Wednesday, June 15, 2005

Uncle & cousin arrive to visit

My brother Rick and my nephew Odin arrived safely at about 11pm last night. After a brief tour of the Ronald McDonald House, we headed down 1st Avenue towards the hospital. It was weird seeing New York through their eyes, I had forgotten already how you feel when you first arrive. They were both so excited and you should have seen their faces looking at the shops/stores as we walked to MSKCC. It was a very hot and humid night. Dylan nearly jumped out of his skin when he saw them come into his hospital room. Luckily we have a room to ourselves, so we got away with having late visitors. They stayed until 12:30am then returned back to the house. The next morning my brother rang to say he was not feeling well and should probably not visit Dylan. He took Odin to Central Park early in the morning to feed the squirrels peanuts and apparently one even sat on Odin’s lap while munching on a peanut! By lunch time, my brother went to bed and Odin spent the afternoon in the playroom at the house. We are hoping my brother just has jet lag or it was something he ate on the plane, tonight he said he was feeling a bit better. I collected Odin by dinner time to come and spend time with Dylan and they had a great time playing games, making ice cream sundaes with the volunteers and watching television. Dylan is doing much better today. Yesterday I could tell by his eyes that he was worn out and not 100 percent, but today he is almost back to his old self. He has put on so much weight now that the pajamas which were falling down a month ago, are now leaving an elastic waist band mark on his stomach! As I watched Dylan do laps around the ward I really noticed just how different Dylan looks now with weight on, it’s amazing. Dylan is on 12 hourly doses of Vancomycin and having GCSF to ensure his counts remain high enough to fight off the infection. He is also on his usual Folic acid, Lomotil and TPN. Dylan’s quote of the day: Dylan was trying to lift the side up on his bed and turned to his cousin Odin and said “I can’t do it, it’s too heavy” Odin then reached over and pulled it up saying “It’s not heavy, that was easy” Dylan looked at him sternly and replied “Hey! I’m just a little kid and I have cancer you know!”

It is with great sadness to tell you that we lost another Neuroblastoma warrior today.
Jay gained his angels wings at home and is now in heaven with his friend Amanda. Jay and Amanda were both very brave teenagers battling for many years and had formed a friendship during their treatments at MSKCC. I am so sorry for their families and I wish there was a way to ease the pain of their loss.