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.