As much as we had hoped for a trip home–and were planning for one tomorrow–it looks like we are staying right where we are. Caemon had his bone marrow biopsy and lumbar puncture (spinal tap) yesterday. He went through his procedure very well, and the doctors had planned to send us home today. His neutrophil count was on the rise, and while not at the usual number for going home, they felt confident that he would be fine and would benefit from the trip home.We started packing in anticipation of a speedy departure today so that we could enjoy our time at home.
Then, last night, Caemon spiked a fever. We are staying right where we are. Caemon was started on broad spectrum antibiotics again, blood cultures were drawn to try to detect any infections, and our trip home was put on hold (although we know very well that it has, at this point, been cancelled). In a moment like this, when we all needed that reset, it is hard not to feel that disappointment. The next step on our journey is another long one, so to have the opportunity to refresh ourselves and have some time together as a family was important. Caemon particularly needed it. He has been struggling with being in the hospital for so long and has started to melt down far more regularly, which is not a typical Caemon characteristic.
But despite all this disappointment, the fact is that we are where we should be. Because he is severely neutropenic, and because he does have a fever, we need to be somewhere where he can be treated, where he is safe. It may not be our ideal, but how fortunate are we to have the wisdom of modern medicine to help us through a time like this–a time which used to be far more life-threatening for leukemia patients.
As a family, we will find our reset button. Monday and BMT and a whole new outlook for Caemon are still on the horizon. We have that.