Ethan Update!

I know this is what you all really want!


How is our Mr. Ethan doing?.... He is doing so awesome. The past few months have been full of great news. As you know Ethan has been going through Chemo (rituximab) treatments for the past 3 years. After 5 rounds of chemo it seems to have done what they wanted it to! His immune system has built back up healthy and Ethan's Rheum declared no more chemo for our little guy. Amen! As we were still in the glory of celebrating that huge  success in Ethan's health we learned that they think they know how he continues to have a bleed into his lungs and if it is what they think it is they can fix it. They think Ethan has a platelet disorder. Now this is not why he bleeds in his lungs in the first place, the original bleed was caused by the bigger issue that they think the resolved with the chemo. A platelet disorder is where his blood is not clotting properly or quickly enough. So it isn't that Ethan is bleeding a lot into his lungs he is just bleeding for an extended period of time which is causing the issue. Ethan has more testing on July 24th that will confirm if he does have the platelet disorder and then he will begin treatment. Treatment is most likely regular infusions but that is way better then bleeding into his lungs, which a long term bleed in your lungs causes your lungs to stop functioning over time. Pretty sure we all know how important our lungs are. 


So right now Ethan continues his meds, continues his IVIG infusions every 4 weeks, and is still followed closely by his wonderful docs at Vandy. He is not in the clear so please continue to pray for our little guy. If he continues to stay on this positive track then they will start decreasing his meds in the next few months. 


There will probably never be a diagnosis for Ethan to explain what all has happened to him but we will take treatment over diagnosis any day and that is what we got. It has been determined that Ethan has numerous things going on that are all unrelated but can cause the perfect storm in his little body. We do know Ethan has some sort of auto-immune disease, he has Alports Syndrome, and possible platelet disorder. Again, a diagnosis doesn't matter as long as the treatments are working. Oh, and I do not want to forget to mention that although this has been a long journey I really feel the treatments and findings have all been happening in God's perfect plan. Everything has been found in the most beneficial order to help Ethan. They fixed the underlying big issue first and are not cleaning up the mess it left behind. We are so grateful! Ethan is a Super Star!


Heavenly Father, watch with us over your child, and grant that he may be restored to that perfect health which it is yours alone to givem through Jesus Christ our Lord. Amen.