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.

Finally an Update from Italy

Sebastian continues to do well clinically and has been off Peg-ADA since his therapy. He is taught by a teacher who comes to the house several times a week and is doing well in his lessons. Generally he is happy and really enjoys being outside and exercising on his bike and scooter.

After many long months of waiting for test results we finally have some word as to what is going on with Sebastian's immune system. We held off updating the blog until we received these results. It appears his immune system is slowly getting stronger and his t-cell counts are improving. Unfortunately, his numbers are not increasing as well as the younger patients in the study. We hope that in the coming months his "numbers" continue to increase. If they stay at the current levels we will have to entertain other options.

We thank you for keeping Sebastian in your thoughts.

Happy To Be Home

It's hard to believe that we've been home for 3 weeks now. We are all happy to be home and we are all adjusting (yet again) to our new routine. Sebastian did well on our flight home. He wore his mask the entire time, only lifting it up briefly when he needed to eat and drink. The flight was full and there were people coughing, so we are thrilled that Sebastian made it home safely and continues to do clinically well.

We were welcomed home to absolutely beautiful weather and got to enjoy a nice walk along the coast and walks and bike rides in our area. Sebastian's been re-connecting with all of his toys. It's like they are all new again. He's also been enjoying visits with his grandparents. He wants all of their attention and doesn't want them to visit with us. We can understand that.

He's already had 2 appointments at UCSF. It's great to see the doctors and nurses who have taken such good care of him over the years. He feels very comfortable there. His numbers are still low and he is still in a vulnerable place, which means we will continue to wait and hope for those numbers to go up. And, of course we'll continue to be germaphobes!

He was so excited to be home for Halloween and he got to go to a few houses for trick-or-treating. At one house, someone was dressed up like a gorilla and Sebastian thought that was the greatest thing. He just laughed and laughed and asked if it was a real gorilla and if he could go back to that house. We're happy that he was able to enjoy himself.

We miss the people we got to know in Italy and hearing their beautiful language. We've found some music videos on YouTube of Italian music that we listened to while we were there, which is something special for us to share together. We also tune in over the internet to listen to Italian radio on the weekends. We will always hold a special place in our hearts for each and every one of the people who took care of Sebastian while we were there.

Returning Home

We are returning home this week! Ideally, Dr. Aiuti would like us to stay for another 3 months to monitor Sebastian, as the next 3 months are a crucial time; however, we want to get on a plane before flu season gets underway and Lynette's leave of absence is over. The decision to come home was not an easy one to make. We weighed all of the pros and cons and feel that going home now would be best for us. His medications and the use of a mask will help protect him.

After meeting with Dr. Aiuti and getting an assessment of Sebastian's health, it seems things are headed in the right direction; more time is necessary to see if T-cell production will get to better levels in the coming months. Sebastian will continue to be monitored at UCSF, and they will work closely with Dr. Aiuti. We are lucky to have a great team of doctors and nurses at home too.

It's exciting to know that we will be home in a couple of days, although we know that we'll go through a period of culture shock, and it'll take a little time to adjust, as we've experienced from past travels. With Sebastian's situation, we have learned to be cautious and take every care to protect his health. Upon our return, we will need to be even more careful than we've had to be in the past, while we wait for his immune system to improve. He will not be able to attend school or have much interaction with other people. We are in contact with his school and a teacher will be coming to our house to provide Sebastian with his 1st grade education.

Thanks to all for your help, positive thoughts and interest in Sebastian. We would also like to thank Dr. Aiuti and all the scientists, doctors and nurses who have worked hard to help Sebastian. We look forward to being back in touch with family, friends and co-workers soon. Lynette works for Williams-Sonoma and we would like to extend a special thanks to the company and all of the great people there who have been extremely supportive over the years.

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.

Healthy Progress

August is the time of year that most Italians take their vacations, and a good percentage head toward the sea or lakes where it is cooler. Many of the shops in town close for the entire month. The supermarkets are still open and there are still people about, but the change is definitely noticeable. Even the hotel near the hospital, where we go to update the blog, is closed. Unimaginable for our North American brains—but very cool.

Last week we had to move to a different apartment. We actually moved back into the same apartment that we stayed in last year. It took us a couple of days to get situated here, but we are settled in now. The two apartments are basically the same, but one good thing about this one is that there are screens on the windows, so we can get some fresh air without worrying about mosquitos. The view faces another direction and Sebastian does miss watching the construction of the building across the street, but he can still see it when we go outside for a walk.

His numbers are continuing to go up, with the exception of his lymphocytes, which we know will take a long time to increase. We are very happy with how well he is responding to the gene therapy treatment up to this point. The lesions that he had in the hospital have more or less disappeared, however, we believe that he was bit by some sort of insect (maybe a spider) and he had another reaction on his face. The doctors gave us some cream to put on, and it seems to be helping. We still don't take him to parks or into stores, but he no longer needs to wear a mask when we go out, except when we go to the hospital.

In the picture, Sebastian is holding an Italian flag that he made out of Lego's. He's standing in front of one of the windows in our apartment. All of the windows have outside window coverings that can be raised up completely, closed partially to let some light through (as shown in the picture) or closed completely to block out all light. It seems that every home has these window coverings, or some version of window coverings. We think they are for temperature control, privacy, and safety. We prefer to keep them open during the day, so that we can look outside and get some natural light, however, most of our neighbors keep them closed the majority of the time.

Sebastian is enjoying doing his school workbooks. Lately, after we wake up, he has a few lessons prepared for us. These are similar to what he has learned in the previous few days. He says, "I have a game for you to play." Then he gets out a pen for each of us and tells us what we need to do and how it should be done. He often changes the rules of the "game" mid-way and makes sure to correct us all the time. Basically, this is his opportunity to tell us what to do and to be the boss. We think it's really cute. With all the rules Sebastian has had to live by we believe this is very healthy for him. On that note, when we go out for a walk he always says, "Can we go where I want to go?" Of course.