Crewe Update

After a busy week, Crewe is happy to spend time at home and enjoy simple things like a warm bath.  Crewe saw a total of 14 doctors last week and had another round of injections.

The team of doctors that forms the Vascular Malformations Clinic examined him on Wednesday and seemed optimistic about his future.  Developmentally, he is right on track for his age. They are also beginning to see encouraging results from the sclerotherapy and recommended that we continue with the injections through the next year. Unless his condition grows rapidly again and starts to compromise his airway, the doctors agree that surgery should not be considered at this point.  

Although the doctors can't completely rule out the possibility of another rapid growth phase, they believe Crewe has passed the phase during which this condition typically can grow most aggressively.

While we are pleased with the assessment, we continue to do research and look for experts in this area.  In our search so far, we have been impressed with the results of a sclerosing agent called OK-432. In Japan, it is the treatment of choice for cystic hygroma. Unfortunately, OK-432 it is not approved by the FDA.

Crewe is recovering well from his injections on Thursday. The doctors focused on his right side and were able to get 12-15 cysts.  He is such a trooper and graduated from the recovery room in just 45 minutes. He has the normal bruising and swelling that we have seen after his other treatments.  You can see some of the swelling on his right side in the photo.