Hi Everyone, sorry about the delay in updates.
Friday Dylan had a hospital appointment and his blood counts were great so no transfusions were necessary. We saw Dr Kushner and he said that the Neuroblastoma team would discuss Dylan’s case on Tuesday, to discuss the next stage of treatment for Dylan. After hospital, Dylan and I explored 1st and 2nd Avenues after a stop at the Post Office to buy some stamps. The weather was lovely, still a bit cold though but the sun was out. In the evening we played board games and watched some TV. On Saturday Rebecca took us to Herald Square on the subway for a look around. We discovered that the subway was not wheelchair friendly at all, but Dylan loved it and enjoyed listening to some buskers in the subway while we waited for the train. We could hear them playing as we climbed down the stairs and Dylan said “sounds like they’re having a party down there!” Then on Sunday Dylan’s Chicky babe took us out for pizza and then we took a cab to Union Square for a look around. I think we have covered all the squares now! LOL
Yesterday was a huge day for us. Rebecca and Rene took Dylan and I out for some sight seeing thanks to Ken and Bob at the Australian Consul Office. We started at the Empire State Building, what a view! Very windy though. Then we headed for “Dylan’s Candy Store” Yes there is a candy store in New York named Dylan’s, how cool! Dylan loved it, it’s like Willie Wonka’s factory. You can see by the home page photo that we even scored a cap for Dylan to wear. Then after lunch at Burger King, we visited the very supportive staff at the Australian Consulates office, where we got a great view of the Chrysler building outside Rebecca’s window. Then we headed to the Cable car (Sky tram), that was great fun, it’s used in the “Spiderman 2” movie! What a day, we were exhausted when we got back to Ronald McDonald House, but had just enough energy to watch the cast members from the “Lion King” Broadway show, perform songs for all the kids at RMH. I have added a couple of photos on the “View Photo’s” link.
It’s great to get out and about while we can, after a month in hospital it feels so good. I am so grateful to Kathy, Bec, Rene and everyone else who has helped us to get around and see some things. I must admit, I am not very brave about venturing out on our own, it’s just so much more secure to be with someone who knows the city.
Today we are at MSKCC for a blood test to check on Dylan’s counts, then we will discuss with the doctors on the next step in Dylan’s treatment. I have a feeling that the MIBG Scan showed little improvement from the last dose of chemo, so 3F8 antibodies will need to be delayed longer until we can reduce the bone disease. They will decide on either another round of chemo, different chemo or MIBG treatment followed by some sort of arsenic treatment. If Dylan has MIBG treatment, he will be isolated for a few days as he will be radioactive. Sounds so scary, but we have to fight fire with fire.
Dylan is well within himself, very sprightly and happy. This continues to tell me to keep going, and not give up. I question myself sometimes, have I done the right thing, dragging him half way around the world away from loved ones? But then what was the alternative? Stay home with a bottle of morphine and wait until….I just couldn’t comprehend that. So here we are, I remind myself why we are here and am so grateful that we made it this far. I have to soldier on and remain positive for Dylan. My heart tells me this is the right place to be, and my heart led us here. So I have to believe and trust my heart in knowing that Dylan will beat this.