Waiting once again...

Well, yesterday we got the MIBG results and it "appears"- their words, not ours- that there is a slight reduction in MIBG uptake.  About 20%.  In layman terms, that means that there are labout 20% less active cancer cells in the tumor.  This is GOOD!  Alejandro still has the same lesion as far as size goes, but it hasn't spread and it appears to be less active.  

So, where does that leave us?  Waiting once again.  The results and reports are being sent off to the Drs. in Greifswald, Germany for review and we hope to hear from them in the next few days.  One of the requisites for antibody treatment is achieving at least a partial response to initial relapse treatment.  We aren't sure if they will consider this enough of a partial response to begin antibody therapy, hence the wait.  

We are also waiting to see what they say at CHOP (children's hospital of philadelphia).  Thanks to the contributions we have received to date, we can now have a genetic test done that the Spanish health care system will not cover.  We will be looking to see if Alejandro could be a candidate to receive an ALK inhibitor they have developed at CHOP.  Not all of those affected by neuroblastoma have this gene expression, but those that do may benefit from this inhibitor.  Also, if Ale doesn't qualify for antibody therapy at this point, we hope that the Drs. at CHOP will help in the planning of our next treatment.  After our brief visit there in July, we are keeping them up to date with Alejandro's progress so there is still a possibility we may end up there sometime in the future, especially if Germany doesn't work out.

And Alejandro?  He's doing great.  Today we started another round (number three) of Irinotecan/Temozolamide which means 10 days of chemo in the day hospital (5 days on, 2 day break and 5 more days).  Exhausting.  But the thing about NB relapse is that the cancer can grow and spread so quickly that we can't discontinue current treatment while waiting for word on what we will do in the future- and except for the fact that he is a little bit more tired than usual you would never know he's doing chemo.  He so amazes me.  The things that little body has gone through and yet he plays and runs us ragged just like any other 4-year-old, or maybe even more!

 So, in closing, and excuse me if I'm rambling, these last few days have really taken their toll. We find ourselves waiting once again.  But at least we know that for the time being the tumor seems to be under control. And for that I am grateful.