Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.” ~Samuel Johnson
Tuesday, May 15, 2012
Clinic, Eye Doc, & CT scan
Farewell scab party!! His home health nurse promised some red velvet cake to celebrate when his scab fell off. He likes the frosting. She also brought him some starburst the other day which he had never had before. As he was eating them he said, "what are these called?" They might possibly be his new favorite.
Got up at 4am for our trip to horsey doctor today. Dad was awesome to drive the whole way and let mommy and Ty sleep a little. On the way home he was very happy and very into his DS game. It was so fun to see him so animated and having so much fun. First appointment was with the eye doc. When he was inpatient they checked his eyes (along with everything else) for fungus and didn't find any but did see some signs of hemmorage and wanted us to follow up. His eyes are totally fine! Yay!
Next was CT scan to see how the fungus in the lungs is progressing. He holds really still while he rides in and out of the 'spaceship'. *warning* lots of boring details ahead: The CT showed that he still has spots, and they got the voriconazole (antifungal med) blood level test back and it was too low so they doubled his dose. He will be on that for 4 more weeks and then they will do another CT at his next appointment. The good news is he doesn't have to be on steroids this week cause fungus likes steroids. Yay! So at clinic he got his vincristine and we talked to the doc for a while. She agreed that camping, lakes, and rivers are not really an option right now, she said with his history his counts would have to be really high for her to agree that those kind of activities were okay. She also said being off chemo so long like he has certainly isn't ideal, but they worry more about kids who are off of it with high counts who are just refusing or forgetting to take their chemo than they do about kids who are off because of low counts. She wants him to be on the vancomycin until Friday and then pull his picc line out. She said the type of strep he had in his blood culture usually is just a skin contact thing but with these kids who are neutropenic a lot you have to be really conservative so as soon as the IV vancomycin is done she wants the line out. That means a couple of pokies (IV at his next appointment in June and CBC to check counts next week) until they get his new port in in July (hopefully), but he has a really cool pokie prize on its way from his aunt in Utah and he's dealing with the idea better than he has in the past. And no picc line is awesome cause she did say swimming pools are okay because of how heavily chlorinated they are. He's been asking about the dragon slides (Cherry Hill water park in Kaysville) nonstop so he will be happy that we get to go there soon!
These clinic days always wear him out. He came home and fell right to sleep as we hooked him up to his vanco. He weighed 16.1 today which is 35.42 pounds and they didn't do another CBC since he got one yesterday. His chemo pills are being cut quite a bit, she cut his 6mp in half so he will take half of a pill per day 25mg. His methotrexate is cut down to 1 pill, that's 2.5mg. To put that into perspective when he started maintenance he was taking 1 6mp a day 50mg and 10 methotrexate pills a day 25mg. I am curious to see what this does to his counts, and I don't have any predictions this time. We are hoping it is just the right dose for him. We are also hoping for no more fevers. This is probably the most boring technical post I've done in a long time... it's fun to be boring! Thank you thank you for dinner! Thank you for the prayers, concern, and for loving our other kids while we can't be with them. We are so so blessed and life is good!