Pain

Killian received the VEGF Trap on Friday eve and at 1:30 on Saturday afternoon he suddenly started to have pain. Phil was in Rhode Island on a shoot for the Times and I was in Kingston (30 miles away) shopping for weekly supplies. My phone was uncharged and useless and the car was acting up. Killian tried reaching his doctor, but wasn't aware that he had to go through the on call service. He phoned Josh and Julie, neighbors (and Josh his acupuncturist). Josh treated him to no avail. The pain worsened. When I got home, I asked Josh to bring Killian over (the car still acting up). When I saw Killian, the primary tumors (jaw and ear) were alarmingly swollen and more purple. Josh asked if there was anything he could do. I could tell Killian was holding in the pain, so I said, "yes, please take Cally." The minute she left, he started screaming out and crying. On Saturdays (by this time after 6pm) the only pharmacy open is 30 miles away. Because of the acting-up-car, I asked our neighbor Mark to drive to Kingston to get a jump on the drive, while I I got to work with the on call service to get pain medicine called in. By the time he returned with the medicine, it was almost 8pm and Killian had been in a kind of pain I've never seen him in before. Phil had been phoning, as he drove back from Rhode Island, hearing him in pain and unable to be there. I was hoping he would just drive safely, but concerned for him as well. By 8:30, I had a feeling the Oxycondone they'd called in for the pain would not work and we'd have to go to the hospital. Phil was only 30 miles away, so I phoned neighbor Diane and made an arrangment for her to watch the puppy and then phoned our friend KT to see if Cally could go to her house overnight to stay with her daughter Lucia.

At Benedictine hospital in Kingston, they gave him Dilaudin (don't know how this is spelled) and it worked almost immediately. Grandparents Matt and Mary were scheduled to visit and we asked Killian if maybe we should cancel and he vehemently rejected this plan. He was also dead-set on doing a recording session for Uncle Rock's new CD (a song about Big Foot on which he'll play ukulele). Benedictine sent us home with a couple of doses that were lower than the dose he'd recieved intravenously. He made it through most of Saturday night, and when he woke on Sunday, his pain was a "steady 3 to 6" (on the 1 to 10 pain scale). I had a feeling we'd have to go right back to the hospital, but Matt and Mary arrived with a NEW UKULELE!!!!!!!!!!! - one that Killian had been seen when we were there in Rochester for Chad and Chelsea's wedding. The NEW UKE!!! caused enough distraction that Killian kept saying he was o.k. Cally came home and we all had dinner together. We could tell he was still in pain because Mary and I made him the dinner of his dreams and he couldn't eat it. Pain receptors are tricky. They keep upping the ante. We'd planned to go to Columbia Presbyterian Mon. a.m. anyway, and we got an early start. Phil had to stay with Cally and keep some income coming in. By the time Killian and I were at the end of the 2 hour trip, Killian was in pain crisis. They gave him another IV (morphine this time), which helped a little. They had to up the dose a couple of times before it really took the edge off. SO, Killian was admitted to the hospital and will be here, probably, for the week. They will use that time figure out a pain formula and then to monitor what's going on with the swelling and color change in the tumors.

Last night, Nancy (a friend from North Carolina who lives here now) came and watched Killian while I got us toothbrushes and PJs and other essentials. Candle Cafe delivered food with lots of love in it. Killian got a little extra pain med (he's back on Dilaudin now), and ate happily for the first time in days.