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!

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!

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.

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!

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!

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!

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.