Monday, July 8th we took Sebastian to the hospital to run the last MRI he would have. They had told us nothing could be done anymore and that he was going to die any minute. We needed to check the status of his tumor, though, to know if it was still there or if it had disappeared. We were very worried because we did not see any signs that showed he would die. I did notice Sebastian was sleeping a lot and his activity level had diminished, but I don´t know when someone is going to die. How does one know when someone is going to die? It´s impossible. It´s uncertain and no one can tell you either when someone is going to die...what day? What time?
Deep inside I had a gut feeling that things were going from bad to worse, but you can never lose your faith. I was expecting for them to tell me two weeks more or a month. But that was something we had been told before. If he was going to die, when? Any information would help when one doesn´t know anything. When we arrived at the hospital Sebastian got really sick and started to tremble with high fever. That night we stayed at the hospital since he did not have any good blood; no platelets. He was alive at this point only by a miracle. It turned out that Sebastian had been taking a home chemo which the doctor told me to stop giving it to him when the box finished. In the anguish trying to save his life, I forgot those directions. I read on the chemo box we had that I could order another one when it was gone. I thought that by giving him this chemo I would save him. Since they sent us home to wait for Sebastian´s death and we never went back to the hospital, when the box was finished I called the hospital and ordered another box. After 10 days of giving him the chemo, Sebastian had no good blood left. The first night at the hospital they gave him red corpuscles and platelets to improve his condition. Daddy assembled Sebastian’s Ferrari Lego; Henry did not sleep at all until he finished the entire Ferrari Lego. Dr. Renata came to visit us that night. The next day they supplied Sebastian with more blood and he started to feel much better. Some friends dropped by to visit. Ms. Shelly, his Kindergarten teacher, was by his side for 2 days; she read him books and played with him. I believe that´s a way of saying good bye.
Sebastian and Dr. Eugenia used to have their own Batman versus Spiderman spray battles, but Sebastian would always have a prank for her too. This time he wanted to spray her without her knowing it, so he teamed up with Carolyne (a nurse assistant to Dr. Eugenia) who immediately supported him. Between the two of them set a trap for Dr. Eugenia. Sebastian told Carolyne, "When Dr. Eugenia enters the room she will sit by my side. When I say, ‘Carolyne what´s written on the board,’ you tell Dr. Eugenia what´s written on it. Then she will go and read what´s on it, and that is when I will throw her the spray!" It happened just that way, too. I had no idea Sebastian had this planned together with Alison. When Dr. Sande entered the tiny 5 x 5 hospital room filled with people, there was only one chair. One could stand up from the bed and touch the sink, so everyone was standing when she came in. When you entered the room you could immediately feel the stress of the environment, the tension in the air. An unsuspecting Dr. Eugenia sat on the chair and started talking and chatting here and there with some laughs.
When we arrived home we sat down and painted a small pot and planted a plant in it. That was his last activity outside the house. After that, he went to bed to rest. The next days he rested and almost did not talk. The last two days he would do little else other than sleep. He did at times complain a bit about headaches. At this point we were giving him morphine twice daily or when he would complain; if he did not complain we would not supply it. Rarely he would open his eyes to say something, but he would only talk briefly at this point. He wasn’t really talking or eating much. We would try giving him ice electric solution, Pedialite ice-cream, or watermelon to hydrate him.
After that, we dressed him up and set him on the bed again. He woke up and ate watermelon, drank some water, and went back to sleep. I remember I told him, "Do you want me to shower you?" and after 4 days in which we had not spoken to each other he answered me, "Just a minute Momi" Those were his last words. He slept all day long and continued to make lots of noise. The hospice nurse told us that his death process had started, so everyone arrived at our home and said good bye to Sebastian. We played all types of music, all the songs he liked. I called his uncle Segundo so that he could say good bye over the telephone and he said, "Ciao Sebastian, I love you very much."
Daddy was always at home so that every time you opened your eyes I could call him up so he´d come see you.