It's been a lot of ups and downs over the last few months and I apologize for not updating more often. We have honestly just needed some time to process some things and tell family what we know and let it sink in them too. But, it's time we update those of you who have walked this path with us.
So..... here goes it....
Michael has been accepted into a clinical research study at the UCLA Center for Brain Injury and Disease for Chronic Traumatic Encephalopathy (CTE).
So what is Chronic Traumatic Encephalopathy? You may not realize it, but you've probably heard of it. It's otherwise known as the "NFL Football Players Disease". It is a progressive degenerative disease of the brain that has no cure and no treatment. There are 4 "suspected" stages and the progression of it affects both the mind, and the body as it moves from stage to stage. It affects cognitive function initially, but quickly moves into behaviors. Things like memory, word finding, mood, temperment, staying on task, etc. As it progresses, those things continue to decline, but the physical symptoms, like balance deficits, start to begin. There isn't too much known about it, but there is a lot of research being done to help with diagnosing it and hopefully treating it, or slowing the progression and that's where this study comes in.
CTE is something that has came up a few times over the last year. While a few of the doctors early on brushed it aside pretty quickly because he clearly had the Chiari Malformation and Spinal Pressure Issues, Michael has kept it tucked in his mind fearful that it is what he was facing and recently admitted he has thought it's what he has been dealing with for a few years now. At an appointment with the neurosurgeon about 4 weeks ago it came up again, only this time the conversation quickly turned serious. Dr. Wilson had Michael go back to the very beginning of his head injuries - pre surgery - pre migraines. All the way back to the 7th grade when he had his first head injury, the 20+ documented concussions since then, the closed head injury in 1995 when an 80+ pound door fell on his head while working in Indiana, and then the explosion at the movie theater he was in back in 2006. Add to that he had brain surgery.... while controlled.... it's more trauma to the brain. He said (what we all were thinking) it just didn't make sense why nothing has worked to help him. Dr. Wilson told us with the symptoms Michael has, the decline he's had physically and cognitively over the last year, and the images he's seen.... it can't be ignored and should be looked into further. Shortly after that his records were sent to one of the only 2 universities studying the disease. Not even 48 hours after they were sent we were contacted by UCLA notifying us that he was accepted into their clinical research study.
This Clinical Research Study is just that.... it's research at this point and is not a clinical treatment trial. We will travel to California the first week of January to get this ball rolling. Michael will see one of the neurologists, who works closely with the director for the study. This is when we hope to learn more about how this all works as well as ask our hundreds of questions about CTE (there really isn't much out there on it! Trust me... we've looked!) They will connect him with a neurologist here in Phoenix that that they will consult with after that so we won't have to go back and forth to LA too often. The neurologist here will track his progress (or decline) and report it to UCLA. The benefit of participation is that when (and I prefer to say WHEN, not if) a clinical treatment trial starts, he will be automatically included in it.
Michael (and I) have prayed all along to just KNOW what was wrong. At one point he even said to a doctor "I don't even care at this point if it's a brain tumor.... I just want to KNOW!". As scary and uncertain as CTE is and with the grim outlook it has down the road, we really are THANKFUL to know what the ugly beast is. Sure.... it's been a bit of a tough pill to swallow. It's been hard to let it really sink in that he may never be the way he was 5 years ago or have the energy/ability to hike through the Monongahela Forests again. Or come to terms with grasping 5 years from now may look even worse than where we are today. But at least we know what it is and don't have to listen to any more doctors tell him there's nothing wrong.... or worse yet tell him he just needs to see a shrink (yes.... this really happened!). So.... we choose to be thankful!
This leads us to the prayer requests....
- That there would be a clinical treatment trial implemented soon and it would move quickly to a full treatment for ANYONE who suffers with CTE!
- That Michael would just have the strength and energy to enjoy each and every day through the holiday season!
- That we would be able to get to California without financial worry and stress of travel expenses!
- That our kids just remain innocent and happy through Michael's struggles and not be worried about what tomorrow will look like!
- That on the hardest of days, we would continue to be thankful and have faith that this is all part of God's plan for Michael's life.
- That we would be able to stay firm in our faith and not waiver!
- And that in the end, Michael would be fully healed and restored with ALL of the glory going to God!
Again, we continue to thank you all for your love, support, and prayers along this journey!
"Now to HIM who is able to do IMMEASURABLY more than all we ask or imagine, according to HIS power that is at work within us, to HIM be the glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." - Ephesians 3:20-21 (NIV)
