We met with Ricki's neurosurgeons today to review her PET scans. She has a little more than we had anticipated going on. The doctors informed us that Ricki's tumor in the thoracic outlet is growing and is about the size of a small orange and needs to come out. They will schedule a time when both surgeons can perform the surgery. We also discovered she has another small orange size tumor sitting just above her aortic arch. This tumor is on the threshold of being cancerous and so they want to do a biopsy of that tumor but it will be quite the procedure because they will need the guidance of a ct scan as they do it. Even if it comes back negative we will have to have another PET scan in 6 months and they will be monitoring it closely. Not exactly the news we wanted to hear.
On the bright side however...in preparation for Rare Diseaase Day they posted Ricki's photos and story ! They turned out beautiful! If you are interested in viewing her story her link is;
http://utahrare.org/ricki/
http://awareofangels.org/ricki-neurofibromatosis-type-2/
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