Sebastian's Space

This blog is about our son who has a rare genetic disease called Severe Combined Immunodeficiency (SCID). His form of SCID is linked to a deficiency of the adenosine deaminase (ADA) enzyme. Basically, Sebastian doesn’t have an immune system and is very susceptible to infections that wouldn’t harm healthy children. He is currently participating in a Gene Therapy trial in Italy.

Saturday, June 14, 2008

Neutropenic


Happy Fathers Day!

We are thrilled to report that according to today's blood test, Sebastian is neutropenic. His neutrophils are 500, which is exactly what we were hoping for. This means that the chemo has done its job and has made room in his bone marrow for his new cells. The doctors estimated that it would take 10 - 14 days after re-infusion for him to become neutropenic, and today is day 14!

Aside from this great news, there's not much else to report. Life in the box is going smoothly. Once a week, two clowns come to visit Sebastian, which he really enjoys. They come in with their gowns, hats, and red noses over their masks. They do not go into Sebastian's area, just in the outer area of the room. They do silly things that make Sebastian laugh and laugh. It's really great to watch. What cool people to do this.

The European Soccer Cup is going on right now and there are typically two matches on per night between various countries. Soccer (calcio in Italian) is THE sport here — it's a fast-paced, fun to watch, and we are all enjoying the games. We don't normally watch sports at home, but when we're back, Chris wants to get the cable channel that will allow us to tune into the European matches.

The last few weeks have been stressful, but we continue to meet wonderful people here and we greatly appreciate the hospitality we've received in Italy. We have a lot of respect for the families who have done this before us, and we can only imagine the burden that Dr. Aiuti and his team place upon their shoulders when they take on a new patient.

We are thankful to those of you who have taken an interest in Sebastian's health and well being. We know that he is in the thoughts and prayers of people around the world and this knowledge helps us through each day.