Friday, May 21

Chemo Round 1, Day 7

This morning after I got myself ready for the day, I turned around from the sink and found Collin had turned himself onto his belly in the bed, and was holding his head up looking around. I got him changed and cleaned up, and a little while later his nurse came in to give him some medication. He turned his head to the right (which his physical therapist has been trying to get him to do) to see her, and then he waved to her. Then he watched as she used syringes to put the meds into his feeding tube. He tried to grab one of the syringes, so she gave him a clean one to play with. Early this afternoon the speech therapist came to work with him again. We sat him in the Cuddle Bug chair, and she put a little cold water in his mouth, and then tried a little bit of orange sherbet. He resisted while she tried putting the spoon into the front of his mouth, but then seemed to enjoy the little tastes he was getting. As the speech therapist was finishing up, the music therapist came in. Last week when she saw Collin, he tolerated soft guitar music and humming, but became agitated with singing. Today however, as she hit the second chord on the guitar, he calmed right down, and just sat happily and listened. He enjoy the guitar, the humming, and the singing. As he was listening, I took a small maraca and shook it gently, and then offered it to Collin. He took it and shook it! We passed it back and forth and took turns shaking it. Then I gave him another instrument with a bell in it, and he enjoyed that one too. When he started to look like he was getting tired, I put him back in bed, and he listened to a cd of soft guitar music as he went to sleep. Later the occupational therapist came to work with Collin. He enjoyed tossing the ball, and then we sat him up and looked at the V-tech talking book again. He tolerated the activity very well, and when he became tired, we let him rest. Earlier this evening, we watched him take off his left sock and play with it using both hands.

Collin's latest Methotrexate level was .09, which means most of the drug is out of his system. He has started having more side effects from the various chemo drugs. Chemo kills all the fast growing cells in the body, whether they are good or bad. All of the cells in the lining of his mouth, esophagus, and GI system are being killed off, and as that happens, there are mouth sores and a lot of mucous that the body has to get rid of, either by vomiting or diarrhea. It seems his mouth is looking red inside, and he did have a few episodes of vomiting mucus this morning. Hopefully the continous morphine drip that he is now on will help with the pain from the mucositis. Today he was given a drug called IVIG, or intra venous immunoglobulin. It is a plasma product made of antibodies and is used to boost the immune system. Collin seemed to be resting comfortably in bed, but then he suddenly started to have an allergic reaction to the IVIG. His blood oxygen levels dropped, so the respiratory therapist was called. Then he started to shiver, and almost looked like he was having a seizure. His blood pressure and heart rate were high. Suddenly his nurse, nurse practitioner, heme/onc fellow, and attending physician were in his room giving him other medications to counteract the allergic reaction. In the end he was fine, but the experience was very frightening. The drug was stopped for a while, and then was re-started at a very slow rate after a steroid and antihistamine were given. He seems to be tolerating the rest of the infusion well now, but his care team is ready to handle another reaction if necessary. Collin is again resting comfortably in bed, with the help of morphine and the Benadryl given to counteract the IVIG response. He also received a second dose of the chemo drug Vincristine, which he received last Friday as well. He will have one more dose of it next Friday. His tube feedings have been re-started, and so has his TPN (IV nutrition).