Wednesday, February 20th was our follow up appointment with the nuero oncologist at Vanderbilt and we were scheduled for an appointment immediately following that with radiation. Ben and I had done a lot of research over the previous week since finding out what his diagnosis was and went into the meeting prepared to listen, but leaning towards the wait and see approach rather than taking further action right now.
Because we have made so many drastic lifestyle changes at home over the past month, Ben and I feel that he has made a good start towards beating this cancer without the need for radiation and chemo. The side effects from radiation could be detrimental. Since they radiate the entire area where the tumor is plus an additional 1cm area in all directions, a large portion of his brain would be subject to this radiation. Radiation on the brain has multiple side effects, the most scary of which is the possibility of losing cognitive abilities and becoming mentally handicapped.
We brought up these concerns first with the oncologist and then with the radiologist. Both of them responded that they didn't feel making lifestyle changes would make a difference, and why would you want to make drastic changes, wouldn't that lower the quality of the short life you have left? They explained that standard of care was chemo, plus radiation, and then follow up MRIs every two months for the remainder of his life. They seemed to take personal offense to the fact that Benjamin wanted to wait and see if the tumor came back before doing treatment and warned us that this was an infiltrative type of tumor that was most likely still there and that by the time more growth was to show up on the MRIs it would be more aggressive and harder to treat. We asked his prognosis with treatment and were told the median was 2-5 years, but without treatment it was 1-2. They said that people never turn down treatment unless it is for religious reasons. We asked about the effect it could have on his cognitive abilities and they shied away from answering that, and only stated that yes, it could affect his functioning in those areas. They said said that most people are concerned because radiation causes cancer, but that research shows that it doesn't cause cancer for another 20 years or so and that with the type of cancer he currently has he wouldn't be around long enough for that to be a problem.
Most of what the shared scared me and made me second guess the decisions that we had already made, but hearing them say that they didn't expect the treatment to help enough for him to be around much longer than without treatment just made us both realize that we have to do something outside of conventional treatment. We scheduled a follow up with his regular civilian doc at home and spoke with the military about traveling to another large treatment center for a second opinion.
We continue to seek the Lord's Will for our decision making and in the meantime are trying to get into a healthy routine in our everyday lives. Benjamin returns to work full-time tomorrow and we are planning to travel to NC in two weeks for my sister's wedding.
Sunday, February 24, 2013
Sunday, February 17, 2013
Grade III: Anaplastic Oligodendroglioma
On Wednesday, I drove Ben down to his doctor's office in Nashville to have his 54+ staples removed. His mom and sister watched the kids for us and we prayed that we would get some insight into what type of tumor that he had. Our appointment was only with the nurse at the clinic, but as soon as we sat down she asked if we had heard the pathology yet. We told her no, and she shared with us the name of the tumor that Ben had. She said that the doctors (and herself) were shocked to find out the tumor was a Grade 3 and not a Grade 4. She told us that this type of tumor is a little more rare then what they had originally thought Ben had, but that it was definitely more treatable. She said she didn't know enough to tell us what she thought the treatment options would be but she guessed they would want to do radiation and chemo regardless.
We left the office feeling encouraged, and knowing that God had answered the fervent prayers of so many who have been with us during this time. We have a meeting this coming Wednesday to determine what the doctors feel should be the next course of action; however, after much research, prayer, and discussion, right now we feel that we are going to take a wait and see approach over the next couple of months. Benjamin feels great and is ready to get back to work (and normalcy) and we are not sure at this time if radiation as a precaution is the best move for him. We continue to pray that God will guide us through this situation and that he will lead us down the path that he feels is best for us!
We left the office feeling encouraged, and knowing that God had answered the fervent prayers of so many who have been with us during this time. We have a meeting this coming Wednesday to determine what the doctors feel should be the next course of action; however, after much research, prayer, and discussion, right now we feel that we are going to take a wait and see approach over the next couple of months. Benjamin feels great and is ready to get back to work (and normalcy) and we are not sure at this time if radiation as a precaution is the best move for him. We continue to pray that God will guide us through this situation and that he will lead us down the path that he feels is best for us!
