Day 9

We've made it through Week 1 of a long (8 weeks?) treatment protocol for the HLH. Sam has undergone more medical procedures in the last week (including lumbar punctures [aka spinal taps], x-rays, CT scans, echocardiograms, ultrasounds, and more) than Alyson and I have had in our entire lives. He receives steroids and chemo to stop the HLH and break down his immune system, as well as a slew of other medications intended to stave off infection, fever, and/or high blood pressure; help drain fluids from his lungs; help him pee; keep him sedated and comfortable; etc.

The HLH appears to be in Sam's lungs, which has made it difficult for him to breathe easily on his own. He now breathes through a small tube in his mouth. He is sedated, and that, in turn, means that we can no longer make meaningful eye contact with him, feed him ourselves, or hear any of his many vocalizations. For the most part, then, we can now only watch and hope that Sam continues to be stable, responds to the treatments, and continues to tread lightly through what feels like a minefield of possible side effects.

The HLH is also in his spinal fluid. The implications of that are unclear to me, but at least it's being treated.

There are some other good signs. His blood levels (e.g., platelets) and some of the other markers of HLH have improved since the treatments began. His heart and kidneys are in good shape, his liver and spleen aren't so enlarged anymore (a by-product of the HLH), and most of his other vital signs are normal for someone of his age and size. We are hopeful that his lungs will start to clear up.

Every day seems to be its own roller coaster--a bit up, a bit down--but we have no real sense of what the end will ultimately look like or if we're making any meaningful progress toward a good outcome. So we ride. What choice do we have? The best we can hope for, I guess, is that we get to ride again tomorrow. And that one day in the not-so-distant future, we'll get to take our little boy home, dress him in pajamas with little bunnies on the feet, and Alyson can sing to him to sleep.

Alyson has begun reading to him here in the ICU. I love that she does it. I like to think that he finds the sound of her voice soothing, and maybe even healing. Either way, it's probably good for her to spend time here doing something meaningful (and distracting).

We have stopped spending the night at the hospital. Although it's hard to leave him, the ICU staff takes good care of him. And since we can't feed or hold or him anymore, there are no longer any compelling reasons for us to stay. At least now we can be assured of getting a decent night's sleep--impossible here at the hospital.

We are enormously grateful for your notes, gifts, prayers, visits, offers to help, and efforts on our behalf. They are a huge boost to our spirits, and we thank you. I'm sorry that most don't receive a response (I'm overwhelmed), but please know that we read everything, sometimes repeatedly.

We are happy to receive visits here in Pediatric ICU, but can't guarantee much of anything: who will be here, what kind of hosts we'll be, whether you'll be allowed in the room, etc. (Official PICU policy is two people in the room. We've almost never been held to that, but one never knows if/when the hammer will fall.)

If you want to visit, please err on the side of caution if you've recently been or think you might be sick. (Sam is in reverse isolation, so you'll have to put on a robe and mask.)

As far as gifts go, we're happy to receive them as long as they don't include flowers or fresh fruit, both of which are apparently potentially dangerous to Sam.

I have no idea what all this means for us financially--I haven't yet had the energy to pay attention to anything but making it to tomorrow. Nobody ever indicates which of the myriad procedures, meds, facilities, tests, staff, and services are covered by our insurance, or to what extent they're covered. I'm not sure it would matter--Sam's fragile little life is on the line, and nothing they've done has seemed optional.

There are rumors that somebody at work is doing something (or wants to be) about a fundraiser event/site, etc., but I don't know any details. If that comes to pass, I will keep you posted. (I cannot imagine either of us asking for help, but we know that we cannot turn it away if it's offered.)

Several of you have mentioned donating bone marrow. Thank you--to say we're touched is an understatement. I know almost nothing about bone marrow transplants, but two things have been made clear to me. First, one's blood type has nothing to do with whether one's bone marrow would match Samuel's. Second, the hospital will be responsible for finding a donor, not us.  That doesn't mean you shouldn't donate. The hospital would search for a match, so it only helps to have a bigger pool from which to draw even if your marrow goes to somebody else.