100 Days

Around midnight last night Jake came into my bedroom with a force that immediately woke me up. Mom, I need you. “Let me get dressed.” Ironically I had fallen asleep fully clothed, but had changed into my nightgown an hour ago. I cleared my mind quickly preparing for the worst. I don’t have the strength to get the side panel back on my computer.  “What?” My relief outweighed my panic. There definitely wasn’t room for anger. We went downstairs. We successfully installed the panel, and he was trying to get the screw to hold it permantly. “Do you want me to do it?” No Mother, I don’t. This is my project. Quit butting in. Let me do it. Go upstairs. He was mad. I let it drop. Just yesterday, my dad pointed out that we were approaching 100 days. Remind me again of the significance of 100 days. The first 100 days are the most critical. If he could get to 100 days, there was an excellent prognosis. I had put it out of my mind. But now it was almost here. Jake’s only setback had been too much medicine. It was quickly resolved. Will he have to have another bone marrow biopsy?  “I don’t know. Maybe they just do it if there are concerns.” His blood has been clear of blasts (immature cells that mean leukemia). Dr. N. has also been interested in his warts. Actually the disappearance of his warts. They had shown up after an extended, unidentified illness in 1st grade.  I had asked many doctors about them. His toes were literally covered and his hands had 20 or more. Dr. N. seemed to dismiss it in 2012. Maybe it had meant something but nothing worth discussing. Now he seems fascinated that they have disappeared, leaving behind baby smooth skin. It may be a sign that his new immune system is working well. He has been hanging out with friends until midnight. He has been running around playing Pokémon Go. He rode his motorized long board the other night. I’m not ready for it, but he is. He fully intends to start school after Labor Day. He is cutting back on his pain medicine. They have to be tapered, and it will take several months. He went for more than a year with constant pain. Rate your pain 1-10.  We considered 4 to be good and manageable. This was with opiates- something we didn’t want him taking. Now he doesn’t even rate it. He can fully move his toes. They had been virtually dead for so long, I feared they could never return to normal. The chemo and his new immune system have likely removed the inflammation that plagued him after the meningitis. We will celebrate his 100th day! Knowing Jake, he’ll want a steak. Best celebration ever.

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