. Not looking forward to next week! Must get lots of sleep this weekend.
September 2 at 6:58am via mobile
I love how much doctors love Charlie. He is such a blast. The op tech loves him right now :) she is pretty awesome though.
September 2 at 9:18am via mobile
It has been one craaaaaaaaaaaaaaazy week!
September 2 at 2:27pm
SURGERY:
At the hospital admitting Charles for brain surgery for another shot at removing his brain tumor. Had hoped we would never be back here. It doesn't seem real. Please keep him in your thoughts and prayers.
Yesterday at 5:35am via mobile
We have said our see you laters... its a long day ahead. They have the OR booked for 9 hours. Dr. Al-Mefty is slow but thorough. Please send Charles all the good wishes you can!
Yesterday at 7:05am via mobile
We have left Charles Horn with the anesthesiologist. At least the day will go by quickly for him! It will be a long day for us! They have the OR booked for 9 hours. Dr. Al-Mefty is slow but thorough. Please send Charles all the good wishes you can!
Yesterday at 7:13am
No news is good news. We were told that the surgery (scheduled for 7:30) didn't begin until 8:50. But I think that's because the doctor is super thorough and slow. We prob won't be seeing him for a few more hours. Keep your happy thoughts coming!
20 hours ago via mobile
Charles Horn is still in the OR. They started closing him up a bit less than an hour ago and said it should take at least an hour. So, hopefully we'll hear from them sooner than later. Really really really really hoping they will give us good news!!!!!!!! Please keep rooting for him!! ♥
18 hours ago
Charles Horn has made it through surgery! They just told us that it was finished at 3:00. We will hopefully hear from Dr. Al-Mefty soon!! YAAAAAYYYY!!!!!!
18 hours ago
Charles Horn IS OK!!!!!!!!!!! Dr. Al-Mefty just came out and told us that he thinks he got all of the tumor, went into the optic canal and got lots out, it was wrapped around everything and it's all away from the left optic nerve and all out and YAAAAAY! It will be a bit before he's awake but OMG YAY!!!!! Keep your fingers crossed!!!! They have to do an MRI to make sure it's all out, but YAY!!!!!!!! Thank you all for everything!!!
18 hours ago
RECOVERY
Charles Horn woke up enough to tell me our code phrase and conked right back out! :) SOOOOOO happy! Will let you know when he's alive enough to tell us he can see! Granted he wont be wearing his glasses for a while but still :) ♥ ♥ ♥ ♥!!!!!!!!!!!!
17 hours ago
Well, he can see fingers!!!!! :-D Charles Horn
17 hours ago
Everything is going to be ok!!!! He said he loved me, he gave Abby a hi-5, told his mom she was an old broad and went back to sleep :) Everything is going to be JUST FINE!!!! Thank God!!!!! ♥ (Charles Horn)
17 hours ago
Poor Charles Horn is in soooooo much pain! It is just breaking my heart!!! And apparently Dr. Al-Mefty has a policy of NOT giving his patients any pain meds! Yes, brains don't feel pain, but the jaw and neck muscles you sliced through sure as hell do!!!! They paged the doctor that's on right now and I'm going to talk to him about asking Dr. Al-Mefty for pain med because it is EXCRUCIATING. Please wish him luck!!! :'(
14 hours ago
Please please please let him stay asleep for a while! Any sleep is a blessing to be relieved of a little of the pain.
14 hours ago via mobile
Well it looks like the codeine has helped some at least! He slept for about a half hour. He woke up needing a drink, so the nurse gave him 2 tylenol that she said she'd get him before he fell asleep. He took those. She asked if she could do anything to make him more comfortable and he said "not unless you can make my head heal right now". ♥ (Charles Horn)
13 hours ago
Taking a quiet moment to be so immensely grateful that my Charlie is ok!!! I have been so terrified!! And, you know what? I will declare publicly that someday I WILL (at least try to) have his babies! Haha. (though I'm at least still going to try to get him to do the pregnancy and labor bit...)
13 hours ago
Charles Horn has slept for about an hour total now! YAAAAY! :) He just woke up for a sec, had me cover him back up and get him some juice. I asked if I could get him anything else, and besides the 'new head' he also asked for a Fiona(our cat) to lay on him :) SO CUTE!!!!
13 hours ago
We've both got in a couple hours of sleep. Spent the last half hour or so chatting. So nice to see him gradually more alert and back to normal. And so lucky he doesn't have any identifiable deficits at this time! Ok back to sleep!
9 hours ago via mobile
Taking him in for a CT scan in a few. Pain is 7/10, but just got some codeine. He is thankful the CT is faster and quieter than MRI.
5 hours ago via mobile
Charles Horn is back from a quick CT scan. He's snuggled back in nicely and got an ice pack for his jaw. Pain is still moderate, just waiting for the codeine to kick in and trying to get some more sleep. He is anxious to get out of here! :) Hoping he can continue sleeping well and that the next day goes well! He said he's ready to try getting up, since he wants to get out of here ASAP. Will keep you updated! He wants you all to know he appreciates everything and thanks for the kind words.
4 hours ago
he's pretty miserable but the pain meds are hopefully starting to kick in. the nurse said she'd leave him alone for a bit, so I'm going to try to get some sleep too :) (Charles Horn)
about an hour ago
Poor boy is in lots of pain. Ate a little scrambled eggs. Or should I say swallowed. Got some more pain meds but they haven't helped yet. He's hot but his temp read OK. His right eye is a bit droopy, but he can open it OK when he tries, he said it's just easier not to, so most of the time he opens just his left eye or mostly the left and a little of the right. The whole right side of his head is in a LOT of pain.... (Charles Horn)
about an hour ago
Oh, Dr. Al-Mefty....
His nurse Jean was nice, said she would leave him alone for a bit and let him rest and help the pain subside a bit. That only lasted maybe a half hour and Dr. Al-Mefty showed up, and yeah we'd heard he likes to get his patients up and moving asap. He was all like "WAKE UP WAKE UP WAKE UP! WHAT ARE YOU DOING! GET UP! What is all this?! (Pointing to the catheter), get this out! Get him up, walk around! Get up get up! You got to go home, get up!" Haha, he's a crazy guy. That was all with a smile on his face, not that he was being a jerk or anything. They have him in to be moved to the regular floor once a bed opens up, and they want to get him up and walking around. The nurse was just shaking her head about the doctor, and we were just laughing. He just kept saying "You're OK, we're done, you're good you're good, get up!" Oh goodness :) He is pushy and stubborn, but he's a nice guy, he's quite likeable even though he's a bit weird and not the most personable. He does have a little of the cute little old man about him, I think because he smiles a lot. So Charlie is sitting up a bit, catheter gone, watching some Megamind. Jean said she'd leave him alone for a little bit before she tried making him get up, since the doctor left :) Charlie's mom should be here in a little while. Maybe he WILL be going home tomorrow... we'll see!
It prob also didn't help that I was also trying to sleep, had my hood of my sweater up over my head and over my eyes and the blanket over my head... it's cloudy out but it's bright! I could definitely still use some more sleep! Oh well!
And Charlie says, "don't drop the banana."
It prob also didn't help that I was also trying to sleep, had my hood of my sweater up over my head and over my eyes and the blanket over my head... it's cloudy out but it's bright! I could definitely still use some more sleep! Oh well!
