Some of the hardest things with the cancer treatment process have been looking at the shell of my son, and not seeing my son. Treatment can be rough, and don’t get me wrong he is AMAZING!! But sometimes it gets too much for him and understandably my cute little guy checks out. Dr. Jekyll gives in and Mr. Hyde rears his ugly head.
The worst time was when we were starting this whole process, it was one of the first days of aggressive treatment. To set the stage, he had been sick for over a month and then life threateningly sick for a few days at this point. We had begun giving him steroids to treat his cancer (fun fact: Dexamethasone is one of the few drugs that can cross the blood brain barrier and kill Leukemia on both sides). They warned us that there would be times during this we would have to remind ourselves, “that isn’t our son, that is the medication.” He was exhausted and he flew off into a rage. He tried to destroy everything in his reach. Kicking and hitting anyone who came close, including Amy. I finally jumped on his bed to intervene when he started clawing at his fresh surgically placed port-a-cath in his chest. Through a barrage of violence, I never thought him capable of, I had to pinch his legs between my legs and use both of my hands to control his. He ripped a small slice on my nostril trying to tear off my nose. So there I sat on a hospital bed with my 2, nearly 3 year old screaming at me and I was using my chin to ward off his bites to my chest. He finally calmed down and came back to himself, but it was an uncomfortably long time. Over the next few days he would oscillate between “go away” and “hold me.” At one point both of these occurred at the same time. His solution to have both was that I lay on the bed next to him and he would turn his back to me. He wanted to feel me there but otherwise wanted nothing to do with me.
Most recently, with him off of steroids for over a week he came out of sedation angry. He went under sedation for a lumbar puncture. He receives a lot of Lumbar punctures, they withdraw cerebrospinal fluid to test for the presence of Leukemia in the central nervous system and while they have a needle there they give him chemotherapy in his spinal fluid. He usually tolerates them well, but this one was scheduled late enough in the day to have stretched nap time past it’s breaking point. As he was waking up we came into the room. He motioned for Amy to pick him up and hold him which she gladly did. Shortly there after he snapped and flew off into a rage, hitting and kicking at a very pregnant Amy. I took him away from her and I could also not console him. He started SCREAMING at the top of his lungs and would not stop. The nurse discharged us, or at least we think those were the words we saw mouthed by her. We made the long walk out of Primary Children’s Hospital, roughly a quarter of a mile walk including one sky bridge 4 separate elevators and a separate building called the ECCLES building to get to the parking garage. All the while he screamed at the top of his lungs as Amy and I played hot potato with him trying to see if either of us had any magic left in us. Nope. We finally got him in the car and he screamed at Amy from his carseat for another half hour while I went back into the hospital pharmacy to get his oral Chemo for the next 28 days. When I finally got back in the car he wanted me to sit by him and hold his hand while Amy drove. Five to ten minutes into the drive he finally fell asleep. We went through a drive through for food and he was totally out when we got back to our hotel. He was still occasionally doing a breath catching sob in his sleep. I told Amy I didn’t dare move him so he and I sat in car in a parking garage so he could stay asleep. He fell into a peaceful sleep so Amy and I started taking turns running errands while he slept in the car for 2-3 hours. He woke up happy and nice like nothing was ever wrong!
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