Tag Archives: Surviving Glioblastoma

Glioblastoma – Long Term Survival

This information is easy to find when newly diagnosed with Glioblastoma:
“The median survival of glioblastoma patients is approximately 12 months. However, 3-5% of the patients survives for more than 3 years and are referred to as long-term survivors.”
 
This part, however, somehow I never came across until Mike experienced it:
“When long-term survival does occur it is often accompanied by severe treatment-induced dementia.”
 
I remember so clearly Mike talking about the “life reset button” that he felt he was given. If he had known the future, he probably would have been tempted to opt out of treatment. I’m glad he didn’t know because he wouldn’t have understood the plans God had for him or understood the lives he’d touch by his tenacity to face each day.
 
By the time a person is diagnosed with Glioblastoma, their ability to research and advocate for themselves is usually pretty limited. Due to brain swelling, Mike was severely confused. I’ve walked many people through the first weeks of diagnosis…the hard part is knowing that long term survival is rare…and even if they are “blessed” with long term survival, chances are their lives will never be the same. I’m about as thankful as they come…but some days don’t feel so blessed. That’s the reality of what we are living.
 
May was brain cancer awareness month and I’ve learned that GBM is more common than I ever realized. God placed in our path a widow who had walked out GBM with her husband before Mike’s pathology even came back. She was a friend of a friend. Because of that, I felt two steps ahead because I was able to research. Sitting in the doctors office and hearing GBM – I already knew what we were up against and I had already done research. When the surgeon told me NOT to go to Duke or ask for a second opinion, I already had my mind made up that we were going. Had I not already done the research, I might have never pursued the brain tumor center at Duke.
 
Just some random thoughts as Mike’s official 4 year date of his first surgery and diagnosis is coming up. 4 years ago he had a deadly brain tumor that was growing and causing havoc, we just didn’t know the extent of what was going on in his head just yet.

Christmas Baby!

I am sorry that it has taken me so long to update. Things have been crazy, as you can imagine. I’m so proud to announce that our Grandbaby was born on December 25, 2015!  She is 3 weeks old and we all love her so much. The labor and deliver went smoothly and our daughter was amazing throughout the whole process. I was able to be in the room for the entire labor and delivery because my sister, brother and law and mom all stayed at our house to take care of Mike and the other two kids. Another cool fun fact is that they came home from the hospital ON MIKE’S BIRTHDAY!  What a birthday gift!

As you look at these photos, I hope that you see God’s grace.  I’m so proud of our daughter for choosing life.  Becoming pregnant at 15 was overwhelming, but God’s grace has really been present through this entire situation.  We are closer than we have ever been as a family and we have more joy than we have ever had. I am devoted to guiding Kayla in  motherhood and making sure this sweet baby is loved and provided for. We’ve got this.

Mike was able to meet his grandbaby in the hospital and I will share the video that captured him meeting her. The very last few second is the best.

Another exciting fact is that this month we celebrate that Mike has been on hospice for TWELVE MONTHS!  Praise God!  He is 43 months PAST GBM DIAGNOSIS!

Caralyn Elizabeth Emmons born December 25, 2015. 7lbs 2oz, 19 inches long.

 


Fundraiser

We have been so blessed each year around this time (each October our year resets and the medical bills swarm in until about January when we meet our cap) by an online fundraiser and The Semper Fi Fund helping with medical bills. One of my closest friends set one up again and I wanted to share the link here.  Even if you don’t donate, check out the gallery of photos of my amazing family.  I love the photos on there, I feel like they sum up our family perfectly!

Today Mike is doing well.  I’ve found the most perfect channel for him, its called “Velocity” and its all cars, all the time!  Anytime there is a 70’s model Chevrolet Chevelle on there he gets really excited because that is what he had in high school!  They seem to come on the Mecum Auto Auction show quite often.  Its really fun to see him get excited.  There are quite a few shows that restore cars too.  He really enjoys those shows.

Right now he’s watching a Christmas movie.  Happy Saturday everyone!

Click here to see the fundraiser!


January 31, 2013 – Surviving Glioblastoma Update

Another trip to Duke has come and gone.  I will update with praises and prayer requests….

Praises! 

– We are so thankful that Mike’s scan was beautiful.  Nothing abnormal came up on the MRI of his brain. The cavity still looks clean with no regrowth, and there were no signs of any new growth anywhere else in his brain. 

– He passed a driving evaluation.  The doctors said that he seems to have the vision and reaction times for safe driving, but they told him to use his best judgement as far as how he is feeling each day and to make sure he really overcompensates for the vision loss on the right by scanning as he drives.  (So it looks like we can start shopping to replace his totaled truck.)

Prayer Requests…

…The vision loss that was discovered 7 months ago will only come back with a miracle.  That part of his brain is just not there any longer.  

…Balance, focus and short term memory issues. 

…Low platelets.  We aren’t sure if yesterdays low platelets meant that his body is on its way up from a small dip, or on its way down.  We will know more after a blood test tomorrow.

…Because of the low platelets, Mike was not able to get his treatment today.  The Avastin infusion and chemo has been postponed until his platelets go above 100 again.  We were really hopeful that this lower dose this month was going to be easier on his body, but he is having a rough time with it still. 

…Because Mike is unable to receive Avastin as scheduled, they are threatening to kick him off of the clinical trial.  This was probably the most unexpected news that we got and the news that shook us the most.  Emotionally we decided not to “go down that road” and go over all of the “what ifs.”  We have truly felt from the beginning that this clinical trial is the best weapon to fight this glioblastoma.  We have one more round to see what the decision will be and then we will go from there. 

Thanks for all the prayers,

ShaunaImage