Laila’s battle to reclaim her life after treatment

There are no words to express the fear, anxiety and uncertainty we are facing as a family. My only child Laila has Rhabdomyosarcoma and we thought the worst was behind us. We rang the bell in June. We spent some months healing and next Monday is supposed to be her last maintenance infusion. Her symptoms reared their ugly head and now we are at a standstill. Waiting on Insurance and clearances. We waited over a week to be cleared for scans confirming this cancer is back. We received that call yesterday. I have been in contact with Mayo Clinic in Minnesota. I’m desperately seeking their approval to leave and have a biopsy for further confirmation and testing. My choice to leave is based on the fact that this cancer resisted 33 proton radiation sessions. I do not want to stay in Syracuse and bank in the next standard protocol. While our team is knowledgeable and caring, we want all options available. I don’t know if/when we will get the go ahead to hop on a plane to Minnesota. Every minute we sit waiting by the phone is a minute this cancer has the chance to multiply. These systems in place are lacking and broken. Please treat my baby and file your paperwork later. Her life depends on it. So now I reach out for financial assistance. I am no longer able to work. Maybe if I have hundreds of thousands in my pocket they will approve clearances quicker. I don’t know. I am heartbroken and desperate. Please help us get to Mayo. Please help me understand why this is happening to the most beautiful soul to ever set foot on this earth. Please help. She is twelve. She deserves to have the rest of her life ahead of her.