Sunday, April 5, 2009

Heavy agenda ahead

Dylan continues to do great on his current phase 1 study drug Perifosine. The agenda remains, scans will be done at the end of the month. Dylan attended school all last week and next week he starts Spring break on Wednesday. He has a karate demonstration coming up on the 22nd in New Jersey and shortly after that he will receive his Orange belt. Today we attended the Neuroblastoma reunion party held by the Team at MSKCC. It was a very moving event, so many faces of Neuroblastoma survivors and those who are still in treatment. Many families traveled long distances to New York just for the event. I guess what I brought back from the day was testimony to my opinion of the Neuroblastoma team. Dr LaQuaglia and Dr Cheung both spoke about their reasons why they chose this field of Oncology, in a nutshell they both said that in this field there is hope and that’s what keeps them coming to work each day. Dr Cheung expressed that we have his word that many more promising treatments will be developed in the years to come and that he will continue to move forward to cure. Dr LaQualia said that often people ask him what goes through his mind each time he operates on these children, and his response “the parents, especially the moms” and that’s why he does what he does. Dylan went to shake Dr Modak’s and instead Dr Modak threw his arms around Dylan in a bear hug. It is so reassuring to watch how this team interacts with their patients, their heart is truly behind their drive to do what they do.

Cain is doing amazing, he is so totally devoted to his music. Cain performs with band at Carnegie Hall on April 27th at the New York Pops 26th birthday Gala. On Friday afternoon, I joined the band to “check out” Carnegie Hall. The visit was to give the kids an idea of the magnitude of where they will be playing. We went backstage, and then watch The New York Pops rehearse for the evening’s concert. Unfortunately I discovered that photographs and video recording is strictly prohibited at Carnegie Hall, so I won’t be able to provide photos to show everyone. However I am sure that we will be able to access photos via the New York Pops, they have people who have permits to take photos for promotional purposes. Dr Sherrie Maricle and Bob Sabin are Cain’s main music teachers, they both continue to tell me how talented Cain is and they want to assist him anyway they can to pursue his music dream. Cain will be performing at Radio City on 7th May and also at the Ronald McDonald House Annual Gala on May 18th, and I also heard that the band will be going to another recording studio late May. Our agenda is quickly filling our calendar, we also are attending the Parkinson’s walk on 25th April to support our very dear friend Kevin with his battle.