Thursday, August 23, 2007
Blessed to be together
Hi Everyone. I arrived back from
late last night after Carter’s funeral. It was extremely difficult attending but in a way it did help me to loose control and finally release all my grief after loosing so many children over the past month. I could say a lot to about my emotions, but I don’t feel that I want to put it on Dylan’s website and depress everybody, so I will just keep it at that. Well Dylan is doing very well, his counts are much better than last week and Dr Modak has even given us the next 2 weeks off hospital check ups! This will be the longest away from hospital visits since we arrived in Pittsburgh Pennsylvania 2 ½ years ago. The number of the New York test was not readily available, but we were told it was still very high. The urine markers taken last week were good though VMA 17 and HVA 28. Dylan had almost no side effects of cycle 5 of Accutane, his lips hardly cracked, his appetite remained great, he had no headaches or pain anywhere and such slight peeling on his face you could barely notice it. The only thing I saw was a day when his cheeks looked flushed. In 2 weeks Dylan will start cycle 6 of Accutane and then when he completes that Dr Modak wants to do a full work up of scans etc. He also mentioned he was looking into some new protocols of therapy but he did not elaborate. The boys are getting along great. Cain is dealing with the transition of coming to HAMA much better than expected and he is getting excited instead of anxious about starting school next month. It was a bit of a shock for both boys to get to know each other again, because they have both changed and grown so much since they were last together. I think now they are actually getting along better than ever because they are more respectful of each other and conscious of the challenges and emotions they both feel. I know that sounds deep but it really is wonderful for me to see how they have both adjusted to the “cancer” lifestyle, so bravely and maturely. Dylan is conscious of the sacrifice Cain has made to be here with him and Cain is conscious of Dylan’s “mood swings” when on Accutane and adapting to the fact that he is not the only child I focus on now. Like I said, it seems we have adapted well to the change much quicker than I thought we would. We have had some great family time together, going to movies, going for walks, visiting friends and traveling with Ronald McDonald House for a variety of events. We spent some time in America Long Island while the weather was hot so the boys could enjoy time in the pool and we took a day trip to Coney Island and to the New York Aquarium. We also joined RMDH for a day trip to , and met up with Justin’s family. The day itself was in honor of Justin, who passed away back in March this year. Another day camp involved a trip to Harriman State Park, where the boys were able to go fishing, ride in canoes, toast mashmellows and swim in the lake. I cannot express the gratitude I have for being a family again and being blessed to still have Dylan in our lives. There will be a short story about our reunion and Dylan’s story airing on Australian TV some time next week on “Today Tonight” A date is not confirmed so keep your eyes on the TV guide. I am hoping it will be available online for all to see, including us LOL. I will add some new photos HERE when the kodak site has finished it's maintenance period.