A new journey

My family and I are on a new journey.  One that is still slow.  Steady?  That remains to be seen.

I am not a writer.  I am not a doctor.  But I have decided to try to journal our journey.  So lets start this with the background.

Two years and 6 months ago,  my husband was having a lot of weight loss.  There were other symptoms that had gone unnoticed (mild depression and such).  The weight loss was the real red flag.  He was losing about 1/2 a pound every other day or so.  This prompted him to make an appointment with his general doctor who ran some blood work.  He got a call that evening around 6 pm telling him he needed to head to the hospital at that moment.  The doctor suspected it was leukemia based on the blood work, but the hospital would run more tests to verify.  I knew the moment he called me in what it was.  I don't know how I knew, as I hadn't even been worried at that point about the weight loss (more like jealous!).

We tried to keep calm for the kids sake, and headed straight to the hospital.  A flurry of blood work, a lot of waiting, and many doctors later, he was admitted at midnight and started on a low dose chemo. In the midst of the panic and bad news, our oncologist was calm and reassuring.  Drew was diagnosed with Chronic Myelogeneous Leukemia (CML) which is the "good" kind.  The main concern that evening was that the white blood cell counts were so high, Drew was at a risk for a stroke.  The chemo would bring down the white blood cell counts quicker, and then he would be started on an oral targeted chemo medication that would treat the CML.  He was released a couple of days later and we resumed life "normally".  It sounds weird to anyone who has any knowledge of the word leukemia.  But it was fairly normal.  The chemo in the hospital did not have the typical chemo reaction of hair loss or nausea.  The medication had fairly benign side effects (some weird cramping and mild tummy problems if not taken with food).  But other than more doctor appointments and lots more blood work in the future, we felt like we had dodged a major bullet.  We were told that the medication would work until it didn't, and then there were 2nd generation drugs we could try.  We were told that many people were on this drug for 10-15 years (about as long as the drug existed) and that in the UK, some were considered cured and could live without the drug.  We felt confident that things were going to be fine.  Until.......

This past November, Drew went into his regularly scheduled oncologist appointment.  He was down to seeing the doctor about every 4 months or so to keep an eye on things.  But the BRAC-able levels in his body had risen from virtually zero to 1 %.  (I will fill in medical detail in another post)  The doctor was concerned because those should not really changed, so he ordered more blood work to find out why.  In December we learned that the leukemia cells had mutated, and the current medication was no longer doing its job completely.  The really bad news is that the cell mutation is a fairly rare one that the majority of the second generation drugs do not affect.

More on our options presented next.