Dylan went very well at clinic today. He had the Cetuximab antibody, then the Irinotecan chemo. His blood counts are amazing with his hemoglobin at 110, platelets at 165, white blood cells at 3.6 and neutrophils at 2.3. The diarrhea has increased slightly and his face seems a little dry but apart from that this clinical trial has had little side effects. Dylan’s hair continues to grow, I hope it stays that way, although he looks great bald anyway. We used the numbing cream this morning which we had on for 2 hours prior to the access line being put into his medi port, but still there were screams and tears. Dylan says now, that the cream was much better than the spray, and that he was screaming because they were holding him down and that upsets him. I have told Dylan that next week I will ask the nurses to not restrain him unless absolutely necessary and see how we go. It is heart wrenching to watch, and I fight back the tears every time, but I know it is only for a short few minutes of tears, then it’s fine for a week. I am sure he will get used to it as time goes on, he use to scream and cry every time he had finger sticks, but now he can even sleep through them! We watched a few classic horror movies while in hospital and when we returned to the Ronald McDonald House. Nothing too scary, just silly alien, spider and snake ones. We got a bit sick of them by evening but almost all of our usual channels had some horror themed movie on, I guess it’s a Halloween thing! I don’t mind, I must admit, I enjoy the odd horror film. Dylan had his lesson with the teacher again today, he really loves it and she says she is very impressed at how smart he is and how fast he is learning. He is putting words together already and can read some basic picture books now.
The family from Ireland are in need of prayers for their son Oscar. He does not have neuroblastoma, he has a very rare cancer that is so rare it has no name. It was untreatable in Ireland so they came to New York. They have been here almost as long as what we have, and after 2 bone marrow transplants, it seems he now may only have a day or two left. It is so very sad. The boy from Hong Kong, Kevin, is still in hospital. He has improved slightly but is unable to continue any more treatment for about 6 months and in the mean time his neuroblastoma is taking over. The family are just waiting for him to become well enough to fly him home. I know I write about a lot of sadness on here about the other children I live with, but there are also many success stories. There was a family from Italy here for a very long time and they went home cancer free a few months ago. I have been told they will return next weekend for follow up scans and a check up, so I it will be great to see them again.