Wednesday, April 30, 2008

New trials are cooking at MSKCC

Dylan is doing great, we are still blessed with stable disease and we are very grateful for that. We attempted a stem cell harvest, but unfortunately the CD34 test showed that there were none to harvest. We will try again in a few months, our little friend Zack is having the same issue after 2 attempts. I read an email from the Band of Parents and the good news is that there are many trials cooking in the lab and that the GD2 vaccine therapy that we are waiting on, has made it through the biggest hurdle with the FDA and is now up to the packaging stage, the release date is still TBA. There is a new adoptive cell therapy being worked on as well as the humanizing of 3F8 and a DNA vaccine. We also learned of a new high dose 3 F8 trial, that will be believed to have the ability to blow through HAMA, meaning that kids like Dylan, who are HAMA positive will have an opportunity to receive 3F8, the release date for this is TBA but should not be too far away. All this is very exciting and has put me in high spirits. The 60 minutes show still has not been aired and I still have no date, but hopefully it will be soon. Dylan so far is doing fine on the Celebrex and Thalidamide, it just makes him tired in the evenings and very hard to wake up in the morning as he seems to sleep very deeply. He has had a slight appetite drop but then his hunger comes in waves and he picks up a bit. We celebrated Anzac day at the Australian bar/restaurant, the boys had a great time, Cain helped out with the DJ most of the time and Dylan did his usual social butterfly around the large amount of fellow Aussies who were there to celebrate the Australian holiday. I am attempting to attend this year’s Neuroblastoma Conference in Chicago this year, the past years Dylan has been too unwell and Tim was not here to look after him, so this year will be my first and I believe Dr Cheung from MSKCC will be speaking this year among many other Neuroblastoma experts around the world. The accommodation has been donated, I just have to hope that I can arrange for my flight costs. I have added 2 new friends to the Children of the House page: Faith and Joey.

It is again with great sadness to ask you to pray for Austin's family, for their peace and strength. Austin passed away last week after a long and hard fight and his remainder of his weeks here on Earth in a coma. Austin had four siblings and both his parents were doctors, who fought with him against this cancer every step of the way with all that they could. Austin was a well known RMDH child as well as a well known member of the Neuroblastoma community here is the USA, with his parents always very actively involved with support groups and Band of Parents.