Finally, after five long months, there is a diagnosis for Ed. As hard as it is to believe, it is Hodgkins Lymphoma. We are in shock because we put that diagnosis behind us and were focusing more on the auto immune disease, sarcoidosis. Even after the biopsy the surgeon, Dr. Underhill, was still leaning toward sarcoidosis and never even hinted at cancer. One evening the oncologist, Dr. Siegel, came in and said 'well, I guess…
Ed is not coming home today (Wednesday) and he’s not a happy guy. His blood level is still too low and they won’t discharge him until it’s at a safe level. Dr. Siegel, the oncologist, saw him yesterday and said he didn’t think he would need to see him again so it’s probably safe to say there isn’t any type of cancer going on and for that we are truly grateful.
Dr. Underhill said Ed did a good job and the surgery went well. The lymph nodes were firm and it was hard for him to get a piece for the biopsy because they kept moving. He had to use two instruments – one to hold the lymph node and the other to take the piece. They were also, as he said, 'bloody.' It's nothing that he hasn't seen before. The results should be in…
Kim sent this a few days ago and with everything that has been going on with Ed, Max and Linda I wanted to wait until things settled a little. Some of you may not be able to view it but there will be other pictures and descriptions to follow in the coming weeks. Thanks Tim & Kim. As many of you know, Tim enjoys playing around and making movies. Here is something he put together…
First an update on Ed He continues to feel okay and we are wondering if maybe we’ve experienced the last of the episodes since we’ve passed the usual number of days between them. They will probably want to do the biopsy anyway because, as the oncologist said, the lymph nodes never did return to normal. No word on the date for the stress test but since Ed can’t run on a treadmill, because of his…
UPDATE ON ED The consultation with Dr. Underhill was relaxed, informative and funny! He is the surgeon that will do the biopsy on the lymph nodes – the mediastinoscopy. We spent an hour and a half listening to him telling us all about the body and comparing it to PacMan in how it operates in certain instances. He made everything so easy to understand and even loaded the CT scans we took and sat for…
Tim sent this picture of the storm they watched rolling in. They had just visited a technology museum and were eating at an outdoor restaurant. I asked if they made it to their car or hotel before the skies opened up. Kim is the only other person I could find in the picture. Ed is fever free but is still experiencing the fatigue. This is unusual since that only happened while he was fighting…
For the last few days Ed has been feeling okay. This is the normal flow of these episodes. Dr. Siegel called this morning and wants to do a mediastinoscopy when Ed starts experiencing the onset of the fever again. He has recommended Dr. Underhill – a cardiothoracic surgeon. After reviewing all of the reports, records and scans he has rejected the idea of this being viral and said it's an unusual case (yep, that's…
Today is the beginning of their second week of vacation in Germany and they are having a great time and the weather is perfect. Octoberfest officially started yesterday so I’m sure they will be joining in all the festivities. They have stayed in some beautiful hotels and here are just a few of them.
We met Dr Siegel this morning and after a few brief moments we felt very comfortable with him. As he listened to details of what’s happened in the last 3 1/2 months he sensed our concern that no one has been able to figure out what is going on and said between he and Dr. Zweig – they will get to it. He feels it is not lymphoma based on the activity of the lymph…