There Has Been A Delay

Sebastian only had one appointment last week on Friday, but Friday was also a very stressful day in terms of news. We learned that Sebastian's gene therapy treatment, which we expected to begin at the end of June, will be delayed until September. The medicine did not meet the strict guidelines and has to be reproduced. After meeting with the doctors, we decided that it would be best to go back home for a couple of months and then come back in September. This is not ideal for any of us, but it is out of everyone's control, and we have to make the best of it. Of course, we are grateful that this was discovered and still know, without a doubt, that this is where Sebastian needs to be for this treatment.

The past two days have been full hospital days for Sebastian. Yesterday, he was put to sleep for a bone marrow aspiration and MRI. I have to say that it was heartbreaking for me when he looked at me while he was going under and said, "Mama, I feel different. I can't talk." As soon as he was out, we left the room, and I just cried. It was hard on Chris too, but I was thankful that he was there to console me. When Sebastian woke up, he cried first, then he was angry and screaming for a cloth diaper (what he uses as a "blankie"). He didn't care that we didn't have any diapers with us and that he wasn't going to get one. I left the room for a bit and Chris was able to get him calmed down. The picture was taken when he was calm, but certainly still looking out of it. After he ate and drank and sat up for a bit, we were able to bring him back to the apartment. He was great the rest of the night. Today he had his IVIG infusion, so another long day, but he did fine.

The doctors, nurses, and other staff we've been in contact with here have treated us wonderfully and have been great with Sebastian. He refers to many of the people as his friends and asks when he'll see them again. We are thankful, especially since we don't even speak Italian yet, although we try our best.

Sebastian has a few more tests on Friday and then we should be on our way home shortly thereafter. We don't have the exact date yet. In three weeks time, we should know the results of the bone marrow aspiration, which is the final determination of Sebastian's ability to participate in the study. We can only hope for good results and the opportunity to return in September. As always, we want to thank you all for your support.