And Charlie says, "don't drop the banana."
the next morning
Shift Change! Peppy Doctor (not sure her name, but oh is she peppy! saw her before the surgery too) came in and did the regular tests, said he did great. Met the new nurse. She left us with a menu, so I guess he can have breakfast! We picked out some soft stuff, hoping the nurse will call it in for him rather than making me do it... hey I'm not supposed to be here, that's a good excuse, right? Of course I will if I need to, but I don't think there's any rush to attempt to eat anything because his pain is pretty considerable at this time and he's definitely going to need some more meds and to get it down a lot to even THINK about trying to eat something! That is going to SUCK! Poor thing. Just got him some fresh ice... things are a bit hectic around here at the moment, the nurse isn't here... shift change and rounds and what not... the night nurse Jody was really nice, I think Charles is sad to see her go, he liked her. The new nurse said that he'd be getting his stuff taken out throughout this morning.. the catheter, the arterial line, etc. She also said they'd be getting him up. He's going to push through it I'm sure because he wants to get out of here as soon as possible. He's definitely worse for the wear though... he seems worse than last time, the pain is much more of a problem it seems to me at least. But it sounds like he's fallen back asleep now, so let's hope that no one comes to bother him for a little while! He's been hot, so I fanned him off a bit, and put my cold hands on his face. I'm sure the fresh ice will help with that issue as well. No other interesting news to report. Will let you know when there is :)
~Sue
~Sue
Tuesday, September 6, 2011
The evening of the surgery...
I figured that I had a bit to write so that I would update here and just link it to facebook.
Charlie is doing OK. He was able to sleep for most of the time between 7:30 and 10. His pain level had been pretty good, but just recently started getting worse again.
There was a bit of an issue with his pain level. Charlie has a high pain tolerance as it is, so it was so hard to see him in so much pain. They had to cut through a lot of muscle to get in where they needed to, and that's what is causing so much pain. It hurts to move his mouth or his neck, and it just hurts in general. The nurse Gerry was trying to do all he could, but there was only so much he could do. He said he's the private, the doctor is the general, and he just takes the orders. He said that the only way he would be able to get pain meds would be if I talked to Dr. Al-Mefty myself about it. He said that in all of the doctor's time at the hospital, it has been his policy to not give pain meds. Gerry didn't know exactly why but just that it was the way he did things. Gerry said he's been on Dr. Al-Mefty's patients in days 2-3, but not day 1 before so hadn't been in this situation. I was pretty worried about having to call and talk to the doctor, but I told Charlie I would do anything I had to do so that he would be OK. It just broke my heart so much to see him in SO much pain! He said it was a 15 on a scale of 1-10. (no mom, he didn't go from a 2 to a 25...) They had paged a doctor around 7, and he finally showed up after 9. This doctor (I never remember names) was super nice. The other doctor that had been around earlier wasn't very personable, was rather rushed and pretty harsh and impatient on poor doped up Charlie. This second doctor was very friendly and calm. He introduced himself to me and explained to me why they can't give Charlie any heavy duty pain meds. He said that Al-Mefty doesn't let his patients have pain meds because he specializes in surgeries that other doctors can't do. He works in parts of the brain that other doctors won't touch and he is able to do that because he is extremely careful. And in order to be as careful as he can be, he can't let the patients have pain meds. The reason is that there are two types that he can take -- ones that increase bleeding, and ones that make you tired. He can't have anything that increases bleeding since we don't want his brain to bleed! And if he has meds that make him tired, they won't know if there is a bigger problem. The doctor said that the parts of the brain that Al-Mefty works with, are parts that are only able to announce that they're not ok by making the person really tired. Not in a need rest sleepy kind of way, but in a hey I'm really doped up can't respond to you kind of way. So if anyone thought he wasn't responding because of the meds and it was really because something was wrong, then something catastrophic could happen, (and probably has in the past). So, for his well-being, they have to accept that he will be in a bit more pain than would be preferable, so that they're sure he is OK and nothing serious is wrong. So that seemed acceptable to me. Though it may not have been so much if Charles was still in excruciating pain! Also, thankfully the doctor made a phone call, not sure if it was to Al-Mefty or not, but he got the OK to order some more codeine. The dose he had gotten before was just a one time dose that was allowed. But now he is able to get more. I'm not sure if the codeine is just a lower level pain med that it's OK, and they just can't give him morphine or whatever? I would hope so, because otherwise he'd be full of boloney. Hah. So he's got another dose of that I think, and he can have tylenol every 4 hours.
He's had a bit of an issue with blood pressure, the aterterial line and the cuff were varying. The cuff was saying 120s and the arterial line was saying up to 165, so the nurse had the doc check on that and they said to go by the cuff. So that's good that his blood pressure isn't actually that bad! They gave him lots of meds... multi vitamin, thiamine, folate, stool softener, his keppra... something else I think... His oxygen has thankfully been really good! He had the mask on when he first got here and it was really bugging him, so they put in the nose hose thing. He had that for a couple hours until Abby pointed out that it wasn't even really actually in his nose anymore. At that point his O2 was at 95, so they removed that and said they'd just monitor and hopefully he wouldn't need it, but might overnight. It has been pretty consistently 95 so that's really nice that he doesn't have to be annoyed with that too along with all his other crap!
ANOTHER awesome thing is that he got a bed extender! The nurse asked him if he wanted to be adjusted because he looked a bit cramped, he said yes. She asked how tall he was. I said I'd asked if he could get a bed extender when he was in pre-op. She said she could order one. 15 minutes later there it was! 10 seconds to pop in and he's got an extra foot of room! Awesome! Where was THAT last time?!?!?! Poor guy! So right now he's snuggled up with a couple blankets, snoozing away. That makes me VERY happy!!!
I am also SUPER grateful to these nurses right now! Apparently they recently changed the rules so that they do not allow overnight guests. Last time I had no problem staying here. However, the nurse said that since it was pretty quiet, it was OK with her if I stayed. She finally got me a recliner around 9:30. I was going to wait to get settled in until Charlie was doing better, so my overnight stuff is all still in my car. Well, it looks like I WON'T be going to get that stuff! The nurse told me that if anyone asked, I was not spending the night in the room. I guess a family member of the person in the next room asked to spend the night and they said no! I don't know if that person was too obnoxious or what the deal was, maybe they had a not as nice nurse, maybe they're being nicer to us because it's a crazier surgery, Dr. Al-Mefty is THE man, or the connection to Dr. Samuels, or WHAT, but I'm not looking a gift horse in the mouth! She said she might have to kick me out at some point, but please keep your fingers crossed that it doesn't have to come to that!!!! I REALLY want to be able to stay here with him!!!! Also, if you're ever here, please don't play the "I know someone who was allowed to" card... just be really nice! Maybe it's because I'm such a lovely lady, I don't know! But being sweet (and quiet) doesn't hurt!!!!
Ahh I probably have more I wanted to say but at this point I'm not sure. So I'm going to get comfy and see if I can get some sleep! Please keep thinking about Charles and hope for a great recovery, less pain, and no complications! And hope that I get to spend the night without a problem :-D
Love,
Sue
p.s. totally too tired to re-read this before I post, so if something doesn't make sense, oh well!!! :)
Charlie is doing OK. He was able to sleep for most of the time between 7:30 and 10. His pain level had been pretty good, but just recently started getting worse again.
