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So I got to take Trey to the hospital yesterday to talk with our Oncologist and for Trey’s regular Occupational Therapy visit.  Trey started the day quite slow and even a bit timid.  The ladies (errrrr, nurses) on the 9th floor were excitedly surprised to see us (him).  Trey began to warm up.  We got him accessed (getting a shot into his port) and did the blood draw (Trey helps and calls it his “hot milkshake”).  After a short bit he and I sat down for our talk with Dr. Shaw.

The goal of our time together was for him to find out what we were willing to do treatment wise and for me to get to ask any questions that I/we might have.  I told him that we, in know way, wanted to entertain any treatments that would ravage his body.  Further, if extending his life by 6 months meant taking him away for 6 months isn’t something we want to do either.  Lastly, I agreed that we would go “somewhere” once a month (or given short period of time) if he could spend the rest of the month at home.  Dr. Shaw got it, understood it, and said he would continue his search.

Then, it was my turn to ask the questions.

My first was, “Why IS Trey at the top of the list for any study?”  I assumed that it was because his condition (in their eyes) was so dire that he was moved to the top.  He explained that it was actually because Trey was so “healthy” that he would qualify for most any study and that any kid that would be up for these studies is in the same “dire” diagnosis.  Fair enough, I stand corrected.

My second question was the million dollar question.  “If we do nothing…how long are we looking at here?”  His response was somewhat predictable.  He said (paraphrased), “It depends on why it hasn’t grown a lot more over the past 18 months.  If it was the drug he was on then it could be less.  If the disease was just not growing very fast, it could be more.”  I countered with, “Well, you said over two years ago that he had one…maybe two years left.  That was over two years ago so…?”  He replied, “There are cases here in Pittsburgh where kids have gone up to 5 or 6 years with the disease at the stage that Trey’s is, but they were responsive to chemo.  They would go through chemo for 3 months and be fine for 9.  They would then do it again and again until the disease just took over.”  The disease within Trey did not respond to chemo like it did for these kids.  I asked, “Sooo…weeks?  Months?”  He said, “No, not weeks…months.  It should be months before he becomes…symptomatic.”

I shared this with a dear loved one on the phone.  I started the phone call by saying, so as not to alarm them, “Everything is fine.”  After I filled them in they were quiet for a moment and said, “…and you began this conversation by saying, ‘everything is fine’?”  What they heard very loudly was “months.”  I explained (after apologizing and wondering for a moment why did I start the conversation with “Everything is fine”) that this is yet another window into our world.  We have been at “months” for over two years now.  I felt bad, to a degree, that this person was left in far worse shape after our phone call than before.

Rachel and I talked last night about the phone conversation.  She agreed with me about having been at “months” for over two years and that it was simply more of that.  Scarier for sure without any treatment but not nearly enough to put him through hell and expedite his demise by weakening his body with treatment that are not even aimed at curing him.

I then reminded her of something I said the night of his horrific surgery where they couldn’t get the cancer out and he almost died on the table.  Shortly after we found out what had happened and when we were first alone Rachel asked me, “What did we do?  What does this mean?”  I replied, “Honey, that day that we have feared might be coming sooner than we had ever hoped…BUT it wasn’t THIS day.”  Well, it wasn’t THAT day.  It hasn’t been ANY day since then.  We’ve been given over 800 days since then.

So, everything is fine.  Much as we know that day is coming sooner than we would have ever liked, but it hasn’t been THIS day.  I will spend THIS day doing my best to love Trey, love Rachel, love Joe and Bella, love those God puts in my path, and loving HIM by doing so.  I laugh at the minutia.  I loathe the details.  I reject fear.

Everything IS fine…until it’s not.

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