Dennis had his second follow-up appointment with his ENT surgeon at Johns Hopkins today.

Last month, they told us to not try anything by mouth until he had had his swallow study. Today, the surgeon asked what he was eating????? HELLO?? When I reminded him of what he had said earlier, he replied that Dennis had healed as much as possible, and go for it..........anything Dennis wants to try is fine.

Also, the ENT had said he would schedule a PET, but, today he said he wanted to wait another three months. (Apparently he didn't want to worry Dennis with a possible false-positve due to inflammation).

I'm not new to this........I understand the lingo. Why change courses after saying before that he would do these tests? Would you take it as a bad sign?

Good news?.........Dennis drank a Pepsi this afternoon!! The first thing he has had by mouth since Sept. 3.

At this point, I'm just thankful that he is here. Insurance has been a nightmare. I'm in the process of filing a formal complaint...not to benefit us, but, hopefully keep anyone else from suffering the same heartache.

Believe me....I now have more interest from providers in Dennis' care than I could ever have hoped for when he first came home!!!!!!! I hope to have a chance to fill you all in soon.

He was treated horribly, and, if I hadn't been here for him, he would have been a nursing home patient. For someone who is only 54, trying to deal with losing his voice, the pec flap, the packing of the open fistula, the open dissection, the open abdominal wound, and a stroke? He would have been a forgotten person.

Love,
Mandi


Stage III tonsil, Dx 8/14/2002,chemo and rad...reoccurance 8/3/07,Base of Tongue,vocal cords,stage IVA,total larynectomy and glossectomy 9/4/07 with pec flap...reoccurance Nov. '08 and Feb. '09 (positive margins remained after each operation) Second pec flap May 7, 2009. Still positive margins.