There was a bit of an issue with his pain level. Charlie has a high pain tolerance as it is, so it was so hard to see him in so much pain. They had to cut through a lot of muscle to get in where they needed to, and that's what is causing so much pain. It hurts to move his mouth or his neck, and it just hurts in general. The nurse Gerry was trying to do all he could, but there was only so much he could do. He said he's the private, the doctor is the general, and he just takes the orders. He said that the only way he would be able to get pain meds would be if I talked to Dr. Al-Mefty myself about it. He said that in all of the doctor's time at the hospital, it has been his policy to not give pain meds. Gerry didn't know exactly why but just that it was the way he did things. Gerry said he's been on Dr. Al-Mefty's patients in days 2-3, but not day 1 before so hadn't been in this situation. I was pretty worried about having to call and talk to the doctor, but I told Charlie I would do anything I had to do so that he would be OK. It just broke my heart so much to see him in SO much pain! He said it was a 15 on a scale of 1-10. (no mom, he didn't go from a 2 to a 25...) They had paged a doctor around 7, and he finally showed up after 9. This doctor (I never remember names) was super nice. The other doctor that had been around earlier wasn't very personable, was rather rushed and pretty harsh and impatient on poor doped up Charlie. This second doctor was very friendly and calm. He introduced himself to me and explained to me why they can't give Charlie any heavy duty pain meds. He said that Al-Mefty doesn't let his patients have pain meds because he specializes in surgeries that other doctors can't do. He works in parts of the brain that other doctors won't touch and he is able to do that because he is extremely careful. And in order to be as careful as he can be, he can't let the patients have pain meds. The reason is that there are two types that he can take -- ones that increase bleeding, and ones that make you tired. He can't have anything that increases bleeding since we don't want his brain to bleed! And if he has meds that make him tired, they won't know if there is a bigger problem. The doctor said that the parts of the brain that Al-Mefty works with, are parts that are only able to announce that they're not ok by making the person really tired. Not in a need rest sleepy kind of way, but in a hey I'm really doped up can't respond to you kind of way. So if anyone thought he wasn't responding because of the meds and it was really because something was wrong, then something catastrophic could happen, (and probably has in the past). So, for his well-being, they have to accept that he will be in a bit more pain than would be preferable, so that they're sure he is OK and nothing serious is wrong. So that seemed acceptable to me. Though it may not have been so much if Charles was still in excruciating pain! Also, thankfully the doctor made a phone call, not sure if it was to Al-Mefty or not, but he got the OK to order some more codeine. The dose he had gotten before was just a one time dose that was allowed. But now he is able to get more. I'm not sure if the codeine is just a lower level pain med that it's OK, and they just can't give him morphine or whatever? I would hope so, because otherwise he'd be full of boloney. Hah. So he's got another dose of that I think, and he can have tylenol every 4 hours.
He's had a bit of an issue with blood pressure, the aterterial line and the cuff were varying. The cuff was saying 120s and the arterial line was saying up to 165, so the nurse had the doc check on that and they said to go by the cuff. So that's good that his blood pressure isn't actually that bad! They gave him lots of meds... multi vitamin, thiamine, folate, stool softener, his keppra... something else I think... His oxygen has thankfully been really good! He had the mask on when he first got here and it was really bugging him, so they put in the nose hose thing. He had that for a couple hours until Abby pointed out that it wasn't even really actually in his nose anymore. At that point his O2 was at 95, so they removed that and said they'd just monitor and hopefully he wouldn't need it, but might overnight. It has been pretty consistently 95 so that's really nice that he doesn't have to be annoyed with that too along with all his other crap!
ANOTHER awesome thing is that he got a bed extender! The nurse asked him if he wanted to be adjusted because he looked a bit cramped, he said yes. She asked how tall he was. I said I'd asked if he could get a bed extender when he was in pre-op. She said she could order one. 15 minutes later there it was! 10 seconds to pop in and he's got an extra foot of room! Awesome! Where was THAT last time?!?!?! Poor guy! So right now he's snuggled up with a couple blankets, snoozing away. That makes me VERY happy!!!
I am also SUPER grateful to these nurses right now! Apparently they recently changed the rules so that they do not allow overnight guests. Last time I had no problem staying here. However, the nurse said that since it was pretty quiet, it was OK with her if I stayed. She finally got me a recliner around 9:30. I was going to wait to get settled in until Charlie was doing better, so my overnight stuff is all still in my car. Well, it looks like I WON'T be going to get that stuff! The nurse told me that if anyone asked, I was not spending the night in the room. I guess a family member of the person in the next room asked to spend the night and they said no! I don't know if that person was too obnoxious or what the deal was, maybe they had a not as nice nurse, maybe they're being nicer to us because it's a crazier surgery, Dr. Al-Mefty is THE man, or the connection to Dr. Samuels, or WHAT, but I'm not looking a gift horse in the mouth! She said she might have to kick me out at some point, but please keep your fingers crossed that it doesn't have to come to that!!!! I REALLY want to be able to stay here with him!!!! Also, if you're ever here, please don't play the "I know someone who was allowed to" card... just be really nice! Maybe it's because I'm such a lovely lady, I don't know! But being sweet (and quiet) doesn't hurt!!!!
Ahh I probably have more I wanted to say but at this point I'm not sure. So I'm going to get comfy and see if I can get some sleep! Please keep thinking about Charles and hope for a great recovery, less pain, and no complications! And hope that I get to spend the night without a problem :-D
Love,
Sue
p.s. totally too tired to re-read this before I post, so if something doesn't make sense, oh well!!! :)
In Neuro-ICU
So, I don't know if anyone actually reads this... if you are and you're not on facebook, please just friend me for detailed updates! I'll maybe update more in length here at some point, but right now that's not going to happen and it's WAY easier to just update on facebook rather than here....
Surgery is now
My aplogies for not updating this summer!!!
It's Tuesday September 6th, 2011 and Charles is currently almost through his surgery. He is having surgery to attempt to remove the tumor, or at least debulk it as much as possible. I will add additional details later. I have notes from his previous appointments for people who like the details and I hope to get them up soon, but again, I've been saying that for months! :)
Please keep Charles in your thoughts and prayers!
Much Love,
Sue W.
It's Tuesday September 6th, 2011 and Charles is currently almost through his surgery. He is having surgery to attempt to remove the tumor, or at least debulk it as much as possible. I will add additional details later. I have notes from his previous appointments for people who like the details and I hope to get them up soon, but again, I've been saying that for months! :)
Please keep Charles in your thoughts and prayers!
Much Love,
Sue W.
Friday, June 10, 2011
Appt w/ Dr. Al-Mefty
Charles just heard back from Dr. Al-Mefty's office. He is the neurosurgeon at Brigham & Womens we were referred to. He has an appointment Friday June 24th at 9AM. We'll let you know how it goes!
Monday, June 6, 2011
Appt with Neuro-Ophalmologist
This morning Charles had his appointment with Dr. Prasad, neuro-opthalmologist. The doctor was really great, he was very thorough and explained everything well.
Charles first went in for a test of his peripheral vision, in which he had to press a button whenever he saw a light flash. He did it with each eye and said that he definitely saw a lot more flashes of light with his left eye than his right!
Dr. Prasad then had him read a traditional eye chart, which was much easier with the left eye than the right. He did some looking around and having Charles follow him, shining stuff in his eyes, wiggling his fingers, all that. He then did a color blindness test which had interesting results. Charles had a much harder time deciphering the numbers with his right eye. He is not color-blind and still got a lot of them correct, but it was MUCH harder for him to do. He had not even realized that he had any problem with differentiating colors. Mostly it's because his eye doesn't really focus on much and he has to look around because he can only see out of a small portion of his eye. He also did a depth perception test which thankfully he did very well with.
The results were that things look really good. His eyesight is 20/40, and he has some problem with color. When the doctor looked in Charles' eyes, he could see that the left nerve was healthy, but that the right nerve was a pale color, which happens when it is damaged. There is nothing to be done to reverse this damage. There are studies involving stem cells and what not looking to see if there is any way to revive damaged nerves, but there is nothing that they can do now.
