Sunday, October 5, 2014

Chemo and Second Follow-Up MRI

Things have been going pretty well since the last update I wrote. Scott handled the max dosage of chemo very well again, and still didn't experience nausea. He still gets pretty wiped out for several days during and after taking it, but he says even the fatigue is getting to be more manageable. The Aphasia is still a battle. Reading is still tough, although Scott says he does feel he is making some progress and getting a little better. I think he's doing phenomenal, although of course I wish the progress was quicker. I remember in the hospital when they told me he would need speech therapy for at least a few months, and that was really difficult news for me to hear. At first I thought he might regain those skills within a couple of weeks, so to hear that it would take months was overwhelming. Once those first few months came and went, it became even more apparent that this was going to be a very slow and gradual process of recovery. Now, six months in, it's tough to realize again that he is probably only halfway to what we hope is a complete recovery.

A month ago, Scott had another MRI. I know we are pretty early in the game, but I couldn't help but be nervous. I don't know if I'll ever be able to shake those nerves going in to those. When they showed us the images from his MRI, they said a lot of the swelling and inflammation had gone down which helped them get a much clearer picture of how things looked. This time, they said everything looked great - no regrowth, and nothing to be concerned about, which is great news. Also, Scott's hair has started growing back, so it's been nice to see him with hair again :)

We're still not really sure what is in our future as far as Scott's schooling or how we plan to provide for our family long-term. A lot of that depends on Scott's recovery over the next 6 months. A while back I know I mentioned the possibility of me starting to work on an MBA. That will probably be in my future at some point, but I've decided that now is not the time I want to pursue it. With two kids under the age of 2 at home, it's just too much for me right now. If I did do an MBA, it would take away most of my nights and weekends, which I'm not willing to sacrifice that time I have with Scott or my kids right now. If we don't have more than a few years, I don't want to look back and regret sacrificing that time together for something I could do later on.

Going through this experience is constantly teaching me and causing me to grow. Having been on a mission and having the opportunity to talk to a lot of people about religion and different types of life situations and trials, it always seemed that many people didn't believe in God because of all the bad things that happen. There were always the questions of, "why me?" and wondering how a loving God could allow so many bad things to happen. Of course after learning the odds of Scott having what he does, it's hard not to think - how did this happen to us? It would have been so easy for this trial to pass us by. I know it would be easy to wonder and question Heavenly Father's love for us, but the truth is, this is one of the times in my life that I have felt His love the most. I know that might sound a little backward, but I can't deny the fact that He has given us an abundance of strength and love through all of this. I feel like He knew we needed this trial, but because He loves us so much, He has tried to make it as easy on us as He can. This trial could be extremely difficult financially, emotionally, spiritually, and, for Scott, physically. And it has been. I don't think anyone could go through something like this without difficulty, tears, and discouragement, but we've been amazed at how well we've been able to handle it and push forward. It's been amazing how we've been provided everything we have needed and more through family, friends, ward members, and neighbors. I know I've said this before, but I can't believe how generous, kind, and loving everyone has been. I've learned so much from all of you about how I need to live my life and the ways that I need to give to others. It's through all of you that I have gained a lot of strength.

I've also been amazed at how Heavenly Father prepared us for this trial. When I look back over the last couple of years, I can see ways that he blessed us and prepared us to go through this. We've both been blessed with amazing bosses, people who have been completely understanding, patient, and willing to work with our situation. I also have to recognize everything I've been given in the first place. We've had the chance find each other, be married for eternity, have 2 adorable kids, and know that we can be together in the next life. Some people never have the opportunity to have those things in this life. No matter what happens, I'm so grateful for the knowledge I have of a loving Savior and Heavenly Father and the Plan of Salvation. In fact, I've realized that gratitude, even during this difficult time is what has helped me have a positive, hopeful perspective. In April's conference, President Uchtdorf said something that I keep going back to over and over again. He said:

"Being grateful in times of distress does not mean that we are pleased with our circumstances. It does mean that through the eyes of faith we look beyond our present-day challenges.

This is not a gratitude of the lips but of the soul. It is a gratitude that heals the heart and expands the mind. True gratitude is an expression of hope and testimony. It comes from acknowledging that we do not always understand the trials of life but trusting that one day we will."

