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It was a nice day for a mow…and a cry.  The other day we got the phone call from Trey’s Oncologist and got the results.  Here’s what Rachel posted.

*I talked to Dr. Shaw today. Trey’s bone marrow biopsy showed teeny tiny amounts of Neuroblastoma cells in his marrow, like one per slide. That’s better than a lot, not as good a zero cancer cells. Trey’s MIBG scan was VERY active, this is not great news at all. The Dr. said that this scan looks pretty similar to his last MIBG scan which was just about 2 years ago. Again, on one hand, it’s pretty amazing that Trey has been so strong for so long with all that’s going on inside him. On the other hand, it’s discouraging that nothing can shrink/eliminate the tumor(s). The Dr. thought it was odd that Trey’s urine counts are so great, though. He would have expected much higher numbers for the amount of activity present. So, that’s good, right???

 As for treatment options…most were taken off the table right away because of these results. A bone marrow transplant would be pointless, one study HAD an opening but that got taken, etc. So, we wait. Yep. Now you know what we know. We wait for a Phase One Study to have an opening. Trey is at the top of the list to get in any opening, so they are hoping to wait just a couple of weeks???? The team is also going to be checking other places (St. Judes, Sloan-Kettering, CHOP) for options….but, we would have to decide if it would be worth traveling, separating the family, aggressive treatment, etc. for non-curative results. The team doesn’t really hold out much hope for a cure, though they want to maintain his quality of life.*

Now, in a way this is a positive answer to prayer.  I posted last week what difficult decisions we were going to be facing.  Given the results, we do not have to make any decisions.  Then again there are no options, at this point, from which to choose.  Granted, it would be much better to hear the Doctor say, “The results are miraculous!”  Alas, he did not say that.  In fact, in most ways the news is bad.  Yes, God can choose to heal him.  He very well may.  He very well may not.  Given what is before us, the news is not good.  The cancer has spread to his marrow, albeit only a little.  The MIBG was described as “glowing” and “bright.”  There were new spots on his back near his spine.  The doctors were not alarmed.  Trey is not their child.

So, what does a parent do?  You mow.  Sadly, it felt really good to do something measurable with a positive outcome.  Also, it gave me time to think.  You see, on the one hand we are quite well.  Trey is not outwardly “symptomatic.”  Joe and Bella are doing well in their respective “I don’t get swallowed up in Trey” activities (Jiu Jitsu and dance).  Rachel and I are doing very well at feeling all that we need to and being intentional in mutually meeting each others needs.

On the other hand, we are beat up and tired.  Yes, we should go to bed earlier.  We talk about it a ton and never seem to do it.  It is hard to raise three kids regardless of our “situation.”  It is stressful to have a very non-traditional occupation(s) with such varied levels of income.  I’ve even wondered that when we cry together does it really count as comfort or is it just concurrent sadness?  Add in the fact that we have a child dealing with terminal cancer?  Yeah, we are beat up and tired.

So, I mowed.  During that thinking time it all just hit me.  It’s so hard.  I’m so tired.  So, I cried.  I mowed and cried.  Wondering if any of my neighbors were thinking, “he must really hate to mow” allowed me to stop and keep it from a complete sob but it was just an emotional release.  Then I remembered some words written to me recently by a man I consider to simply be a total bad@ss.  Mike Pietragallo (Rachel’s Crossfit trainer and our good friend) wrote, “We (notice the collective “we”) are never out of a fight.”  Now, I’m sure he meant it toward Trey’s physical condition but in that moment I took it right to MY heart and MY fight.

I am in charge.  I lead the way.  I am responsible for leading this family.  I am not in control of Trey’s physical condition but I am put in this position to love each of those and care for each of those that God has given to me.  I will not be taken out of this fight.  This is just another round.  I will go another round.  I have been trained for this through many trials and tribulations.  I have the God of all creation beside me, behind me, and leading the way.  I have the support of countless faithful people begging God to intercede on our behalf.  I receive the comfort of those God has put in my life to fight with me.

I will go another round.  I don’t know what round it is.  The apparent battle ahead is daunting.  The way I see it now is the “final” chapter of one fight is beginning.  Then, there will be some rest.  Then, the battle for Joe and Bella will resume.

So, I mowed.  I cried.  I rest.  Then, I continue to fight.


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