Now that we have had a day of rest, we wanted to pause and again thank everyone in our incredible support system. Your emails, texts, calls and gifts of congratulations have lifted our spirits more than you will ever know.
Although the bell tolled, it dawned on us that the battle is just half over. Now we have to nurse Ernie back to health. As predicted, he had his worst days to-date yesterday and today. His throat and mouth are extremely sore, his voice is more hoarse and he generally feels like s*!t. Even though the treatments stopped, the effects do not stop immediately.
By popular demand, I will continue to post weekly (or so) updates on his progress. For this week we, with the advice of our crack medical team, have set ourselves some very basic goals:
1. Maintain Ernie's weight at 155 pounds. The feeding tube can not come out if he loses weight.
2. Eat at least 300 calories of solid food by mouth per day. This is the equivalent of 3-3.25 ounce snack cups of pudding. This is critical to maintaining his ability to swallow over the long-term.
3. Exercise daily to build up his strength. This means walking 2 miles or strength training with rubber bands. In addition, he must keep up his swallowing exercises.
4. Maintain a regular schedule of 3 "meals" per day so that Ernie will learn to be hungry again.
When we had our two week break between the end of the intensive chemo and the start of radiation, Ernie bounced back quickly. We are hoping that,once again, two weeks will lead to marked improvement in his symptoms so that the move home will not be too exhausting for him.
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