Today, we went up to Hunstman to meet with Dr. Cohen, who specializes in Nuero-Oncology. He will be the doctor overseeing Scott's future treatments. Last week we got the news that Scott's tumor is a stage 3 astrocytoma, and today we were able to sit down and discuss in detail with the doctor what that means and what the outlook is for Scott's diagnosis.
Scott's tumor is an Anaplastic Astrocytoma (or AA). There are 4 stages of astrocytomas, however stage 1 is only used to classify tumors in children. Since only stages 2-4 to classify adult tumors, Scott's is considered to be a mid-grade tumor. A stage 3 tumor can cover a wide range of tumors, where they can either act more like a 2 or more like a 4. When they reviewed Scott's tumor under the microscope, they discovered cells that cause them to believe his tumor will probably act more like a stage 4.
Scott's tumor is considered a primary brain tumor, meaning it started in the brain, and it is very rare for the tumor to spread and leave the brain. We don't know what caused it. Though they were able to completely remove the tumor, there is no way to completely remove all the cells left behind. They described to us that Scott's tumor is a cancer, meaning there is an uncontrolled growth of cells. The stage of Scott's tumor lets us know that these cells are aggressive and need to be treated with both chemo and radiation.
Dr. Cohen explained that Scott's diagnosis is treatable, but not curable. We've completed the first part of treatment, which is to remove as much of the tumor as possible. The next phase of treatment will be the chemo and radiation, as I mentioned. They will begin this treatment in a few weeks. Scott will be given chemotherapy in the form of a pill and will also receive radiation treatment M-F, for 6 weeks. Side effects he may experience during this time include tiredness, nausea, and a weak immune system. Typically, males of Scott's age tend to handle the treatments very well, so hopefully he won't experience these side effects. After those 6 weeks, he will take a month off and then continue chemo/radiation 5 days per month for 6-12 months.
The most difficult part of Scott's diagnosis is the outlook. Most people diagnosed with an anaplastic astrocytoma typically live for 3-9 years.
Scott will also need to continue speech therapy and ocupational therapy. He will meet with a speech therapist 2-3 times per week and an ocupational therapist 1 time per week. In Scott's speech therapy appointment last week, they told us Scott is doing great so far and should recover his language, writing, and reading skills. He will most likely need these types of therapy for at least a few months.
Right now, we are going to focus on the upcoming birth of our son, and take things a day at a time. We are planning to have our baby up in Logan as we originally planned. If the baby doesn't come this week, I am scheduled to be induced on April 8th.
Moving forward, we plan on being as hopeful and optimistic as we can, and enjoying every bit of time we have left. We were told that since Scott is young, he will most likely respond to the treatments well, which gives me hope we can beat the odds and have 9 years or more.
We know there have been many of you praying on our behalf, and we truly appreciate it. Though Scott's diagnosis is not what we wanted, we have felt strength from all of you and through our faith. Thank you again for all the calls, texts, and e-mails of encouragement and support. We love all of you and appreciate the many, many acts of service we have received during this difficult time.
Tuesday, April 1, 2014
Wednesday, March 26, 2014
Post Surgery News
Scott and I heard from Dr. Jensen this evening. He told us that the MRI they took after Scott's surgery confirmed that they were able to do a complete resection of the tumor, which is good news. We did find out, however, that his tumor is stage 3 - meaning he will need treatment in order to keep it from growing back. Dr. Jensen wants us to schedule an appointment so we can sit down together and discuss treatment options, etc. We'll be able to find out more information once we get in to visit with the Dr. and the treatment specialists. Also, Scott got his staples out from the surgery - he had 21!
Monday, March 24, 2014
Day 4 Progress
Scott was released from the hospital this afternoon, and he is doing well - just tired. On Friday, we will go back up to Huntsman to have his bandage and staples removed as well as a speech therapy session. He will continue to have speech therapy over the next couple months and we will also have a follow-up visit with Dr. Jensen in a month. We should hear from Dr. Jensen on Wednesday to find what stage his tumor is and what treatment he will need as far as chemo or radiation, if any. Hoping for the best! Thanks again to all of you for the many prayers and help. We are so blessed!
Sunday, March 23, 2014
Day 3 Progress
Since yesterday, Scott has been doing really well. It seems like his pain has been subsiding and has become more manageable. Everyone keeps telling us how well Scott is doing, and it is anticipated that he will be released from the hospital tomorrow. The physical therapist stopped by this afternoon and took Scott for a walk around the halls as well as down/up stairs. His mobility is great, and the physical therapist told us he should be good to go tomorrow.
