Tuesday, December 27, 2011

Things are not great but that's nothing new and never boring

This morning I went into the hospital for what I knew was going to be a very long and hard day. As I mentioned in my last post, I was due to meet the director of the clinic, have an MRI, and then a spinal tap. It was going to be a long day of poking and prodding no matter what. After my MRI, I talked with the neurologist and we looked at my MRI and noticed that the tumor had grown a lot more than they anticipated since my last scan.
I'm not a neurologist but I had an idea that this was going on. Someone who has a brain tumor cannot be naive enough to think that having seizures, getting terrible headaches, and having trouble processing information is nothing. This does not mean it was not difficult to hear. The tumor was big enough that they rescheduled my spinal tap for friday. The results of the spinal tap will be the ultimate determination about whether I'll be eligible for the treatment.
The bottom line is that the growth is faster than what is the norm so the clock is accelerated. Meaning, untreated, this tumor will take my life inside of 6 months.
The good news is that the director informed me that this was no longer considered a trial but an FDA approved treatment method. that does not mean that it will work for me at all. It does mean that there had to be a good bit data that showed it was effective as a method of treatment in a large number of cases. Dr. Wong, the director of the clinic still thinks this treatment is a good option.
I am going talk to Dr. Q tomorrow about the scans and see what he thinks the best option is at this point. I'll be posting more often to update people because it is exhausting to have to relay this information to a lot of people.

2 comments:

ahusich said...

Found those MD lax mesh shorts you gave to me a few years ago because they were too small for you. Reminded of that night that you, me, Kyle and Steph wore a BGE helmet while playing drinking games until 3 am. Then you and Kyle tried on my clothing which was way too tight for both of you :-) Made me smile. Thinking that there will be more good times to come. Try and keep your head up as hard as it may be. You are always in my thoughts and prayers.

John C. said...

John, my sons went to OM with you. I remember you and your mom. I saw the news piece they did on you running with your Doctor. Kelly Reinhart has forwarded some of your blogs because she wants us to pray for you.
You are a very courageous young man. Many have crumbing under the weight of something like this This has to have been so painful and frustrating, and such a strain on you. We all want to encourage you, but most of us don't have a clue what you're going through.
I hope to encourage you by telling you that have been an inspiration to me. I realize I take so much for granted and my perspective on life is sometimes misdirected.
Who knows why some have great health and then someone like you has to painfully fight for his life everyday.
Its certainly not anything you did wrong any more than someone having great health has earned it.
The silver lining behind many stories like yours is it often makes people start seeking answers to questions others don't bother thinking about. You start to see how helpless and needy we are. It's comforting to know that there is One that is all knowing, all powerful, and all loving.
It breaks my heart that you are not able to enjoy the joys of good health. I will pray for God's grace on your life. That He heals you and allows you your desires.
But the truth is we are all terminal and our focus should be on eternity, not this brief time we spend on earth.
My prayer is that thru all the pain and confusion, you will find that there is a God that loves you and wants good for you. The bible never promises us a rose garden. It fact it says the opposite. Life is sometimes hard and unfair.
It's people like you that inspire others to not give up.
I imagine there were times that you wanted to.. but you didn't. I hope you realize in times of solitude, that you are having an impact on this world.
I pray Gods grace and mercy on you and your family!
John Carpenter