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.

More Tests — Then Walking

In between tests at the hospital we have been exploring Milano by taking the Metro. It is a large city and we are fortunate to be in a place that has such rich history. Sebastian is learning about castles, sculpture, paintings, food, etc. Our Italian vocabulary is growing day by day and it is a beautiful language.

The track record at the hospital we are at is very impressive for Sebastian's conditiion and we feel happy to be here. We hope that all the tests will allow him to undergo the gene therapy procedure. We should know in about three to four weeks.

In this post you will find some shots of our walks. We continue to live very simply -eating a lot of fresh vegetables, pasta and salads. Most of the people dress very "urban", jeans, a t-shirt and an un-designer pair of shoes—like track shoes. That does not mean you cannot find people dressed to impress, but it is not the way most of the city choses their attire. We find ourselves fitting in pretty well except when the locals try and ask us a question.

Testing 1, 2, 3

This week has been predominately testing. Sebastian has had 2 to 3 different tests each day and we've spent a lot of time at the hospital. Luckily, for each appointment someone has helped us get to the right place and explain to the particular doctor why we are there. Sebastian has been doing great with each test and so far the results have been good. We learned that Sebastian will still need his IVIG infusions for at least a year after this treatment and he won't be able to attend school for about a year. That was unexpected and sad news for us, but it's the long term we have to focus on. Although, for now, we have to take each day at a time. After Sebastian's appointments on Thursday, we went into Milan for the afternoon and early evening and did some more sightseeing. The highlight for Sebastian was getting to see a castle that was built in 1368. Once Sebastian stops taking his shots we won't be able to take him out, so we're trying to take advantage at this time to get out and about.

Arrivo!

We have been in Italy since, Monday, April 30, and a lot has happened since we arrived. The flights were fine, and Sebastian got to sit in the pilot's seat of the United plane we flew to New York, which he thought was exciting. I could probably write about 10 pages, but I'm going to try and keep this as brief as possible. Although, we arrived on Monday, 4 of our 5 pieces of luggage didn't arrive until Tuesday afternoon, and the 5th piece of luggage didn't arrive until Wednesday morning. That was quite stressful, but we made the best of it. We've also been having a lot of difficulties with the language barrier. Unfortunately, we don't speak any Italian yet, and most of the people we've come into contact with don't speak English. We're staying in an apartment in a suburb of Milan and have a rental car to drive to the hospital and market. I could write a few pages on the market alone. It's huge - I'm not really familiar with stores like Super Walmart, but that's what this store is like. There are still small shops around, but more and more "Big Box" stores are popping up and supposedly our giant market is a small one. From TVs on one end to clothes in the middle and groceries on the other end, and everything else in between, including motor scooters. Chris has done all of the driving so far, but I'm going to have to get behind the wheel and get comfortable driving here too. We're attaching pictures of the hospital (black building) and our apartment building (on the right). On Thursday, we took the metro to downtown Milan and walked around the city. We got to see the Duomo and the Galleria, which were both very nice. Currently, Milan is full of painted cows. The shot Sebastian receives that gives him the missing enzyme comes from cows, so we like cows! We cannot write any specifics about the research, but we have met with the doctors and we feel confident that Sebastian is in great hands here. Sebastian didn't cooperate at all when they tried to examine him today, but they said we could do it on Monday. Sebastian is acclimating well, and doesn't seem to notice that we're in a different country. He's still adjusting to the time difference (9 hours). We don't have internet access in the apartment, but our goal is to update this blog every weekend from a hotel near the hospital. Overall, we are getting settled in and we feel fortunate to be here. Please continue to keep Sebastian in your thoughts.