His reccommendation was to of course go see the other doctors and get all of the information that we can and make our decision with the most information possible. But he said to be skeptical of both of them and don't jump into any decisions that could do him harm. From the point of view of the neurology department, as long as Charles' eyesight isn't getting worse, they don't see any reason to do radiation or surgery. We also met with the Chair of the Neurology Department, who is the husband of one of Suzanne's childhood friends. He also gave his opinion that he thinks Charles should wait it out. He said that meningiomas are benign and aren't going to kill you, so if it's not causing vision problems then why do something that could be harmful.
Dr. Prasad also said to be skeptical of what the radiation oncologists will say because while they do narrow down where the radiation is exposed to, they sometimes overstate how precise it is. In addition, Dr. Samuels said that sometimes a neurosurgeon will try too hard to get all of the tumor, and in turn do more damage to the optic nerve than if they had just planned to leave more of the tumor there. Dr. Prasad said that he doesn't see a true representation of the patients and that there are sure more people than not that are OK, but in his work he sees many patients who have had damage done to their optic nerves because of having radiation or surgery.
Charles will be going back in September for another exam to see if his sight has changed at all since today.
While we appreciate their point of view and think that it is important to have and to consider, we will of course see the other doctors and take it all into consideration. We are both wary about the concept of not doing anything- especially Charles. As far as he feels, waiting is what made things get so bad in the first place. If he had gotten the tumor out earlier, he wouldn't have even had any problem with the eye sight, the doctor may have been able to remove all of the tumor and he wouldn't even have to be dealing with any of this anymore. And there's also the fact that if he waits and the tumor keeps growing, it could potentially grow to be quite larger before there are any vision problems and at that point he might have to do Surgery AND radiation, or if he did radiation, it would be even more dangerous because there would be more tumor to irradiate. The idea that he could do nothing and be fine is an awesome one, but neither of us think that's really going to happen. With how quickly his tumor has grown in comparison to those people who have them for decades with little to no growth make us more likely to think that it's inevitably going to grow and cause more problems. There's also the fact that if it keeps growing Charles would be likely to have another seizure. He has been lucky so far in that he has been home when he has had his seizures, but he could definitely be unlucky to have one while driving or at work (hello fire and knives!).
So, that's what we know for now. He still needs to set up the appointments with Dr. Al-Mefty and Dr. Shih at Mass General. We'll let you know more when we know more! Until then, thanks for your love and support :)
Charles first went in for a test of his peripheral vision, in which he had to press a button whenever he saw a light flash. He did it with each eye and said that he definitely saw a lot more flashes of light with his left eye than his right!
Dr. Prasad then had him read a traditional eye chart, which was much easier with the left eye than the right. He did some looking around and having Charles follow him, shining stuff in his eyes, wiggling his fingers, all that. He then did a color blindness test which had interesting results. Charles had a much harder time deciphering the numbers with his right eye. He is not color-blind and still got a lot of them correct, but it was MUCH harder for him to do. He had not even realized that he had any problem with differentiating colors. Mostly it's because his eye doesn't really focus on much and he has to look around because he can only see out of a small portion of his eye. He also did a depth perception test which thankfully he did very well with.
The results were that things look really good. His eyesight is 20/40, and he has some problem with color. When the doctor looked in Charles' eyes, he could see that the left nerve was healthy, but that the right nerve was a pale color, which happens when it is damaged. There is nothing to be done to reverse this damage. There are studies involving stem cells and what not looking to see if there is any way to revive damaged nerves, but there is nothing that they can do now.
His reccommendation was to of course go see the other doctors and get all of the information that we can and make our decision with the most information possible. But he said to be skeptical of both of them and don't jump into any decisions that could do him harm. From the point of view of the neurology department, as long as Charles' eyesight isn't getting worse, they don't see any reason to do radiation or surgery. We also met with the Chair of the Neurology Department, who is the husband of one of Suzanne's childhood friends. He also gave his opinion that he thinks Charles should wait it out. He said that meningiomas are benign and aren't going to kill you, so if it's not causing vision problems then why do something that could be harmful.
Dr. Prasad also said to be skeptical of what the radiation oncologists will say because while they do narrow down where the radiation is exposed to, they sometimes overstate how precise it is. In addition, Dr. Samuels said that sometimes a neurosurgeon will try too hard to get all of the tumor, and in turn do more damage to the optic nerve than if they had just planned to leave more of the tumor there. Dr. Prasad said that he doesn't see a true representation of the patients and that there are sure more people than not that are OK, but in his work he sees many patients who have had damage done to their optic nerves because of having radiation or surgery.
Charles will be going back in September for another exam to see if his sight has changed at all since today.
While we appreciate their point of view and think that it is important to have and to consider, we will of course see the other doctors and take it all into consideration. We are both wary about the concept of not doing anything- especially Charles. As far as he feels, waiting is what made things get so bad in the first place. If he had gotten the tumor out earlier, he wouldn't have even had any problem with the eye sight, the doctor may have been able to remove all of the tumor and he wouldn't even have to be dealing with any of this anymore. And there's also the fact that if he waits and the tumor keeps growing, it could potentially grow to be quite larger before there are any vision problems and at that point he might have to do Surgery AND radiation, or if he did radiation, it would be even more dangerous because there would be more tumor to irradiate. The idea that he could do nothing and be fine is an awesome one, but neither of us think that's really going to happen. With how quickly his tumor has grown in comparison to those people who have them for decades with little to no growth make us more likely to think that it's inevitably going to grow and cause more problems. There's also the fact that if it keeps growing Charles would be likely to have another seizure. He has been lucky so far in that he has been home when he has had his seizures, but he could definitely be unlucky to have one while driving or at work (hello fire and knives!).
So, that's what we know for now. He still needs to set up the appointments with Dr. Al-Mefty and Dr. Shih at Mass General. We'll let you know more when we know more! Until then, thanks for your love and support :)
A couple more details from the radiation oncology appointment
Just a couple more details that I left out when I made my last update about the radiation oncology appointment.
1) The size of Charlie's tumor is 1.4cm at its longest. It's more of an oblong shape, it's not a sphere, so that's where it's biggest. For reference, his tumor when they removed it was 2.4cm x 2.4cm x 1.5 cm (I think). So it's considerably smaller, BUT some peoples tumors are measured in MMs...
2) Dr. Alexander DID say that the risk of complete blindness due to radiation was RARE, but possible.
1) The size of Charlie's tumor is 1.4cm at its longest. It's more of an oblong shape, it's not a sphere, so that's where it's biggest. For reference, his tumor when they removed it was 2.4cm x 2.4cm x 1.5 cm (I think). So it's considerably smaller, BUT some peoples tumors are measured in MMs...
2) Dr. Alexander DID say that the risk of complete blindness due to radiation was RARE, but possible.
Saturday, June 4, 2011
Details on the appointment with the Radiation Oncologist
Sorry for the delay on posting the details of the appointment!
I was happy that the Dr. Alexander confirmed what I had learned through my research and that he was on the same page with what I was thinking. What the radiation oncology department at Brigham and Womens can offer is either stereotactic radiosurgery (SRS), or Intensity Modulated Radiation Therapy (IMRT).
SRS, also known as Gamma Knife or Cyber Knife involves a 1 day outpatient treatment that involves higher levels of radiation exposure at one time. The benefit of this clearly is that it is over after one day. However, SRS is not appropriate for tumors that are located where Charlie's tumor is because it is on the optic nerve. In order to keep his vision safe, the level of radiation must be lower than what is involved in SRS.
