Accutane making Dylan smile!

Dylan is doing great, he had his new medi-port placed on Friday with no problems at all which is a sigh of relief after having the temporary line in for so long. Thursday the temporary line leaked and was unusable, so they removed it right then and there. Luckily Dylan did not need platelets on Thursday and even zipped through the surgical procedure of his new medi-port without needing to be transfused. Dylan has had no side effects from the Accuntane therapy he is currently on, infact he is much more sociable, happy and loving! They say that the Accuntane can make patients sad, aggressive and depressed but the opposite has happened with Dylan and so far his skin is also unaffected. He will finish cycle one on Sunday. Then we will have a week break, with a check up thrown in somewhere, followed by the next clinical trial of 3F8 Dylan will commence. Dr Modak met with the team and it has been decided that Dylan will have the “dose escalated 3F8” therapy in preference to the “Beta Glucan study”. The reason for this decision is because it is anticipated that Dylan will HAMA within the first cycle of any 3F8 therapy, maybe even the 1^st day like last time. With this in mind, it is better to attempt to get as much 3F8 into Dylan as possible in a short time, and the dose escalated study is 10 times the regular dose of 3F8 therapy. This would be done for only 2 cycles, 2 weeks on 3 weeks off, then the final 2 weeks on. If by some miracle Dylan defies his odds and does not HAMA, then he will do the Beta-Glucan 3F8 study as the next therapy. The statistics are the same for dose escalated and Beta-Glucan 3F8 studies, so one is not better than the other, and they both have had good results with large amounts of bone disease such as in Dylan’s case. Dylan is pleased because it means for now he does not have to try and drink the Beta-Glucan (snot!), instead he will have daily injections of GM-CSF to stimulate his white blood cells. This week is crazy with preparation to enter the study. Friday was bone marrows and urine collection, Today is a CT scan, platelet transfusion and MIBG injection, tomorrow is ECHO test and MIBG scan and Thursday is a Pentamidine infusion along with a dental visit. Dylan’s teeth have been badly affected by the chemotherapies and now his adult teeth at the front have become loose, sore and the color and holes look terrible. I was concerned that they were cavities but have been told that they are not and that this is a usual problem with children who have had so much chemo. We did have one filled at the last visit to make it look a bit better, but it fell out a week later when chemo was given again. So we will see what the dentist says this time. We see the dental clinic here at MSKCC, so they only treat cancer patients and specialize in these chemo dental issues. I have to apologize for the delay in getting the scrapbooking stars that were made for Dylan late last year during a scrapbooking fund raising event for Dylan. Tim brought them to us in December, but with Dylan being in the hospital for so long over Christmas, it’s only now that I have finally caught up with everything and got the photos taken. Thank you so much to everyone, please have a look at the amazing stars HERE and also see some cheeky photos of Dylan during our “stars” photo session! Oh and yes, Dylan is getting some fuzz on his head again YAY!