Wednesday, February 1, 2006

3rd round of trial delayed due to platelet levels

We are doing well this week, I’m over my cold/flu and the boys are great. Dylan couldn’t start the 3rd round of the trial this week as his platelets are not high enough, but hopefully by Monday he will be ready. I spoke with Dr Kushner on Tuesday and it has been decided to continue this trial until the “hot” 3F8 antibody trial opens in April. This will mean we will get one more round of this trial in and we scan again at the end of March, ready for the new trial in April. Dylan is stable, which is a great achievement so far. I spoke with a few other neuroblastoma parents on Tuesday and I discovered that there are quite a few who are waiting for these “hot” 3F8 antibodies, just like us. We have all heard that these antibodies are showing a lot of promise. What makes these different to the regular 3F8 is that they have a radioactive tag on them, like MIBG. This means that it will work better for large amounts of bone disease, like in Dylan’s case. I asked what the likelihood of the trial actually opening in April was, and I was told that they are even hoping for it to open sooner. I just hope it doesn’t get delayed like the MIBG therapy has been. I discussed the MIBG therapy and it is still an option for Dylan, but they would like him to try the “hot” 3F8 first because it shows more promise and will be less detrimental on his system. Having MIBG therapy will mean hospitalization and a stem cell rescue. The most important thing throughout all of Dylan’s time in New York and having treatment, is not only trying to get Dylan in remission, but maintaining a quality of life. As you can tell by Dylan’s journal and photos, we have been able to achieve this most of the time, and continuing to have him happy and active is something that remains a priority. The current trial Dylan is on, has meant keeping his disease stable and even though the treatment is very time consuming, he has not been admitted into hospital and has little side effects, which is fantastic. This evening Dylan attended an art class at Ronald McDonald House and he loved it. The teacher said that Dylan can continue to attend and he was very impressed by Dylan’s artistic flare! Dylan also continues to see his teacher 3 days a week and his reading/writing is improving all the time. Over the weekend, we went with the Ronald McDonald House to the opening of an ice cream store just outside of Manhattan that donated part of the days proceeds to the house. The boys met the actor Vincent Pastore from the show The Sopranos, who attended the grand opening. Dylan was over the moon with the “Cake batter” flavored ice cream, I must admit, it is a pretty amazing flavor and really does taste like cake batter!