His words have helped me realize that it is okay when we aren't exactly happy with trials we are going through. They are hard. While I'm grateful for all I'm learning, I'm not happy that Scott has cancer. But, that doesn't mean we can't have gratitude, happiness, and faith. Those are what help us see past the pain and discouragement and know that there is a purpose and meaning that we will better understand someday. I truly feel that gratitude has, like President Uchtdorf said, helped heal my heart and expand my mind to be open and receptive to the things I have been learning. It's definitely a process with good days and bad, but slowly we are moving forward and keep hoping for the best.

Sunday, August 10, 2014

Chemo and First follow-up MRI

Since Scott has completed his initial round of chemo and radiation, there are a few things I wanted to update everyone on.  First, we went to visit with Dr. Cohen back on July 3rd, two weeks after he completed everything.  They did an MRI right before our meeting, however, there wasn't a whole lot of new information they could tell us at that point.  There was still swelling from the radiation, and it was still very soon after the treatments.  Basically, they told us they will use that MRI as a baseline to compare future MRIs to, and at that point - everything looked normal and good.

In this appointment, I also asked Dr. Cohen more about Scott's Aphasia (language deficits from his initial surgery) and what we can expect as far as recovery.  Recovery is still very slow and gradual, and Dr. Cohen said we should still expect months of recovery.  Ever since Scott completed the 6.5 weeks of chemo and radiation, he's been trying to go to work/school every day, for about 7 or so hours.  During the first week and half there, he finished an assignment from the class he was given an incomplete in, which resulted in his teacher giving him an A (yay!).  He also started to try to review papers, learn C++, and work on some programming.  It's been a real struggle for him.  The first few weeks were very hard on him.  Reading is still extremely difficult.  He says the comprehension aspect of reading is what is the hardest.  Reading a sentence is just too many ideas all at once that he can't grasp and understand.  One morning he was trying to review a paper and he told me that he tried for a couple of hours to just get through the first sentence.  I don't even know how he pushed through long days and weeks like that, but he did.  I can't imagine going to work and trying to learn, study, and perform on a PhD level when reading is as hard for him as it is.  All I can say is, he's been a trooper trying his best to move forward, and doing all he can to exercise his brain and try to get back to where he was.  At this point, Scott says he hasn't really noticed a difference in his reading skills, but he says he's gotten use to going in to work and it's not as overwhelming as when he first went back.  Right now, he's signed up to take a class fall semester.  He's going to give it the first two weeks to see how it goes, and depending on how he feels, he may drop it if he feels he's just not capable at that point.

Back in mid July, Scott started his first of 6 to 12 monthly rounds of chemo.  His chemo (temodar) is just a pill that he takes for 5 straight days, has 3 weeks off, and then starts again.  During this first installment, they upped the dosage he was taking while he was doing radiation.  Because of the increased dosage, they said he may be more likely to experience nausea, more fatigue, etc.  Surprisingly, Scott handled it very well, and still didn't have any nausea.  He still experienced a lot of fatigue, however.  Throughout all the treatments, Scott's vitals and immune system have looked completely normal.  The nurse said no one would even be able to tell he was taking chemo based on how his vitals look.  That has been a huge blessing!  Especially considering we have two kiddos that aren't exactly awesome at keeping germs to themselves. . . :)

On Thursday, we visited with Dr. Cohen again.  It was a pretty routine visit, with no new information.  They decided since Scott handled the last round of chemo so well that they are going to put him on the highest dosage of Temodar they can.  He will start taking those pills tomorrow through Friday.  We are really hoping he can handle this new dosage well - if he can handle this dosage, it will be as hard as it will get.

Lately, I've been thinking a lot about hope and faith.  There is a lot of information and research that talks about how important hope is when you have cancer.  We've heard time and time again how having hope can make a difference in how well treatments go and also with prognosis.  I recently took the time to read through a talk by President Uchtdorf, that he gave in October 2008 when I was still on my mission.  It really stood out to me at the time, and re-reading this talk again, there were new insights I was able to gain after going through all that we have in the past few months.  One section in particular really stood out to me:

"The adversary uses despair to bind hearts and minds in suffocating darkness. Despair drains from us all that is vibrant and joyful and leaves behind the empty remnants of what life was meant to be. Despair kills ambition, advances sickness, pollutes the soul, and deadens the heart. Despair can seem like a staircase that leads only and forever downward.

