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!

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.

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.

Tuesday, March 18, 2014


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!

Tuesday, March 11, 2014

Visiting with Doctors

We've had a busy day visiting with neurosurgeons and taking in all the information! This morning we met with Dr. Jensen at the Huntsman Cancer Institute and this evening we met with Dr. Reichman at the Utah Neurological Clinic. After visiting with both surgeons, here is what we know:

- The tumor is about the size of a golf ball (1.5").
- The tumor is located just above and behind his left ear. 
- The tumor is most likely an astrocytoma. The exact cause of this type of tumor is unknown.
- Scott can't drive for 3 months from the date of his seizure.
- It is unlikely that Scott will have another seizure while on the prescription he's been given.
- The tumor is most likely slow growing, and Dr. Jensen guessed it has been growing for a couple of years. Dr. Reichman said it is probably a Grade 1 or 2.
- Both neurosurgeons agreed that Scott needs to have surgery and that the ultimate goal would be to remove the entire tumor. Depending on the location and other factors, part of the tumor may be left to prevent damage to the brain.
- Depending on if the tumor tests benign/malignant and how much of the tumor remains after the surgery, Scott may need chemo or radiation therapy afterwords.

There were a lot of similarities in what both Doctors told us, however, there were a couple differences. Before the surgery, Dr. Jensen recommends we first do a functional-MRI (fMRI) where they will have him do tasks for a few hours during the MRI. Physicians use fMRI to identify regions linked to critical functions such as speaking, moving, sensing, or planning. If the tumor is near any of these critical regions, they can take extra care when operating not to damage or remove these parts. Dr. Jensen's main concern is that the tumor may be near the language section of his brain. During the surgery (after the tumor has been removed but before they close Scott up) they can do another MRI to make sure they have removed the entire tumor during the surgery, so they wouldn't have to go in again. 

Dr. Reichman is more concerned about the effect the tumor could have on Scott's peripheral vision, and wants him to go have a test done with an eye doctor before he would operate. Although the tumor appears to be slow growing, he recommended removing it as soon as possible. He said there is always some risk with waiting because the tumor could be growing faster than they originally thought. Dr. Reichman would do a traditional MRI (rather than an fMRI) before the surgery and would not do another MRI until the surgery was completely over (no in-operation MRI).

Both doctors say that Scott will spend a night in the ICU, followed by 2-3 nights in the hospital. About a week after the surgery, Scott will be able to resume most of his day to day activities and about a month after that he should be nearly back to normal.
Right now we need to decide which Dr. we will go with and when to do the surgery. Both Doctors are able to accommodate Scott as soon as late next week, but we are also trying to take into account the fact that our baby boy is due in less than a month. Scott is in the middle of his semester at USU, but we hope his professors will be understanding and work with him. We will continue to pray for the guidance of Heavenly Father as we make these important decisions.

Thanks again for all the prayers and support. Everyone has been so kind and we have received many offers for help.

Saturday, March 1, 2014

A Scary Day

Yesterday morning at about 5am Scott had a seizure. We were both sleeping, but I was suddenly woken up when he let out a loud moan, followed by his entire body shaking. After he stopped shaking, I couldn't get him to wake up or respond to me at all. I wasn't sure if he was breathing or what to do, so I called 911. While I was speaking with them,, I heard Scott start to breath heavily, which was a huge relief to me at the moment. He still wouldn't respond or wake up, but I knew he was breathing. The 911 operator instructed me to pull all the blankets and pillows off the bed and get him laying flat on the floor. I put my arms under him and tried to pick him up, but I couldn't even lift him in the slightest. I told her that I was 8 months pregnant and he was probably 75 pounds heavier than me - I just couldn't do it. Then, Scott became conscious and moved across the bed - I could tell he was not himself and very out of it. He laid down flat across the bed, and I knew there was absolutely no way I could get him on the floor now. About that moment, the paramedics arrived, thankfully.

The paramedics started asking me all kinds of questions and trying to get some vitals from Scott. Like I said, he was not himself - he didn't know what was going on and was really confused - so while they were trying to get blood pressure, poke him, etc., he was trying to push them away and get out of the room. There were probably 7 or 8 paramedics trying to get him to lay down and calm down. I also tried talking to him to calm him down, but it didn't really help. They ended up giving him some muscle relaxers so they could get him out to the ambulance and to the ER. 

Lydia slept through the whole thing. I sent a text to our upstairs landlords because I figured we had woken them up (especially because I forgot to tell the 911 operator that we were in the basement apartment and they knocked on their door first :). What can I say. I was a little panicked... They were so sweet, came down immediately, and stayed with Lydia while I rushed to the hospital. When I got to the hospital, Scott was still conscious, but still not himself. When I walked in the room, the nurse asked if he knew who I was, and he was able to recognize me and tell her my name. He was pretty exhausted, so he kept falling in and out of sleep while nurses kept coming in and out of the room checking on us.. It wasn't until about an hour and a half later that he started to act like himself again and able to have conversation with me. Even though he was acting normal again, he wasn't able to retain or remember things. He asked me a few times what had happened. After about 2.5 hours, it seemed like he was finally able to start remembering the things that were happening. 

While we were at the hospital, Scott went through various tests to identify what could have caused the seizure. First, they took him in for a cat scan, and the results showed a mass on his brain. Since they needed to find out more detail about the mass, they took Scott in for an MRI. The doctor explained that they were not able to figure out any more about the mass out from the MRI, meaning we needed to meet with a neurosurgeon the following week. Most likely, a biopsy will need to be performed in order to test a sample of the tumor. They said it could be something simple, such as a cyst or lesion. Hopefully, whatever it is will be a relatively simple fix (as simple as brain surgery can be). A couple hours later, after they had some time to monitor Scott and he was feeling back to normal, they released him from the hospital. We weren't able to schedule anything with a neurosurgeon yesterday, so hopefully we will be able to get everything coordinated on Monday. 

Right now, we are all doing fairly well. Today Scott has a headache and has been feeling sore and tired, but other than that, he feels normal and will most likely return to class on Monday. Emotionally, it has been a lot to take in, but physically he has been feeling well. Hopefully the coming days and weeks will provide us with more answers. In the meantime, thank you all for your love and support! We have been so blessed to have so many praying and fasting on our behalf. We know Heavenly Father is watching over us and will help us as we get Scott the treatment he needs.