Thursday, October 30, 2008

Halloween is in the air

Dylan is doing ok, he had clinic on Friday and his HAMA result came back still positive, which means we still have to wait before he can have 3F8 again. All his other counts are good though. Dr Modak said he was going to ask the radiologist to read his MIBG scan again to determine the spots in the skull, but that he believed it was not progression. I have also been in contact with Dr Sholler in Vermont and we will go and have a consultation with her early December.

Halloween is well and truly in the air, I want to thank “Party Fair” on Knickerbocker Ave in Brooklyn, who generously donated costumes to the children and parents at RMDH last week. Thursday night the RMDH took the teens to Blood Manor, which is a haunted theatrical house. Cain went along and all had a great time, and yes they did scream and get scared as the actors jumped out at them. Dylan wanted to go but after I showed him the website link, he changed his mind… which was a good thing as he was not old enough to be allowed on the trip anyway.

Saturday we all went to Long Island to catch up with the Maynard family. Tim and I joined them for the CancerCare fundraising event, which was a Halloween theme, so we dressed up in our costumes. On Sunday we went on the Maynard’s sail boat for the first time. The weather was beautiful, probably the last nice day left for the year. Cain and Dylan helped set up the sails and learnt that sailing was a lot different to going on a regular boat. You can see the photos of the weekend HERE.

Dylan saw the dentist this week, and he had another tooth pulled. It is one of the side effects of chemo, his teeth are in a terrible state, he needs to have his molars pulled next week as the nerve endings are dying and the adult teeth are not pushing the baby teeth out. The tooth that they pulled today was very strange to look at, all the enamel was gone except a small amount on the tip. Sadly this is very common with children who have chemo but in hind sight it is a minor issue that can be easily repaired these days, and as an adult know one will be able to tell the difference, so I am not concerning myself about it too much. Dylan also had a hearing test done today and we will pick up those results next week to give to his hearing teacher at school so she can meet his needs accordingly.

The boys are getting excited about their birthdays, Dylan has started the countdown with starting every morning with “now there’s …days til my birthday!” Thank you to everyone who bought the boy’s gifts on their wish lists, we could not have done it this year without your help.

Dylan continues Karate every Friday with Kids Kicking Cancer, and he has now made it to yellow belt. He will get his belt at the next ceremony and I will be sure to catch some photos. Cain continues his bass playing endeavors, with band practice every Wednesday night with the New York Pops at the RMDH. They really are sounding great now. Cain is very excited because he wrote a song with Charlie and came up with a bass line too. The NY Pops said that they want to continue to work on it as one of the band’s songs!

The New York City Marathon is this Sunday and again there are many people we know who will be running. One very special person is Jess Thompson from New Zealand. Jess has been following Dylan’s fight for many years now, she has been fund raising for us and also rode her bike in honor of Dylan last year. It will be great to finally meet her in person!