Christmas Eve

Not too much to report. It’s Christmas eve in the hospital. Dylan is sharing the room with his friend and fellow Neuroblastoma warrior Carter, who also had the hot 3F8 therapy. Dylan started radiation therapy twice a day on Wednesday through to Friday and will resume again on Tuesday through to next Friday. His counts are not rising so a stem cell rescue is definitely needed. After radiation is finished then chemo is next on the agenda for a 5 day round, followed by a stem cell rescue. At some stage he will also have a new medi-port inserted as well. Dylan is relatively happy, he is so fine with radiation. I find it very scary though. They were playing Christmas songs as they strapped my baby to the table and loaded the huge machine, then we all exited the room and I watched as the huge thick door shut and locked my son inside. It only lasts a few minutes, but it brings tears to my eyes, and hearing those Christmas songs just some how made it so much worse for some reason. But Dylan, he is a star, he takes it all in his stride, with no complaints and doesn’t move a muscle while it’s being done. Mostly he is happily playing, the only time he really gets upset is when he has the weekly dressing change on the temporary line, that is a huge amount of tears and screams. Tonight’s dressing change was followed by a jelly donut so the tears stopped fairly quickly. He can’t wait until the new medi-port is put in and neither can I. We have decorated the hospital room and Dylan’s IV pole so the Christmas spirit is in full swing at the hospital. The doctors said that Dylan must remain on IV antibiotics for 6 weeks from the time the medi-port was removed due to the type of bug that was in the line, so that means Dylan will remain in the hospital until at least February, making it his longest continuous stay. Tim and Cain will leave on the 10^th January, although I am trying to talk Tim into staying longer, at least until Dylan is stable enough. I don’t know, but something about this anticipated high dose chemo is really scaring me and I feel Tim should be here just in case of complications, but I also know that would mean complications for Tim at work and Cain returning to school. Anyway, Santa comes tomorrow, Skye, Lynn, Greg and Thomas will join us for the day and we are hoping for a hospital exit pass for a few hours so we can return to the RMDH for lunch. Dylan will need to wear a mask, so we thought we might all wear masks and decorate them with a Christmas theme, or make Santa beards on them! The RMDH has been buzzing with many families decorating their door for the season. We can all take a tour on each floor and look at all the doors, kind of like we used to do at home except we would drive and look at all the Christmas lights on the houses. Happy Holidays everyone, I will update soon with some more photos. Thank you for all your gifts, cards and guest book entries. Oh and by the way, a few people have mentioned they have had difficulty signing the guest book. I have contacted the guest book support and awaiting their reply. I may need to transfer to another guest book service.