T-cell test & more waiting

After what felt like a long wait, we heard from our doctor at Hopkins yesterday. Their transplant conference had reviewed Kevin's case and the doctors had a "lively" discussion about how to proceed. It seems nothing with Kevin's disease is black and white, only gray. 

Some technical background first (skip to the bottom if you want to avoid the biology lesson!): 

After Kevin's diagnosis, it was recommended by Dr. Strair that we pursue the chemotherapy path, because he did not have a perfectly matched sibling that could be his donor. He was making his way through months of intense chemo, when a routine (if you can call drilling into your hip routine) bone marrow biopsy produced some suspicious results. Bone marrow biopsies are used to confirm that a patient is still in remission.  Before leukemia blast cells show up in a blood test, you can find them in your bone marrow. The Cancer Institute of NJ performs a gross pathology test, essentially looking for leukemia cells under a microscope.  Since June, they have never found any in Kevin's bone marrow or blood.

They also send Kevin's bone marrow out to Seattle for another much more sensitive test.  The test they perform is called a TCR gene rearrangement study, which can detect very very low levels of potential leukemia cells before a patient enters a full-blown relapse.  However, the presence of these T-cell gene rearrangements does not necessarily imply leukemia because several benign conditions may show such a pattern. We all have T-cells as part of our immune system and we all get spikes of certain types when we're fighting off an infection, for instance. Since September, Kevin's test has come back positive for low levels of T-cells. The big concern for Kevin is that we don't know if this leukemia or a more benign condition, but our doctor believed there was an 80% chance it was leukemia.  Hence, we moved toward a transplant, as our doctor felt this meant relapse was imminent. 

Hopkins says not so fast! They want to figure out if this result is leukemia-related (80% chance) or just what Kevin's body (leukemia or no leukemia) does (20% chance). They believe by comparing his first bone marrow biopsy (when he hadn't yet received treatment and was mostly full of leukemia cells) with the last one they will be able to determine what is really happening. They hope to have the results by next Monday. If it is leukemia lurking, then he will proceed to a haploidentical transplant.  If it's not leukemia, it's not clear that Hopkins would recommend a transplant at this point. If they can't prove that it's the leukemia, a transplant may be dramatically over-treating him. Why use a cannon when a bullet will work? Needless to say, that result would begin yet another round of second or third or fourth opinions. We are both glad that Hopkins is pursuing this testing and feel comfortable with their expertise.

So we wait again. In the meantime, Hopkins is proceeding like transplant is happening. Insurance approval is still being sought and then blood tests can begin. Doing this extra testing shouldn't slow us down any. 

Kevin feels well, but extremely fatigued.  He has some good energy days; yesterday he was able to ice skate a little with the kids - they were thrilled! But today, it's caught up with him and he's been couch-bound all day. There's no predicting how he's going to feel from day to day, even hour to hour. We're both learning have no expectations and whatever it is, it is. 

On a lighter note, our bathroom is done and looks fantastic! Now, I'm not even gonna think about if Kevin doesn't need a transplant, which means I didn't need to pay someone to finish my bathroom....!! Not that I mind...there's even a silver lining with leukemia!