I've been meaning to write for so many days now, but by the time I actually have a moment (when I'm in bed after getting the kids to sleep) I end up feeling so utterly overwhelmed by the day's events- large and small- that I'm too drained to actually get into words everything that's been going on.

And what's been going on?  On Monday the oncologists had their weekly meeting with the radiology dept. and they reviewed Alejandro's MRI from last Thursday together with the surgeons.  This included the trauma surgeon who I spoke about in my last post.  The one who is on paternity leave.  He went in just to review Alejandro's MRI.  I was so completely stunned that someone would actually do this that when I received the news on Tuesday morning regarding their findings I could barely let the poor oncologist speak.  I just kept telling him to please, please thank the surgeon for us.  On Wednesday I spoke to our main oncologist so she could explain everything all over again.

And what did they find?  The trauma surgeon feels confident that he will be able to resect the tumor.  They were able to get a good view of how involved the sciatic nerve roots are, and the good news is that they are not encased in the tumor, which is what they weren't able to determine from the other MRI's we've had done.  What I wasn't too happy about hearing is that they were able to determine that the tumor is exactly the same size it was after the partial resection in March.  All the chemo and radiation that Alejandro's gone through in the past months have not affected its size.  Ok.  It hasn't grown or spread, but that it hasn't shrunk or right out dissappeared is scary to hear.  I haven't been able to bring myself to ask the question, but I fear that Ale has become immune to chemo.  On the bright side however, the surgeon thinks that there will be no long-term side effects from the operation.  Maybe some weakness in Ale's left leg or some manageable pain for the first few days post-op, but nothing else.  So, last Monday, right after their meeting, they went ahead and scheduled the surgery.  November 2nd.  We finished this round of chemo today so now we have to hope Ale's blood counts don't drop too much, or they won't be able to operate.  And this is kind of like a once in a life-time deal because not only did the trauma surgeon go in on Monday, but he commited to doing the surgery on the 2nd as well.  After his paternity leave ends, he has to travel and even so, he has made this commitment to Alejandro. 

And I'd like to take a moment to explain exactly why this surgery thing is such a big deal for us and why reaching a decision has been so hard.  Neuroblastoma is systemic.  That is what makes it so lethal and why, in advanced, high-risk stages there is such a high rate of relapse.  When children complete front-line treatment they are considered NED (no evidence of disease).  This means that as far as they can tell with imaging and available microscopic testing, there is no evidence of disease.  But there is still no way to fully measure minimal residual disease (MRD) so one of our largest fears is always any minimal residual disease that could be lurking out of sight ready to cause relapse at any time.  This is why antibody therapy has been such a big breakthrough.  The idea is that if the body can be taught to identify the NB cells as foreign and therefore attack them, there is less chance of relapse.  When used in front-line treatment they have acheived a 20% reduction in relapse.  With Neuroblastoma this is a VERY big deal.  So, back to the surgery.  Knowing all of this is the reason it was so hard to make a decision regarding this operation.  If we knew that having the surgery would fully cure Alejandro, we never would have doubted.  What is a limp compared to the possibility of living a full cancer-free life.  Especially if Ale is only 4.  

But the fact of the matter is that with Neuroblastoma relapse, this is no longer a reality.  They can remove the tumor today and it may never come back, or it could return in a matter of weeks, months or years in another location and probably in more than one, as is usually the case.  And this is where the dilema arose.  Could we allow a possibly mutilating surgery knowing that the cancer could return at any moment?  It was literally making us crazy having to make this decision.  Then, last week, I was finally able to speak with our main oncologist and get her opinion from a strictly oncological point of view.  She agreed that any surgery that would leave Alejandro with any kind of permanant dammage to his leg or severe chronic pain- in her words "anything that would impaire his ability to run and jump as he does now"- was not acceptable, given the nature of his cancer.  Being free of the tumor obviously would put him in the best possible situation for receiving antibody therapy, but if it would cost him his leg, it wouldn't be worth it in the greater scheme of things.  This was actually calming for me at that moment because I felt we were working with medical, and not just emotional, criteria.  And then we received the news that the tumor can be resected without causing major, permanant dammage.  And the date was set. Talk about emotional rollercosters.  

And, since the surgery is scheduled for the 2nd of November, and we had been accepted at Greifswald for the 1st, we had to request a new date.  Just this Friday we received their reply and, if there are no further delays and surgery goes well- it will, it has to!- we will be going to Greifswald on November 28.  It is all so overwhelming.  We still don't know if we will receive funding or will have to pay ourselves and probably won't know until very close to the 28th.  But the fact that things are in motion again feels good.  And scary too.  So, as they say, one day at a time.  Focus on today.  On the little things.  And, one step at a time, we'll get there. 

I realize this is probably the longest, most rambling and most boring of my posts, but I really needed to get it out. So, thanks for listening and bearing with me.