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 Jennifer and Bill took Michael. They were simple, to the point and as caring and compassionate as we could make them. Michaels first words were "is he going to die?" and Jennifer just cried. We hated making those calls but knew we had to.
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 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.
© 2018 M.J. Williams