Last week we posted about how the options we have been given for Trey’s next treatment are less than ideal.  We went on to tell you about how the “tumor board” wanted to get an MIBG scan and a bone marrow biopsy first to see how active Trey’s cancer is.  The MIBG scan is today and the biopsy is tomorrow.  I wanted to take a minute to further clarify what was going on and what the options actually are.

The MIBG scan is when they inject him (yesterday) with a nuclear radiation type fluid, then put him in an MRI like thing a day later (today).  He has to lay still for an hour and a half while the scan takes place.  The fluid goes to wherever the cancer is and the scan reveals it (because it glows).  The more cancer the more glowing.  The brighter the glow the more cancer in that area.  Because he has to lie still for 1.5 hours they give him an oral medicine that basically causes him to be super mellow.  It basically makes him drunker than any child should be.  He takes to it quite well and becomes quite silly and happy.

The bone marrow biopsy (tomorrow) is when they lightly put him under, take a large bore needle, hammer it into his spine and take out a sample.  They then check the sample to see if there is any cancer present in his marrow.  Much as we know (from the past) that it is not very painful for Trey except for a little soreness for a few days after.  His two main Oncologists will then check the results and confer as to what options we have moving forward.

IF THE TESTS SHOW MINIMAL CANCEROUS ACTIVITY we could opt for the stem cell treatment.  This was originally part of his scheduled treatment but he never got to a point where the cancer had gone away enough.  They normally only do this when the cancer is gone and they do it to make sure they get even the most microscopic cells hiding somewhere in the body.  Basically, they give him so much chemo that it kills everything, including his stem cells in his marrow.  This is when they would replace the stem cells with the ones they harvested from him early in 2011.  We would be in the hospital for around a month.  It is brutal.  We know of several kids who were deemed cancer free who then died from complications from this treatment.

IF THE TEST SHOW WIDESPREAD BUT NOT SEVERELY CONCENTRATED ACTIVITY we could opt for MIBG therapy.  This is what we looked at doing before his second surgery (that went real bad).  This is similar to the MIBG scan except the give him tons of radiation so that it doesn’t just go to the cancer but eats at it and kills it.  The downside is that it is in Philly, for the duration of the treatment (a couple of days) he has to be isolated in a room, it is so new that they really don’t know about the long term affects on the patient (filling them with sooooo much radiation).

IF IT’S SOMEWHERE IN BETWEEN OR STILL LARGELY AROUND HIS AORTA AND ARTERIES we could opt for a new treatment that combines a new drug with old school chemo.  This would entail all the drawbacks and side effects of regular chemo like loss of hair, vomiting, mouth sores, crushing of immune system, weeks in the hospital, plus whatever the new drug does.

All of these treatments are intended to improve the length and “quality” of his life (after the treatment of course) not being “curative” in nature.  If, if, if, the tests come back miraculously clear…ish, it could be conceivable that the stem cell therapy (the first one listed above) would be our best bet toward any hope of a cure…if he survives it.

Our fourth option is to do nothing.  As it spreads we could use old school radiation to improve comfort as we go.  For example, if is spreads to his hips and he can’t walk they could zap at it there in the hopes of alleviating that pain.  This is less than ideal in that it is the most reactionary and, to a degree, almost defeatist.  However, it certainly avoids the most up front agony for now.

So, for now, that’s it.  That’s the list.  I hope this information helps you understand what we are facing.  He is great, right now.  He is our YoungWarrior (he and I had a battle before preschool today in fact).  He laughs, plays, yells, pushes buttons, and lights up our world.

God knows what we need and where we shall go with this.  He will let us know.  Thanks for caring, praying, and emotionally being here for us.