Bone Marrow Biopsy Results

We heard back from the FA clinic at Children's with the final results of the bone marrow testing that was done last week while Elias was in the O.R. All the test have come back normal and within acceptable limits. That is the positive news. Elias' cellularity is low though at only about 20%. The doctors have commented that this is a relatively new focus for information and they have not determined exactly how to interpret these results completely with every patient. There is a bit of a learning curve with variables impacting the interpretations. Those numbers are something they see in someone with much lower counts, so watching Elias, who's counts are fairly normal and stable is making this more of an "interesting find." They will be watching this closely. Elias' platelets have dropped overall, but still well above a level of concern. They have been trending up and down since November when the dropped to 85k after the failed colostomy reversal surgery. They had risen back to his baseline of 215k but the past several months they have declined and are holding steady at 150k. For reference when he gets to 50k is when the radar gradually starts to tick for bone marrow transplant. No one is concerned too much with the new lower baseline. A decline is expected and this is likely the natural course. One thing that is possible, but not proven is that with the lower cellularity the numbers could plummet vs gradually decline, but that is something they have yet to establish. They admittedly are not use to seeing patients with numbers as good as Elias. That is the beauty of rare disease and treating patients with so many variables. We are fortunate enough to have such dedicated doctors that will account for any and all possibilities. This provides all the other issues the time we need to get Elias as strong as possible with all the other affected systems to give him his best chance during transplant. Overall these results were what they expected and they are pleased. Elias continues to thrive developmentally and we are taking the time to appreciate all he is achieving. Here is a video we posted last night showing how happy he is and how much fun he has when he is feeling great! You can't help but smile when you watch this.