Spencer's Battle Ends

Spencer was in bone marrow transplant for about a month. He was given high dose chemotherapy and his bone marrow infused, but he struggled. He consistently had a fever and now, after reviewing his autopsy report, it appears he developed pneumonia. Several days before he died he got petechiae all over his body, these are small red dots similar to measles or chicken pox. The doctors told us that they were basically another iteration of the disease and that Spencer would not be cured, the best thing we could do for him now was to make him comfortable.

Spencer was taken to intensive care, where his broviac was removed and then we returned to 7 east. Back to the isolation room we were in when we were first admitted, back when they thought he had chicken pox. Whether or not he had pneumonia in the BMT unit, or if he just developed it in the last days of his life is unclear. It was probably a combination of the two. He probably developed it in BMT and it eventually developed to a critical stage. Most people don't die of their disease, they use all their bodies defenses to fight their disease and then die of something secondarily. Like pneumonia. Dying of pneumonia is similar to drowning slowly. Your lungs fill with fluid and or mucus and it becomes more and more difficult to breathe. It is a very uncomfortable way to die so the best thing to do is to sedate the person heavily to reduce the agitation and anxiety of not being able to breathe.

It took two days for Spencer to die. He had a fever and he was being sedated through an IV. I remember him lying on his stomach, his breathing labored. We would talk to people on the phone but no visitors. I imagine Grandma was taking care of Jessica. She might have come by to visit us, but not in the room. I remember on the afternoon of the second day, I just couldn't stand it any more, I had to go out and walk. I may even have bought cigarettes, I was gone for hours. When I came back, Sandra told me that there were all concerned about me. Afraid I might hurt myself, I said no, I just needed to get away.

Spencer died at 8:50 pm on the 27th of May, 1992. One month shy of his third birthday. I remember Sandra was on the phone with Karen when he stopped breathing. She got off the phone immediately and I remember the feeling of panic I had. Something needed to be done, but there was nothing to do. There were no monitors or alarms. It was very quiet, just his labored breathing, and then it stopped. We pushed the nurse call button and the nurse and doctor came in but like I said, there was nothing to do. He made a last gasp, which I think is when the heart stops and that was it. I felt like my heart stopped, or I wanted it to. It definitely broke and hasn't been the same since.

The nurses and doctors were very sensitive, caring, gentle and loving. I think Connie was the nurse that night and the resident was a female doctor that we hadn't seen before, but she was very good. Soft spoken, patient, accommodating. I think the pastor came by, not for last rites, but just to pay respects. They told us we could hold him if we wanted. I remember us being astonished by that but also very grateful. So we did, we took turns, sitting in the chair, holding him, crying. It seems like we did that for hours. Eventually his body heat faded and he started turning purple on his backside, a result or his blood pooling and not circulating. It was time to let him go, so we did. We left the hospital, numb, feeling lost and alone.