I left you off in my last post letting you know of Trey’s treatment options in Philly. At that point Rachel and I had only briefly talked about it more than just the simple facts of it. Here’s the bottom line.
We just don’t like the MIBG therapy option. Emotionally, it would be very damaging and confusing to Trey, let alone scarier than we could imagine. He would be alone in a room that is basically a concrete bunker for 36 or so hours straight. Radiation would be pulsing through is system waging war on all of the tiny specks and small growths of cancer throughout his body. It does very little if anything with the larger growths. Secondly, while it would do a good job (most likely) against the small outbursts and calcifications of tumor(s) and tumor growth, the physical and (as earlier mentioned) emotional costs would be too great. Also, if/when these smaller outbursts/growths/expansions whatever you call them begin to cause him to be “symptomatic” we have been told that we can do very specific radiation…in Pittsburgh, to help ease the pain.
The second option entails him being part of an experimental study/therapy. We don’t know if it would work, we have no idea what the side effects would be. We really don’t want, nor plan to, do any treatment that takes him away from home for any extended period of time unless it is potentially going to cure or save him. Why allow him to live longer if he is going to spend those days sad because he is not around his loved ones and the things he loves?
So why go to Philly at all then? Why not just skip it? Here’s why and where this applies to all of us. “No regrets.” That is a newer slogan/tagline for us. Already, there is “We Have Today.” I have often spoken of “building nets” for Joe and Bella to fall upon if/when it happens. “We all have stories“, “Everyone is facing something“, “Summer of Trey”, and even “Everyone is someone’s Trey” are all taglines/slogans we have focused upon in recent months. Now, it’s “No regrets.”
Here’s how it applies to this situation. If we don’t go to Philly and the day comes when he becomes symptomatic and even worse I don’t want to for one minute think, “We should have gone to Philly to hear what they had to say.” On the other hand, we are sure as shooting not going to put him in treatment that could be very hard on him, potentially irreparably harm him, and perhaps end up expediting his demise. We would definitely be thinking, “We shouldn’t have gone through with this.” To a degree we had a touch of that after his surgery went bad on that August night in 2011. Rachel’s exact words that night in regards to even having him undergo the surgery were, “What have we done?” No, we’re not going there again.
Thus, we want to live a life (for him and for ourselves and ours) of No Regrets. Someone asked us if they could help us out in a way that we could use it but don’t absolutely need it. We gladly accepted the help inasmuch that it would enable this person to know that they did what they could to be a part of what we were doing (and trying to do). We assisted that person in living with “No Regrets” without them even being aware of it.
Mind you, it’s not a risk everything at all costs approach. That could certainly leave you with many regrets. It’s making sure that when all is said and done you have done your best to make things the best they can be. No regrets. If it all ended right now (whatever “it” is to you) would you have any regrets? Don’t.