OUR STORY AT ONE YEAR - Alicia Wagner

A posting to the Braintmr e-mail list on Thursday 11 October 2001. Reproduced with permission.

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Hi.
I read every now and then about the anniversaries that all of us in the brain tumor world celebrate (for lack of a better word), that tell the back end story of how we got to were we are today.  I thought I would also send this to our friends and family, since they have been such a huge part of the fight.


The short story


One year ago this week, Tres and I found out what a brain tumor was. I remember having dinner with my father, brother, and best friend after sitting all day at Sloan Kettering (Tres' first surgery), and asking them "does this mean Tres has cancer?"  I forget what my father said exactly, because I was pretty numb at that point, but I think he said "no," hoping I would believe him and get a good night's sleep (I was 3 months pregnant, and needed it).


After hearing the prognosis of 6 months - to 1 year, we knew we had to find the best place for Tres to be treated.  Glioblastomas are so deadly ... fatal almost 100% of the time ... we thought we knew what we were up against.  Tres went back to work about 2 weeks after surgery and we tried to live life as normally as possible.  After all ... we had an 18 month old to think about!


Within days of the prognosis, I called Rebecca Libutti, (a 5 year survivor), randomly and asked her where she was being treated, and she mentioned that she flew to The Brain Tumor Center at Duke and was very impressed. Tres and I had nothing to lose and we trusted Rebecca, (she was alive for 5 years with a GBM so how could she be wrong)?  We ended up flying down to Duke just a couple of weeks later with options of treatments and much hope was given to us.  I remember Dr. Henry Friedman saying that Tres has the three things he needed to beat this thing 1) youth, 2) health, and 3) a very aggressive wife!  You got that right!!


After a second surgery, radiation, and several trails at Duke the tumor just kept growing.  It was about 4 weeks after the birth of Lily that we were faced with the hardest decision anyone has ever has to make.  Do we continue with treatment?  It did not take us long to decide that the best decision we could make was a "life" decision, not a "medical" one.  People around us were confused by this, but we had to do what was right for our young family.   The doctors at Duke gave us 6 months.


Here we are at month 6, and Tres keeps going!  He left work only a few weeks ago, he still does the lawn, finished building his shed, painted the bathroom, and now is heavily into jigsaw puzzles (which keeps him very busy)!  Tres has declined since treatment ended, but ... we keep on living everyday knowing that the end could come at any time.  We know how fast this disease can take over ... we know, I know.


Thank you God for the miracles you send us everyday ... thank you for putting Tres in such a peaceful frame of mind.   Being in a room with him is like being in a room with angels ... I think they follow him wherever he goes.  I feel confident knowing that the journey ahead of Tres is of great importance (he thinks the pearly gates need some fixing) ... I think God misses his buddy!


Anyway ... I just wanted to thank everyone along the way that has helped us.  Dr. Reardon, Hutch, Stacy ... without your help and constant support (through the rough decisions), we would not be where we are. To all of our families and friends, and my brain tumor family ... thank you for loving us and praying for us.  To Billy, thank you for Karlene ... without her I would never get a minute to myself.   A special thanks to our daughters, Autumn,  Lily, who remind us everyday what love is ... and to Tres ... who reminds me everyday what it feels like to live.


Thanks,
Alicia.
w/o Tres (29) ... GBM... no active treatment since April
m/o Autumn (2), and Lily (6 months)