Guest Post by Catherine Druery
In the first few days after my 3 and a half year old son Bear’s leukemia diagnosis, we met with a nurse from the IV access team. We had been told that a surgery to insert a port would be scheduled as soon as possible. I had a vague knowledge that central lines existed and the role they played in maintaining IV access, but I had no hands-on experience with one. She came in and showed me a small metallic purple triangular device, with a silicon centre, and a thin tube extending out of one side.
This device was to be implanted under the skin on the right side of the chest and the line attached to it would be threaded into a vein, close to the heart. When not needed it would just show up as a lump under his collarbone. When IV access was needed it was punctured with a butterfly pin (once aptly compared to a thumb tack) and a bandage placed overtop. The lines then ran from the port site out the bottom of his shirt to the IV pole. It was more comfortable than using veins in the hands and arms, which would tire and collapse with frequent use. It meant chemo would cause less local irritation as it was delivered into faster moving volumes of blood instead of small blood vessels. It was a simple device that struck me as absolutely brilliant at the time. Though I had no idea that it would become the singular focus of Bear’s anxiety, I still believe it is a game changing part of cancer care. He may grow to hate his port, but he was spared so much discomfort from peripheral IVs. At that point it had been less than a week and he was often tangled, unable to use his hand properly, as it was bandaged and taped to a board to avoid pulling or dislodgement. His surgery was scheduled for day 8 of his treatment.
Our first time accessing the port (that is placing the needle and using it) happened in clinic and I really have no memory of that event. It was unremarkable, smooth even. It likely took place in the room divided by curtains, which could accommodate a few children at a time. The process on that day was unfamiliar to us. Shirt off, swipe the area with the alcohol sponge and let dry. Sterile procedure gloves for the nurse, the field draped with a sterile cloth, Butterfly needle pressed into the chest, dressing taped up. A quick flush of saline through the line to make sure it was flowing well, and then the shirt back on. Bear had a healing gash just above the port bump, and some small nicks in neck where they would have guided and secured the tube into his vein.
We don’t know why it changed for Bear. There was no one traumatic event, perhaps just small trauma accumulated over time. By the time we were 6 weeks into treatment, port access became stressful. The anxiety and sweat would rise from us both, starting at home when we applied the numbing cream to the bump on his chest. It would ebb and flow as he was distracted by other things, but always came to a peak when it was his time in the chair with the nurse.
I would maintain a facade of calm, provided little discussion, performed the usual dance. He would cower, shrink in on himself, try to make himself physically disappear, then wail and make himself louder as if to frighten us off.
“ Why are you doing this to me, can’t you see that I am not comfortable?…I am so disappointed in you”. He shouted between wails.
His tiny toddler sized t-shirt would come off, peeled off his sweaty arms and over his head, him resisting every inch. I would physically restrain him in a hug. Hold his head still against my shoulder. Wrap my legs around his to keep them from kicking. Each nurse would try their tricks to come at it from a different angle; some of those tricks would temporarily help. But we learned that the best approach was direct and quick. You can’t expect to reason with a 4 year old. When I learned to communicate that to whomever was tasked with his access that day, it went more smoothly.
Once the dressing (bandage) was on and his shirt snuggly back on his torso, the smiles returned. Vitals and blood drawn for the day, then the wait for chemo and whatever else the day at the hospital would bring.
This stressful event played out dozens of times over the course of our 3 and a half years of treatment.
When we made it to the maintenance phase of treatment our team broached that with less frequent iv chemo we could consider the subject of his port being removed. I reflected on this but quickly decided that the devil we knew (port access) and its more comfortable set up far outweighed the devil we didn’t (more IV pokes and an IV line in his hand). If he despised a poke into the silicone dome in his chest, how would we deal with rolling veins and a dehydrated kid, or his hand being tethered to the iv pole? He still had many obstacles and treatments to overcome, as well as unexpected hospital stays and blood transfusions.
Zippaport came to be in the months right before Bear’s treatment was finished. I have wondered many times how this simple zippered shirt might have made things easier for him. A kid who wears only his underwear as often as humanly possible, he refused to be without his shirt when his port was accessed. He didn’t want to see or feel it. While I don’t think anything could have removed the anxiety he felt, I do think a Zippaport shirt would have given us a tool to improve his experience.
I absolutely hate the tears and fear that Bear experienced around his port, but I am grateful for it. Because he was upset by the port access ( and de-access, but to a lesser extent), he experienced great moments of stress that had a defined end point. Once his port was done he could move on with his day, unafraid of chemo, or physical exams, or impending nausea. The port gave a focus to his fears, so he didn’t focus on the any number of scary things that kids in cancer treatment face. When the day finally came for port removal surgery, you have never seen a kid ( now almost 7 years old) smile so broadly as he came out of anaesthesia. His port was gone, and it was a tangible sign that his cancer treatment was over.