Monday, February 11, 2013
13 Months~~ OH MY!
The twins rounded the 13 month mark this past weekend and I would be remiss if I didn't share their latest milestones:
Joshua is a full-time walker now. About a week after Ben returned from his trip, we came home to find him walking everywhere. Occasionally he gets so excited he runs faster then he means to across the room and wipes out, but it doesn't keep him down. He just bounces back up and keeps going. It is so much fun to watch him shake his little bottom while he carries large toys across the room. He fought a cold gallantly this month, and while it held on in Savannah for almost 2 weeks, he spiked a 2 hour fever and then had a runny nose for about two days before being back to his old self again.
Savannah is still crawling around the house at top speed. She is very capable of walking, but has no desire to. She moves all the furniture around and her latest game is to push her rocking chair up to the coffee table and climb onto it. Tooth #7 broke through in the midst of the beginning of her long cold a few weeks ago and she took it without any complaining. Tooth #8 seems to be getting ready to make it's appearance and we are happily waiting for it's arrival.
Both of them still have the best attitudes and are such a joy to be around. They continue to sleep 12-13 hours at night and take 2 almost 2 hour naps during the day. I love listening to them chatter away at each other in their cribs at night and when they wake up from naps. They stand up and face each other, sometimes silently and then you hear laughs as they play. There is nothing more rewarding at the end of a day then to see their precious faces. Especially when our days have been full of appointments and trips away. This past week I spent 48 hours away from them and missed them so much... it just became a reminder to me of how blessed I am to be able to be a stay at home mom and share all their precious moments! :-) I know... sappy me! But I sure do love them!
Joshua is a full-time walker now. About a week after Ben returned from his trip, we came home to find him walking everywhere. Occasionally he gets so excited he runs faster then he means to across the room and wipes out, but it doesn't keep him down. He just bounces back up and keeps going. It is so much fun to watch him shake his little bottom while he carries large toys across the room. He fought a cold gallantly this month, and while it held on in Savannah for almost 2 weeks, he spiked a 2 hour fever and then had a runny nose for about two days before being back to his old self again.
Savannah is still crawling around the house at top speed. She is very capable of walking, but has no desire to. She moves all the furniture around and her latest game is to push her rocking chair up to the coffee table and climb onto it. Tooth #7 broke through in the midst of the beginning of her long cold a few weeks ago and she took it without any complaining. Tooth #8 seems to be getting ready to make it's appearance and we are happily waiting for it's arrival.
Both of them still have the best attitudes and are such a joy to be around. They continue to sleep 12-13 hours at night and take 2 almost 2 hour naps during the day. I love listening to them chatter away at each other in their cribs at night and when they wake up from naps. They stand up and face each other, sometimes silently and then you hear laughs as they play. There is nothing more rewarding at the end of a day then to see their precious faces. Especially when our days have been full of appointments and trips away. This past week I spent 48 hours away from them and missed them so much... it just became a reminder to me of how blessed I am to be able to be a stay at home mom and share all their precious moments! :-) I know... sappy me! But I sure do love them!
Saturday, February 9, 2013
A few life altering weeks...
On Friday, January 25th, 2013, I found out that my husband had a massive brain tumor. This came as quite a surprise to both of us, as a tumor of this size should have caused some noticeable symptoms as far as his behavior goes.
Last fall, Ben had several episodes of sleepwalking/talking that were out of character for him. He would groan and shake while he was sleeping and then when he would finally wake up, he didn't remember where he was, who I was, or what happened. By the morning, all of this was forgotten completely. It was during this second episode that he told me he was having chest pains, and I woke the twins and took all three of them to the ER. After three hours of waiting (which he still does not remember, to this day), they released us and told me that there was nothing wrong (despite the fact that he didn't really remember who he was there or why he was there! We chalked it up to strange sleepwalking tendencies and put it out of our minds.
