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 :)
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Monday, June 6, 2011
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
Monday, September 21, 2009
In Recovery
*BIG DEEP BREATH*
Charles is out of surgery and in recovery. The recovery and neuro-ICU are the same so he's still very much asleep. They just gave him some morphine for pain.
AHHH I can't type worth a crap!
Dr. Black came in and said he was doing great, the surgery went really well no major complications. The only thing is that they were NOT able to remove all of the tumor :( There was some that had wrapped around the optic nerve and if they had tried getting any more of the tumor out he could have lost his vision in his right eye. So the plan is to keep an eye on the tumor, make sure it doesn't grow or cause any more problems. If it does become a problem then he will need radiation (stereotactic radiosurgery/GammaKnife, etc) to kill the tumor cells.
OK I'm sorry I'm still all worried about all the negatives and I'm not WAHOO HE'S OK! I'm crappy :( TOO MUCH STRESS. But, WAHOO, HE'S OK! He knew who we were, he can see, etc. His brain functions seem fine. He's still normal Charles, the first thing he said when we saw him was "where's my bacon from Abby??" Thankfully it wasn't wanting to know where Kirby was because in the mad dash to go see him I forgot to grab his plastic Kirby representation that we stuffed in a zip lock (the mason jar opening was too small to fit Kirby AND his frying pan through).
Once I calm down more and he's more alive I'll be happier. Probably once he's conscious enough to make me smile all the time like normal! :)
I'm just stuck on the fact that while I know it's never over, I was REALLY hoping they would get 100% of the tumor, and the 3 neurosurgeons that looked at his MRIs all said it WASN'T wrapped around the optic nerve so I think that JUST happened recently- having to do with the fact that his vision started getting foggy a couple weeks ago. The fog is still there, but I dont think any worse than it was. BUT he's not blind in that eye so that's awesome!! And he doesn't have any sexy black eyes either.
I'm just not looking forward to when he's fully conscious and finds out that they shaved off one of his sideburns!! Ooooh that's not gonna be a happy time! That might possibly be one of the things he'll be most upset about ;)
Though overall... I'm disappointed because I really wanted to be able to tell him he was ok and Kirby was gone. But... he's not 100% gone :( There's Kirby Poop on his eye nerve!!!
THINK HAPPY THOUGHTS!
HE'S ALIVE AND WELL AND WE WILL LIVE HAPPILY EVER AFTER!!!!!
And as Abby keeps reminding me trying to keep me upbeat, his (wonderfully crazy) personality hasn't changed and that's the most important thing :)
YAAAAAAAY CHARLES!!!
We'll know more about how he's feeling and everything later but for now, that's my update!
*KEEL OVER TIME*
Love, Sue W.
Charles is out of surgery and in recovery. The recovery and neuro-ICU are the same so he's still very much asleep. They just gave him some morphine for pain.
AHHH I can't type worth a crap!
Dr. Black came in and said he was doing great, the surgery went really well no major complications. The only thing is that they were NOT able to remove all of the tumor :( There was some that had wrapped around the optic nerve and if they had tried getting any more of the tumor out he could have lost his vision in his right eye. So the plan is to keep an eye on the tumor, make sure it doesn't grow or cause any more problems. If it does become a problem then he will need radiation (stereotactic radiosurgery/GammaKnife, etc) to kill the tumor cells.
OK I'm sorry I'm still all worried about all the negatives and I'm not WAHOO HE'S OK! I'm crappy :( TOO MUCH STRESS. But, WAHOO, HE'S OK! He knew who we were, he can see, etc. His brain functions seem fine. He's still normal Charles, the first thing he said when we saw him was "where's my bacon from Abby??" Thankfully it wasn't wanting to know where Kirby was because in the mad dash to go see him I forgot to grab his plastic Kirby representation that we stuffed in a zip lock (the mason jar opening was too small to fit Kirby AND his frying pan through).
Once I calm down more and he's more alive I'll be happier. Probably once he's conscious enough to make me smile all the time like normal! :)
I'm just stuck on the fact that while I know it's never over, I was REALLY hoping they would get 100% of the tumor, and the 3 neurosurgeons that looked at his MRIs all said it WASN'T wrapped around the optic nerve so I think that JUST happened recently- having to do with the fact that his vision started getting foggy a couple weeks ago. The fog is still there, but I dont think any worse than it was. BUT he's not blind in that eye so that's awesome!! And he doesn't have any sexy black eyes either.
