Elias’ Recovery & Bone Marrow Testing

Elias is still in a fair amount of pain and discomfort. However, the pain medicine, Roxicet that he was prescribed makes him think he is just fine and can do whatever he wants. That is until the medicine begins to wear off and he is crying and grimacing in obvious pain. Yesterday he was bouncing up and down while laying on his back, then flipping over as quick as he could. While we are excited to see the happy go lucky attitude the fact remains that he almost on cue pays for it later. The point of the recovery is to rest, relax and try not to undo the surgical site with exciting activity. This can not be explained to a one year old though. So it is up to us to figure out how to keep him calm and relaxed. Hopefully today we will notice a difference in the pain and comfort level. We should since it is 3 days after surgery and then we can give him Tylenol instead of the Roxicet. We are thinking he may realize that pain is gone but that he is not able to do the things he normally does since the drug is not as potent.

We should hear something back on the bone marrow biopsy & aspirate test in the next few days, we are told. There are actually three different test at two labs being performed. A portion stayed local for testing and unfortunately I do not have details on what exactly they are doing with that one. The rest of the sample was sent to Cincinnati for a Fluorescent in situ hybridization (a.ka. FISH).  This is a molecular cytogenetic method used to investigate chromosomal abnormalities. Essentially, the fluorescent illuminations attach themselves to abnormal chromosomes. The other test being done there is a more classic study of the marrow where the cells are examined and grown. The purpose of theses tests as I have been explained, helps as a tool for consideration of care management as research is showing certain elements that are consistent among individuals with like results. I know that is a very vague explanation, but the research is still inconclusive but has shown some consistency. The long & short of it I was told is that sometimes these test may move you closer to bone marrow transplant without waiting for counts to drop or going into complete failure. We are still educating ourselves on the complexities surrounding all of this, so obviously do not use this information with authority. We are simply passing on our interpretation as it was explained to us for you to somewhat grasp the concept. After some conversations with some FA parents it appears as they all should have honorary genetics degrees and hopefully one day soon we will learn and retain that same information and keep up with the latest developments in research.  This concludes today’s lecture on bone marrow testing, there will not be a test on this material! Class dismissed!