Hi everyone
Sorry I haven't updated in a while, I try and stay away from the computer when I am having a down day and yesterday was one of those days. Wednesday morning Dylan woke complaining of pain in his jaw, so after a dose of Panadol it settled down. We headed off to the Statue of Liberty via the subway and it was a great day, I even got a little sun burnt! After we got back, we just settled in our room and made the decision that we would relax for the next two days. We have tried to cram so much in before next week, as all week will be spent in hospital visits. At about 1am, Dylan woke screaming in terrible pain, he said his right arm/shoulder and jaw hurt. I gave him Panadol and watched him squirm in strange positions trying to get comfortable. After about 15 minutes he was crying again, saying his jaw was very sore, so after a dose of Codine he finally settled and went back to sleep. Yesterday I woke in a depressed state, as far as the last scans show, Dylan does not have disease in his right shoulder/arm or his jaw. I am now very fearful that things may be progressing and his disease may have spread. Of course the only way to verify this, is with another scan which he will have in about 2 weeks after next weeks round of chemo. On Monday I will discuss with the doctors whether we should skip chemo and jump right in with MIBG in case it is spreading. They will know what is best I guess, so we will just have to wait and see what they say about the episodes of pain. All day yesterday he was o.k but he did say the top of his skull hurt, but he refuse Panadol and said he would be fine. After a milkshake at lunch time he vomited, but then the rest of the afternoon and evening he was fine. This morning he is very happy and the first thing he asked for was a ham and mayonnaise sandwich! Thank goodness to all the generous Aussies who have sent us mayonnaise from Australia! We still have 4 jars left so we should be fine for a while. Today we will just relax at Ronald McDonald House and this evening we will join in on the activity that has been organized, to the NYPD. Cain will love that as he now tells me he is going to be a police officer in New York when he grows up! Dylan's happy because the activity includes hotdogs during the outing. Tomorrow's plans are to walk around Central Park, if the weather is good, and Sunday we will go the "The Sunburnt Cow" fund raiser for Dylan. I have also been told that Dylan is beating everyone at the Australian Consulate in the footy tipping, in fact Dylan is on 21 and that is even higher than "The Herald Sun's" national tippers! Way to go Dyl!
Congratulations to Dylan's Teacher, Carolyn, who just got married. Carolyn was Dylan's first teacher, of which he only attended two terms before he was diagnosed. Carolyn is a fantastic support for Dylan. Dylan's eyes would light up every time she visited him in hospital and Carolyn made great fundraising efforts during the campaign. Thank you Carolyn and Steve, we wish you all the very best. xoxo
