Warm welcome back from nurses on 7East

Good Afternoon,

Day +80

Xander surprised us early yesterday morning with a fever of 102.6! After taking it multiple times and talking to Dr. Carl on the phone, we decided to take him to emergency. After 5 hours in the ER, he was on 7 East again. Even the same room as for the transplant!

The funny part, of course, is that his fever subsided 20 minutes after he got to the emergency room. Protocol states that he is put on cefepime right away, so that was the first course of action. So far, cultures have come back negative. Prior test results confirmed that he now is showing Epstein-Barr Virus as active in his system. This could become very problematic quickly because he has no way to fight this off. Yesterday they administered a very heavy drug called Rituximab to fight the virus. FORTUNATELY, he tolerated the drug very well (there can be very serious side effects). He will receive one more dose next week and we are praying that "nips it in the bud" and he doesn't have to get this again.

Because of the fever, he had to miss both ECP treatments this week. Hopefully we'll get to make those up over the next 2 weeks.

It is hard to have this "blip" in home care... we have such a great routine and this just throws it off completely! We will do our best to get right back into the groove when we get home though!

Xander has been afebrile since 7am yesterday, if he makes it to tomorrow morning with no fevers, then he will be sent home tomorrow, and we'll be back on Monday for clinic.

His skin is doing great! Looking much better and getting nice new skin layer going. We missed a couple of doses of the EFA oil and we could tell for sure. So, just a reminder of how important this regiment is to his good health!

Thank you for all of your prayers!

Peace and love to all of Xander's followers,

Emilie