Friday, January 15, 2010

New times ahead

We are all doing great and we love our apartment, life has certainly changed for us in a positive way and we are lapping it up. I have been crazy busy but put aside this afternoon for a website update as I know many of you have been waiting. Dylan had scans done and all is wonderful. His MIBG scan shows he continues to be stable and his urine markers are again great at VMA 12 and HVA 20. Dr Modak also mentioned that his PET scan shows that a small amount of his disease is either dead or mature! Dylan continues with Perifosine and today I recieved notice that the other drug that the doctor wanted Dylan to have in combination with the Perifosine is now available for trials. We will meet next week to set him up on Temsirolimus infusions once a week to see if it has an impact on his disease. Dylan is in school sometimes...he tends to take a lot of time of for one reason or another, colds, pain or any other issue he can find to get out of school. Of course most of the time it is a legitamate excuse but other times he just wants to be home. It is a big adjustment for him, but we keep pushing him and hopefully he will enjoy school more and more, especially now that we have as close to a normal lifestyle as possible since he was diagnoised in July 2004.
Cain is enjoying our new living quarters too, he still goes to the Ronald McDonald House to play in his band and hang out with his friends. Tim and I absolutley love having our "own" place and our "own" room and a "real" bed instead of the fold out sofa we have slept on for so many years. I have to admit that I don't miss the Ronald House. It is a wonderful place and without it we would not have made it as far as we have, but it does take it's emotional toll on you when you have lived there for almost 5 years. I do miss the other parents but many visit us when they come to NYC so our friendships continue. The boys are super happy that we also now have a puppy! His name is Bear and he is a Cockapoo ( Cocker Spaniel X Poodle) He looks just like a bear cub, hense his name. He does not shed fur which is an added bonus. We got him through my work from a couple who had decided that a puppy was not such a great idea for them, so I brought him home and we love him to bits. Dylan loves to walk him and it's a great way to get Dylan moving more. I am off to the dentist next week for a root canal :( Dylan was so brave when he had his done but I do not posess the same fearless attitute! I am working on the photo album, I do apologize but it will be a long process of downloading and uploading from the old kodak gallery. Please continue to pray for all the children fighting cancer, even though we are no longer at the Ronald McDonald House, not a day goes by that my heart is not heavy for all the families that continue to reside there. If anyone needs to contact us, our email address is: