Saturday, May 19, 2007

Will Dylan ever get a break?

Dylan completed his first round of 3F8 yesterday, he had pain during the infusion and his oxygen levels dropped more than usual which required him to wear the mask instead of just holding the blow by tube. He hates the mask and fought the whole time. I think that fear may stem back from his very first anesthetic used with the mask to put him to sleep back in Australia just before he was diagnosed. We left clinic and arrived back at RMDH at 4pm, only to discover he had a temperature of 38.3. I gave him Tylenol, and monitored the fever until 5pm but it jumped to 39 and we went to Urgent Care. After another hour the fever went and did not return, so they gave him Ceftrixone antibiotic that lasts 24 hours. This mystery phantom fever that he has had 3 times since he started the 3F8 study was about to reveal it’s true cause. At 6am this morning, Dylan woke and told me his back was itchy…I looked and there under his left shoulder blade was a cluster of very small red blisters, about 20 of them. I rang Urgent Care and told them I suspected shingles, explained Dylan had no fever and was as bright as a button this morning and I gave him 200mg of Acyclovir that I had on hand from last years scare. They rang back an hour later and told us to come in for IV Acyclovir. The fellow on call said it is hard to determine if it is exactly shingles. This is the same problem we had last year. Dylan had 3 or 4 of these small red blisters appear last year in the exact same spot but by the time infectious diseases came to see him, they had crusted over and taking a scrapping to test what it actually was, was not done. Infectious diseases, decided that because Dylan had not had chicken pox in the past, that it was possibly not shingles, but some other herpes virus that appears on the skin of immune suppressed patients. The fellow today said the same thing, it doesn’t typically look like shingles, and it is not painful like shingles, but it is in a one sided area and itchy like shingles, so it’s hard to say. Dylan was exposed to chicken pox at Ronald McDonald House last year and we were quarantined for 3 weeks away from the house and the hospital, but he never developed any chicken pox symptoms. I guess the best thing to do is assume it’s shingles, treat it as such, and be thankful that he has a white blood count of 15.6 thanks to the GM-CSF injections! I have told the house manager of RMDH but I am unsure whether we need to be quarantined at this stage, and RMDH will await instructions from the hospital as to whether we need to leave. For now we are on the 17th floor, away from the pediatric floor and in an isolation room. Dylan was so happy to be done with the GM-CSF injections and the 3F8 on Friday, and so looking forward to these 3 weeks off, but another small hurdle has now come to light. It could be worse and at least it now explains those phantom fevers. Well back to listening to Dylan complain he is bored and trying to entertain him with some games and coloring. It’s hard for him to be confined to a bed when he is now feeling so well and has energy to burn, especially when the past 2 weeks of therapy have meant taking lots of pain medications that made him sleep most of the time. Fingers crossed we do get out after the weekend, I am hoping that since he is well and his counts are good they will let us out on oral medications and not weeks of IV treatment. Dylan’s HAMA tests is scheduled for the 4th June and if that is negative, his second cycle of 3F8 will start on the 11th June for 2 weeks again.