we got to the hospital around 5. He seemed well. Mary and I were excited about some research we were doing. Eric left. the transition was smooth. no fights. Mary talked to the nurses and I stayed by Leif counting the seconds of each minute until she returned I had tried to distract him by showing him photos of his lego guns but he said "do I have to pay attention?" and I said "no" and he barely nodded relief, closing his eyes. I kept counting rhythmically. She got into bed to snuggle with him. His fever came back. Drugs, anxiety, shallow breathing. sleep. When he woke up he seemed more alert, the fever down, but he needed a diaper change. I said that when he came home I wanted to be able to help his mama with his changes and asked if I could stay and help. Usually he is quite adamant about everyone leaving the room except a parent and nurses but this time he said he could stay. I helped the nurse undo the diaper and saw all the thick blood. the nurse wiped him as I held his legs to the side. When I moved them further, more thick blood ran out and the nurse wiped it away. Holding is frail body and seeing that- it was seeing his death coming. But then after the change and some rest he rallied again and wanted to watch Wolverine. He has been watching that movie every day. At first Mary asked him if he was sure he wanted to watch but he assured her that he was. They watched as I sat by them listening. It was so clear why he watched that movie. It is all about death and dying, choosing to die, facing obstacles that made death a certainty- the possibility of resurrection. I don't even know anything about the movie but in the context of a dying child knowing he is dying it was deeply profound. I don't know if he could not have found a better story to mirror his own struggle with death. After wolverine another fevered sleep. and then the nurses came in and told us we were moving into the coveted corner room- the big room on the ward. We packed up the room and moved everything next door. As they were wheeling him out he woke and sat up and waved to the nurses station. once in the room he really suddenly came back to life. He was awake and excited. He wanted to bead necklaces so he and Mary sat on the bed threading beads. He then wanted to play garage band on his "drafting table" a new tray that was brought for him. We set up his ipad and he played guitar sounds as Mary arranged the room and I went through his clothes and rolled them all neatly and put them in drawers. It was so pleasant. Earlier, when the diarrhea happened I had asked Mary if she should call Eric. she thought we would be drinking and didn't want to bother him. But rolling his clothes as he played us guitar well past midnight, there was hope. We had been reading about ways to stop his diarrhea. Mary insisted i go home but I said I wanted to stay but she insisted so finally I left. I got home and Eric was quite inebriated. I sat on the couch and read scholarly abstracts about FMT's on immune compromised patients with cdiff (the study included 16% leukemia patients!) Mary and I texted for a while. I found doctors within the UCSF system who were experts in this. the reporting was a 93% success rate! Could this be the cure at least for his diarrhea. If they could get that under control wouldn't it give him a shot at having at least a less awful death? maybe getting to go home for a while? I fell asleep well after 3. A little past 8 there was a banging on the door. I jumped out of bed. It was the neighbor Tiara, she had gotten a call from Mary. she couldn't get ahold of me or Eric but we needed to come. we jumped in some clothes and I drove Eric to the hospital, paring in the circle we ran in and were told to go on up as we ran past security- one elevator was taking to long we ran to another. Perhaps Eric had 10 or 15 minutes before Leif died in Mary's arms. I crouched by the bed holding Leif's hand as Mary and Eric sang his favorite David bowie song to him.... if you go you wont be sorry cuz we believe in you...- a couple of kooks like us
Oh Anne.
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