"I ended up riding in the ambulance with him to CCMC. (This was his first ambulance ride so even though he wasn't feeling well, he was still very excited). Another couple hours and a few vials of blood later, it was confirmed that he in fact had leukemia however the type we wouldn't know until much later that day. (by this time it was about 2am). We were transferred to a room upstairs where our journey was about to officially begin"
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Chances are if you are reading this book it's because you have a loved one with Leukemia, know someone with Leukemia or have taken care of someone with Leukemia. If you have a child or loved one with Leukemia then you are probably feeling much of the same feelings that we did when we found out about Axel's diagnosis. Anger, hate, frustration, fear, despair, helplessness, hopelessness amongst others. It's perfectly fine to feel those emotions, cancer is a serious thing. If you really think about it, how else are you supposed to feel?
When we were told that Axel has Leukemia, we just sat in that room in the ED at UCONN and cried. We didn't know what else to do. We were so scared and felt so helpless. What we would have given to make it all go away. We couldn't do anything about it so here we are. There are a lot of feelings that will surface that you didn't know you were capable of feeling and that's ok. Just remember one thing: Your child or loved one needs you to be strong, positive and happy. If you aren't, how do you expect them to be?
It was time to make phone calls. We had to let everyone know but it was very late and there were only a few people we knew we could call at that hour. The two we were dreading the most? His mother and father. I took Mom and Bill took Dad. They were simple, to the point and as caring and compassionate as we could make them. Axel's fathers first words were "is he going to die?" and his mother just cried. We hated making those calls but knew we had to.
It was time to make phone calls. We had to let everyone know but it was very late and there were only a few people we knew we could call at that hour. The two we were dreading the most? His mother and father. I took Mom and Bill took Dad. They were simple, to the point and as caring and compassionate as we could make them. Axel's fathers first words were "is he going to die?" and his mother just cried. We hated making those calls but knew we had to.
I went to CCMC in the ambulance with Axel. Bill took his car home and then had someone else give him a ride back to UCONN to get my car and then he met us at the hospital. With everything that was going on, do you know what Axel was concerned with? Whether or not they were going to put the sirens on for him! This kid is unreal. Here he is, at the beginning of the biggest, mightiest battle of his life and he is worried about a siren! It turned out to be the longest ride of my life. The anxiety was overwhelming but I tried not to let Axel know. It was a good thing I was strapped in behind him so he couldn't see my face. The last thing I wanted was to let him see how scared I was.
We finally got to CCMC and were brought to one of the rooms in the ED. I don't even know how long we were there before Bill showed up. Maybe 45 minutes, maybe an hour. I think it was another hour before they had a bed ready for him and we were brought upstairs. MS8. The Hem-Onc floor.
We started out in room 809. Right across from the nurses' station. Pretty convenient if you needed anything. Now we were going on 24 hours with no sleep. Axel was settled into his room and we didn't know which end was up. Our normal was changing. Our lives were changing. We were watching our little boy sleep with uncertainty. You bet we were scared. I can't even remember how much sleep we got. I'm sure we dozed a little but sleep was something we did not get much of.
We were only on the 8th floor for a day before Axel had trouble breathing. Not gasping for air or anything, just shallow. The pain in his chest was getting worse and he was starting to get pain in his belly. Here we are, still reeling from the news that he has leukemia and now we have all kinds of doctors coming in because things were getting worse.
I probably should have started to write this book sooner because the small details and string of events are muddled now. I try to pick things out of my brain and memories to piece them together but there are always a few pieces of the puzzle that I can't seem to find. Who knows, maybe I never will.
Axel ended up being transferred to the PICU on August 7th or 8th. After a barrage of x-rays and CT scans, they found that Axel had an excessive amount of fluid in his chest which was causing the pain. As a result, tubes had to be put in his chest to drain the fluid and he had to be intubated to help him breathe. He couldn't do it on his own anymore because his lungs were getting to heavy with the fluid. I can't imagine any 9-year old that would be comfortable with a plastic tube in his throat so they had to sedate him and this is how he remained for a little over a month.
