2000
| July 23, 2000
My son has been in the hospital since July 7th. It is now July 23rd. T-Cell leukemia is addressed by chemo therapy. Chemo addresses the cancer by an all-out assault at any tissue the reproduces quickly. This includes the blood-making cells in bone marrow, the hair follicles (ALL hair follicles), and all tissue near any orifice. Which means he now has a nasty set of what seem like cold sores or canker sores in his mouth that makes it hard to eat. And a rash that makes it hard to sit. Hard enough that he is on Tylenol and codeine for the pain. You can only take so many hours of seeing your child in pain. He has had blood transfusions and platelets. Each session in chemo (on Thursdays) results in a crash in the following days - by Saturday he is on transfusions. On his up days, he has good spirits. On his worse ones, he is angry and in pain. This week the cotton wool of shock wore off us both. This week he realized verbally that this could be fatal. I have refused to accept that. I want to play the odds. 80% beat this. How long? If you are clear for five years do you know? How many make it that far? Will he need bone marrow? Do you know that transplant disease follows that nasty little procedure? And how long does that give them? After first being cured, 40-50% relapse. How many of those survive? How long? There are no answers. Or disagreeing ones. What causes it? No one knows. He's strong. I bought hi-protein chocolate food supplements - a powder. I brought the Bamix and a mixing cup down. They are checking that out. He has lost weight. Because he cannot eat. He wanted to reduce. This is not a dieting option I would suggest. I can bring shakes and malts from MacDonalds or where ever. I can find Jamba juice. If they have one without strawberries or other items with seeds. I will bring some tomorrow. I need to get him boxer shorts - instead of briefs. And short-sleeved button front shirts because of the trailing IV. And more soap. Today I got floss. And deodorant. I run laundry 5 days a week. I carry towels and clothes back and forth. I am reading my novel, Jettison, to him. I would walk him to the bus stop when he rode a bus to grade school - the magnet school had PE and labs and reading assistance. I would stand there late for work and read stories to him until the bus came. I read his assignments and read out the questions when I home-schooled him in eighth grade after discovering that his junior high was too gang-infested to be acceptable. He made it through one year but he was injured early in the second and I said no more. So I took him home. And read to him. I read again when we had home schooling for half his freshman year. I am reading now. His nurse is jealous - says it has been years since his mother read to him. On Saturday we received a photo from Fabio - addressed to Johnathan and saying get well - from Fabio. Just as I had requested. He sent the one with the leather jacket and the Harley. Perfect choice for a boy. Also, my older son came on Saturday and we cleaned the bedroom. We threw out the chest bed. We moved furniture. I vacuumed. He shampooed the rug with cleaner and Clorox. I sprayed the walls and the window sill with Clorox and Lysol. Cancer patients have compromised immune systems. I will get a new box spring and headboard. The contractor is fixing the bedroom door. The cats have been forbidden entry. They miss him. They walk around yowling. The dog is confused. I have to shampoo the hall next. And Clorox the kitchen and bathroom floors. And doors. The plumber fixed the tub faucets. I need to install new bathroom sinks. Pedestals are not good for cleaning. If I am stuck in this house, I will need room. I no longer can move half the stuff to San Diego. We are putting another tenant in there. So now I must face the fact that 1600 sq ft does not hold 5 computers, two pianos and two adults very well. And the tubs are small. We are not. The contractor is looking at going up - putting a room over the garage. It would have a modern bathroom. With a jacuzzi bathtub. 40x60" - like the one in San Diego. And a counter next to the sink. We will argue over who gets the bathroom. Or we will learn to share. I will also get serious about a very big storage unit near the house - ours is small and too far away. He was to come home friday - but he spiked a fever. And Thursday he will be put through bone marrow testing and spinal and chemo. Mother will be there. Tomorrow I need to get magazines and bubble bath. Shut off stock purchase. Reduce the 401 deductions Sometime this week I have bills to pay. My bonus is due. I need to make plans. The contract with Banta. The mail from Ingram. Some one ordered three copies of the book. I need to mail the business license to Fremont. I need to inquire about a mail-order license. I need to stay very, very busy. And I need to not think. We are up to chapter 6. |
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