IMRT is the radiation at Brigham and Womens that Charles could do. IMRT allows doctors to customize the radiation dose by modulating, or varying, the amount of radiation given to different parts of the treatment area. This modulation is done in highly accurate, three-dimensional detail, according to the shape, size, and location of the tumor. IMRT uses a linear accelerator equipped with a multi-leaf collimator to shape the radiation beams and vary their intensity. This allows the radiation to be very precisely targeted to the tumor or area at risk, while minimizing the radiation to normal surrounding organs.
The risks to this radiation is that in order to irradiate his tumor, radiation would be exposed to his optic chiasm, which is the area where the optic nerves meet. Too much radiation could involve the complete and total loss of his sight. I'm not entirely sure how likely that would be, they didn't give odds on that. In addition, the other risk to radiation is the possibility that the radiation exposure could result in cancer in the long term. We all know that exposure to radiation can cause cancer, and while the odds are low, there is definitelty a risk to consider in choosing any type of radiation. If Charles was 60+, they wouldn't hesitate to use radiation, but because he is so young, he has much more opportunity to develop radiation related cancer. Dr. Alexander, the radiation oncologist definitely wanted to get across that this is not ideal for Charles and while it may work, there are definite risks involved.
However, Dr. Alexander eagerly recommended Proton Beam radiation at Mass General Hospital. In my research, I had pretty much figured that if Charles was indeed not eligible for SRS, then Proton Beam would be a better option than IMRT. While similar, Proton Beam radiation allows for more precision and less radiation exposure to healthy tissue. If Charles does have radiation at any point, it is most likely going to be Proton Beam. There are only 9 centers in the country that have Proton Beam technology, and we are fortunate enough to live an hour away from one of them!
Charles' other option besides Proton Beam radiation is another surgery. Charles really doesn't want to go through surgery again. He hates having to stay in hospitals and the recovery was hard on him. Yes, it went well in the fact that he didn't have any complications other than his sight, but it was still hard to go through and he really doesn't want to go through it again. Dr. Golby said that if he were to do surgery, she would have him go to Dr. Ossama Al-Mefty, who Dr. Alexander called "a magician", he said "there are surgeons, and then there is this guy, he's a magician". He specializes in exactly what Charles has- a skull base meningioma. Apparently, he would do the best job. Dr. Golby said that he was the best doctor for this in the world.
HOWEVER, Dr. Golby does not believe that Dr. Al-Mefty would be able to get all of the tumor out. If he can't get all of the tumor out, Charles may likely have to go through radiation anyway, either immediately after surgery, or after some time. Since his tumor reproduces more rapidly than the average Grade I tumor, it would be more likely to grow again if not all of the tumor is removed. So Dr. Golby thinks that if he has to have radiation anyway, then why go through surgery a second time in addition. However, if there is a chance that all of the tumor could be removed, then we should consider it. Based on what Dr. Alexander said about radiation, surgery might be a better option because of the risk that the radiation will render him completely blind. Even though Charles said that he could make it as "The Blind Chef" no one wants that to happen. We will have to get a lot of information from Mass General on the risks related with the Proton Beam radiation. In addition, we will see what Dr. Al-Mefty has to say.
I think it's a good idea to really pay attention to any negatives that each doctor say about their own specialty. Dr. Alexander's concerns about radiation are something I take very seriously, however Dr. Golby's opinion on surgery are also very important. The appointment with Dr. Alexander was good in that it narrowed it down to two possibilities - Proton Beam at Mass General, or Surgery with Dr. Al-Mefty at Brigham & Womens. We will have to meet with them to know what to decide on.
When I was researching after the appointment with Dr. Golby, I really got held up on the concept of Charles getting cancer in the long term after irradiating the tumor. This is especially painful to think about because I can't help but think of Jeremy and everything that he and his family have gone through due to his brain cancer. Charles and I love each other so much, and whatever will give us the best chance to have a long, happy, healthy life together, is what he will decide to do. It definitely didn't lessen my concern about cancer meeting
with Dr. Alexander because he thought it was something to definitely consider in the decision. Even if the risk is low, he put a lot of emphasis on the fact that having surgery is not going to do anything to possibly cause cancer in 15 years.
Before meeting with Dr. Alexander, Charles didn't really want to consider surgery, but now he said that he will, so we will meet with them and see where we go from there.
Please let me know if you have any questions or if it seems like I left something out. Since it's been a few days, I very well likely did.
I was happy that the Dr. Alexander confirmed what I had learned through my research and that he was on the same page with what I was thinking. What the radiation oncology department at Brigham and Womens can offer is either stereotactic radiosurgery (SRS), or Intensity Modulated Radiation Therapy (IMRT).
SRS, also known as Gamma Knife or Cyber Knife involves a 1 day outpatient treatment that involves higher levels of radiation exposure at one time. The benefit of this clearly is that it is over after one day. However, SRS is not appropriate for tumors that are located where Charlie's tumor is because it is on the optic nerve. In order to keep his vision safe, the level of radiation must be lower than what is involved in SRS.
IMRT is the radiation at Brigham and Womens that Charles could do. IMRT allows doctors to customize the radiation dose by modulating, or varying, the amount of radiation given to different parts of the treatment area. This modulation is done in highly accurate, three-dimensional detail, according to the shape, size, and location of the tumor. IMRT uses a linear accelerator equipped with a multi-leaf collimator to shape the radiation beams and vary their intensity. This allows the radiation to be very precisely targeted to the tumor or area at risk, while minimizing the radiation to normal surrounding organs.
The risks to this radiation is that in order to irradiate his tumor, radiation would be exposed to his optic chiasm, which is the area where the optic nerves meet. Too much radiation could involve the complete and total loss of his sight. I'm not entirely sure how likely that would be, they didn't give odds on that. In addition, the other risk to radiation is the possibility that the radiation exposure could result in cancer in the long term. We all know that exposure to radiation can cause cancer, and while the odds are low, there is definitelty a risk to consider in choosing any type of radiation. If Charles was 60+, they wouldn't hesitate to use radiation, but because he is so young, he has much more opportunity to develop radiation related cancer. Dr. Alexander, the radiation oncologist definitely wanted to get across that this is not ideal for Charles and while it may work, there are definite risks involved.
However, Dr. Alexander eagerly recommended Proton Beam radiation at Mass General Hospital. In my research, I had pretty much figured that if Charles was indeed not eligible for SRS, then Proton Beam would be a better option than IMRT. While similar, Proton Beam radiation allows for more precision and less radiation exposure to healthy tissue. If Charles does have radiation at any point, it is most likely going to be Proton Beam. There are only 9 centers in the country that have Proton Beam technology, and we are fortunate enough to live an hour away from one of them!
What Is Proton Beam Therapy?
The characteristics of proton beam therapy enable physicians to deliver higher, more conformed doses to tumor volume while almost completely sparing normal healthy tissue.
Protons are hydrogen atoms whose electrons have been removed. Proton beam therapy uses a special machine called a cyclotron or synchrotron to energize protons. Protons are extracted from the cyclotron or synchrotron and directed with magnetic fields to the tumor. The depth of penetration of the protons is related to their energy and can be precisely controlled to match the location of the tumor.
Protons deliver the majority of their energy at a very narrow area within the body. This unique dose delivery property of protons is known as the Bragg Peak. We can manipulate the Bragg Peak area to deliver the desired radiation dose to the tumor itself without any exit dose beyond the tumor. Conventional external beam radiation therapy uses photons or x-rays that enter and exit through the body. The special properties of protons generally reduce the radiation dose to the uninvolved normal tissues surrounding the tumor.