Hope, on the other hand, is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn. It encourages and inspires us to place our trust in the loving care of an eternal Heavenly Father, who has prepared a way for those who seek for eternal truth in a world of relativism, confusion, and of fear."

First of all, this quote solidified for me the importance of having hope when dealing with some kind of sickness.  An apostle states right here that the absence of hope can advance sickness.  It's amazing to me how connected the body and our spirits are, and how taking care of one can effect the other.  Second, I feel that throughout this whole process, Scott and I have been on both ends of the spectrum described here.  When we first found out he had cancer, I felt overwhelmed.  For the first little while, despair did set in.  I feel like I started mourning over opportunities I was sure would be taken away - growing old together, watching our kids grow up together, serving missions together, having more kids, Scott being at our kids weddings and graduations, etc.  I also felt a lot of fear when I would have thoughts about being a single mom, raising kids alone, becoming a financial provider, and taking on all the roles and responsibilities that Scott fulfills in our lives now.  All I can say is, the more I would think about those things, the more life seemed to lose it's vibrancy and joyfulness, as President Uchtdorf described here.  It truly can feel like a 'staircase that leads only and forever downward.'

However, after the initial sting of all this, I felt the power of hope.  I accepted that Heavenly Father loves us and had given us this trial out of love. I truly believe there is a purpose and reason for trials and suffering in this life.  I don't exactly know all the reasons why we were given this trial, but I know we were meant to have it.  Once I let go of all my fears, I feel like I was finally able to completely put my trust in Heavenly Father, and accept whatever he has planned for our future.  We tried so many times to look into our future and plan for what could happen and what direction we thought we should take. The truth is, sometimes you really can't see where you're going next.  Each day, week, and month brings something new and trusting in the Lord and relying on him is sometimes all you can do while trying to move forward.  Sometimes you just have to let go of having the control and trust that He will provide and take care of you each step of the way.  I know that is happening in our lives, and having hope has truly restored our happiness, joy, and gratitude for all that we do have.  

Monday, June 16, 2014

Radiation Complete!

After 6.5 weeks, 33 radiation treatments, and 49 days of chemo, Scott is officially done with his first round of treatment!  To celebrate, Scott's sisters Denise and Michelle threw Scott a party.  We had delicious subs, and everyone got silly string to celebrate.  The next morning, we loaded up a TON of stuff and headed back home to Logan.

It's been nice to be home, and we have somewhat of a normal routine again.  It was nice to get back into our own ward at home, and to see our friends and neighbors that we love so much again!  Lydia, Emmitt, and I are planning lots of play dates so we can catch up with everyone (and so Lydia doesn't go through cousin withdrawal too much).  I've been back to work for about a month now, which has been both a challenge and a blessing.  It's been tough to fit in the time with 2 kids, but it's been very worth it for me.  I continue to get great experience with my job, which is extremely valuable if I ever need to support our family full time.  I have been very blessed to work for great people, who have been very understanding and flexible with our situation.  I've been looking into possibilities for me to get my masters part-time at a few different universities.  Potentially I could start a program within the next year if we feel the time is right.

Scott has also returned to work/school.  The honest truth is that it has been really difficult for him.  His reading, comprehension, writing, and speaking skills are still slow, exhausting, and challenging for him.  His first week back, he put in about 15 hours.  He said what he accomplished in those 15 hours, he feels like he could have done in 1 hour prior to his surgery.  Scott is also still very tired from his chemo and radiation, and has still been napping when he can.  It will probably take a few weeks to wear off.  He goes in for a follow up MRI on July 3rd, however they probably won't be able to tell us much about how the treatment went.  They will be doing another MRI in a couple of months when Scott's swelling has gone down - this MRI should help us have a better idea of what the status is with the cancer.  He has a month off treatment, then he will start chemo again.  He will do double the dosage of chemo for 5 consecutive days each month for 6-12 months.  During that time they may even up the dosage more if Scott can handle it.  They told us the chemo will cause him to experience the same fatigue he has been experiencing during these past 6.5 weeks.

Right now, we are just pluggin' along.  There are a lot of unknowns right now for us, and some days it's a little overwhelming trying to figure out what are plans are moving forward.  We're still just taking things a day at a time and trying to rely and trust in our Heavenly Father to help us know what is best.  When I look back at everything that has happened over the last few months, I know he has guided and blessed us through this process so far, and know he will continue to do so.

