It was a very long and emotional day. We talked to Dr. Aguilera about all the risks and benefits of EVERYTHING! We are walking a fine line with Nolan. When you've had someone on as many regimens as Nolan and continues to relapse, you are left with very few options. Dr. Aguilera is basically making up everything as she goes. We will not do nothing but we are not being super aggressive either. We are trying to stay right in the middle, so Nolan can be Nolan and he can enjoy all the things Nolan loves to do.
We met with Dr. Natia this afternoon, signed the papers and went ahead and did his radiation simulation and mask fitting. We don't have an exact number of how many days Nolan will be doing radiation, but right now she is saying 3-4 weeks. He will go every day Monday through Friday. It will be a long month and I dread the drives to Atlanta every day, but I know we will get through this.
So Here's the plan...
Radiation starts Wednesday and will go everyday Monday through Friday
As soon as radiation is completed he will start his new chemo. This is not all written in stone yet but he will get weekly carboplatin infusions and bi-weekly avastin infusions. Along with this he will take an experimental drug called Everolimus. Nolan would be the first Patient with Medulloblastoma to take everolimus here in Atlanta. So there is good and bad to that. It could work and it could not? We have no idea. The other thing is, Dr. Aguilera said it's going to be hard to convince the insurance company since there is not much documentation about this drug on kids Nolan's age and with his type of tumors. Please just pray for guidance as we research all these chemo meds and that we would find what is best for Nolan.
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| This is Nolan getting fitted for his radiation mask. (He will wear this for every treatment.) They bolt the mask down to the table to ensure that Nolan won't move. |
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| Another picture of the simulation being done |
Thank you for all the support and prayers right now!
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