Monday, May 11, 2015
Eli and I arrived in Houston at 10:30 last night and went straight to bed in order to be ready for his first appointment at 8:30 this morning. We saw Dr. Rytting to be cleared for sedation and the procedure, which only took 10 minutes. He examined Eli, and asked who did his original resection. I’ve said this many times, but I have to again give God praise for protecting Eli during that first surgery. “He’s beautiful, he has no issues,” he said referring to Eli’s ability to walk and talk and read. Most of you are not in this environment, so you don't have anything to compare him to, but most kids who have been through what he has been through have at least some physical deficiencies that are obvious. We have been carried in our Creator’s hand above the fray all along.
Early tests show that the mystery cells are not leukemia, however, the population of the mystery cells did increase to over 6 percent, out of the acceptable range of under 5 percent for the trial. So, we did not clear the first hurdle. We will learn Thursday our fate with the trial, but since we are outside the requirements, I imagine his participation is in jeopardy. They have more leukemia tests to run, but expect and hope that it all continues to be negative. They are leaning now to believing that the autologous stem cell transplants that he would have had during the first treatment have altered his bone marrow - which produces immature cells, which is what the mystery cells are. They are going to take his NK cells that they have, and test that they are working (test them in the lab with medullo cancer cells and see if they will attack, I guess). Since we do not fit the study, but if it is not leukemia, which we expect now it not to be, and the NK cells still do their job, the doctors are going to make a “Compassionate Appeal” to the board to allow them to give it to Eli. I don’t know how that might go. Now, there is no research to back up what they are wanting to do, so I’d say a unanimous vote to proceed is slim. If the NK cells do not work, then there is no reason to inject him with them. We have a meeting Thursday, which I think will be the final call for participation in the study, and the final call on treatment as time is becoming an issue.
So, the road is getting rougher, narrower, steeper and darker. We are proud of Eli’s contribution thus far. Research in labs got the treatment to the clinic, and Eli’s little body is helping to shape the human application of the treatment which has so much promise. We have a couple of days off, we think. We plan a trip to Toys R Us (even though we have them at home… grrrrr), and a trip to the zoo.