My sister Mindy is a trauma ICU nurse in Oklahoma. Yes, here we were dealing with cancer but she knew all about PICU and what they were doing. If I had a question about a medication, she knew the answer. If I was confused about why they were doing something, she would explain it to me. Sometimes I would try to tell her what was going on or what they were doing for Axel and I wouldn't be able to relay the information to her accurately. Given the circumstances, I just gave them permission to talk to her about Axel's condition and treatment so she knew what was going on and knew what to say to me. I don't know if I ever told her how much that meant to me so if you are reading this book Mindy, I love you so very much for the way you helped me and I want to tell you how much it meant to me. How much you mean to me. I don't think we would have gotten through the PICU stage of his leukemia had you not been there for us.
After we were admitted I decided to start a Facebook page for Axel so I could post every day about his progress, good or bad and keep everyone up to date at the same time. It would end up being good therapy for me as well. Having an outlet allowed me to "vent" while at the same time feeling welcomed support from so many people, a lot of whom I have never met. Those first few days were brutal. I was answering a text almost every 10 minutes and was always saying the same thing to about 60 different people. I didn't want to keep doing that so on August 6th, our group 'Friends of Axel Sundberg' was born.
We started out in room 809. Right across from the nurses' station. Pretty convenient if you needed anything. Now we were going on 24 hours with no sleep. Axel was settled into his room and we didn't know which end was up. Our normal was changing. Our lives were changing. We were watching our little boy sleep with uncertainty. You bet we were scared. I can't even remember how much sleep we got. I'm sure we dozed a little but sleep was something we did not get much of.
We were only on the 8th floor for a day before Axel had trouble breathing. Not gasping for air or anything, just shallow. The pain in his chest was getting worse and he was starting to get pain in his belly. Here we are, still reeling from the news that he has leukemia and now we have all kinds of doctors coming in because things were getting worse.
I probably should have started to write this book sooner because the small details and string of events are muddled now. I try to pick things out of my brain and memories to piece them together but there are always a few pieces of the puzzle that I can't seem to find. Who knows, maybe I never will.
Axel ended up being transferred to the PICU on August 7th or 8th. After a barrage of x-rays and CT scans, they found that Axel had an excessive amount of fluid in his chest which was causing the pain. As a result, tubes had to be put in his chest to drain the fluid and he had to be intubated to help him breathe. He couldn't do it on his own anymore because his lungs were getting to heavy with the fluid. I can't imagine any 9-year old that would be comfortable with a plastic tube in his throat so they had to sedate him and this is how he remained for a little over a month.
My sister Mindy is a trauma ICU nurse in Oklahoma. Yes, here we were dealing with cancer but she knew all about PICU and what they were doing. If I had a question about a medication, she knew the answer. If I was confused about why they were doing something, she would explain it to me. Sometimes I would try to tell her what was going on or what they were doing for Axel and I wouldn't be able to relay the information to her accurately. Given the circumstances, I just gave them permission to talk to her about Axel's condition and treatment so she knew what was going on and knew what to say to me. I don't know if I ever told her how much that meant to me so if you are reading this book Mindy, I love you so very much for the way you helped me and I want to tell you how much it meant to me. How much you mean to me. I don't think we would have gotten through the PICU stage of his leukemia had you not been there for us.
After we were admitted I decided to start a Facebook page for Axel so I could post every day about his progress, good or bad and keep everyone up to date at the same time. It would end up being good therapy for me as well. Having an outlet allowed me to "vent" while at the same time feeling welcomed support from so many people, a lot of whom I have never met. Those first few days were brutal. I was answering a text almost every 10 minutes and was always saying the same thing to about 60 different people. I didn't want to keep doing that so on August 6th, our group 'Friends of Axel Sundberg' was born.
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