Out of the Box

On Wednesday, the 53rd day in the box, Sebastian was discharged. The picture above is of him leaving the box, with one foot in and one out. The first thing he did was give Chris a big hug and then he gave me a big hug. It was strange to be able to touch him again without having the gown, cap, mask and gloves on. Almost scary, but great. As we were leaving the isolation area many of the nurses who cared for Sebastian came out to say bye to him. It was a cheerful send-off, but very quick, because we were anxious to get him to the apartment.

As you can imagine, he was very excited to leave the hospital. When we were walking to the car, he was saying, "look at all the people, look at the planes, look at the clouds", as if he was seeing them for the first time. Now, it's as if he was never in the hospital. All the energy that he wasn't expending is certainly back and coming out. It's unbelievable how well he's doing. We're already starting to set a new routine. We are easing him back into school, which was a bit of a struggle at first. His video game play has been reduced to no more than a hour or so a day. He has fallen in love with building Lego's again.

We are able to interact much more now that surgical preparation is no longer necessary to be close to one another, and he's catching up on hugs and cuddle time. Now we need to work on building his strength and getting his weight up. He is able to walk outside with a mask on and he talks all the time about taking walks. He needs to stay away from people and no parks are allowed, but he is enjoying short jaunts. We will try to go a little further each day. He's been eating great, and couldn't wait to eat some of Chris's garlic bread.

Sebastian's immune system will hopefully increase in strength over time. He is by no means completely cured yet, but he is surely one step closer and we are so appreciative of Dr. Auiti for his brilliance. We are thankful to him and the other doctors for putting up with all our questions.

Thank you all for your positive thoughts and help in getting us to this point. We are very grateful!

52 Days...

Good News: Things are really looking up and it's very likely that we will be taking Sebastian back to the apartment this week! On Monday his neutraphils were up to 1,300, and if tomorrow's blood test results are still up he'll be discharged on Thursday. We are very excited about this possibility. He will still be vulnerable to infections and we will basically need to keep him in the apartment, but at least we'll all be together.

Two dermatologists visited Sebastian last week and believe that the lesions are a reaction to a medication. He had been given a new medication to stop the growth of gallstones that were discovered when an ultrasound was done a few weeks ago to check his liver. They've stopped giving him this medication and his lesions seem to be healing. It will take some time for it to clear up. They took a sample of one the lesions to rule out a fungal infection and we should have the results later today. Neither of the doctors think it is a fungal infection and we hope they are correct.

Sebastian is excited that he will be able to leave soon. He has been a real trooper about staying in the box. When we imagined what it would be like in here, we thought that the hardest part would be just keeping Sebastian inside. We couldn't have been more wrong — we are very proud of him.

47 Days of Isolation

Sorry for the delayed entry, we were waiting for some additional information before posting. The last week was a bit discouraging for us. We had expected to be in the hospital for 45 days, but it's going to be longer. It could be a few more days, a week, or more. It appears that Sebastian's immune system movements are going to be as hard to predict as what level any given stock market will close at next week. The words sporadic, complex and multifaceted come to mind. Just like a stock market, there are many variables that react with one another for advancement or decline.

Sebastian's counts weren't going up as anticipated, so last Wednesday he was given a growth stimulant (which is not uncommon) to help his bone marrow production along. We were told that this would bring his immune system "numbers" up within 6 hours after receiving the shot and then they would proceed downward after 48 hours. Ideally, the numbers wouldn't go too far down and his bone marrow would remember what it needed to do and continue to produce white blood cells. He responded well and his numbers initially went up a lot as anticipated. This was very encouraging because if Sebastian were to get an infection it proves that his immune system would try and fight it. This also shows that the therapy appears to be starting to work, which is very exciting. He currently has 600 neutrophils, which is a lot more than before the stimulant shot. He needs at least 800 before they'll consider discharging him—he is getting pretty close. The results from his blood work on Monday and Wednesday were the same. We hope this means that he's reached a new baseline now from the growth stimulant and his marrow will continue to proliferate on its own in an upward trend. If not another growth stimulant injection will most likely be prescribed.

As you can see in the picture, Sebastian has some lesions on his face. He actually has more spots/bumps on other parts of his body too. A dermatologist will visit him later today. It is now thought to be either a reaction to a food or a medicine. It started out as 2 small bumps on his cheek and over the past week, it proceeded to get worse. It looks like the first 2 initial spots might be starting to dry up. We hope the dermatologist will have an answer as to the cause, and also what needs to be done to get rid of these. We also hope it's nothing serious. It's been distressing to see these lesions on his normally flawless skin.

Although we have written about what appear to be minor problems above, there are a lot of positive things going on - his platelets are going up, his hemoglobin is in the normal range, and aside from the lesions, he continues to be in a good clinical state. As you can see from reading above our bodies are complex and ever changing. This procedure will hopefully save Sebastian's life—he had no other options, as other drugs were starting to become less effective. We are thankful for people like Dr. Aiuti who are experts in this complex field.

Thank you for your interest in Sebastian and your positive thoughts. Have a good weekend.