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Good news / bad news (isn't that frequently the case with this disease?). Because our COE was a 6+ hour trip for us and he was feeling so bad we transitioned to another center closer to us (2+ hour drive). I honestly think this is where our path has been leading us the whole time! We met with the doc last week to get the results of his biopsy and were surprised that his blast count had not gone up in an entire year - even though his symptoms have become alarmingly worse. When talking with the doc she just kept staring at him saying, you don't look good - and given his fevers, shortness of breath and counts - was concerned about an infection. She kindly asked if he would consider getting admitted to the hospital to rule out an infection (even though we went thru those tests at his local oncologist). Given that infection is a leading killer with this disease he agreed. He spent 5 days in the hospital with all sorts of tests. He would spike a fever in late afternoon, at which time they would culture his blood and start him on IV antibiotics (I told the nurses he's like a colicky baby, afternoons are the worse for him!) This went on for 4 of the 5 days and then they agreed that his fever and fatigue are symptoms of his disease. Fast forward to today. He is on Day 3 of his first round of Vidaza with little side effects (right now), except for that pesky fever about 10 hours after treatment. We understand that a transplant is in the near future as he is considered high risk under the new scoring system. Alternatively his doc said he could be one of those exceedingly rare cases that Vidaza works perfectly and he remains transfusion independent for a couple of years. So starts the battle!
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