This day was to mark the 2nd dose of Evie's new chemo drug, Avastin. It is given via IV drip, every other week. This means that instead of quickly zipping through the clinic, we have to go through the longer process that we were first introduced to last fall when Evelyn was first diagnosed. We check in, play for a while, get called in to the "Blue Pod" for assessment, go back and play (and typically make a stop at Timmy's for tea #2 of the day, plus some "balls", aka TimBits, for Evie, then wait to be called into the IV room, then moved into the Day Hospital for the duration.
The day was going so smoothly - the IV drip was to be given over a 60 minute period this week, bumped up from 90 minutes on the first dose. It is standard practice with this drug, that vitals need to be checked every 15 minutes during the administration, which is usually a pain...what toddler wants to be poked and proded and bothered with every 15 minutes? This however, was the very first time Evie has managed to sit still and stay calm while having her vitals checked: blood pressure and pulse are always the worst...she hates the arm band and the finger thingy. I credit her nurse, Laurie, with this, she was very attentive, calming, and had some pretty awesome noise making animal toys attached to her ID necklace. When Evie was younger, by the time we made it into the Day Hospital for her IV, she was worn out, and would usually sleep in her stroller for the entire duration of her chemotherapy. This meant that I would relax, sit on the couch, eat my lunch, and watch some TV. Having a toddler is much different. She is now walking around, back and forth, and keeping up with her while pulling along an IV machine, well, it's not so easy. I typically sit with her on the hospital bed, play with toys and eat snacks. This is what we were doing yesterday, until she got a little restless, and wanted down. I'm not exactly sure what happened, but all of a sudden she was screaming and grabbing her chest, I grabbed her hand away and pulled back her shirt and saw that her needle was coming out of her port, blood trickling down her chest, tears streaming down her face. It was awful. I immediately paged the nurse, and when I told her what happened she quickly ran away and came back with four other nurses. I then had to hold Evie down as she cried, and struggled, and resisted, as they tried to re-navigate the needle back into her port. Once again, awful. I didnt realize the danger involved if chemo drugs are administered interstitially...it can make the skin swell/can cause rash or allergic reaction/can actually burn the skin...I didnt know. At the time, all I knew was my daughter was bright red, sweating, squirming, looking at me through tear filled eyes, likely wondering why I wasn't helping her, picking her up, stopping these nurses from "attacking" her.
So I ultimately became shaken after the fact. Everytime someone would come in the room to check on her afterwards I would ask them, "Is it dangerous?" Just about every time, I got a "No, but it could lead to _______ (fill in the blank with one of the previous mentioned complications). This just made me more and more anxious. I tried to call Paul, but didnt reallly want him to know how upset I was, so when he said he was a bit busy, I let it go . Not wanting to burden anyone else, or make a mountain of a mole - given the crisis had been averted - I rocked Evie back to sleep, and sat quietly for the next hour and a half, quiet with my thoughts, my worries, my fears, waiting to go home.
Yesterday reminded me of the seriousness of what we're doing. I think it's easy sometimes to, not forget, but maybe dismiss? Chemo is part of our routine, it's something we do, it has become habit. I know and understand the process, the expectations, in general the results. I go the the appointments, I do my part as best I can. I mother my baby. It's when something not planned, a deviation to my schedule of events, it brought me right back to last October, it brought back my fear, and my upset, and my anger. Anger is one emotion I have little use for - I spent a lot of time angry, could hold a grudge with the best of em, but it has never helped me. But for a brief while, last fall, I needed it. I think I needed to feel that initial anger, to realize that it wasn't going to help, that it was much better to get past it as quickly as I could and move forward.
As stressful as the day was, it could only last so long. By the time we left the hospital Evie had moved on and happily waved goodbye to the nurses. My nerves were eventually calmed, with a little help from a bottle of red wine, and the company of a good friend. But despite feeling better by bedtime, it is clear in my head that I had perhaps forgot, or chose to neglect for the sake of myself and my sanity, that my daughter has a brain tumour. Chemo is not just "a Friday activity" as we often joke it is, it is a treatment, the only treatment we have right now, to hopefully save and restore our daughter's health. It is serious business. It is her life, and she is mine. I hope I can remember this moving forward, and not have to be reminded by another horrific "incident".
