Thursday, July 24th will mark the second year our family has had the pleasure of participating in Young Associates Board’s “Run For Gus” – a fundraising 5k run/1 mile walk – proceeds from which go directly to our very own Lurie Children’s Pediatric Brain Tumor Program.
This year, we were asked to share why we run (or walk):
Because he is my brother. I held Chase when he was born, I played with him every day and early one July morning, I was the one who found him having a seizure. Darcy, age 8
Because he was born when I was only 1 and I don’t remember a time when Chase wasn’t the brother by my side and now I know words like “cancer” and “brain tumor”. Because I helped hold the bucket while he vomited after chemo and held his hand at his side when they took blood. Aidan, age 5
Because I was 8 months old when my mom left me with my grandma and went to live days and nights at the hospital by Chase’s side to help him fight and I learned to walk while bringing him toys as he lay on the bed too weak to walk for himself. Karsten, age 2
Because he is my son and I’ve carried him into operating rooms and had to leave him. Bob, Chase’s dad
Because I gave birth to him and two years later sat in a room where they told us there was only a small percentage of survival. Ellie, Chase’s mom
Because I fought. And I survived. Chase, ATRT survivor, age 4
Because Chase is where he is today thanks to the efforts of the Pediatric Brain Tumor Program at Lurie Children’s.
Because Chase is our brother and our son. We run.
For more information on fundraising and Run for Gus, visit Bob’s page here.
He climbed onto his brother’s bike, said he could do it without help, and rode away down the sidewalk. Chase –once watched anxiously to see if he’d ever walk and talk after major brain surgery– rode a big kid bike today!
The determination of this child never ceases to amaze me.
On our way to Chase’s 18-month post-radiation appointment. 18 whole months since he last whispered “I’m so brave…” and we wondered if this treatment would work and if the cancer would ever clear from his spine.
As we drove, he stared out the car window into the cloudy morning and said: “Mom, one day, I’ll be as tall and strong as the trees.“
We had a precious morning with these people who were only meant to oversee his care, but became dear friends instead. Rejoicing in the life given…
It’s so beautiful how the small mercies are everywhere.
Chase had an incredibly early surgery time which allowed us to avoid traffic (as much as you ever can avoid traffic in Chicago…on a Friday…during construction season…)
Only the most important part of the day: picking the pre-op movie
The anesthesiologist on duty today has worked with Chase multiple times and knows his preferences well. In fact, this doctor was the same doctor who administered anesthesia on Chase’s final day of radiation (December 12, 2012) and he still remembered Chase and the party at the radiation center. This doctor always carries a mini iPad with him to distract children going into the OR which meant Chase was so busy playing “Fruit Niinja” that he barely noticed us as we parted. (This is what we want, right?)
In pre-op with our anesthesiologist and the mini iPad
The surgeon assigned to Chase was actually one of the few at Lurie who hasn’t placed a central line for Chase. Okay, maybe that’s a slight exaggeration, but when the doctor walked into the room and said “I see that several of my colleagues have worked with Chase…”, suffice to say Chase’s central line history preceded him. He told us that there can be complications to removing a port – like the tube being stuck in the muscle – but today, there were none.
Heading into surgery with the doctors
Chase’s oxygen saturation levels dropped slightly after surgery, but he remained stable (with a little help from the oxygen mask) and awoke well.
Getting a little fresh air in post-op
The peripheral IV (which has always been placed in his thin-skinned, often bruised arms) was placed in his foot – making it that much easier to remove and giving his arms a break.
Clean it and stitch it and mark it with…steri strips?
And when he sat up to leave in recovery, he placed a hand across his chest -as if to both protect and feel the change-, looked at Bob and me, and said: “I’m free!”
At last.
Goodbye, dear port. We’ll miss you, but not really…
“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
![The port itself [photo credit: Dr. Anthony Chin]](http://efamily.brevis.me/wp-content/uploads/2014/06/IMG_2906.jpg)
