Answers!....October 24, 2008

Finally some answers!! We went to see the molecular immunologist again yesterday. We had gotten off track because the hurricane interfered with the doctor's office (imagine that). Anyhow, the doctor was not very happy with the way Brock's last fever cycle went and the number of seizures he had. He reviewed the previous blood work as well as all the work ups we had done over the summer. Based on the findings, he is pretty confident that we are dealing with neutropenia for Brock. It was an interesting conversation with the doctor as he explained how this happens, what we will do and why it took so long to get diagnosed. Basically, all of Brock's previous blood work still fell in the almost "normal" range, but if one were to look at all his results together you can see the pattern in his white blood cells. When his monocytes start to increase his neutrophils decrease quickly...this is a normal response, but his does it on a cycle. Had the doctors caught this we would have been able to more timely testing and diagnose him sooner. The plan now is for us to do lots and lots of blood work for the next 4 weeks. After that, we will begin treatment. We could not start treatment right now because Brock is due for fever this weekend/early next week and it is too late in the cycle to begin. So, around Thanksgiving we will start giving him steroid therapy. He will be monitored for a period of time (probably a cycle or two) and then the doctor will decide if we need to add additional treatments. If the steroids do not gain some control over this then we would proceed to the G-CSF injections daily. Depending on Brock's response to treatment, we may eventually wind up needing a bone marrow transplant. We are hoping that does not happen to be the case. There is still the likelihood of the neutropenia "converting" to leukemia, but that will probably be much farther down the road. Majority of the kids who have this rare diagnosis end up with leukemia later in life (teenage years or early 20s). While this disorder is common among patients going through chemotherapy, it is very rare to have it on its own in the capacity that Brock does. Overall, I think we are relieved to have a diagnosis and know that we are, in fact, not crazy! Now that it is a reality I am a little scared about treatment and outcomes. However, the last fever cycle was so bad and scary that I know that we cannot continue the way we have. While I was in the waiting room yesterday I got into some very interesting conversations with other parents who see the same doctor. They raved about him and how he was able to also diagnose their children with other rare blood disorders. One parent drives 8 hours to see this doctor each month! I felt good after hearing their stories and how the doctor has handled their children. I feel like we are definitely in the right place....it just took jumping through some hoops to finally get to the right doctor! All in all, yesterday went well and we are satisfied with the outcome. We just have to make it through one more fever cycle before we can begin treatment. Between now and then we will become very friendly with the phlebotomist!!