Maybe a blip

I got our blood counts this morning and the white blood cells are 0.5, or 500. That is up (up!) from 0.2 yesterday and the day before. Now before you and I get too excited, I can look at my chart and tell you that we did have an up blip once before: on day 6, a 0.4 WBC -- sandwiched between a 0.2 the day before and a grim 0.1 the day after. So obviously we need to put down the champagne and see if the 0.5 holds tomorrow. Or goes up. Oh good lord, don't make me jinx myself.

With increased counts should come improved health, and while I have not stopped counting my blessings about how many bullets we've dodged, I am surely ready for some improvement.

On Saturday night, as I was finishing writing my last entry, Samson's nose started to bleed, but I wasn't too worried and assumed we would get it stopped shortly. Hours later, he was still bleeding. The more the nurses and I tried to stop it, the more Samson was frantically rubbing his face to try to get the blood off, which of course made it worse. It was stuffing up his nose and running into his mouth, choking him. I felt miserably helpless. When we finally realized it wasn't going to stop, we checked his platelets, which had dropped into the range requiring transfusion. After a 4 a.m. dose of platelets, the bleeding slowed and stopped. The bed looked like a crime scene and I think Samson swallowed a gallon of blood. Which he later threw up.

Sunday was mostly uneventful, which was lucky because I snuck out for a few hours and left Samson with Kandis while I took a nap at home (to recover from the nose bleed) and then took the big kids to the Cinco de Mayo festival on the waterfront (rides!). The kids were pretty happy to have Aaron and I together.

Today we did an IVIG (IV immune globulin) infusion, which we are doing every two weeks to help Samson fend off potential illnesses. That unfortunately caused a big old allergic reaction that made his face swell up like a balloon. That has never happened before but supposedly it is not too uncommon. He is looking a little better now, but still really swollen around the eyes.

It also seemed to make him feel bad, maybe itchy. And he threw up everywhere, which was a little bit of a mystery because his stomach has been empty, aside from blood, for days.

The Saturday night nose bleed was a lesson for me on the reality of this blood stuff. They aren't kidding; you really do need all these things we write on the chart.

Which is why it doesn't make sense to have visitors up here. If Samson got sick from an avoidable exposure, I would never forgive myself. I feel so loved to have friends who would come up here to see me or bring me things. But every person I bring in here carries a risk of illness, for which I am responsible, and unlike the platelet fix for the bleeding, there would be no fix for sickness.

When we came in to the hospital we were placed on special isolation precautions, which are restrictive even on the cancer floor, even for bone marrow transplant patients. I joked on our first day that it was not reassuring to be, apparently, considered the most at-risk kid on the 10th floor. I was sort of fishing for the doctors to say, oh no, he's not really more at risk. But they didn't.

Samson's precaution orders require that only essential medical personnel are allowed in the room, and they all must wear masks, gowns, and gloves. Samson is not allowed to leave his room, which is specially filtered and ventilated with fresh air. The room is pressurized so that air flows only out to and not in from the germy hallway; there's a gadget on the wall by the door that shows when the pressure is breached, and the door is not supposed to be left open. Not that the hallway is even supposed to be germy -- this is the oncology floor; everyone is immune deficient. All visitors to the floor must verify that they are not sick and have not recently been exposed to a sick person. Child visitors to the floor must have their temperature taken. No child visitors at all are allowed in Samson's room, including his siblings, which has been one of the hardest things about this hospitalization. Because Samson can't leave the room, I can't either. I do have a nurse stay with him occasionally so I can run get myself a cup of coffee, but that's it.

This is a prison I am ready to kiss goodbye. I hope that these blood counts, our ticket out, are going in the right direction soon if not tomorrow. Maybe today was a blip, but maybe not!