Saturday night

Saturday night on the pediatric oncology ward. Not as fun as you might think. But I did get a nice visit from my crazy children and my near-crazy (in a different way) husband, bearing food, which went a long way toward cheering me up before bed.

My food delivery crew:



Samson has had a hard few days; one thing after another has added extra hurt to his little body. But as always, he just keeps on going and as I write this, he is snuggled up in his blogging spot, under my left arm, snoring softly.

His sleep is drug-aided. We finally had to switch him over to a continuous morphine drip to keep him reasonably comfortable. It has been hard for me to accept the extent of Samson's discomfort; I think I may have resisted increased pain medication for him because I was resisting the notion that he needed more pain medication, that is, that he was in such pain. His nurses have gently urged me to note how much the morphine helps him, and all seemed relieved today when I said, ok, how about we move to the continuous morphine.

Everyone thinks that mucositis, the sloughing off of the mucus lining of his digestive tract, is causing him a lot of pain. He hasn't eaten in days, but he continues to spit up mucus and occasionally blood that is coming from somewhere. They say this can cause a good deal of stomach pain, which is also consistent with his body language; he moves like his stomach hurts.

Other things -- the occasional bloody nose, some low-grade fevers, itchy and irritating dressings on his IV, and painful IV dressing changes -- pile up to create uncomfortable days. Also, Samson seems to have developed a little infection at the incision site on his neck where his central line was inserted. It is red and has formed a lump under the surface of his skin. We added another antibiotic tonight to cover that, but of course now that antibiotic has made him red and itchy. This, on top of his final dose of the chemo drug methotrexate that he got today, will no doubt make this night worse than the last few.

Samson's IV pole has grown crowded. He will graduate to a double IV pole tonight; someone is being discharged, so we are going to score his.

Some of the things that are happening to Samson are just cosmetic, but they break my heart too. His skin isn't the same; it's splotchy and in places (his hands, his diaper area) he looks like he's been in a tanning bed. I want that perfect baby skin back. Also, he is losing his hair. When I picked him up off the pillow on Thursday, it was covered with a million soft baby hairs. When I stroked his head I got a handful more. Our nurse that day, Carmen, one of my favorites, was quick to point out he doesn't have a lot to lose, bald babies are cute, and so on. But still.

And no, our white counts haven't gone up. Not a neutrophil in sight.

I could probably go on and on listing our troubles, but that is all I can remember now and Mr. Itchy-Nosebleed is kicking my left elbow pretty steady now. I will tell you that we have had some fun too. The kids came up on Friday with Kandis, who snuggled with her buddy Samson while the big three and I did some arts and crafts in the playroom down the hall. A non-profit called CHAP, which stands for the Children's Healing Art Project, sets up art projects for kids (and families) on this ward twice a week. Josephine and Harriet made lovely necklaces while Cash lolled on the floor playing cars with a bald four-year old boy hooked up to an IV pole. Which, of course, seemed totally normal to Cash. Also, friends have sent me fruit, made me dinner, read my rants, prayed for neutrophils and told me they love me. So, jeez, it's not all bad. Thanks.