Blood counts

This picture is from Day Zero, on our way to radiation after Harriet's surgery. Samson is wearing a mask because he is loose in the germy unfiltered hospital air and Aaron is wearing the special necklace that the hospital gave Harriet for being a donor. She got me to help her put the beads on and then gave it to Aaron, because she and I already had necklaces and he didn't have one. That already seems like a long time ago. I keep looking at the calendar. Day 4. Shouldn't that be day 44? Or 24 at least. Time moves slowly here in my alternate universe.

I spent last night at home, where Harriet, in case you were wondering, is fine. We kept her on pain medicine for a day after her surgery, but she never mentioned any discomfort, and she happily went to preschool on Thursday. Her bandages were switched out for band aids, so her little hips are all gooey with left over adhesive, which breaks my heart every time she bends over. She is such an extraordinary little person who has no idea what she has given Samson, and me, and all of us. I have entirely downplayed the importance of what she did, because it is too heavy for a three year old, but one day (when she is a mother?) she will understand the enormity of the gift she gave our family.

I came back to the hospital this afternoon and relieved Aaron. It feels so strange to go from 24 hours of high-energy, three-people-yelling-at-me-simultaneously (Mama!!) home life to here, where I can go an hour without exchanging a word and I spend a lot of time trying to hold very very still, so as not to wake our angel. You are lucky I can't type this one-handed, or you would hear a lot more from me.

Of course, the good thing about being here is the smell of my sweet Samson, which at the moment is the smell of baby soap and pee. Mmmm. He is nestled right into my side on the bed, partially under my left arm, so I am typing carefully, without a lot of elbow. I gave him a bath this evening, which he very much did not enjoy. His skin seems sensitive, presumably from the chemo or radiation, and I have to tape a big plastic sheet over his chest tubes before the bath. I think putting it on is really irritating, and taking it off is worse. I believe his whole body hurts. The doctors and nurses tell me that the older transplant patients at this stage, with bottomed-out blood counts, just say they feel awful, worse than they have ever felt in their lives.

Every morning, when the daytime nurse comes on duty, she delivers a printout of the day's blood counts. These numbers come from the blood the nurse draws at 4 each morning. The printout has lots of stuff on it, but the biggies are the red blood cells, which carry oxygen around the body, platelets, which make the blood clot, and white blood cells, which fight infection. The chemotherapy and radiation, intended to get rid of bad cells and pave the way for the donor cells, wrecked all of these, leaving Samson with low energy and vulnerability to bleeding and infection. The counts are expected to be below normal, but if and when his red cells or platelets fall below a certain threshold, they actually transfuse him to get him back to low but not scary low levels. So far, Samson got one red cell transfusion, after his surgery, before chemo even started, and one platelet transfusion yesterday, when his count was 19,000 (normal is 150,000 to 450,000).

Red blood cells and platelets can both be transfused, but unfortunately neutrophils, important white blood cells that fight infection, can't be transfused effectively, and some infections just can't be beat without them. Samson always had very low neutrophil counts, which ultimately led to his MDS diagnosis. But now he truly has none and isn't going to for several more days, which is why we have to be incredibly careful about infections. To the extent Samson is having any visitors, and they are few, they have to be entirely sickness-free and wear masks when in the room.

On my first blood count sheet, the day after his central line surgery, Samson had a total white cell count of 6900 and a neutrophil count of 1104 (that is called the ANC -- the absolute neutrophil count). That is actually not that bad, but they say it was up from the trauma of surgery. The next day, after a first chemo dose, Samson was looking more like his normal self with an ANC of 184. Just for reference, a normal ANC is (I think) closer to 3000, and anything below 1000 must be carefully watched. Below 500, in real life, alarms people. Today, his total white cell count is 200 (normal is 4500 to 13,500) and the sheet doesn't even list neutrophils anymore.

Some of the things that are going on with Samson just can't improve until his counts are up, which starts 2 to 3 weeks after transplant, if it works. He has zero energy right now, and he seems to want only to get comfortable enough to sleep. He has had a hard time getting comfortable because of symptoms that seem to range from itching to pain to nausea. He does have sores in his digestive tract, almost certainly. It has become too painful for him to eat, and he had blood in his stool. As a result, he is now on IV nutrition, which eases his hunger but is hard on his liver. There is nothing that can be done for the sores (called mucositis) except for his natural defenses to resurrect themselves. Until then, we are using morphine and other drugs pretty constantly to calm and comfort him.

I have been meaning to say, so I should, that if you are one of the dear people who send me encouraging messages and emails and texts and voicemails, know that I get them on my phone even when I can't answer, and I am grateful for the encouragement and the diversion. I have been so touched by the people, many not in my everyday life, who have taken the time to reach out to me with the kindest words. Thank you.