Chase’s second Hickman – Fall 2012
“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.
Changing the dressing on a Hickman – Winter 2013
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.
What happens when the pressure cap falls off a central line…
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.
A cracked line…
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.
In pre-op for another port surgery with Nurse Jen
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.
What it looks like when the port needle slips and the fluid infuses into the skin around the chest…
He has equally fought it and protected it, and tomorrow, Friday, June 13, 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.
We so appreciate your prayer as Chase undergoes this surgery and as we close this chapter. An oddly bittersweet… moment by moment.
“Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9 [Chase’s favorite verse to say -often again and again- before he goes into surgery]
A moment of rest after a port removal and a PICC placement – lines all over his body