Home!

    Sorry we haven't updated sooner! We are now home. Actually, the oncology team sent us home on Monday. We've been trying to adjust back to our home schedule. Ethen is continuing to do well. He is pretty much back to the form he had before we went in for the last antibody treatment. Though we don't have a weight scale at home, Ethen seems to be gaining some of his weight back. He is eating well by mouth, which comes in addition to his tube feeds. His lungs also sound good. He has an occasional cough, but this mostly seems to be upper respiratory. We are continuing to care for Ethen's respiratory system, which involves a breathing treatment (nebulized Pulmicort) twice daily. The team is also allowing us to complete the pain med weaning schedule at home. We should finish this in a couple weeks.

     After posting the last blog entry, we realized that we were unclear about Ethen's treatment plan going forward. We will not be doing any more antibody treatment; however, he is not done with treatment. We will continue Ethen's Accutane treatment, which will involve two more two-week courses and then a full month of Accutane—as long as he tolerates it (we think this caused the hematuria in the PICU). After that, Ethen will have scans to check for relapse prior to scheduling surgery to remove his Hickman line and G-tube. After all this, we are planning to enroll in a test trial. This trial will involve a drug known as DFMO (difluoromethylornithine). Participation in the trial appears to be relatively easy from a practical standpoint—two pills a day for two years—but because it is a trial we are unsure of the expenses involved at this point. We will learn more soon.
     Please continue to pray for Ethen's full recovery. Pray that we can find a good rhythm with all the meds and other home care responsibilities.