Birth Date - February 10, 2004
Main Diagnosis - malignant peripheral nerve sheath tumor :mpnst, neurofibromatosis 1
Biography
Hi my name is Izabell M. Everyone calls me Bell. I'm eight years old and in the first grade. I have three older sisters who are very supportive along with my Mommy. They all love me very much.
I was born with neurofibromatosis 1. NF1 for short. My sister Emy and Mommy also have NF1. NF 1 is a disease that tumors grow on your nerves. When I was two my mommy noticed a small lump on the right side of my neck. She made me an appointment with the neurologist at Riley. I had a MRI and then the doc suggested we just keep on eye on it for now. I had yearlyMRI's. Nobody would do anything but watch it.
After mommy noticed the entire mass getting bigger she made another appt to go back to neurologist and requested to see a surgeon and expressed to the neurologist that we would be getting other opinions ... So after seeing numerous Drs, we found nobody wanted to remove it due to its location and the fact that its wrapped around everything important in that area. It continued growing ..so in December of 2011 my mommy said enough and requested a MRI ..after getting the MRI we were told by a neurologist at Riley that " yes its bigger but not scary bigger". When my Mommy asked why a certain part was hard and the other was soft, the doctor replied "lymph nodes". She had mentioned a drug study with NF patients that would start soon after, so Mommy decided that was the only option we had to shrink them.
Cancer wasn't an issue until Feb 2012 after we asked for a MRI. All the Drs except for one argued with my family that these are hardly ever cancer.. "less than .1% "they said. That's what four of the five were saying. Our family having history with NF1 associated with cancer had no impact on their decision making when given us a percentage of it being malignant . So it seemed like our only option was do nothing or enter a drug study, so my mommy decided to go with a drug study to shrink it. After the Dr at the head of the study saw the mri he said that it DID NOT look ok to him and there was clearly a suspicious area in the mass. After further testing and a biopsy ordered by the oncologist, the neurologist who had said a few weeks earlier say that everything looked ok, had to personally call and tell my mommy over the phone that she "had good news and bad news". She then said "Bad news is she has cancer and good news is its only stage 1-2... so we started seeing the oncologist who diagnosed me with a malignant peripheral nerve sheath tumor (mpnst) for short. He saved my life...as for the other doctor... well she will never see anyone in our family again.... My primary oncologist is is a fellow under the oncologist who diagnosed me. We are all happy with the care we get from their office and when were in for a stay at the hospital. Riley has been great.. Also our community has been so generous..along with the School..We thank you all for your prayers and kindness
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