We got a visit from the speech therapist early this evening. Scott has still been having difficulty with finding his words, talking, and reading. She asked him a range of questions as well as some commands. Some things came easily to him, while others did not. She told us that Scott will need to have intensive speech therapy 3-4 times a week, and we need to practice things like ABCs and numbers daily. I asked if she had any idea what timeline we were looking at for recovery, and she told me it ranges for everyone, however, she thinks at least a few months. For some it may take up to a year to completely regain their speech. While that was very difficult to hear, she did say that great strides of improvement happen early on while the swelling goes down. It is going to take some time and patience, but Scott seems very determined. I know he'll get there, it's just going to be a process.
Neither one of us anticipated his speech to be effected to the extent that it has been, so it's been a little disheartening - especially for Scott. The good news is that he will get it back and return to normal at some point. Scott is very bright and an extremely hard worker - I can tell already that he has a lot of determination. I have no doubt he will return to normal as quick as possible given his circumstances. Scott has been optimistic and has kept his sense of humor despite all of this. We've had a few laughs about some of the things he says, and he keeps trying and trying when he doesn't say things right. He's awesome!
We got a visit from the speech therapist early this evening. Scott has still been having difficulty with finding his words, talking, and reading. She asked him a range of questions as well as some commands. Some things came easily to him, while others did not. She told us that Scott will need to have intensive speech therapy 3-4 times a week, and we need to practice things like ABCs and numbers daily. I asked if she had any idea what timeline we were looking at for recovery, and she told me it ranges for everyone, however, she thinks at least a few months. For some it may take up to a year to completely regain their speech. While that was very difficult to hear, she did say that great strides of improvement happen early on while the swelling goes down. It is going to take some time and patience, but Scott seems very determined. I know he'll get there, it's just going to be a process.
Neither one of us anticipated his speech to be effected to the extent that it has been, so it's been a little disheartening - especially for Scott. The good news is that he will get it back and return to normal at some point. Scott is very bright and an extremely hard worker - I can tell already that he has a lot of determination. I have no doubt he will return to normal as quick as possible given his circumstances. Scott has been optimistic and has kept his sense of humor despite all of this. We've had a few laughs about some of the things he says, and he keeps trying and trying when he doesn't say things right. He's awesome!
Saturday, March 22, 2014
Day 2 Progress
When I got to the hospital this morning, Scott seemed about the same as last night when I left. He's tired from being woken up every hour in the ICU and still very much in pain. It seems like his head is in a lot of pain today, but they've been trying to keep him on medication to help with that. He is still having a very hard time with his speech, which I can tell has been frustrating for him. He tries to communicate the best he can but it's hard for him to think of certain words. Sometimes he can think of how to spell them, but he can't say them.
Since this morning, Scott has made a lot of progress. A physical therapist stopped by to help Scott get up and moving for the first time since the surgery. He was able to walk around the halls and go to the bathroom. He ate a little bit for breakfast this morning, but he wasn't able to keep it down when they got him up. They just took him in for a follow-up MRI (which I think was about the last thing in the world he wanted to do...poor guy.) Once he is done with his MRI, he is being transferred out of the ICU to a hospital room here at the Huntsman Cancer Center. They will only need to check on him every 4 hours at that point, so hopefully he will be able to get some sleep. Later today a speech pathologist should be stopping by to see if they can help him with his speech. There aren't any concerns that his language will return to normal, but hopefully they will be able to help him improve at this point.
Despite him being in a lot of pain, things are looking great and he is continuing to make a lot of improvements.
Since this morning, Scott has made a lot of progress. A physical therapist stopped by to help Scott get up and moving for the first time since the surgery. He was able to walk around the halls and go to the bathroom. He ate a little bit for breakfast this morning, but he wasn't able to keep it down when they got him up. They just took him in for a follow-up MRI (which I think was about the last thing in the world he wanted to do...poor guy.) Once he is done with his MRI, he is being transferred out of the ICU to a hospital room here at the Huntsman Cancer Center. They will only need to check on him every 4 hours at that point, so hopefully he will be able to get some sleep. Later today a speech pathologist should be stopping by to see if they can help him with his speech. There aren't any concerns that his language will return to normal, but hopefully they will be able to help him improve at this point.
Despite him being in a lot of pain, things are looking great and he is continuing to make a lot of improvements.
Friday, March 21, 2014
Scott's Surgery
Scott is out of surgery, and everything went well. We started early this morning at 6am, and it took a couple hours to get everything prepped for surgery. They didn't actually start operating until about 9:40am, and the nurse called a couple of times throughout the surgery to let us know everything was going okay. Around 2:00pm they finished surgery and moved Scott into the ICU.
We visited with Dr. Jensen for a few minutes after the surgery. He said everything went smoothly and as well as it could have. They were able to remove the entire tumor, which is great news. When they performed the in-operative MRI, they were able to see a small portion that was missed and they were able to get it out without any problems.
