"Ian is continuing to improve, Praise God! He still has a very low heartrate and some other heart issues, they will be doing another echocardiogram to determine function. They also will be doing, probably tomorrow, an MRI and spinal tap to look for any Central Nervous System evidence of HLH. They will be sending blood samples today for the genetic test, but it takes several weeks to receive the results. He gets his second round of chemotherapy today and another higher dose of steroids. They have begun some weaning of the drugs, but he is still very sedated since he is still on the ventilator. He is still very sick, but is no longer the sickest kid in the PICU!
Treatment for Ian that we are getting right now is only to to suppress the life threatening inflammatory process that HLH triggers in response to the virus he caught. Remission is always temporary and the only way for him to be cured is to receive a bone marrow transplant. Please pray fervently for this. From information that the hospital library provided to me on HLH, I read this morning that even with treatment, only 21-26% of patients with (the genetic) HLH survive 5 years. The only hope for a cure is a successful bone marrow transplant.
Joey and Caid went home to LA yesterday and will go back to work and school tomorrow. Please pray for Caid, since I think the family separation will be hardest on him. Please also pray that Henry will continue to get better and stay well. Additionally, please pray that Caid and Henry do not have HLH. They will likely be tested after we get Ian's results, but right now doctors don't know all of the genes that can carry the mutation, so the test really only carries weight if it is positive on the genes that they know about.
Thanks to everyone for all of the love, prayers and support."
Ginger wrote this morning...