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.