Phoebe's labs show a number of different levels being elevated and a number of different levels being low. We are not sure exactly what all of these tests and levels mean, but Sue said she would forward the results to the doctor at Children's Hospital of Philadelphia that we were referred to.
The Fellow reports in his notes that they were repeating many panels in their lab, sending for a formal apoptosis assay, and possibly evaluating her DNA for other extremely rare causes of ALPS. He also states that it is "prudent to fully evaluate her immune system given her atypical features."
I have been in contact, pretty much daily, with Mia, the oncology intake coordinator, since we returned from Cincinnati. I have sent her every lab result, ultrasound report, biopsy result and ultrasound images Phoebe has had. She knows about our trip to Cincinnati, our experience there, the tests they were doing and that we were waiting on the results to come in.
Once I received confirmation that some results were in, I sent Mia an email to let her know that she would be receiving the results today. When she emailed me back she had an appointment date for Phoebe to see the specialist. September 30.
I hope this is good news. I hope this specialist can help Phoebe. After our experiences out in Cincinnati, I am finding it hard to be optimistic and excited about this upcoming trip.
All I know is if this specialist can't help us I will continue to contact children's hospitals across the United States until I find someone who can help.