We’re now eight days past the end of Robbie’s ten day induction. He weathered the chemo as well as one can and the doctors were rather impressed with how he’s fared. His strength of character and sheer will has helped him tremendously.
This past week has been waiting for his blood to show signs of recovery. Meantime, while we wait, he has been dealing with various side effects including a daily fever that has them somewhat concerned. He’s had two CT scans in the last few days as they try and rule out different possible causes. Today, one of the oncologists told me they may never know the cause but they’d like to make every effort.
His hair has begun falling out, so his head is a little thinner and the beard has become wispy. Right now he’s speculating as to what color or texture it may grow back as when this is all over. Friends have brought him knit caps and his Uncle Jim has already knit him two different hats. Laurie Rozakis brought him back a most colorful turban from India which he delightedly wore part of today.
Of some concern is his general lack of appetite. He spent all last week trying to rally so he could enjoy some buffalo wings with the Super Bowl. While he managed to eat some stuff, he wisely gave up on the wings for some fruit. This week, the appetite has made periodic appearances including Thursday when he wolfed down an entire sausage and pepper sandwich. Since then, he’s managed some food but the appetite vanishes unexpectedly so he tries. He did finally have one wing today, along with a slice of Rozakis cake, which thrilled one of the residents since he’s taking in more calories.
The week’s big thrill was Thursday at six when his nurse Jen came in and announced that epidemiology had cleared Robbie of disease and the infection control procedures could be suspended. Our two weeks of wearing gowns came to an end. Jen then disconnected Robbie from his IV stand and he donned a surgical mask and took a tour of 7 West, his current home. We showed him the four other rooms he had stayed in since he had no real sense of the floor. He was curious to see some of the rooms we mentioned but he had never seen such as the family lounges. I’m not sure who was happier to have Robbie out of the room, Robbie or the nurses who like seeing victories.
He continues to receive cards, gifts, and visits from friends and family. Much of the days go by though with long naps as a result of the medications he’s been taking to combat the side effects. When awake he’s far more alert so has managed some games, some sustained movie watching, and interaction with his parents and doctors.
While we’re far from being out of the woods, all in all, he’s had a fairly good week.
How are his parents holding up? Our new “normal” takes its toll now and then but we’re managing. We get work done; we learn from the doctors, we help him when he needs us. Our neighbors and my political colleagues in Fairfield have been overwhelmingly generous with offers of help and deliveries of meals. We find ourselves feeling unusually blessed with this amazing show of support.