Finding Normal

While we haven't fully settled into a rhythm again after the hospital, we're on our way. Henry is handling his fluid restriction in stride, the limiting of his juice being the only effective solution for the additional water weight he's carrying right now. Yesterday he was down a couple of pounds and we're hopeful that the morning weigh-in will reveal the same. He's limited to just two cups of juice a day, hoping that his body will look to the additional water in his cells as a source instead.

The chemotherapy he took at the beginning of his relapse treatment, Temodar, is scheduled for it's second round, but after getting his blood checked today, the doctors have suggested waiting a week to see if his platelets will begin coming up on their own as they're a bit low.

Today's visit was routine, an early trip into Baltimore, visiting in the playroom with old friends and new, and playing with favorite toys. The Big Event for Henry now that his chest catheter has been removed, is the blood draw. They have to stick his pudgy, water-filled arm and dig for a vein. Even the skilled nurses look to the experts in this case, and a hand tap was chosen this time. While painful to him (crying actually pumps the blood out faster!) it was skillfully and mercifully on target the first stick. Thank goodness for the experts!

After our visit, Henry and I took his accompanying Grandparents to visit St. Casimir, our second home during radiation and post-transplant. His memory is incredible. We recalled the water taxi, the outdoor courtyard, the roof of the building, the elevator, the shops - it was a very pleasant experience in the end.

This reminiscing brought to mind a recent conversation with our primary oncologist when first discussing Henry's relapse. "I guess this is the part of your job that makes you wonder why you went into this field," I asked after discussing our palliative care options and how things may evolve in Henry's coming weeks. His reply was clearly one he'd considered heavily before. "Really, its the people in this situation that we find we're able to help the most." And it's the truth. Good doctors, good nurses and a good hospital and staff have made all the difference in our journey to date. The fact that Henry can look back on months of treatment and want to go back, reflects the miracle of their care.