Journal entry by Michelle Ohren —
Good Morning All-
It has been a minute since I have updated this site. We are nearing 9 months since Ron's diagnosis. In some respects it feels like the longest stretch of our entire lives and on the other hand with all the twists and turns of this journey things are flying by. We continue to have hope and are praying for miracles everyday. We are thankful for all who continue to call, text and pray for our family.
We went to the cities the day after Christmas for an MRI and appointment with the doctor. This was a quick turnaround from his last MRI that was done Thanksgiving weekend. That imaging showed significant swelling which is caused by one of two things: 1-Necrosis which is very damaged or dead brain tissue caused by radiation or 2-tumor progression. Based on the scan, he would need infusions to get the swelling back in check. The doctors were very surprised that he was only experiencing fatigue. Dr. Neil stated that we treat the person and not the scan and since he was really only having fatigue, she did a slight increase of his steroid and will keep other treatment options in her back pocket. (The infusions can have a lot side effects and would disqualify him for a lot of clinical trials going forward.) Unfortunately, the month of December was tough. He had a lot of headaches, extreme fatigue, nausea, and dizziness. Monday's MRI showed progression of swelling. It feels frustrating that they can't tell definitively what is causing the swelling without a biopsy. One thing the doctor said yesterday that was positive was with his type of GBM (wildtype and unmethylated) when it does return there is usually no question of what it is, so Ron's scans of undetermined give us hope. The plan going forward is to do a significant increase in steroid. Steroids worked magically in July so hoping for the same results. I am running to the store today to stock the freezer. He couldn't get enough ice cream when he had a high dose of steroids before and since this dose is even more-we will be ready!!! He has one final round of chemo that will start on Jan. 2. Dr. Neil lowered the dose in hopes his body will tolerate it easily. We will head back to Minneapolis at the end of Jan. to do another MRI and see how everything is looking.
All of the ups and downs of this ride and Ron continues to fight. He is still supporting his Minnesota teams (even the Vikes) and appreciates the visits, calls and texts. Keep the prayers coming! We love you all and hope you had a great holiday with your loved ones.
It has been a minute since I have updated this site. We are nearing 9 months since Ron's diagnosis. In some respects it feels like the longest stretch of our entire lives and on the other hand with all the twists and turns of this journey things are flying by. We continue to have hope and are praying for miracles everyday. We are thankful for all who continue to call, text and pray for our family.
We went to the cities the day after Christmas for an MRI and appointment with the doctor. This was a quick turnaround from his last MRI that was done Thanksgiving weekend. That imaging showed significant swelling which is caused by one of two things: 1-Necrosis which is very damaged or dead brain tissue caused by radiation or 2-tumor progression. Based on the scan, he would need infusions to get the swelling back in check. The doctors were very surprised that he was only experiencing fatigue. Dr. Neil stated that we treat the person and not the scan and since he was really only having fatigue, she did a slight increase of his steroid and will keep other treatment options in her back pocket. (The infusions can have a lot side effects and would disqualify him for a lot of clinical trials going forward.) Unfortunately, the month of December was tough. He had a lot of headaches, extreme fatigue, nausea, and dizziness. Monday's MRI showed progression of swelling. It feels frustrating that they can't tell definitively what is causing the swelling without a biopsy. One thing the doctor said yesterday that was positive was with his type of GBM (wildtype and unmethylated) when it does return there is usually no question of what it is, so Ron's scans of undetermined give us hope. The plan going forward is to do a significant increase in steroid. Steroids worked magically in July so hoping for the same results. I am running to the store today to stock the freezer. He couldn't get enough ice cream when he had a high dose of steroids before and since this dose is even more-we will be ready!!! He has one final round of chemo that will start on Jan. 2. Dr. Neil lowered the dose in hopes his body will tolerate it easily. We will head back to Minneapolis at the end of Jan. to do another MRI and see how everything is looking.
All of the ups and downs of this ride and Ron continues to fight. He is still supporting his Minnesota teams (even the Vikes) and appreciates the visits, calls and texts. Keep the prayers coming! We love you all and hope you had a great holiday with your loved ones.
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