And away we go...

Sam was readmitted to Children's Hospital's Bone & Marrow Transplant unit yesterday. Not much actually happened, so there was an awful lot of sitting around and wondering why we'd been told to show up at 2pm. (Alyson's answer: "So we could go home at 8pm instead of midnight?" Can't say she didn't have a point.)

Aside from the obvious, Sam is in very good health, and several people have said complimentary things about he looks. We are happy to hear those things. We were also excited to see that the feeding tube, which we'd been using to supplement Sam's breast milk diet, did its job. Sam clocked in at a robust 11 lbs, 3 oz, two pounds more than he was a month ago.

The pre-transplant protocol began today, otherwise known as Day -14. Sam had his PICC removed and had a double-lumen Broviac installed on the right side of his chest. This is how many of his medications will be administered. To our surprise, some of his chemo will be administered "subcu"--that is, as an injection. Talk about adding insult to injury!

Here's how the next two weeks of pre-transplant chemo will play out:

Day -14 thru Day -10: daily doses of Alemtuzumab
Day -9: Rest
Day -8 thru Day -4: daily doses of Fludarabine
Day -3: Melphalan
Day -2 and -1: Rest
Day 0 (Sept. 16): Bone marrow transplant

Sam's hair will probably start falling out around Day -10. The first couple of weeks after transplant (aka Day 1 thru Day 14) are likely to be the most uncomfortable for him, as all of the chemo side effects will be at their height. Those first few weeks will also be the most dangerous and anxiety producing. Sam will have no immune system--no defense against bacterial, fungal, or viral infections--and we won't know yet if engraftment has begun. On top of all that, he'll be uncomfortable and unhappy. This transplant will potentially cure Sam of his HLH, but we won't know for months if that's actually the case.

On the home front, Sam's absence means that we no longer have to spend so much time taking care of him ourselves--administering meds and washing syringes; flushing the PICC; sterilizing water and mixing formula for the supplementary feeds; administering the feeds and washing the hardware. We can sleep and eat without interruption, and our time here at home is otherwise all our own.

But it's quiet here and kind of lonely. We miss him.