"It's really hard but we aren't supposed to talk to him, we can only touch his hands. As little stimulation as possible. We had a bit of an episode this evening where he woke up a little (he is still disoriented so it's not a true wake up as you would think). He fights the restraints, he fights us - he is clearly scared and confused. We were able to calm him so he relaxed while the sedative kicked back in. Another "freak out" as I have called it. He was plateauing on his sedative so some adjustments had to be made."
4
The days seemed like they lasted forever in that tiny room. I would watch Axel breathe, I would watch his eyes move under his eyelids. I even remember talking to him once telling him that when this was all over we were going to see Mickey mouse. I asked him if he would like that and he nodded his head yes. Just knowing that he knew I was there, whether he would remember it or not was comforting to me. There were many times we were told not to talk to him because it may agitate him and he needed to stay calm. Fuck that. I was going to talk to my boy. I was going to let him know that I was there. I talked to him every day, held his hand and told him every night "You're my favorite cowboy". That's something we share with each other. He's my favorite cowboy and I'm his favorite cowgirl. Every night before bed. I certainly wasn't going to stop because they didn't want him agitated.
I remember the day he got really bad. Tests came back and we were brought into that little room to have "the talk". Doc B was gentle and kind with his words and he didn't give us any bullshit. Don't get me wrong, we hated hearing what he had to say but as Axel's Oncologist he had to say it....Axel was bad. He was really, really bad and may not make it through the night let alone the next couple days. There were some medical terms, some statistics, and some advice but all we heard was that Axel was going to die. OUR little boy so full of life only a month and a half ago was going to die. He wasn't getting any better, he was getting worse. I'm not sure I could even see straight at that point. I suddenly got extremely numb.
I don't know how we collected ourselves but we did because we knew that we had to make phone calls and they weren't going to be good ones. I had the dubious task of calling Axel's mother again and Bill called his father. The reactions were pretty much expected from them both. There were a lot of tears, questions and anger. What do you say at that point? Our hearts were breaking into a million pieces with each and every second of each and every day because we have raised this child for the past 8 years. Yes he was their biological child and I do not doubt that they loved him very much but how do you console people who only came to see Axel when it was convenient for them? We did the best we could, assuring both of them that we would call them back right away if anything changed with Axel. His father made plans to come to the hospital that night to see Axel, his mother being a few states away did not.
We went back into Axel's room, I took his little hand in mine and started praying with all my heart and soul. "Lord, I know that I am not the best person and I know that I have made many, many mistakes in my life. I don't pray to you or talk to you as much as I should and I don't go to church unless I feel like it. I don't ask forgiveness for that, I only ask for understanding. Right now though, I am asking that you please heal our little boy. He is such a strong and vibrant little boy and so very smart. Please Lord, please put your healing hands on Axel and help him beat this. Help his body get strong so he can go back upstairs and start fighting the leukemia. Lord, please save our boy. Please."
I lifted my head to look at Axel and close my prayer with a final Amen and I saw a small tear run down the side of his face. It would seem as though God wasn't the only one listening to my prayer that night. Axel was too.
I remember the day he got really bad. Tests came back and we were brought into that little room to have "the talk". Doc B was gentle and kind with his words and he didn't give us any bullshit. Don't get me wrong, we hated hearing what he had to say but as Axel's Oncologist he had to say it....Axel was bad. He was really, really bad and may not make it through the night let alone the next couple days. There were some medical terms, some statistics, and some advice but all we heard was that Axel was going to die. OUR little boy so full of life only a month and a half ago was going to die. He wasn't getting any better, he was getting worse. I'm not sure I could even see straight at that point. I suddenly got extremely numb.
I don't know how we collected ourselves but we did because we knew that we had to make phone calls and they weren't going to be good ones. I had the dubious task of calling Axel's mother again and Bill called his father. The reactions were pretty much expected from them both. There were a lot of tears, questions and anger. What do you say at that point? Our hearts were breaking into a million pieces with each and every second of each and every day because we have raised this child for the past 8 years. Yes he was their biological child and I do not doubt that they loved him very much but how do you console people who only came to see Axel when it was convenient for them? We did the best we could, assuring both of them that we would call them back right away if anything changed with Axel. His father made plans to come to the hospital that night to see Axel, his mother being a few states away did not.
We went back into Axel's room, I took his little hand in mine and started praying with all my heart and soul. "Lord, I know that I am not the best person and I know that I have made many, many mistakes in my life. I don't pray to you or talk to you as much as I should and I don't go to church unless I feel like it. I don't ask forgiveness for that, I only ask for understanding. Right now though, I am asking that you please heal our little boy. He is such a strong and vibrant little boy and so very smart. Please Lord, please put your healing hands on Axel and help him beat this. Help his body get strong so he can go back upstairs and start fighting the leukemia. Lord, please save our boy. Please."
I lifted my head to look at Axel and close my prayer with a final Amen and I saw a small tear run down the side of his face. It would seem as though God wasn't the only one listening to my prayer that night. Axel was too.
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