Principles of Proton Beam Therapy
Irregularly shaped lesions located near critical structures, tumors in children, and large tumors near any critical organ are well suited for proton beam therapy. Protons have a physical advantage over gamma rays and x-rays when it comes to sparing normal tissues. Protons deposit most of their radiation energy in what is known as the Bragg Peak, which occurs at the point of greatest penetration of the protons in tissue. The exact depth to which protons penetrate, and at which the Bragg Peak occurs, is dependent on the energy or modulation of the proton beam. This energy can be very precisely controlled to place the Bragg Peak within a tumor or other tissues that are targeted to receive the radiation dose. Because the protons are absorbed at this point, normal tissues beyond the target receive very little or no radiation. Proton energy can be adjusted to match the depth of the target with a sharp drop in dose beyond the Bragg Peak.
Tumors can have very irregular shapes and can be located close to critical organs. Every patient’s tumor shape, size and location are unique. Patient specific hardware, which helps sculpt the proton beam, is customized to maximize the dose to the tumor while minimizing the dose to normal structures. The shaping of the proton beam can also be controlled by magnetically scanning across the tumor volume. Aiming proton beams, each with customized field shaping, from various directions further ensures that the dose to normal tissues is reduced as much as possible, therefore reducing the risk of treatment related complications.
Charles' other option besides Proton Beam radiation is another surgery. Charles really doesn't want to go through surgery again. He hates having to stay in hospitals and the recovery was hard on him. Yes, it went well in the fact that he didn't have any complications other than his sight, but it was still hard to go through and he really doesn't want to go through it again. Dr. Golby said that if he were to do surgery, she would have him go to Dr. Ossama Al-Mefty, who Dr. Alexander called "a magician", he said "there are surgeons, and then there is this guy, he's a magician". He specializes in exactly what Charles has- a skull base meningioma. Apparently, he would do the best job. Dr. Golby said that he was the best doctor for this in the world.
HOWEVER, Dr. Golby does not believe that Dr. Al-Mefty would be able to get all of the tumor out. If he can't get all of the tumor out, Charles may likely have to go through radiation anyway, either immediately after surgery, or after some time. Since his tumor reproduces more rapidly than the average Grade I tumor, it would be more likely to grow again if not all of the tumor is removed. So Dr. Golby thinks that if he has to have radiation anyway, then why go through surgery a second time in addition. However, if there is a chance that all of the tumor could be removed, then we should consider it. Based on what Dr. Alexander said about radiation, surgery might be a better option because of the risk that the radiation will render him completely blind. Even though Charles said that he could make it as "The Blind Chef" no one wants that to happen. We will have to get a lot of information from Mass General on the risks related with the Proton Beam radiation. In addition, we will see what Dr. Al-Mefty has to say.
I think it's a good idea to really pay attention to any negatives that each doctor say about their own specialty. Dr. Alexander's concerns about radiation are something I take very seriously, however Dr. Golby's opinion on surgery are also very important. The appointment with Dr. Alexander was good in that it narrowed it down to two possibilities - Proton Beam at Mass General, or Surgery with Dr. Al-Mefty at Brigham & Womens. We will have to meet with them to know what to decide on.
When I was researching after the appointment with Dr. Golby, I really got held up on the concept of Charles getting cancer in the long term after irradiating the tumor. This is especially painful to think about because I can't help but think of Jeremy and everything that he and his family have gone through due to his brain cancer. Charles and I love each other so much, and whatever will give us the best chance to have a long, happy, healthy life together, is what he will decide to do. It definitely didn't lessen my concern about cancer meeting
with Dr. Alexander because he thought it was something to definitely consider in the decision. Even if the risk is low, he put a lot of emphasis on the fact that having surgery is not going to do anything to possibly cause cancer in 15 years.
Before meeting with Dr. Alexander, Charles didn't really want to consider surgery, but now he said that he will, so we will meet with them and see where we go from there.
Please let me know if you have any questions or if it seems like I left something out. Since it's been a few days, I very well likely did.
Thursday, June 2, 2011
Radiation Oncology appointment @ BWH
This morning we left the house just before 7 to get to a 9am appointment at Brigham & Women's Hospital in Boston. Thankfully the appointment was ACTUALLY at 9:30 (or at least we think) because we didn't actually get in the building until 8:54 :) Stupid traffic! It should only take about an hour...
We met with Dr. Alexander, Radiation Oncologist, and the nurse on the case, Sheila - who were both great. After some questions and a routine neurological examination, they got down to business.
Dr. Alexander had discussed Charles' case with the tumor board or something like that, and Dr. Golby. The general consensus was that Charles was not a candidate for stereotactic radiosurgery, and that while he could get radiation at BWH, his best options are either A) another craniotomy, this time by Dr. Al-Mefty, or B) Proton Beam radiation at Massachusetts General Hospital. This went along with what I had been thinking after gathering a lot of information. We will be making appointments with each to thoroughly discuss details and options and make the decision from there. Charles really does not want to have to go through surgery again, but if that ends up being the best option, he will. Dr. Alexander seemed to be more optimistic about surgery than Dr. Golby was... which is interesting since Dr. Golby is a neurosurgeon and Dr. Alexander is not! Or rather, he seemed more concerned with the negative aspects of radiation, which I really appreciated. They both have their pros and cons and we don't have enough information now to know what will be the best option for him at this time. We are hoping to get appointments with both Dr. Al-Mefty and Dr. Shih at MGH very soon.
Charles also has an appointment at BWH Monday morning at 9 with Dr. Prasad, a neuro-ophthalmologist.
That's the summary. I will post again later with the details for those who want to know them!
Love,
Sue
We met with Dr. Alexander, Radiation Oncologist, and the nurse on the case, Sheila - who were both great. After some questions and a routine neurological examination, they got down to business.
Dr. Alexander had discussed Charles' case with the tumor board or something like that, and Dr. Golby. The general consensus was that Charles was not a candidate for stereotactic radiosurgery, and that while he could get radiation at BWH, his best options are either A) another craniotomy, this time by Dr. Al-Mefty, or B) Proton Beam radiation at Massachusetts General Hospital. This went along with what I had been thinking after gathering a lot of information. We will be making appointments with each to thoroughly discuss details and options and make the decision from there. Charles really does not want to have to go through surgery again, but if that ends up being the best option, he will. Dr. Alexander seemed to be more optimistic about surgery than Dr. Golby was... which is interesting since Dr. Golby is a neurosurgeon and Dr. Alexander is not! Or rather, he seemed more concerned with the negative aspects of radiation, which I really appreciated. They both have their pros and cons and we don't have enough information now to know what will be the best option for him at this time. We are hoping to get appointments with both Dr. Al-Mefty and Dr. Shih at MGH very soon.
Charles also has an appointment at BWH Monday morning at 9 with Dr. Prasad, a neuro-ophthalmologist.
That's the summary. I will post again later with the details for those who want to know them!
Love,
Sue
5555555555555555555555555555555555555555t
That was our cat, Emmy saying hi. She's currently licking macaroni & cheese bits off of a plate on my desk... she loves carbs.
Holy Tornadoes, Batman!
If anyone is/was worried, we are fine and weren't affected much by the weather yesterday. I was of course very worried and was watching the reports closely at work in Framingham because it looked like the tornadoes paths were going to be very close to our apartment in Grafton. Thankfully for us the worst of it stayed a little south of us and the storm had weakened enough by the time it got here. There was a confirmed tornado touch down in Oxford which is two towns west of us. Charles was busy at work and didn't have any idea how bad things were! We're both very happy that everyone that we know are OK and wish the best for those who have been affected. We went to college in Springfield and still have several friends in the city and the area. I'm hoping to be able to get out there and volunteer some time soon.
