She was sent to Crouse for surgery on July 1st, where they did a Bronchoscopy to biopsy the mass on the superior vena cava. At that time they tried to remove the mass however the mass was intertwined with the vessels of the superior vena cava and surrounding areas. As they tried to remove the mass it just started ripping. They removed enough for a biopsy. It came back a very rare cancer, so they decided to do another biopsy on one of the masses in the lung on July 6th.
On July 9th it was confirmed Jillian had a rare cancer called Myofibroblastic cancer. At that time the Syracuse doctor had never heard of or had never seen this type of cancer. They highly recommended Dana Faber in Boston. Jill being hopeful with the doctors recommendation waited for an appointment. Later she found out on July 12, they did not accept her insurance. She was then refereed to Strong Memorial. Her first appointment with them was on July 27th. There Dr Mulford has also told her she had never seen this type of cancer before and she had already reached out to doctors from Rosewell and Dana Faber. They had never seen her type of cancer in an adult women or in the areas she has it. This type of cancer has only been seen in children under 14. Jill is the 16th case in the United States and the only adult. They were unsure how to treat her at that point. She had to have a new pet scan on August 1st which showed the lesions on her spleen have now progressed into a mass. At that point they wanted a biopsy of the spleen in hopes they would get a different diagnoses for a more treatable type of cancer. On August 9th she met with a surgeon from Rochester who recommended to remove the whole spleen as a biopsy of the spleen had more risks. She is scheduled to have the spleen removed on Sept 5th. She is on a cancellation list as this has been going on since May and is clearly metastasizing.
As you can imagine, many things have changed for Jill recently, things like sleeping in recliners nightly to maintain safe oxygen levels. Jill has been out of work since June 30-July 18th when she begged the doctors to return her to work. However with the continued progression of the swelling, breathing and swallowing issues she was taken out again on July 26th. Jill is patiently waiting for NY state disability, which is $170 a week. She has multiple hospital bills that are not covered, everyday bills and travel expenses going back and forth to Rochester multiple times a week. If you know Jill she would help anyone and has. She has such a big group of family and friends that she has touched in her life. I feel if we could all give a little it would add up to a lot. Jill would never ask for help but I as her friend would ask. If you can help in anyway, please do. No amount is too small. Also prayers are huge at this point!!!! Thank you!
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