When he got home from two weeks out of the country on the 18th, the twins and I were ecstatic. We had definitely missed having him around. When two nights later (Sunday) he had the same type of episode, I chalked it up to lack of sleep and let him sleep late Monday. However, shortly after we put the kids to bed on Monday night, he headed up to his office and I heard him sit down at his desk while I was downstairs in the living room. The tell tale groan a few minutes later sent me running. I found him bleeding from biting his tongue and flinging his arms around and shaking in his chair. His body was tight and it took me a minute to get the chair out of the way and him laying on the floor. All this time he was biting his tongue and bleeding from the mouth. I videoed him (as he had requested the last few times), and sent a message to his family to pray for him. I debated taking him to the hospital, but didn't have much confidence in them actually doing anything for him. So instead, I helped him to bed and watched him fall asleep. I waited an hour and woke him back up. We talked for almost 15 minutes before he could tell me who I was, he continued grasping for words and saying, "I don't understand" every time I asked him something. I had him talk to his parents on the phone and then promise me that he would be seen by a doctor in the morning. Then I let him go back to sleep.
I was not surprised when Tuesday morning he didn't remember this conversation. He wouldn't watch the video of himself, but I did make him look at the blood and the mess on his office floor from his thrashing around. He had been away from work for over two weeks at this point and said he didn't think he would be able to go to the doc anytime soon, but I gave him til lunchtime to get an appt before I started calling myself. He went to see his battalion surgeon right after lunch. His battalion surgeon gave me a call to get my side of the story and I explained the seizure like behaviors to him. He warned me not to use the word seizure when describing his behavior until we knew for sure what was going on... and said he felt that there was a logical explanation for everything. He ran some tests and put him in for bloodwork and then scheduled an MRI for the following Sunday afternoon.
The next day his mom and sister arrived at the house to help us figure out what was going on. I was a little worried about Ben driving, but his surgeon said minimal driving would be okay for the time being so I let him head out to work. It was the next few days when I really knew something was wrong. He was walking around with his head in the clouds in a sort of daze, not really able to focus on anything. The hospital called on Thursday afternoon to cancel his MRI appt and reschedule it for a week later and the crazy me came out. I insisted that Sunday was already waiting too long, and he couldn't be seen later, that it should be sooner. A callback a short while later scheduled us for Friday morning.
On Friday, we arrived at the hospital for his MRI and I waited for over an hour and a half for him to finish. Then I dropped him off at work and waited for him to call for a ride home. Not even an hour after I got home, the front door opened and in walked Ben with his battalion surgeon. He got the results right away and brought Ben home to be with us both to discuss them. The scan showed a 6.7cm x 4.6cm x 4.5cm mass on the left frontal lobe of his brain. It was massive and it meant that Ben was not allowed to drive, work, jump, or anything else until we got a consult with a nuerosurgeon. His appointment for the hospital on post was cancelled and a consult was made for Monday morning at 8am.
He spent the weekend researching, but we both knew that the surgeon was going to tell us that the tumor needed to be removed. Ben's mom kept the kids for us on Sunday morning so that we could go to church and see our friends children get baptized (their service was during naptime) and we spent the trip to church talking about why us? Why was this something we were having to face? The church service was about Life Circumstances and was completely fitting for us, and the song Blessings by Laura Story brought tears to my eyes. It was so fitting for our situation and was just a reminder that God was in control, and was going to use this situation to His glory.
Our appt on Monday came as no surprise to us. The doctor said that he felt the tumor was a higher grade tumor (a 3 or 4) and that it was more aggressive than he likes to see. He told us the lines were not clear in it but that he felt it needed to be removed as soon as possible. We discussed the surgery and the likely outcomes, and before we left had scheduled surgery for the following week. After that came a series of appts and preop testing while at home we were working on cleaning up our eating and "living". The day we signed all the waivers and liability forms Benjamin was asked to participate in three studies for Stage 4 cancer. This was our first indicator that told us that was what they were expecting.
