Elijah: Day +76 More than a slump

Elijah's adeno virus counts are very high. They are much higher than they ever were when he was hospitalized (up to 38,000copies) They have continued to go up and down for several months now and the debate has always been when to treat it. We spent a very long day at the clinic yesterday with treatments that needed to get done to boost his immune system and build up his neutrophil count.  He is neutropenic and his white blood cell count is below 1.9. We didn't leave until early in the evening..

The issues remains that Elijah still has few symptoms...only diarrhea, stomach upset and now red eyes...but he has remained fever free and has had no rash or other symptos that he can tell us about. And despite being quite sick, he really does not show it on the outside. The last few days, he has been emotional...which is the first sign that something is not right. But, even that comes and goes. If the treatment for adeno was safe, he would be on the medication right now. But the medication, is hard on the kidneys and he has already been on it for several weeks while in the hospital. And his kidneys showed signs of being stressed when he was on the medication (Cidofovir). His kidney function is still not back to normal.

Thus, we are back to the same story of Elijah's life...his outside does not match his inside. I can't help but wonder how much his difficulty with communication is impairing our understanding of how he really is feeling. When he appears that he is doing well on the outside,  his bloodwork tells a different story. So, on Monday, we will meet with specialists (ENT, and infectious disease) to get some opinions about the way to proceed with treatment. There is risk in either...if we don't treat the adenovirus, it could overtake his system. It is a serious, life threatening post transplant complication. Or, do we treat it and risk permanently damaging his kidneys. That is the question before us.

We would appreciate your prayers for Elijah.

Last night, at the Elk River varsity football game, the coaches and team helped to raise money in the "Give it up for Elijah" campaign! They collected donations and the team members did push ups while a local business pledges 50 cents for every push up completed. We were not able to be there, but Jordan participated and my sister was there as well. We are so humbled to have the support that we have had through this journey... it has been amazing to watch perfect strangers become friends. We are so grateful for the incredible people who have come alongside of us as we help Elijah through this fight for his life.