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Apr 28-May 04

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       Been a while since we wrote an update and unfortunately today we write with heavy hearts. Mom had her check up this week in Rochester. Her and Kt headed out on Sunday. She had MRI; pet scan and such on Monday. Tuesday she met with Rehab doctor- uneventful and then neurologist Dr. Ruff. Her tumor is BACK; she has regrowth in the same area with some extra extending up to the brain stem and down the spinal cord as far as the scan went which is about at her ribs. Dr. Ruff left us with I'm Sorry and few to no options but he still wanted us to meet with oncology as that was scheduled Wednesday. He said this tumor is growing rapidly and is just plain ugly. He gave us the same awful outlook of losing her sight, speech, breathing as it grows. We put a call in to our trusty Dr. Meyer as a cry to please tell us something different. He got us in on Wednesday. 
        Wednesday she met with Medical Oncology-  He said he had a couple options. This tumor is rare and not much info so he said it was fishing in the dark.  He wants her to start to medications.  
#1- chemo drug- 28 day cycle-  takes for 5 days and then off for 23. Insurance should pay for this and just waiting for auth so we can get and try to stop some growth. 
#2- Trial drug- She would take this daily-  Insurance struggles to pay for this and so he is working with them. Waiting to hear back to we can began this as well. Used for a tumor of the eye that has similar characteristics of moms tumor and has had good results. 
He also wants to do some extra testing on tumor to find mutations to see if any others drugs or options. 
        Dr. Meyer and our trusted Nurse Paul.  Snuck us in today- unfortunately surgery is not an option :( . He said he would consider it if just the one spot but with the extending areas it can't be done. Mom asked him if he thought she had a chance and he said "I gave you 1% chance to come out of your last surgery and you did it so if anyone has a chance its you with your fight and positive attitude. Paul also set up a E consult with a radiation oncologist to see what options they have to help stop any growth. 
        Mom has been having some symptoms in the last 5 days as the tumor has reached the brain stem.  She has had some difficulty swallowing and her eyes are having trouble focusing and double vision. She has to cover one eye to be able to focus.  Please pray we can get these drugs started and they can help shrink this stupid tumor and that insurance approves them fast to stop any further progression of symptoms. Unfortunately they feel that damage that's done is done.
      Mom and Kt are on their way home now. Please pray for her comfort on this long drive and in the next coming days. Her strength is amazing and we are staying positive that we can get a handle on further growth but the last 24 hours have been extremely difficult and not the news we hoped for. Positive note:  the pet scan was negative- no cancer anywhere else.  Her Rehab is going well; she got fitted for a brace and has been working on walking with walker. #Barbstrong
      

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