Tuesday, May 31, 2011
Appointment Thursday 6/2
Charles has an appointment with the radiation oncologist on Thursday 6/2. It's at 9am.. I'm so not looking forward to having to sit in rush hour morning traffic into Boston! Yuck!! Also getting up at like 6AM is not cool... oh well, at least Charles won't have to take time off of work, which is important. Anyway, we're meeting with Dr. Alexander at Brigham & Womens. They referred us to Dr. Weiss who I can see based on the doctor profiles on their website is their brain tumor person, but she's out of the office this week and we want to get information ASAP, so we're meeting with Dr. Alexander this week and we will see what happens from there! I will update hopefully on Thursday with what we find out.
Thursday, May 26, 2011
Please Help Fund Meningioma Research!
Here's an email I received from Meningioma Mommas. Please consider making a donation/cookbook purchase to help find answers for Charles and others like him.
As you are already well aware, May is National Brain Tumor Awareness Month and for the last 25 days, Meningioma Mommas has been running a “Mmm Mmm Mmm Meningioma Match” campaign made possible by the generous support of the Gilkison Family Foundation.
For every “Feeding the Mind & Soul Cookbook” (a collaboration of our very own survivors and their caregivers best recipes), purchased, the Gilkison Family Foundation is making a $25 match. This has been an unbelievable opportunity for Meningioma Mommas to potentially donate $20,000 to meningioma specific research, which is the only research we fund.
To achieve this goal, all we have to do is find cooks and kitchens for 400 cookbooks.
As of today, we’ve sold 83 cookbooks—nearly 25% of our target goal.
We only need to sell 317 more by June 1!
I’d like to ask the Gilkison Family Foundation to write a check for $10,000 instead of $2,075, which is currently the amount I’ll be asking of them.
I am more than grateful to those who’ve already participated in the match and extend my gratitude in advance to the rest who I’m hoping will consider helping.
Cookbooks are $25 each.
You may purchase a cookbook via our PayPal link:
http://www.meningiomamommas.org/mommas-merchandise
Or send a check (which still counts even if it arrives after June 1!) made payable to Meningioma Mommas to:
Meningioma Mommas
9249 S. Broadway Blvd.
Unit 200-PMB#240
Highlands Ranch, CO 80129
With every purchased cookbook, a $50 contribution will be made to fund ongoing research for an ongoing incurable disease.
Thank you!
--
Best wishes,
Liz Holzemer
Founder, Meningioma Mommas
&
Lindy Klarenbeek
Executive Director, Meningioma Mommas
As you are already well aware, May is National Brain Tumor Awareness Month and for the last 25 days, Meningioma Mommas has been running a “Mmm Mmm Mmm Meningioma Match” campaign made possible by the generous support of the Gilkison Family Foundation.
For every “Feeding the Mind & Soul Cookbook” (a collaboration of our very own survivors and their caregivers best recipes), purchased, the Gilkison Family Foundation is making a $25 match. This has been an unbelievable opportunity for Meningioma Mommas to potentially donate $20,000 to meningioma specific research, which is the only research we fund.
To achieve this goal, all we have to do is find cooks and kitchens for 400 cookbooks.
As of today, we’ve sold 83 cookbooks—nearly 25% of our target goal.
We only need to sell 317 more by June 1!
I’d like to ask the Gilkison Family Foundation to write a check for $10,000 instead of $2,075, which is currently the amount I’ll be asking of them.
I am more than grateful to those who’ve already participated in the match and extend my gratitude in advance to the rest who I’m hoping will consider helping.
Cookbooks are $25 each.
You may purchase a cookbook via our PayPal link:
http://www.meningiomamommas.org/mommas-merchandise
Or send a check (which still counts even if it arrives after June 1!) made payable to Meningioma Mommas to:
Meningioma Mommas
9249 S. Broadway Blvd.
Unit 200-PMB#240
Highlands Ranch, CO 80129
With every purchased cookbook, a $50 contribution will be made to fund ongoing research for an ongoing incurable disease.
Thank you!
--
Best wishes,
Liz Holzemer
Founder, Meningioma Mommas
&
Lindy Klarenbeek
Executive Director, Meningioma Mommas
Sunday, May 22, 2011
A Regretful Update
It has been lovely not having anything to update this blog with in the past 15 months...
Things have been fantastic for us since Charles has recovered from his surgery. His recovery was swift and he has been much healthier. He has even lost 56 pounds since his surgery! AWESOME!!! In addition, we have had a lovely year plus living together(now in a nicer apartment!), and we even got engaged in September! Woohoo! :) The wedding is planned for next June (2012).
We haven't been thinking too much about his tumor, but it has always been in the back of our minds. The tumor/surgery did have an effect on his sight in his right eye which is permanent. He cannot see far to the right, so basically he has no peripheral vision on the right. He has been accommodating for it when he drives etc. to make sure he has been safe. It is a nuisance, but overall, not bad if it's the only lasting effect from the ordeal. He has been on his Keppra since his initial seizure in 2008, and has not had any seizures since the one before the surgery.
Charlie was supposed to have his annual MRI in January, but when they called to confirm the appointment, he was informed that his health insurance no longer worked with that hospital, so we had to postpone the MRI. It took a couple months for him to get his health insurance changed so that he could still go to Brigham & Womens. Once that was done, his MRI and appointment were scheduled for May 14th and 20th.
On the 20th we met with Dr. Golby, who has taken over Charles' case since Dr. Black's retirement. She was very to the point and informative. She was curious if there had been any cause that we knew of as for why as a young healthy male he would have gotten a meningioma, but we have no idea.. She did a test to see how bad Charlie's vision is impaired and discussed his Keppra dosage.
And then she told us the news.. the tumor has begun growing back.
Thankfully, it is still very small, she showed that it was about the size of the tip of her pinkie finger. So the sooner it is treated the better.
We wondered if it would have been better to have the MRI done 4 months ago, but it's also possible that 4 months ago it would have been too small to show on the MRI and we wouldn't know about it at all for another year, so I think that we are lucky to have found it now so that it can be taken care of. We were told when they got the results from the pathology that the cells were somewhat rapidly reproducing, so unfortunately there was a higher risk of recurrence, especially since it had not been completely resected. We remained positive in hopes that Kirby would not attempt a comeback.
Dr. Golby said the options are surgery or radiation. Her recommendation is radiation but we should look into whatever we want whether it be one or both. She said that as far as surgery goes, she would send is to the BEST neurosurgeon for skull base tumors in the WORLD. He probably would be optimistic about the results of surgery, however, while he would probably not tell us, he would not be able to get all of the tumor. The risk of surgery is of course all the risks of brain surgery- infection, fluid leakage, the increase in scar tissue given it would be the second surgery, and the likelihood that Charles would lose all sight in his right eye. She said that since he would not be able to get all of the tumor out with the surgery, likely Charles would then still need radiation.
The risks with radiation increase with the size of the area needing to be treated. So if Charles' tumor was large, maybe surgery would be a better option and then radiology later. However, since it is still very small, the radiation shouldn't be that much, and it's better to get it done ASAP. It seemed to both of us that from the information she gave, that it would make sense to go ahead and try the radiation. However, she would not tell us more about the radiation and couldn't answer any questions, she told us to discuss it with the radiologist. Since the appointment was Friday afternoon and we finally got in to see her 2 hours after the scheduled appointment, they were unable to set up appointments for him (she had been called into the OR, so I hope that person is doing OK because they were obviously the priority!). We expect to hear back from them early this week. They are going to set up appointments with the radiologist and the neuro-ophthalmologist for the same day. Thankfully Charles still brought up the idea of going to see the neuro-ophthalmologist, Dr. Golby said it was a good idea in order to get a base-line of how his eye is before treatment.
