i wish i could be the match for Ian, but someone else might be!
visit marrow.org and just take one minute to see how every single person adds to the possibility of hope. what an AMAZING time we live in that this is an option we have!!
Lots of progress since I last posted. Ian had an echocardiogram yesterday and the cardiologist was very pleased. His heart is functioning much better now. He also had an MRI and a spinal tap to look for any Central Nervous System evidence of HLH. The doctor said those may not show anything, since he has been on the treatment for several days now, but ordered them anyway in case they may be helpful. For the spinal tap, they gave extra sedation and pain medication for, so he didn't even wake up for it, which was a huge relief for me. We will hopefully have the results of those tomorrow morning.
I was able to talk to the hematologist about some questions I had regarding the bone marrow transplant process. They are running the genetic test on Ian (which takes 3-4 weeks for results) to determine if they can find the mutation for HLH on the genes that they currently know about. This test is extremely expensive, which is why they are not running the test on the rest of our family. If they can identify the gene (best case scenario, as opposed to it coming back normal, which can mean that the mutation is on a gene that they haven't identified yet) then they can run a single gene test on Caid and Henry to see if they have the mutation or not. The best case scenario then would be that neither Caid or Henry have the mutation AND one of them is a bone marrow match. Siblings have the best chance of being a match, since they have the DNA from the same two people as Ian (parents!) as opposed to Joey or I, which only share half our DNA with Ian. However, if Caid or Henry have the mutation too, their bone marrow would be equally faulty and they would need a transplant too. Also, if Ian has the mutation on a gene that hasn't been identified, then it would not be identifiable on Caid or Henry which would leave us to a scary waiting game to find out if they have this same syndrome which could and would eventually be triggered by a virus.
"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."