No, we have not forgotten about you! It is just that for the first time in a long time, we had the semblance of “normalcy” in our lives. We needed some rest after all the treatments and the draining journey to Michigan, to catch up with work and only worry about regular colds and stomach bugs like normal parents do.
Normal has been the keyword for Luca too. He has been able to go back to “dagis” (kindergarten), happily reunited with his friends. As the treatment has very few side effects – actually none so far! – he is taking part in all the activities without any problem. He is preparing for a career as an engineer it seems, by building amazing stuff with legos. And of course, growing up so fast!
A few words on the trial itself. The drug, difluoromethylornithine (DFMO), is simply a pill you take twice a day. It doesn’t have much of a flavor and can be easily mixed in with food, to our great relief since Luca is not into swallowing pills yet.
As the drug targets polyamines, which are involved in cell growth, the trial requires a special diet. Luca has to stay away from food that contains high levels of polyamines such as tomatoes, oranges, bananas, etc. The trial will include another six trips to Helen Devos Children’s Hospital in Michigan in the next two years, mostly for tests and check ups. The trial is in phase 3 and the statistics are not as promising as the very early numbers that came from the trial at the Memorial Sloan Kettering Cancer Center in New York that we first considered, but perhaps more realistic since it has been collecting data for several years now. For relapsed neuroblastoma, 50% of the participants remain in remission after two years. A number that gives us a great deal of hope.
Our next trip to Michigan will be in mid April. His next scans are planned for when we get there and we already have a lot of what cancer parents call “scanxiety”, worrying about the results and whether he’ll still be in remission. But we are full of hope. We believe in him. We believe in the future. And we take strength from your support.
Sending you all much love and gratitude.