This morning, Chase’s friend, Benjamin will be in surgery to have his port removed after years of leukemia battle. As his mom and I sat over tea yesterday afternoon, we talked the reality of treatment ending and the symbolism of cutting out the last life-saving device. And somehow, it seems fitting this morning, as our hearts are with Benjamin in the operating room, to scroll back to June, 2014… These are the words I wrote when Chase’s last port was removed and they’re fresh again today in honor of a leukemia warrior on the operating table and his parents who will sit in the waiting room – waiting for their sweet boy and a new chapter too: the fight for life after the fight with cancer. So here’s to the final bridge between treatment and what comes after…
“The general protocol is that after six months of clear scans, we remove the port. …even for the ATRT kids. And as I look at Chase, I don’t see any reason to make an exception.”
We took a moment to absorb the words our attending doctor was speaking. Even with the concern of relapse and all that comes with an ATRT diagnosis, the port could and should be removed.
This small piece of foreign material currently embedded in Chase’s chest has somehow come to both symbolize and encapsulate the last two years. It was the first thing in and will be the last thing out. We’ve had it placed, and replaced…and re-replaced again…and again. We’ve fought to keep it, repair it, and protect it. We became trained and comfortable in the procedures to sterilize it and triage when there was a problem. It was a picture of the need for chemo, yes, but it also provided life-lines of blood, platelets, fluids, medicines, and even nourishment when he could not eat.
His access has at times been on both sides of his chest and in both arms as well. It’s been a double lumen Broviac Hickman, a PICC, and a port. It has inexplicably infected multiple times, been infiltrated by a deadly chemo, cracked and broken and once, even slipped out as he turned in his sleep.
Chase’s first and shortest Broviac was placed on August 16, 2012 when he was only 2 years old. He doesn’t remember a time in his life when he didn’t have either tubes coming out of his body or an access point for the tubes embedded under his skin. In it’s own way, it’s become part of his body and his identity, so when he was told that it was to be removed, he became very angry and questioned whether the doctors were going to remove his skin and bones as well – so much is this small device a part of him.
This constant access to his body was in some ways the craziest complication of his treatment months, yet a complete blessing too. But now it’s time for the last remnant of the chemo chapter that can be removed to be separated from his body. No more flushing it and locking it to keep it clean. No more crash kit with clamps, swabs, and gloves in a bag that goes everywhere Chase does. No more ER fever guidelines. When he goes in for MRIs or labs, he’ll require a peripheral IV…just like a “normal” child. A scary and wonderful thought.
He has equally fought it and protected it, and he’ll go into an operating one more time and they’ll open his chest and cut it out of the muscles into which it has been so carefully sewn.
And when they did indeed cut it out and away, he let out a long sigh, sat up in the bed in the middle of the recovery space, and whispered: “I’m free…”
So, farewell, to all the well-used, well-loved and hated ports today. We’ll miss you, but not really.
Moment by moment.
Is it strange to read about a port removal from 2014 to honor another port removal in 2019? …to read harsh and sad words surrounded by pictures of boys in the sun selling lemonade? The total incongruence and yet pain-fluidity is at the heart of the childhood cancer battle for many of us. We are irrevocably linked in our procedures and timelines and solidified in the joy of our strong moments as much as bonded in the sadness of our weak ones – no matter the year we start or end. Welcome to childhood cancer, dear ones. Thank you for getting on the roller coaster with us.