I'm just not looking forward to when he's fully conscious and finds out that they shaved off one of his sideburns!! Ooooh that's not gonna be a happy time! That might possibly be one of the things he'll be most upset about ;)
Though overall... I'm disappointed because I really wanted to be able to tell him he was ok and Kirby was gone. But... he's not 100% gone :( There's Kirby Poop on his eye nerve!!!
THINK HAPPY THOUGHTS!
HE'S ALIVE AND WELL AND WE WILL LIVE HAPPILY EVER AFTER!!!!!
And as Abby keeps reminding me trying to keep me upbeat, his (wonderfully crazy) personality hasn't changed and that's the most important thing :)
YAAAAAAAY CHARLES!!!
We'll know more about how he's feeling and everything later but for now, that's my update!
*KEEL OVER TIME*
Love, Sue W.
Waiting Time
Hello Hello!
Charles is in surgery. They took him in right at 7:30 as planned, it all went smoothly. There were lots of very nice friendly people who were tending to him and of course he is a wonderful patient cracking jokes with everyone up until they knocked him out I'm sure! :) He asked one of the surgeons if he can get a two-for-one deal and and they can operate on his mother to take out some of her annoying-ness. Haha.
I'm hanging out in the waiting area. They have a very nice set up with a bunch of chairs and tables and little alcoves of chairs and couches and a couple little TV rooms. They also have a bank of 4 computers and printers that people can use, which is very nice for updating!!
Right now his mom is in our spot in the TV room unenthusiastically watching Regis & Kelly and I decided to hop on here for an update. My friend Abby is on her way to hang out and try to keep my mind occupied while we wait. She's stuck in traffic of course. YAAAAAY BOSTON. Sarcasm. Haha. But YAY for good hospitals and doctors!!
We got more messages of "ooh you got Dr. Black he's the best doctor!" from the other employees of the hospital :)
I teared up some right before they took Charles from the pre-op area but I've been OK since. I thought I'd have a meltdown after they took him but thankfully we were preoccupied a bit being shuffled around and what not and I haven't... which I'm glad about! I just heard someone crying from here and it makes me sad :( I hope that everyone is ok.....
I've got 2 big reusable grocery bags I'm carrying around with me. One of them is filled with board and card games and some books (I don't have the mental capacity to read!! SO TIRED!!) and one is filled with JUNK FOOD. I was stressed out about the surgery on Saturday and ended up stocking up on junk food! Haha. I bought chocolate chip cookies in 3 different forms. I love cookies.
ANNNNNNNNNNYWAY....
Back to Charles. They said that they get updates on how the surgery is doing in this Patient Liaison area (wow I really didn't know to spell liason! and blogger spell check still says its wrong...) and they will let us know how far along they are. And they can call down to the OR and see how things are going and stuff. We've still got many hours to wait here. They said around 1:00-2:00 the surgery should be done and we can hear from Dr. Black how it went. KEEP YOUR FINGERS CROSSED that everything goes as planned! NO SURPRISES (unless they're good!) :)
Sorry not much interesting to say now, just waiting waiting waiting! I'll let you know when I know more.
Off to Fish for Charles on FishWrangler now!
Keep sending him your happy thoughts!
Love, Sue W.
Charles is in surgery. They took him in right at 7:30 as planned, it all went smoothly. There were lots of very nice friendly people who were tending to him and of course he is a wonderful patient cracking jokes with everyone up until they knocked him out I'm sure! :) He asked one of the surgeons if he can get a two-for-one deal and and they can operate on his mother to take out some of her annoying-ness. Haha.
I'm hanging out in the waiting area. They have a very nice set up with a bunch of chairs and tables and little alcoves of chairs and couches and a couple little TV rooms. They also have a bank of 4 computers and printers that people can use, which is very nice for updating!!
Right now his mom is in our spot in the TV room unenthusiastically watching Regis & Kelly and I decided to hop on here for an update. My friend Abby is on her way to hang out and try to keep my mind occupied while we wait. She's stuck in traffic of course. YAAAAAY BOSTON. Sarcasm. Haha. But YAY for good hospitals and doctors!!
We got more messages of "ooh you got Dr. Black he's the best doctor!" from the other employees of the hospital :)
I teared up some right before they took Charles from the pre-op area but I've been OK since. I thought I'd have a meltdown after they took him but thankfully we were preoccupied a bit being shuffled around and what not and I haven't... which I'm glad about! I just heard someone crying from here and it makes me sad :( I hope that everyone is ok.....
