Update on Avery

Today, Avery received his second platelet transfusion in 9 days. His platelets also reached a new low of 11. For those of you who don't know, normal range is between 150 and 450 (and platelets are measured in thousands). Thanks to a blood transfusion last Thursday, Avery's hemoglobin was great today (13), but his white count was low. So, it seems we are approaching the day that we have dreaded but suspected may come.

Avery's initial diagnosis of Diamond Blackfan Anemia isn't consistent with all of his other symptoms, and it seems he could be developing Aplastic Anemia. We are still waiting for test results on Avery's bone marrow that we sent to Johns Hopkins. However, regardless of diagnosis, as Avery's hematologist said today, it is time to do something else. Our doctor had thought about trying IV IG therapy to treat platelets, which in some cases can extend the life of a platelet cell, but since it seems Avery isn't making any platelets, it isn't likely that it would have any effect on him. So, we discussed a couple of options today.

The first possibility is immuno-suppression therapy. Basically, Avery would receive chemo-like medication that would weaken his immune system and high doses of steroids in hopes that his bone marrow would somehow reset itself and start producing cells normally. Our doctor said that it works about 50% of the time, but in most cases, it isn't a long-term solution and that symptoms return. It also carries high risks of infection, due to suppressing the immune system, and reactions to the different medications he would be given. Also, his blood counts would drop before any improvement might be seen.

The second possibility is a bone marrow transplant. A BMT requires longer stays in the hospital and/or daily visits to the hospital for treatments (6 weeks to 6 months, depending on complications) and a compatible donor must be found. The best results come from sibling matches, so Tuesday, Phillip, Bryson, and I are going to have the blood work drawn for the HLA matching. If by chance one of us, most likely Bryson, would be a complete match, then we would need to decide whether to even do the immuno-suppression therapy. It might be better to just move to the BMT option. If none of us match, we will need to wait until Miss Emerson Rose appears in July. We are making arrangements to have her cord blood collected and tested for a match. If she isn't a match, extended family and the donor registry would be accessed. However, our doctor thinks we need to do something fairly quickly. So, if Bryson isn't a match, we may have to go ahead with the immuno-suppression therapy to buy us some time until a match can be found. Of course, there are many risks with BMT as well, but it also offers the best results if successful.

The HLA results will take a couple of weeks to come back. We are scheduled to meet with Dr. Harris, the Senior Bone Marow Failure Specialist from Cincinnati Children's Hospital. Dayton does not do transplants, so if it comes to that, we will most likely be going to Cincy. We have met Dr. Harris before, and he is very knowledgeable in issues of bone marrow and transplanting. We are hoping that he will be able to give us some advice on what to do or offer us more information.

I know that many of you have kept our family, specifically Avery, in your prayers. But I'm now asking that you pray that we will make the best decision for our son. We're down to very few options, all with risks, and we want to do what is in Avery's best interest. I also would appreciate if you would pray specifically that Bryson would be a match, and if not, that Emerson will be. They are the most likely compatible donors. We sincerely appreciate your concern and prayers for our family.

Bethany