I wanted to start a prayer chain for a very special little girl whose mother is a friend of mine. Kira, 15months old, has suffered from seizures all of her litttle life. The following is a note from her mom about her most recent MRI. Please say a prayer for this beautiful little girl and pass it on.
It appears this lesion is a TUMOR and growing, it showed very well with enhancement on the MRI and is along the brainstem.. The area is a very delicate area to operate in and there are some significant risks. The doctor needs to get it out but again there are some pretty SIGNIFICANT side effects with that. It was a huge blow as they were fairly certain it was a 'hamartoma' and would not change. We don't know treatment options until a tissue sample is taken , the surgeon said that if he has to go in and take the tissue he may as well take the whole thing. He'd have to go in through the side of the temoral region.. I am more than terrified. Right now he wants to err on the side of caution and wait 6 - 8 weeks and repeat MRI this time include the spin and do a more detailed look, see how FAST it is growng and to confirm that it did indeed GROW and then he want's to remove it/biopsy it or depending on what we find.. MRI it every few months and decide as we go. That was only the TIP of the 'crappy' news. He feels he found the source of her seizures which is unrelated to the Tumor, he found 'occipital heteropias' , which is something they CAN'T FIX. So we are going in to look at that again. That leaves us with little hope of curing or fixing the seizures and the options offered to us were to 'separate the hemispheres' so that seizures won't generalize ... or... a VNS (Vagnus Nerve Stimulator) which is a pacemaker for the brain.. which , may or may not work and would only stop the bigger stuff , not the 100' s of small seizures daily which we are still hoping the new med will stop.
Also added from another friend.... "Obviously Nik and her family are extremely distressed, and stressed with each other, so please send some calming vibes to them. And please, please, keep Kira in your prayers, and pray that surgery won't be necessary on that beautiful little girl.
Thank you all so much!
~Lynda, mom to Joshua and Jacob (4 & 5's board)