I plan to do plenty of research myself. I plan to reach out again to the wonderful people at Meningioma Mommas who were very supportive the first time around and I still feel bad about not updating and putting the word out there that surgery can go well and recovery can be (relatively) easy. I know I had read on there at one point that it was a good idea to have a cognitive test done to be able to measure any sort of cognitive impairment that can occur when a tumor is in the frontal lobe. I don't remember if this related to surgery, radiation, or both, but I will keep it in mind.
Charlie is doing ok. He just keeps saying that he is not worried and he never has been. He is just taking everything in stride as it comes, and staying positive, which is what helped him through this journey thus far. I will try to stay positive and supportive, but I can't help but show how upset I am. I started crying during the appointment and was unable to talk about it for a while because I knew I would just break down... I haven't really had a good break down about it yet, so I imagine it is due to come soon... haha. But, that's OK. I don't know at all the time frame for this, but I hope it will not interfere with the wedding and that he will be back to good health for then. He deserves that.
I will continue to update this blog with information as we receive it. We welcome any messages. Please keep Charlie in your mind and wish the best for him.
A recent picture of Charlie with his nephew :)
As always, you can support Charlie and people like him by donating to help fund research into meningiomas, the most prevalent and yet underfunded type of primary brain tumor.
Learn more, get support, and make a donation. - Meningioma Mommas
In addition, I just wanted to note my condolences to the Reichman family and that my thoughts are with them. Jeremy was a co-worker of mine who recommended Dr. Black to us. He had been diagnosed with brain cancer (not a meningioma) about 6 months after Charles was diagnosed. He championed through chemo, radiation, medications, clinical trials and surgery and had been doing well. Unfortunately the tumor quickly grew back and began pressing on his brain stem, and there was nothing left for them to do. He passed away on April 6th. He was upbeat and optimistic throughout and beat the odds that were against him and was able to have a couple extra years with his children and family. I'm sure that I will continue to think of him often, and am humbled by his memory.
Things have been fantastic for us since Charles has recovered from his surgery. His recovery was swift and he has been much healthier. He has even lost 56 pounds since his surgery! AWESOME!!! In addition, we have had a lovely year plus living together(now in a nicer apartment!), and we even got engaged in September! Woohoo! :) The wedding is planned for next June (2012).
We haven't been thinking too much about his tumor, but it has always been in the back of our minds. The tumor/surgery did have an effect on his sight in his right eye which is permanent. He cannot see far to the right, so basically he has no peripheral vision on the right. He has been accommodating for it when he drives etc. to make sure he has been safe. It is a nuisance, but overall, not bad if it's the only lasting effect from the ordeal. He has been on his Keppra since his initial seizure in 2008, and has not had any seizures since the one before the surgery.
Charlie was supposed to have his annual MRI in January, but when they called to confirm the appointment, he was informed that his health insurance no longer worked with that hospital, so we had to postpone the MRI. It took a couple months for him to get his health insurance changed so that he could still go to Brigham & Womens. Once that was done, his MRI and appointment were scheduled for May 14th and 20th.
On the 20th we met with Dr. Golby, who has taken over Charles' case since Dr. Black's retirement. She was very to the point and informative. She was curious if there had been any cause that we knew of as for why as a young healthy male he would have gotten a meningioma, but we have no idea.. She did a test to see how bad Charlie's vision is impaired and discussed his Keppra dosage.
And then she told us the news.. the tumor has begun growing back.
Thankfully, it is still very small, she showed that it was about the size of the tip of her pinkie finger. So the sooner it is treated the better.
We wondered if it would have been better to have the MRI done 4 months ago, but it's also possible that 4 months ago it would have been too small to show on the MRI and we wouldn't know about it at all for another year, so I think that we are lucky to have found it now so that it can be taken care of. We were told when they got the results from the pathology that the cells were somewhat rapidly reproducing, so unfortunately there was a higher risk of recurrence, especially since it had not been completely resected. We remained positive in hopes that Kirby would not attempt a comeback.
Dr. Golby said the options are surgery or radiation. Her recommendation is radiation but we should look into whatever we want whether it be one or both. She said that as far as surgery goes, she would send is to the BEST neurosurgeon for skull base tumors in the WORLD. He probably would be optimistic about the results of surgery, however, while he would probably not tell us, he would not be able to get all of the tumor. The risk of surgery is of course all the risks of brain surgery- infection, fluid leakage, the increase in scar tissue given it would be the second surgery, and the likelihood that Charles would lose all sight in his right eye. She said that since he would not be able to get all of the tumor out with the surgery, likely Charles would then still need radiation.
The risks with radiation increase with the size of the area needing to be treated. So if Charles' tumor was large, maybe surgery would be a better option and then radiology later. However, since it is still very small, the radiation shouldn't be that much, and it's better to get it done ASAP. It seemed to both of us that from the information she gave, that it would make sense to go ahead and try the radiation. However, she would not tell us more about the radiation and couldn't answer any questions, she told us to discuss it with the radiologist. Since the appointment was Friday afternoon and we finally got in to see her 2 hours after the scheduled appointment, they were unable to set up appointments for him (she had been called into the OR, so I hope that person is doing OK because they were obviously the priority!). We expect to hear back from them early this week. They are going to set up appointments with the radiologist and the neuro-ophthalmologist for the same day. Thankfully Charles still brought up the idea of going to see the neuro-ophthalmologist, Dr. Golby said it was a good idea in order to get a base-line of how his eye is before treatment.
I plan to do plenty of research myself. I plan to reach out again to the wonderful people at Meningioma Mommas who were very supportive the first time around and I still feel bad about not updating and putting the word out there that surgery can go well and recovery can be (relatively) easy. I know I had read on there at one point that it was a good idea to have a cognitive test done to be able to measure any sort of cognitive impairment that can occur when a tumor is in the frontal lobe. I don't remember if this related to surgery, radiation, or both, but I will keep it in mind.
Charlie is doing ok. He just keeps saying that he is not worried and he never has been. He is just taking everything in stride as it comes, and staying positive, which is what helped him through this journey thus far. I will try to stay positive and supportive, but I can't help but show how upset I am. I started crying during the appointment and was unable to talk about it for a while because I knew I would just break down... I haven't really had a good break down about it yet, so I imagine it is due to come soon... haha. But, that's OK. I don't know at all the time frame for this, but I hope it will not interfere with the wedding and that he will be back to good health for then. He deserves that.
I will continue to update this blog with information as we receive it. We welcome any messages. Please keep Charlie in your mind and wish the best for him.
A recent picture of Charlie with his nephew :)
As always, you can support Charlie and people like him by donating to help fund research into meningiomas, the most prevalent and yet underfunded type of primary brain tumor.
Learn more, get support, and make a donation. - Meningioma Mommas
In addition, I just wanted to note my condolences to the Reichman family and that my thoughts are with them. Jeremy was a co-worker of mine who recommended Dr. Black to us. He had been diagnosed with brain cancer (not a meningioma) about 6 months after Charles was diagnosed. He championed through chemo, radiation, medications, clinical trials and surgery and had been doing well. Unfortunately the tumor quickly grew back and began pressing on his brain stem, and there was nothing left for them to do. He passed away on April 6th. He was upbeat and optimistic throughout and beat the odds that were against him and was able to have a couple extra years with his children and family. I'm sure that I will continue to think of him often, and am humbled by his memory.
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