I've got 2 big reusable grocery bags I'm carrying around with me. One of them is filled with board and card games and some books (I don't have the mental capacity to read!! SO TIRED!!) and one is filled with JUNK FOOD. I was stressed out about the surgery on Saturday and ended up stocking up on junk food! Haha. I bought chocolate chip cookies in 3 different forms. I love cookies.
ANNNNNNNNNNYWAY....
Back to Charles. They said that they get updates on how the surgery is doing in this Patient Liaison area (wow I really didn't know to spell liason! and blogger spell check still says its wrong...) and they will let us know how far along they are. And they can call down to the OR and see how things are going and stuff. We've still got many hours to wait here. They said around 1:00-2:00 the surgery should be done and we can hear from Dr. Black how it went. KEEP YOUR FINGERS CROSSED that everything goes as planned! NO SURPRISES (unless they're good!) :)
Sorry not much interesting to say now, just waiting waiting waiting! I'll let you know when I know more.
Off to Fish for Charles on FishWrangler now!
Keep sending him your happy thoughts!
Love, Sue W.
Tuesday, September 15, 2009
Welcome
Hello,
This past month and a half have been interesting, that's for sure. Though as you know, any time involving Charles is sure to be interesting! :) (And that's why we love him!)
Charles and I wanted to set up this blog so that friends and family could keep up to date on Charles' surgery and recovery. At this point I'm not sure what access I will have to a computer the week that he is in the hospital, but I will do my best! At the very least hopefully the hotel will have a computer in the lobby that I can use... If I'm ever at the hotel.
We want to thank the friends and family who have helped so much so far. We appreciate everything that has been done to help- driving Miss Daisy to work, helping locate a neurosurgeon, get well cards, prayers and well wishes to name a few.
Please keep Charles in your thoughts, minds, prayers and hearts through the coming weeks, we'll take all we can get! :)
Love,
Sue W.
CONTACT INFO
Feel free to text me anytime (Sue W.): 978-870-2280
Send any cards (definitely welcome!) to:
Charles Horn
3 Carroll Rd. Apt 3
North Grafton, MA 01536
THE SURGERY
Pre-Op: Wednesday September 16th
Surgery: Monday September 21st
Brigham & Womens Hospital, Boston MA
Peter M. Black, M.D., Ph.D.
The surgery is scheduled for 7:30am and we have to be there for 5:30am... EWWWW!! But at least Charles doesn't have to spend Sunday night in the hospital, so that's all that matters!
The surgery should take 4-5 hours and he is expected to be in the hospital for about 4 days. So we're hoping he'll be discharged by Friday morning if all goes well :)
THE TUMOR
Kirby is what Charles named his brain tumor when he was diagnosed in January '08
Kirby is a Meningioma (see Meningioma Facts below)
The tumor is located behind Charles' right eyebrow area on the lining of his brain. The largest risk (as stated by Dr. Black) would be losing his sense of smell as the olfactory nerve (smell nerve) is in the path the doctor needs to take to remove the tumor. In addition, there is a small risk of blindness in his right eye or stroke as the tumor is touching his right optic nerve and his carotid artery. His odds are better having the surgery than letting the tumor grow where it WILL cause a problem in time. Hopefully there won't be ANY of those problems! :) In addition, like any surgery there could be an infection, which we probably wouldn't get any sign of until he's been home for a while. Let's hope that doesn't happen either! But just don't send him any of your germs ok?? :)
Meningiomas are slow-growing tumors that often cause no problems but can cause problems because it puts pressure on the brain which can cause swelling and make the brain generally unhappy! In addition, in Charles' case the tumor is located in a sensitive area where it could potentially damage important nerves. Luckily for Charles his tumor was diagnosed soon enough that not many problems have occurred for him so far. While the tumor is touching his optic nerve and carotid artery, it is not involved with either- it's not wrapped around them or causing any big problems. The doctor should be able to peel the tumor away from those parts and remove them with little or no lasting damage.
MENINGIOMA FACTS
*Meningiomas are the most prevalent primary brain tumor in existence, but very little is known about them because they are mislabeled benign and research is underfunded.
*This is primarily a female disease. Of those diagnosed, 65% are women, but meningiomas are found in men and children as well.
*Even though 90% of meningiomas are classified as benign, they are not without their deficits. They can damage the brain, cause massive disability, life-long seizures and even death.
*The treatment for meningiomas depends on a number of factors, including your general health and the size and position of the tumor. At times, the position of a tumor makes it impossible or too risky to remove surgically. If surgery is not possible, radiation or chemotherapy maybe used to shrink the tumor and destroy cells.
