My sister Amy was diagnosed with a malignant Thymoma in August 2002. She and her husband in Cincinnati, OH had just purchased their dream home in July and Amy was just too tired and sick to unpack. She had hives covering her body, but the family physician said there was nothing wrong with her–it was all in the mind!–and that it would clear up once the stress of the move was done. Only problem is, it didn’t.
Amy finally received a referral to see an allergist, and he recommended a chest xray. A spot showed up on her lung. She went in for a biopsy, where the deoctors discovered that it was not a spot on her lung but actually a tumour the size of a grapefruit wrapped around her heart. They soon made a diagnosis of thymoma, stage 4.
So now we are in August. At this time Amy had trouble keeping her left eye open, and after several doctor visits was dignosed with MG. Chemo started in September 2002. She had four drugs, every three weeks, about eight rounds, I believe. The tumour did shrink a bit, but not enough for surgery–the doctors considered it too risky.
So Amy finished chemo and was about to start radiation when she suddenly fell really ill. She had experienced numerous episodes of internal shaking–like her organs were going into seizures–and these were starting to manifest themselves externally as well. At the same time she became very forgetful and talked of hearing voices. She went to Tennessee to see her daughter perform in a parade (she has two children, 9 and 5)and when she returned she had no idea where she was. She completely lost all memory. I have lived in New Zealand for the last two years, but in her mind I still lived in Ohio (it’s been 8 years since I have lived there…) She was having lots of seizures, had no idea where she was or when she was–no one knew what was wrong. She was in the hospital for quite some time in Cincinnati and had numerous tests, but nothing was confirmed–they thought it could be Isaac’s Syndrome or Morvan’s Syndrome.
Now, Amy had undergone a consultation with Dr. Loehrer just a month before all of this happened. He said that he really so no point in surgery–the cancer had invaded one of her lungs pretty significantly–and had now spread into her heart. The only way to get rid of it was to remove the lung and undergo a heart transplant.
So Amy is in the hospital–it’s mid-April 2003, she is out of her mind. As the doctors in Cincinnati did not know what to do, they contacted Loehrer and he became actively involved in her treatment.
Finally Amy was discharged to go home (got to love that insurance in the US!)and she just got worse. Mentally she was reverting to the mindset of a child–unable to read, write, do math. Could barely speak, was incontinent. Finally, Dr. Loehrer asked that she be brought to his center in Indianapolis. She’s been there for about three weeks now, and after some experimental treatment she is showing improvement. At least she can go to the bathroom on her own, and walk a bit. She sort of recognises you when you talk to her, but she has no short term memory left.
I learned today that Dr. Loehrer is going ahead with the surgery on Tuesday, 17 June. He is removing the lung and as much of the tumour as he can. He must feel that there is no other option at this point.
Amy’s prognosis is not good; I know she will not be with us for very long. For this reason I am writing this, because she is my sister and I love her dearly. For anyone out there who has a family member or friend with this illness, my heart goes out to you–I know the sense of loss and helplessness that you feel. It is very frustrating to not find that much information anywhere on the internet about this, and very few support groups.
I a flying to the US in early July to see my sister–hopefully she will survive the surgery long enough for me to tell her I love her. Please keep us all in your thoughts.
Amy’s surgery initially seemed to be successful; the doctors removed the right lung, the primary tumour, and a cancerous sac surrounding her heart. She was on a ventilator for the past week, and last Thursday, within the space of 24 hours she suffered heart failure twice. The second time she was without oxygen for 20 minutes, and they were concerned of brain damage.
Since the last heart failure Amy was completely non-responsive and just stared at the ceiling, for about four days or so. She passed away at about 4:30 am EDT in Indianapolis