More waiting...

Today we had our consultation with the oncologist at Kelsey-Seybold, since that is where Josh was diagnosed.  At the end of the day now, thinking over it all, it was really such a non-event.  We have spent so many hours online over the last three days that he was mostly just repeating what we already knew, other than that Josh's spleen is enlarged.

Our main interest/concern with today's appointment was to find out what phase of the cancer Josh is in.  Other cancers have stages, but CML has phases.  They are chronic phase, accelerated phase, and blast phase.  We were really hoping to have caught this at the chronic phase.  Unfortunately they were not able to tell us that today.  They need to to a bone marrow biopsy to find that out.  The doc did say that the preliminary results look like chronic and small chance of accelerated since Josh's white blood cell count is so out of control high.

There are three main drugs that they use to treat CML.  The main drug being Gleevec, which is pretty much considered a wonder drug.  The two other drugs have in the past been saved for use when Gleevec fails.  Well recent clinical trials have showed that starting with one of the 2 stronger drugs actually gives better results.  So just six short months ago they were approved for use as a first line defense against CML.  We feel so blessed that this has happened in time for us to be some of the first people to start with the best drugs possible.

So Josh's treatment plan consists of this oral chemo pill daily (for the rest of his life), along with tons of blood tests and occasional bone marrow tests to see how he's doing.  A bone marrow transplant is a last option, only used in the case that nothing else works.  We are relieved to hear this, since we know how hard it can be to find a match, and alsois a very risky procedure.   Everything we have read said that the five year survival rate is phenomenal - around 95%.  This is great news, but you know, I just keep thinking about how much I want Josh around for so much more than five years.  So today we were anxious to ask about the average life expectancy for this, but sadly he didn't really have an answer.  Gleevec itself is so new, with people just starting it less than ten years ago.  And now with these other drugs there is really no data.  Regardless, we are feeling very optimistic after our meeting.

We did not start treatment today like they wanted, cause we are still waiting to get into MD Anderson.  The process to get an appointment is kind of ridiculous.  They have to decide to accept you as a patient.  We have been urged to start treatment as soon as possible, as in a few days.  So to have to wait to even get a consult with MD Anderson is super frustrating.  We have been told by Josh's case worker that they will call us Wednesday to set up an appointment.  Our goal is to have Josh starting treatment by Friday, so please pray that we can get started by then.

So to sum it up, we had a good day.  We didn't really get the answers we were looking for, but it was nice to hear it all from a doctor and not just the internet. :)  Emotionally, each day has been so much better than this awful April Fool's joke we received Friday.  Friday night and all day Saturday was pretty much spent crying, and then yesterday we decided to get out of the house and busy our minds with a trip to Kemah.  It was a tough day for me, just letting all my thoughts run wild about the future, watching Josh with the boys.  And of course with his precious Annie.  But today the laughter returned to our house.  Things that Josh and I normally laugh about and make fun of were actually funny again.  And for that, I am thankful.