On Wednesday, Feb 6th, Benjamin went in for surgery at Vanderbilt Medical Center. His entire family showed up the night before (mom, dad, 3 brothers, 2 sisters, and even my parents) to pray with us and be with us for the surgery. My parents babysat for the twins the first day, while the rest of us sat at the hospital to wait and pray. Benjamin and I had a great support group of friends from church there to be with us as well. The surgery started around 1:00 and ended somewhere after 6pm. The doctor came to see us in the waiting room and allowed everyone to gather around to hear about the surgery. He said he got as much of the tumor as he could see but that like he had believed it was definitely aggressive and that there were no surprises. He still expected a higher grade tumor.
I was able to join Benjamin as soon as he woke up. It was only a short while before he was able to go to his room in the Neuro ICU and he was able to see his parents for a few minutes before they went back to our house to keep the twins overnight. By the next morning Benjamin was ready to be up and out of bed and even took a walk around the hospital with the Physical and Occupational Therapists. And knowing that he was a "math" guy they even gave him a simple math problem to do... he answered it in his head and they asked me if I had a calculator to check his work :-) He was doing so well that they moved him out of the ICU to a regular room to stay the second night. The doctor came to visit us in the middle of the night during a break from surgery and showed us his follow up MRI. Again he told us he felt that it was a higher grade aggressive tumor, but that he was able to remove most of it. The small area that was left, he felt was too close to Ben's language area of his brain to safely remove, but that it would continue to be monitored. We were home less than 48 hours after surgery, and Ben even took a 3 mile walk around the neighborhood with his mom last night!
And now we wait. We go back to get his stitches out this Wednesday and we are hoping/praying that there will be an initial report on what type of tumor it is by then! Continued prayers are appreciated as we continue to try to return to our new "normal."
Last fall, Ben had several episodes of sleepwalking/talking that were out of character for him. He would groan and shake while he was sleeping and then when he would finally wake up, he didn't remember where he was, who I was, or what happened. By the morning, all of this was forgotten completely. It was during this second episode that he told me he was having chest pains, and I woke the twins and took all three of them to the ER. After three hours of waiting (which he still does not remember, to this day), they released us and told me that there was nothing wrong (despite the fact that he didn't really remember who he was there or why he was there! We chalked it up to strange sleepwalking tendencies and put it out of our minds.
When he got home from two weeks out of the country on the 18th, the twins and I were ecstatic. We had definitely missed having him around. When two nights later (Sunday) he had the same type of episode, I chalked it up to lack of sleep and let him sleep late Monday. However, shortly after we put the kids to bed on Monday night, he headed up to his office and I heard him sit down at his desk while I was downstairs in the living room. The tell tale groan a few minutes later sent me running. I found him bleeding from biting his tongue and flinging his arms around and shaking in his chair. His body was tight and it took me a minute to get the chair out of the way and him laying on the floor. All this time he was biting his tongue and bleeding from the mouth. I videoed him (as he had requested the last few times), and sent a message to his family to pray for him. I debated taking him to the hospital, but didn't have much confidence in them actually doing anything for him. So instead, I helped him to bed and watched him fall asleep. I waited an hour and woke him back up. We talked for almost 15 minutes before he could tell me who I was, he continued grasping for words and saying, "I don't understand" every time I asked him something. I had him talk to his parents on the phone and then promise me that he would be seen by a doctor in the morning. Then I let him go back to sleep.
I was not surprised when Tuesday morning he didn't remember this conversation. He wouldn't watch the video of himself, but I did make him look at the blood and the mess on his office floor from his thrashing around. He had been away from work for over two weeks at this point and said he didn't think he would be able to go to the doc anytime soon, but I gave him til lunchtime to get an appt before I started calling myself. He went to see his battalion surgeon right after lunch. His battalion surgeon gave me a call to get my side of the story and I explained the seizure like behaviors to him. He warned me not to use the word seizure when describing his behavior until we knew for sure what was going on... and said he felt that there was a logical explanation for everything. He ran some tests and put him in for bloodwork and then scheduled an MRI for the following Sunday afternoon.
The next day his mom and sister arrived at the house to help us figure out what was going on. I was a little worried about Ben driving, but his surgeon said minimal driving would be okay for the time being so I let him head out to work. It was the next few days when I really knew something was wrong. He was walking around with his head in the clouds in a sort of daze, not really able to focus on anything. The hospital called on Thursday afternoon to cancel his MRI appt and reschedule it for a week later and the crazy me came out. I insisted that Sunday was already waiting too long, and he couldn't be seen later, that it should be sooner. A callback a short while later scheduled us for Friday morning.
