After Dad's MRI in October appeared to show "enhancement" (indicating tumor growth), I quickly started looking at other options. One of those being Optune (http://www.optune.com/). It's a device worn on the head of the patient, which has shown such positive impact on survival and quality of life for patients with recurrent glioblastoma (and recently newly diagnosed glioblastoma patients). I found a doctor at Scott & White in Temple that has many patients on this device, I've researched him (Harvard Medical School isn't too bad), and I knew that's the guy I wanted to see next- IF Dad had another bad MRI.
And would you guess- he was there last night! I immediately recognized him and knew I had to talk to him about Dad's case and have some sort of personal connection with him- because IF the time comes and we need him, I'm going to need him to remember us!
We discussed the treatment, and the NEW treatment options Scott & White in Temple has to offer glioblastoma patients- just talking to him was so incredibly encouraging.
We also discussed insurance- you know me, I need to know how we would be able to cover the cost of the device IF insurance denies the device. After doing a bit of research, the device is about $20,000 per MONTH. And...I realized currently Dad's insurance considers this "experimental", although it is FDA approved, and when Dad moves to Medicare, it is covered on a "case by case basis".
So, since October I've been stressing about us being able to afford this type of treatment, but last night as I spoke with the doctor from Scott & White, he assured me that the company that makes Optune wants as MANY patients as possible utilizing the device, so they work EXTRA hard to get coverage from insurance companies. He assured me that the cost of the device was not something I should worry about. I was overjoyed to hear that!
Mom and I enjoyed wine, food, dessert and a discussion on the advances in pediatric brain tumors. The Dr. Marnie Rose Foundation is doing so much in the brain cancer community! To hear all the funding they provide for pediatric research, and to see so many doctors at the event that are provided funding by the Rose Foundation for clinical trials and research- you can't help but feel so encouraged!
Meghan was able to stay with Dad and make dinner, while Mom and I attended the event. Dad's on chemo this week and he was not feeling the best yesterday- but he always enjoys when one of his girls is at the house, so I know last night was a good night for him.
We struggle with the side effects of the treatment, but we are so incredibly thankful for the treatment options and how well they have worked for Dad. When we told one of the doctors last night that we were 28-months post diagnosis, with no recurrent tumor- he looked shocked. Someone has to be that small percentage of people who BEAT this, or at least BEAT the statistics- and right now, Dad is doing just that.
We have 54 people joining us on April 10, 2016 for the annual 'Run For The Rose 5k', and we are so excited! We have also received over $1,400 in donations to the foundation to continue to provide funding for brain cancer research. It is truly amazing! If you are interested in joining us or making a donation to the foundation, please visit our team page (http://drmarnierosefoundation.racepartner.com/run-for-the-rose/bthobraincancer) or email me (glenzwhitney@gmail.com) if you would like more information. We are also ordering 'Team Lar' t-shirts again this year, if you are interested in purchasing one, please send me an email.
Last night my oldest sister called and talked about a family that received the same diagnosis as Dad recently, she talked about how devastating this was to that family- and we could relate all too well. But we hope that others can see these last 28 months of Dad's fight as encouragement and HOPE for a cure- and HOPE for beating the odds (regardless of the type of cancer). We hope that others can see that instead of being angry and upset about this path so perfectly created for us, we have instead embraced it and fought to defy the odds placed against us.
Thank you all for the continued thoughts and prayers, as we continue fighting to BTHO Brain Cancer
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