School Days

We have had good intentions of keeping this blog updated, however, it’s much harder to manage now that we’re back home. We certainly had a lot more free time while we were in Italy to write updates. Also, there hasn’t been much to report until now.

First, let me start with this very exciting news – Sebastian started his first day of 1st grade today! My husband and I walked him to school this morning and waited for him to go into his classroom with his new classmates. Sebastian commented on all of the kids and said that he had never seen so many. I must admit that I got a bit emotional.

Now I’ll back up to what’s happened since our last update. We were scheduled to return to Italy in June for Sebastian’s 1-year post gene therapy follow up visit. We decided not to go, because we felt that the combination of the H1N1 flu virus and Sebastian’s low immune system numbers would make it too risky for him to travel. The doctors were understanding and supportive and the Italian team worked with the UCSF team so that the tests that would have been performed in Italy could be done here. These were the same tests that were done in Italy prior to the gene therapy treatment, and except for the bone marrow biopsy, were not invasive or painful for Sebastian. The biopsy was done on June 30 and a nurse (our friend, Miriam) from Italy came to San Francisco to bring the bone marrow sample back to Italy. Although it would have been nice to go back to Italy and see the doctors and nurses again, we were relieved that we did not have to risk Sebastian’s health to travel there.

We knew it would take about one month before we learned the results from the bone marrow biopsy, so we waited and hoped for the best. When we received the email with the results, we were elated to learn that the gene therapy was working. His body is producing gene corrected cells! We had a phone conversation with Dr. Aiuti to discuss the results and the possibility of Sebastian starting school in a classroom setting, and he said that we should give it a try. We also had a meeting with the Immunologists at UCSF and they agreed that Sebastian should be allowed to start school. His immune system is still compromised and we have to take precautions, but it’s time to start letting him have a “normal” life.

We were able to take a mini-vacation – our first family vacation with no medical ties. We took a 4-day road trip down to Southern California and took Sebastian to Legoland. It was a nice trip for all of us.

Sebastian will continue to get his IVIG treatment at UCSF to give him the antibodies to help protect him from infections. We will take it a day at a time and hope that he will be able to continue in the classroom setting. This has all happened very quickly and we are grateful that Sebastian can attend the school near our home. It’s a darling little school and the staff have been wonderful and accommodating. It helps to know that he will be in good hands, with caring people.

This new freedom is both exciting and scary. Realistically we won’t update the blog for another 6 months, and we hope to report more good news at that time. We would like to thank all of you for your support to make this happen. All of your kind thoughts and prayers for Sebastian have been greatly appreciated.