They still need to determine what stage of tumor he had. Dr. Jensen will meet with a team of doctors on Wednesday to review the test results of the tumor and decide on a treatment plan for him moving forward. We are hoping he won't need further treatment, but he may need chemo or radiation if the tumor is a higher stage.
Right now, Scott is in a lot of pain and very tired. He told the nurses he only wanted me to be in the room with him at this point. He's not up to visitors right now, but might be in the next day or two. He's having a hard time finding his words, but they said that is to be expected with the swelling from the surgery. The nurses come in every hour and ask him some questions. It's a little frustrating for him right now - you can tell he knows the answers, but he just can't say the words.
Thanks again to everyone for your prayers. Scott and I feel very supported and loved at this time, and we are so grateful for all of you. Hopefully Scott will have a quick recovery and we will continue to hope for the best news as we wait to hear from Dr. Jensen on Wednesday.
We visited with Dr. Jensen for a few minutes after the surgery. He said everything went smoothly and as well as it could have. They were able to remove the entire tumor, which is great news. When they performed the in-operative MRI, they were able to see a small portion that was missed and they were able to get it out without any problems.
They still need to determine what stage of tumor he had. Dr. Jensen will meet with a team of doctors on Wednesday to review the test results of the tumor and decide on a treatment plan for him moving forward. We are hoping he won't need further treatment, but he may need chemo or radiation if the tumor is a higher stage.
Right now, Scott is in a lot of pain and very tired. He told the nurses he only wanted me to be in the room with him at this point. He's not up to visitors right now, but might be in the next day or two. He's having a hard time finding his words, but they said that is to be expected with the swelling from the surgery. The nurses come in every hour and ask him some questions. It's a little frustrating for him right now - you can tell he knows the answers, but he just can't say the words.
Thanks again to everyone for your prayers. Scott and I feel very supported and loved at this time, and we are so grateful for all of you. Hopefully Scott will have a quick recovery and we will continue to hope for the best news as we wait to hear from Dr. Jensen on Wednesday.
Tuesday, March 18, 2014
MRIs
After taking some time to think about the timing of the surgery and the doctors, we've decided to move forward with Scott's surgery this week. We're confident both surgeons would do a good job, but we decided we felt best about going with Dr. Jensen at the Huntsman Cancer Center. It was quite the process trying to get everything coordinated with our insurance, but yesterday everything came together and we feel good about our decision moving forward.
Yesterday, Scott was able touch base with his teachers and tie up some loose ends with work. Scott's teachers have been very understanding of Scott's situation, and one of his teachers has decided to give him his current grade. His other teacher is still deciding whether he will either give him his current grade as well or allow him to take an incomplete and finish up course work when he is recovered. Dr. Smith has also allowed Scott to take off the time he needs from work. The week after Scott had his seizure, he had an exam in one of his classes, and he found out yesterday that he scored the highest in the class! I think he's amazing. Not too shabby, especially considering everything he was going through at the time.
Today we are at U of U for most of the day. Scott just went in for his fMRI, which should take a couple hours. We were hoping the tasks they would have him do during the MRI would be things like - 'eat this slice or pizza,' 'watch this movie,' or 'play candy crush'- but, no luck. He'll be doing things like moving his thumb for 4 minutes and filling in sentence blanks. Once he finishes up his MRIs, he will have a pre-op appointment later this afternoon.
Scott's surgery is scheduled to take place on Friday. We don't know the time yet - they've told us to call Thursday afternoon to find out when he is scheduled.
Again, we have been so blessed to have so many wonderful family, friends, and ward members helping, fasting, and praying for us. We love you all and have felt your love and support!
Yesterday, Scott was able touch base with his teachers and tie up some loose ends with work. Scott's teachers have been very understanding of Scott's situation, and one of his teachers has decided to give him his current grade. His other teacher is still deciding whether he will either give him his current grade as well or allow him to take an incomplete and finish up course work when he is recovered. Dr. Smith has also allowed Scott to take off the time he needs from work. The week after Scott had his seizure, he had an exam in one of his classes, and he found out yesterday that he scored the highest in the class! I think he's amazing. Not too shabby, especially considering everything he was going through at the time.
Today we are at U of U for most of the day. Scott just went in for his fMRI, which should take a couple hours. We were hoping the tasks they would have him do during the MRI would be things like - 'eat this slice or pizza,' 'watch this movie,' or 'play candy crush'- but, no luck. He'll be doing things like moving his thumb for 4 minutes and filling in sentence blanks. Once he finishes up his MRIs, he will have a pre-op appointment later this afternoon.
Scott's surgery is scheduled to take place on Friday. We don't know the time yet - they've told us to call Thursday afternoon to find out when he is scheduled.
Again, we have been so blessed to have so many wonderful family, friends, and ward members helping, fasting, and praying for us. We love you all and have felt your love and support!
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