Great news today. My son no longer needs to get bone marrow tests!
My son suffers a condition called Severe Chronic Neutropenia (SCN). He’s had it from the time he was very little. If SCN is genetic then an increased risk of developing Leukemia is also present. As a result of this, until it can be established that the SCN is not genetic, the patient must undergo annual bone marrow testing so as to monitor for the early stages or even the pre-cursors to Leukemia. Bone marrow testing is a frightening and painful process.
Several months ago my son was tested to see if his SCN is genetic or idiopathic. Well, actually the test only determines whether or not the SCN is genetic. In my son’s case, if it is not genetic then it must be idiopathic. The test results were negative meaning that his SCN is not genetic. He was scheduled to go in for bone marrow testing on Friday. At his appointment today the doctors told him that he doesn’t need the tests anymore. That makes for a pretty happy day the Smittie house.
Pre-adult patients with Idiopathic SCN can grow out of it. That is, their body can, as it matures, begin producing appropriate levels of neutrophils. This is our hope and prayer for our son.
Aloha
[posted with ecto]
Hi. I am very happy for your son and your family! My son also has SCN. He is Congenital. His father had Cyclic and passed the gene on to him. I was lucky though, only one child out of 4 got the gene. My son gets the marrow aspirations every yr and has since age 4, he is now 12. He gives himself a shot daily, well 2 shots. He has recently been cleared for the concentrated Neupogen when he reached 7cc’s daily. We as a family know the pain, frustration and heartache of this illness. I pray your son’s marrow will produce the healthy cells he needs so he can live a normal life and never have the pain of this illness again. Good luck to your family!
Hi Tracy,
Thank you for the comment on Smittie’s Ramblings. First, I wanted to make sure you know about the resources at Washington State University. You sound well versed, so I’m sure you have already discovered these folks. However, if you have not you should contact Audrey Bolyard (bolyard at u.washington dot edu). She is the clinical manager for the Severe Chronic Neutropenia Int’l Registry.
You son sounds tough. I think it’s an inherent part of the disease. Best of luck to your son. Be strong, Mom.
Aloha,