Day 744/116


Benji continued his pattern of ebbs and flows today. He took many baths, used his hot water bottle, napped and rested. He had one dose of morphine for pain and one dose of Kytril for nausea. He also refereed a driveway basketball game, went to a downtown art festival, and enjoyed lots of time with family. He ate only one small piece of banana bread all day, but he didn’t vomit at all. He is finding the balance.

Benjamin is so adept at listening to his body. This morning he asked me if I thought we should go to the hospital. He was so uncomfortable; his spleen was bothering him every which way he positioned himself. I told him I would get in the car right that minute if he felt the need to be there, or if I felt it would be a more comfortable environment for him. But the only real difference would be intravenous hydration and pain medicine. He is drinking plenty here. He knows when to ask for pain medicine and when to refuse it. He knows when to rest and when to take advantage of feeling stronger. He is very good at negotiating his pill schedule when he’s afraid the swallowing will betray him. And he’s home, which can’t be replaced. He asked for morphine and was grateful to stay where he was.

Sarah has a booth of gorgeous hand blown glass at the Sarasota Winter Fine Art Festival. Benjamin didn’t feel up to going for most of the morning. But half an hour or so after his dose of morphine, he said he wanted to go, so we took the chance. Kathy and Gana were there when we arrived, and Lotus was helping his mama work. It was nice to be out in the sunshine with our family on a gorgeous day. When Benji felt the need to lie down, he was resourceful, and crawled up under Aunt Sarah’s display with a makeshift pillow. When he needed to leave, we did. On the way back to the truck he was in a lot of pain. He said he could feel his spleen getting larger. But he made it, and the relief when he sat in the front seat was audible. He was in tears by the time we pulled into the driveway. We napped for an hour or so when we got home. He has been relatively comfortable since.

I am a little nervous about Benjamin’s platelet situation going into Tuesday’s lumbar puncture. He has a lot of new patches of petichiae today. I wouldn’t be surprised if the count is starting to decline. When I proposed the idea of a lumbar puncture with Benjamin’s last bone marrow aspirate, Dr. Oshrine didn’t feel it was worth the risk. Then, Benji was getting transfused every other day or so. If we arrive Tuesday and his counts are way down, I wonder if a transfusion will be enough to satisfy Dr. Oshrine’s parameters. I know that lumbar punctures are necessary moving into this trial at NIH. They have to ascertain the condition of the cerebral spinal fluid. And it would be great for my peace of mind. We’ll have to wait and see what Tuesday brings.

With the news that the NIH trial had come into more clear focus for us came several offers from family and friends, trying to connect us with people they know from the facility: doctors, directors, other mothers I could relate to. We received gifts in the mail today and offers of food for tomorrow. Love and prayers are constantly flowing in to this house, forming an ever stronger foundation. We are so grateful.

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