Tuesday, May 27, 2014

Chemo and Radiation

Scott has completed 19 of his radiation treatments and has 14 left.  His last one is scheduled for June 16, and let me tell you, we are going to CELEBRATE when they are over with.  The first couple of weeks, Scott did great.  He had mild symptoms of nausea, fatigue, and a headache here and there.  However, these last 2 weeks or so he has been very tired.  He usually goes to bed pretty early and tries to nap every day.  He's also been doing his best to exercise and maintain a healthy diet.  The dietitian at Huntsman recommended he follow a plant-based diet, with lots of variety in fruits and vegetables, 100-140 grams of protein every day, little or no sugar, and red meat only once a week.  He's been doing awesome, especially with staying away from the sweets.

Dr. Cohen visited with us today to check in and see how Scott is doing. We also discussed a little bit about the chemotherapy that will follow this initial 6.5 weeks.  After Scott has a month off, he will continue to take the chemotherapy pills for 5 consecutive days each month.  When he starts doing that, the dosage will be about double what he is taking now, and they will evaluate in the future if they will up it even more after that.  During those 5 days every month, he will most likely be experiences the loss of energy and fatigue he has been dealing with right now.

Even though this has been hard on him, Scott doesn't complain.  He is doing awesome and has had a great attitude.  He's also been so helpful to me with the two kids.  Even though he is exhausted, he still offers to take the kids for me, etc. when I'd like a break.  He's an amazing husband, and there's no one else I'd rather have by my side.

Scott's hair started falling out last week.  He is only suppose to lose his hair where the radiation goes in and out of his head, but since he's been losing big patches on the left side, he decided it would be best to shave the rest of his head.  I wasn't sure what to expect, but I think he looks pretty amazing as a bald guy :).

Many of you have asked how we are doing with all of this.  Honestly, it's a whirlwind.  We have good days and bad days, but we are doing our best to move forward and live life.  For the most part, we are trying to have courage, faith, and hope, but sometimes it's hard not to feel overwhelmed and sad by the thought that our time together may be cut shorter than we would like.  We know that miracles can happen, but we also know that Heavenly Father has a plan for what is best for us, and we don't know what his will is or what our future will hold.  We have strong faith and trust in Heavenly Father, so we're just going to continue to live a day at a time to the fullest of our ability.  Scott plans to try to go back to work after he completes his radiation.  He will most likely still be experiencing fatigue for a while after his treatments, so he's going to do the best he can.  He is still working on his language, reading, and writing skills and they gradually continue to get better.

Lastly, I want to say THANK YOU.  I can't tell you how many times I've wanted to sit down and write each of you personally a thank you note.  I finally came to realize there is no way I could thank everyone who has done something for us over the last 3 months.  There are so many of you that have given us your time, support, babysitting, meals, money, love, e-mails, texts, etc.  I honestly don't know how we could be making it through all of this without the many of you who have been so generous.  I am in awe of the wonderful examples we have around us, and am humbled to be the recipient of so many selfless acts of kindness.  We are truly surrounded by amazing friends, family, and ward members.  So, thank you to each one of you.  Even though we haven't been able to respond and thank all of you individually, we truly appreciate everything and the burden of this trial has truly been made lighter because of so many of you.  We love all of you!

Tuesday, April 22, 2014

Some Good News

Today we met with a dietitian, speech therapist, radiologist, oncologist, and the neurosurgeon. It was a long day! We scheduled his chemo and radiation to start next Wednesday. As I mentioned before, he will be doing this radiation treatment 5 days a week for 6 weeks and the chemo will be every day for those 6 weeks. Our discussions with the doctors mostly centered around the side effects he may/may not experience (nausea, tiredness, loss of appetite, loss of muscle mass, etc.) and the medications he will be taking.

We did have some positive news, which we are very happy about. Dr. Cohen told us he had gotten a result back about Scott's tumor where he tested positive for the IDH Mutation. Apparently, those who have AA where the IDH Mutation is present respond better to treatments and take longer for the tumor to grow back. With Dr. Jensen being able to perform a complete resection and the presence of the IDH Mutation, there is a lot of hope for many years, despite the original outlook of 3-9 years. The radiologist also talked to us about a lot of positive research going on that may improve chances for survival in the future.

Thank you again for all your love and support. We are so blessed to have many wonderful family and friends helping us through this!

Tuesday, April 1, 2014

Scott's Diagnosis

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.

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.