*They have a recurrence rate of 15-20%, which means it is always on the back of a survivor's mind.
*The treatment of these "benign" tumors is the same as for malignant tumors--craniotomy, spinal surgery, radiation or chemotherapy.
*There is very little funding for research, emotional support and financial assistance for the victims because of the benign classification. Anyone can donate to meningioma research on-line.
The Brain Science Foundation / The Meningioma Project
Meningioma Mommas
This past month and a half have been interesting, that's for sure. Though as you know, any time involving Charles is sure to be interesting! :) (And that's why we love him!)
Charles and I wanted to set up this blog so that friends and family could keep up to date on Charles' surgery and recovery. At this point I'm not sure what access I will have to a computer the week that he is in the hospital, but I will do my best! At the very least hopefully the hotel will have a computer in the lobby that I can use... If I'm ever at the hotel.
We want to thank the friends and family who have helped so much so far. We appreciate everything that has been done to help- driving Miss Daisy to work, helping locate a neurosurgeon, get well cards, prayers and well wishes to name a few.
Please keep Charles in your thoughts, minds, prayers and hearts through the coming weeks, we'll take all we can get! :)
Love,
Sue W.
CONTACT INFO
Feel free to text me anytime (Sue W.): 978-870-2280
Send any cards (definitely welcome!) to:
Charles Horn
3 Carroll Rd. Apt 3
North Grafton, MA 01536
THE SURGERY
Pre-Op: Wednesday September 16th
Surgery: Monday September 21st
Brigham & Womens Hospital, Boston MA
Peter M. Black, M.D., Ph.D.
The surgery is scheduled for 7:30am and we have to be there for 5:30am... EWWWW!! But at least Charles doesn't have to spend Sunday night in the hospital, so that's all that matters!
The surgery should take 4-5 hours and he is expected to be in the hospital for about 4 days. So we're hoping he'll be discharged by Friday morning if all goes well :)
THE TUMOR
Kirby is what Charles named his brain tumor when he was diagnosed in January '08
Kirby is a Meningioma (see Meningioma Facts below)
The tumor is located behind Charles' right eyebrow area on the lining of his brain. The largest risk (as stated by Dr. Black) would be losing his sense of smell as the olfactory nerve (smell nerve) is in the path the doctor needs to take to remove the tumor. In addition, there is a small risk of blindness in his right eye or stroke as the tumor is touching his right optic nerve and his carotid artery. His odds are better having the surgery than letting the tumor grow where it WILL cause a problem in time. Hopefully there won't be ANY of those problems! :) In addition, like any surgery there could be an infection, which we probably wouldn't get any sign of until he's been home for a while. Let's hope that doesn't happen either! But just don't send him any of your germs ok?? :)
Meningiomas are slow-growing tumors that often cause no problems but can cause problems because it puts pressure on the brain which can cause swelling and make the brain generally unhappy! In addition, in Charles' case the tumor is located in a sensitive area where it could potentially damage important nerves. Luckily for Charles his tumor was diagnosed soon enough that not many problems have occurred for him so far. While the tumor is touching his optic nerve and carotid artery, it is not involved with either- it's not wrapped around them or causing any big problems. The doctor should be able to peel the tumor away from those parts and remove them with little or no lasting damage.
MENINGIOMA FACTS
*Meningiomas are the most prevalent primary brain tumor in existence, but very little is known about them because they are mislabeled benign and research is underfunded.
*This is primarily a female disease. Of those diagnosed, 65% are women, but meningiomas are found in men and children as well.
*Even though 90% of meningiomas are classified as benign, they are not without their deficits. They can damage the brain, cause massive disability, life-long seizures and even death.
*The treatment for meningiomas depends on a number of factors, including your general health and the size and position of the tumor. At times, the position of a tumor makes it impossible or too risky to remove surgically. If surgery is not possible, radiation or chemotherapy maybe used to shrink the tumor and destroy cells.
*They have a recurrence rate of 15-20%, which means it is always on the back of a survivor's mind.
*The treatment of these "benign" tumors is the same as for malignant tumors--craniotomy, spinal surgery, radiation or chemotherapy.
*There is very little funding for research, emotional support and financial assistance for the victims because of the benign classification. Anyone can donate to meningioma research on-line.
The Brain Science Foundation / The Meningioma Project
Meningioma Mommas
Subscribe to:
Posts (Atom)