Holding you in the Light

Today was a big day.  Have I said that before?  Probably have.  After the purgatory of tests and results and waiting and Googling and missed phone calls and bad phone calls and data mining, after all that today we had appointments with surgeons and the oncologist and were determined to make a decision about the course of treatment so C could start fighting back.  No more delays.

The day started early for David and Lizanne, flying down from the Bay Area.  David's dog tags are starting to make it into the hands of friends and family (and apologies to those that have written asking for theirs - I'll send them out tomorrow).  We've been asking for pictures of the tags with their owners, or wherever, to show the range of C's support. David has starting that ball rolling, at the Southwest gate at the Oakland airport.



At City of Hope we met with the nurses in charge of the trial that we were leaning towards - consent forms were reviewed as we waited to get in with the surgeons to hear them out.



The main decision C faced was deciding between a course of treatment based on chemo and radiation, or whether to include surgery. It's a level of decision-making that makes any other pale, since the repercussions are massive and can't be undone.



We'd done all the homework we could do, and now we'd meet the people that would be there in the O.R. if C chose that route - using their skills to excise the microscopic bits from right between his eyes, a para-meningeal tumor - with just millimeters between things that must go and things that must stay.



As we waited for the doctors it was clear how much C's attitude had changed. It's a transformation. A sense of determination.

The surgeons came in, a neurosurgeon and an ENT surgeon, and we were immediately impressed with their patience and ability to communicate their belief that this tumor could be removed. Nothing is certain, and with rhabdomyosarcoma in this location that is taken to an extreme. And even if it is removed, this disease still requires extensive chemo and radiation. If we go that route it would be somewhat against the advice of Dr. M, someone we trust and respect.



The ENT surgeon checked C out, and left us to think. And in the end it's all a question of what gives the patient, our brother, the best chances. And as novices there is no way that we can really make a decision like that - it's impossible. But there he sits, and it's decision time - it becomes a combination of information, contemplation and gut reaction.



Dr. C joined us at this point, and we skipped past our long-distance difficulties. You see how these guys are just clinic guys, they do their thing face-to-face, and right or wrong (wrong...) some just don't do the personal part. His presentation of potentially dire statistics hits Charlie like a sledgehammer, and then C sucks it up and rallys.  But today Dr. C's style wasn't a primary concern.

So we talked through the options, and in the end the driving force was that C wants to start treatment. Now. Two weeks ago. And while the surgeons' confidence really inspired us, they would not be able to operate for maybe two weeks, and then it would be another couple weeks before the chemo could begin, and C's done waiting.

So the consensus was a plan that starts with chemo and then will possibly use surgery in a month or two after we see how much the chemo has kicked butt. Alternatively, he could go with radiation at that point, but that final decision can wait.  We really liked the surgeons, a lot, but we need action now. This way chemo starts tomorrow (Thursday) and that is music to our ears.

What an amazing place to find ourselves.  To be eager for these people to start poisoning C. It makes no sense, but that's where we are. Sitting here in Duarte, CA, passing all the families in the halls wracked with similar choices, accepting the new normal, looking forward to the day C's tests come up clean.  "Thinking Negative".

I think of a prayer Chandler passed on to me, his way focusing his healing in C's direction.  It's a Quaker prayer said when parting from one another, they say, "I'll be holding you in the Light."

Despite all that is happening, we are still grateful, proud, honored to be here, knowing there are so many out there holding C, holding all of us, in the Light.