No New News

We wish we had some exciting news to report, but not much has changed since our last update. Sebastian had his 90-day post transplant bone marrow aspiration on Sept. 10. He was put to sleep for about 20 minutes, and as usual he was upset when he woke up. Luckily, he didn't get sick and he recovered quickly. Within an hour after he awoke, we were able to leave the hospital. We were glad that he didn't experience any pain, which was evident by his running and jumping all the way to the car. We should learn the results of that test in another week.

His numbers went up a little, but then they went back down again. They'll take blood again next week—we hope that his numbers will be back up. With his numbers so low, we are staying in the apartment a lot more. We take walks now and then, but not as often as before. Plus the weather is changing, and it's getting quite a bit cooler. After being in the "box", it's not so bad having to stay in the apartment. At least Sebastian moves around (a lot). His new thing is skipping, so he skips around between the 2 rooms—our poor downstairs neighbor!

Parents always think their kids say funny things, and we're no different. As this relates to the picture we're posting, I thought I'd share something we found comical. When I asked Sebastian to get dressed so we could take a picture for the blog, he insisted on wearing his Italian soccer jersey, because he said, "I want to look like a perfect Italian man."

We will update the blog again once we have all the results of the marrow test and a clue as to what the next steps will be and when we might be able to go back home.

Turbulence

We know that this treatment is experimental, and we know from our Canadian friends, who went through this last year, that it can be a very scary ride. Knowing this and actually experiencing it are two very different things. For a period of 3 weeks, Sebastian's numbers were going up, and then to our surprise they went down. Not just a little bit down, but significantly down. His neutrophils went from 1,800 one week down to 500 the following week. We were not just surprised by this; we were shocked. Dr. Aiuti told us there could be fluctuation, because Sebastian's bone marrow has been traumatized, but since his numbers had been continually increasing, we just hoped they would keep going up.

For the past week his neutrophils have been stable at 600. Still low, but the doctors have assured us that they are not worried. We've maintained our position that if the doctors aren't worried, we won't be worried either (easier said than done—but we are trying). We are thankful that Sebastian has been able to stay at the apartment, and has not had to go back into the hospital. As a precaution, he has started a new antibiotic and does need to wear his mask outside again.

Always trying to look on the bright side - Sebastian's skin reactions have all cleared up, he continues to do clinically well, and he has a ton of energy. There's a park near the hospital that we've gone to a couple of times now, and he'll walk there for an hour. There's a river, a lot of trees, grassy areas, and many walking paths to explore. It's a beautiful, peaceful place.

Above is a piece of art made by arranging Sebastian's hands. Throughout Sebastian's life his hands and feet have been sporadically used to make art pieces. This one was made last week after noticing how much his hands have grown since we have been here.