Done With Protocol!

(just pouring some tea)

PROTOCOL COMPLETE

     April was a good month. The best part of the month was giving Ethen his last dose of Accutane on Sunday night. Brian also successfully defended his thesis on Thursday, which marked the end of a long and arduous research project he's been working on for a while. We had a special recipe of pancakes—chock-full of sprinkles—to celebrate both accomplishments!
     Overall Ethen's been doing well. The Accutane dried out Ethen's skin and probably caused him some moodiness, but it didn't slow him down too much. He's turning into a walking machine! Last month we mentioned concern for Ethen's allergies. Though he's still battling allergies, the mucus and other effects of allergens have diminished significantly. The important thing is that his lungs are clear. We are continuing his breathing treatments and will continue to keep a close eye on his breathing.

WHAT'S NEXT?

     We went to Ethen's clinic visit on Monday. He's continuing to gain weight, which is another step in the right direction to remove his G-tube. We stopped feeds several weeks ago to see how he would do on solely oral intake. He's made little gains the past two clinic visits, which is reassuring. We continue to give Ethen his medications through his G-tube, which is really the only thing keeping us from removing his G-tube at this point. We will probably remove it soon.
     At clinic we met with the clinical research team to discuss the DFMO test trial. We went over the requirements for Ethen to enroll in the clinical trial, risks to Ethen, and other trial-related matters. Risks are low and the drug is fairly simple to administer. The trial requires that we give Ethen two pills of DFMO a day for the next two years with intermittent doctor's visits to check vitals and blood.
     Before the trial starts (May 24), Ethen will have scans (May 18) to see if he's clear. As you can imagine, we are wrestling with anxious thoughts. Please pray for and with us as we wait. Pray Ethen is cancer-free and that he continues to thrive and love life.