Post by the other mark williams on Dec 14, 2018 0:10:42 GMT -6
OK, so I still need to write an update of my own, but for now, I'll post something my wife wrote for Søren's transplant Facebook group a couple days ago:
Day +195 I hesitate to complain because we have come so far, and we have so much to be thankful for. But in truth, we still have so far to go and I’m a bit weary.
Lately things have been difficult. Or maybe it’s the strain of the last year, the exhaustion, the worry, the sleeplessness, that is compiling. They say the transplant process is a marathon rather than a sprint. Or in our case, *two* marathons and the end is still not in sight.
Søren’s graft-vs-host disease is flaring up, which means he doesn't sleep because he’s in pain and uncomfortable. Mark and I try to sleep in shifts, but after two years of this, we’re depleted. We argue over who’s had more minutes of sleep, and we try not to tally who’s done more nighttime IV meds.
This week Søren’s central line partially stopped working (he has 3 lumens and we’re down to one that works). So that means a new line is possibly on the horizon and with only one line working, our nighttime IV medication routine takes much longer.
We’re all really struggling with the isolation, especially Søren. He is craving human interaction and stimulation and wants to play with other children so desperately.
One of my favorite writers says that sometimes what appears to be a catastrophe, over time, becomes a strong foundation from which to live a good life. I’m trying to put my focus on the foundation that this struggle is building. And that we still live a good life, even though it’s not an easy life.
Any words of encouragement or really just acknowledging how hard this process is would be very welcomed 🙂.