Here is the link for NY1 Interview NY1
It’s been ages since I have updated, sorry! Not too much has happened really, just enjoying our family time. The weather here cooled down a little over the weekend but we are headed for another heat wave this week. Dylan had his three baby teeth pulled out on Thursday. The local anesthetic was a bit of a drama and Dylan was most upset, but once that was over, the teeth came out within minutes and it was all over. Dylan enjoyed the sensation in his mouth afterwards and kept asking us if his lip looked fat! To take his mind off it, we headed down to Central Park where the boys put Dylan’s remote control boat on the pond. A pretty blue dragon fly kept chasing the antenna on the boat and it kept the boys amused for hours. We saw a family of baby ducks as we walked around the park and Cain got so excited when he saw the squirrels again. After that we headed for Victoria Gardens which is a ride park within Central Park. The boys had lots of fun on the rides and Tim even went on one with Dylan! Dylan totally forgot about his teeth and when we returned to the Ronald McDonald House, he promptly asked for Chinese rice, and he ate is with no problems. The next morning Dylan discovered that the tooth fairy had been through the night and he was very pleased. Our NY1 interview that was filmed a few weeks ago, went on air Friday night at 10:20pm and it ran over the weekend, but no matter how much I watched NY1, I seemed to miss it. Apparently it will be online in a few days and as soon as I know the link I will let you all know so you can watch it on line. Friday night, Hazen had his fund raiser at a theatre, which Cain and I attended, it was a great comedy performance and we were laughing the whole time.
Dylan goes back to clinic tomorrow and we are anticipating a whole week of chemo each day until Friday. We are not looking forward to it, who would, but we just have to cross our fingers that this round will not end up in another hospital admission like it has in the past. Dylan has lost all his eye lashes again. It was strange because for a while there he was growing some hair and his eye lashes and eyebrows came back. This particular chemo (Irinotecan & Temozolomide) seems to effect kids very differently, some have a full head of hair, and others like Dylan loose it all. Some have no side effects and their blood counts stay fine while others just have the diarrhea. And then some, like Dylan, get the works, vomiting, neutropenia and diarrhea. If it was doing something, then it would feel like it was all worth it, but I know all it is doing is keeping it stable, which I guess in a sense, it is doing something. I just feel like our wheels are spinning in the mud at the moment (my impatient nature!) Come on September so that we can hopefully start something new, being MIBG & Arsenic treatment. Then we wait 6 weeks for scans (More waiting Grr!) then if that does not do the trick, we need to wait for the “Hot” 3F8 antibodies, which the head of the Neuroblastoma team, seemed confident would be available earlier than 6 months time. I just wish there was some way of hurrying up the FDA paper work on these treatment approvals, our kids don’t have time to wait this long, because cancer knows no time barriers.
It looks like some positive steps for Neuroblastoma research are being made in Australia, read more on this Press Release
The Karaoke fundraising night at Cabin Fever is scheduled for this Saturday and we are seeing flyers up in many shops in New York, Dylan is like “WOW I am so famous now mum!” A huge thank you to Skye and American Idle who has put in an enormous effort for this event. It starts at 10pm and will cost you $2 per song, and 10f the bar proceeds will also go towards Dylan’s fund. Skye has organized some great raffles that include slabs of VB (Aussie Beer), DVD’s (Star Wars Trilogy, Simpson’s packs and many more). If you are thinking of coming along, here is the Song List