On Friday, we arrived at the hospital for his MRI and I waited for over an hour and a half for him to finish. Then I dropped him off at work and waited for him to call for a ride home. Not even an hour after I got home, the front door opened and in walked Ben with his battalion surgeon. He got the results right away and brought Ben home to be with us both to discuss them. The scan showed a 6.7cm x 4.6cm x 4.5cm mass on the left frontal lobe of his brain. It was massive and it meant that Ben was not allowed to drive, work, jump, or anything else until we got a consult with a nuerosurgeon. His appointment for the hospital on post was cancelled and a consult was made for Monday morning at 8am.
He spent the weekend researching, but we both knew that the surgeon was going to tell us that the tumor needed to be removed. Ben's mom kept the kids for us on Sunday morning so that we could go to church and see our friends children get baptized (their service was during naptime) and we spent the trip to church talking about why us? Why was this something we were having to face? The church service was about Life Circumstances and was completely fitting for us, and the song Blessings by Laura Story brought tears to my eyes. It was so fitting for our situation and was just a reminder that God was in control, and was going to use this situation to His glory.
Our appt on Monday came as no surprise to us. The doctor said that he felt the tumor was a higher grade tumor (a 3 or 4) and that it was more aggressive than he likes to see. He told us the lines were not clear in it but that he felt it needed to be removed as soon as possible. We discussed the surgery and the likely outcomes, and before we left had scheduled surgery for the following week. After that came a series of appts and preop testing while at home we were working on cleaning up our eating and "living". The day we signed all the waivers and liability forms Benjamin was asked to participate in three studies for Stage 4 cancer. This was our first indicator that told us that was what they were expecting.
On Wednesday, Feb 6th, Benjamin went in for surgery at Vanderbilt Medical Center. His entire family showed up the night before (mom, dad, 3 brothers, 2 sisters, and even my parents) to pray with us and be with us for the surgery. My parents babysat for the twins the first day, while the rest of us sat at the hospital to wait and pray. Benjamin and I had a great support group of friends from church there to be with us as well. The surgery started around 1:00 and ended somewhere after 6pm. The doctor came to see us in the waiting room and allowed everyone to gather around to hear about the surgery. He said he got as much of the tumor as he could see but that like he had believed it was definitely aggressive and that there were no surprises. He still expected a higher grade tumor.
I was able to join Benjamin as soon as he woke up. It was only a short while before he was able to go to his room in the Neuro ICU and he was able to see his parents for a few minutes before they went back to our house to keep the twins overnight. By the next morning Benjamin was ready to be up and out of bed and even took a walk around the hospital with the Physical and Occupational Therapists. And knowing that he was a "math" guy they even gave him a simple math problem to do... he answered it in his head and they asked me if I had a calculator to check his work :-) He was doing so well that they moved him out of the ICU to a regular room to stay the second night. The doctor came to visit us in the middle of the night during a break from surgery and showed us his follow up MRI. Again he told us he felt that it was a higher grade aggressive tumor, but that he was able to remove most of it. The small area that was left, he felt was too close to Ben's language area of his brain to safely remove, but that it would continue to be monitored. We were home less than 48 hours after surgery, and Ben even took a 3 mile walk around the neighborhood with his mom last night!
And now we wait. We go back to get his stitches out this Wednesday and we are hoping/praying that there will be an initial report on what type of tumor it is by then! Continued prayers are appreciated as we continue to try to return to our new "normal."
Subscribe to:
Posts (Atom)
-
Last Thursday we closed on our new home in Tennessee and I (Tricia) got to see it for the first time. Ben did an awesome job picking it out... -
Last Sunday I laid around the house while Ben put together the bouncy seat and swing for the twins. Knowing that they could make their arr... -
So, the annual math department formal was this weekend and Ben and I really wanted to attend. Since my sister was coming to meet the twins f...