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.
So, this is what we need prayer for:
1) Gene mutation for Ian's HLH identified
2) Caid and Henry don't have HLH
3) Caid or Henry are a match for Ian
4) Bone marrow transplant takes and is successful