Pain…

I’m getting restless. Jake’s blood cell count numbers are excellent.  They are looking toward discharge- soon. But Jake has to be weaned off the IV pain killer, dilaudid,  and he needs to be able to eat. This isn’t our first rodeo with pain killers. There have been a lot the past 2 years. In the hospital, the main objective is to provide comfort. As a mother, my main objective is to have a healthy kid not dependent on pain killers. When Jake was discharged after months in the hospital, he had developed neuropathy pain in his feet. It was an unbearable burning pain, and his toes felt broken. He wanted to sleep in my bed. He could only bear it if his feet were submerged in water. We tried everything; consulted with many people. There was no relief. We went to see Dr. S. There was one narcotic we hadn’t tried. Methadone.  Not something you dream about your 18 year old kid taking. We had exhausted all other pain medications though. It put a dent on the pain. It became a constant 4 or higher on the pain scale. Our goal became 4, nothing would block the pain completely. After one of the chemotherapy drugs, he had a brief respite from the pain. Then with the other chemo,  came the sores in his GI tract.  The painkillers, including dilaudid, don’t touch it. They make him sleep so he can escape the pain. But at what price? We have sat here and watched our son hallucinate and vividly dream for 2 weeks. He briefly wakes up to use the bathroom, then sinks back into his dreams. He chatters a lot, bouncing from one dream to another. He reaches out, his eyes sometime roll back, and his body jerks. Many of his conversations are with his friends. How he must miss them and long to be back at school. My greatest hope is to free him of the cancer, immune deficiency and the pain. We will have to deal with the drugs as well. Hopefully this all will be a distant memory, someday. …

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