We had a long day at clinic today. All Kys numbers looked great, but her hemoglobin was low so she needed a blood transfusion. We also went over her PET scan she got on Wednesday. It showed a lot of progression on her right hip, which was a little discouraging. Her last PET in November, when she was on the BRAF trial, looked great and that the BRAF wasnt only killing the VIP, but the neuroblastoma as well. This coming week we will be starting her back on the BRAF as well as another drug called Trametinib. We are extremely nervous about starting the BRAF again because it was the cause of the brain tumors, but this added drug is suppose to stop the BRAF from entering the brain. We are praying with everything we have that this new drug will work well with the BRAF because the doc said this was our last option. If the BRAF doesnt work and she still has the VIP, her little body wont be able to handle any of the regular neuroblastoma treatment. They would be too hard on her. We are standing strong in the fact that when we thought all hope was lost when ky first relapsed, randomly out of the blue this new piece of evidence in Kys tumor appeared, which led us to this drug. God lead us to this drug. Back then we believed it would be Kylies cure and although we have had some hiccups, we still believe this is the treatment that will save our girl. There is a reason she is still here. He has a purpose for her. We could have lost her many times along the way, but his plan for her is so much bigger!
Posted on: Sat, 03 Jan 2015 04:00:51 +0000
Trending Topics
Recently Viewed Topics
© 2015