Matt Levi | CaringBridge

Matt Levi

First post: 11/27/2016 Latest post: 4/5/2017
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November 14, 2016


Hello friends and family,


These last few weeks, I have learned anew the value of my faith, family and friendships, old and new.  Oh how wonderful to be loved and supported by so many.  Prayers, support, calls, emails, notes, hugs and smiles have been so heart-warming and most appreciated.  I also am now understanding the difficulty of keeping up communication with folks, who we have talked to, who we haven't, who we still need to, etc.   Having appreciated the beauty of Caring Bridge from the friends and family side, I think it will be helpful from the "people in need" side.   


Thought I'd simply share the email that I sent to many of you several weeks ago in the way of background...  

Matt and I celebrated our 28th wedding anniversary October 21st.  Where the years have gone I have no idea.  It seems that it was just yesterday that we moved into our home at 3659 Harrison with our 6 week old baby, Parker.  We have much for which we are thankful.   So many wonderful family members, friends and neighbors like you are counted among our blessings.  Your friendship is important to us and appreciated.


Matt and I recently learned what our newest challenge will be.  And so we turn to you, "our peeps" for your support and prayers as we navigate the world of brain tumors.  Matt was diagnosed with a "glioma" brain tumor on October 7th .  Since then, we have met with a neurologist, neuro-oncologist, a neuropsychologist and a neurosurgeon.  This is what we know so far:


The tumor is in Matt's left temporal lobe, not the best place to have a brain tumor, if one could choose, but its not the worst either.They strongly suspect it is a glioma.  Confirmation of this can only be done through a biopsy or surgical removal of the tumor, then pathology would further determine what grade and specific type of glioma. They suspect it is a grade 1 or 2 tumor, highly unlikely that it would be a grade 4.   We had our 2nd appointment with the surgeon at the end of October, where we learned more specifically about the benefits vs risks of complete removal (or as much as is possible) vs biopsy only, based on the neuro-psychological testing Matt completed.  The surgeon feels that surgery to remove as much of the tumor as possible is the best option, to optimize tumor control.  Matt is already showing memory loss for a person his age, based on the tests.  Leaving the tumor in place will lead to more memory loss with time.  The risks of surgery however, also include 20-40% more short term memory loss.    


How did all this come to pass?  Some of you may be aware that Matt spent a couple days in the hospital at the end of August after his approximately 6th episode of passing out in 6 months.  He had every test known to man. Though we did not come away with any solid answers, cardiac issues were ruled out.  Neurological issues were more likely the cause, based on the MRI.  The neurologist asked for a repeat MRI several weeks after the 1st one to see if this "spot "in the brain had changed since August.  The lack of improvement in this spot led to the tumor diagnosis.  


I have had many "God moments" that give me peace and comfort that we are in wonderful hands with the surgeon at KU.  Matt's surgery is scheduled for November 30th.  That being said, we are continuing with our plans to travel to Mayo Clinic in Rochester, MN on November 15th for a 2nd opinion and post-surgical treatment options.


As difficult as these last few weeks have been, I have somehow been filled with an amazing sense of peace and calm.  I know that the grace of God will carry us through this challenge.  I pray for wisdom, courage, comfort and trust.   I humbly ask for your prayers and positive thoughts in the weeks ahead.

Thank you for your love and support.


Katie

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