Rounds start at 8am every Morning. You get the choice of particiapting, which basically means standing at your doorway and listening and observing as the entire medical wing staff gathers and discusses your child and their diagnosis. The list things about her very matter of fact-ly. Female, 6 1/2 months, heathy until sudden onset rotatory nystagmus, hypothalamic optic glioma diagnosed after extensive testing and MRI scans 3 days ago. Was it really only 3 days? Could my daughter really be summed up just like that? What about her smile and her bright blue eyes? You forgot to mention that she recently learned to sit up all by herself! These things were not important, not to them, not yet anyway. Evie was just another patient in the wing, another chart, and another test. But as her parent, I refuse to accept that. She is so much more than what they see.
After rounds, we were left alone for a little while. Eventually we met with the Head of the Neuro-Oncology unit, Dr. Eric Bouffet. He brought along Kirstin, who we would learn was "Our nurse", and Deb, our assigned Social Worker. Dr. Bouffet further explained Evelyn's diagnosis, and was able to do so in a way that sounded less medical, more practical. He explained Evie was going to receive chemotherapy, why that was the best option and what the goal was. He explained that she would need a surgery to insert a port to facilitate the process of chemotherapy and that the surgery would happen as soon as possible. He explained that once her port was inserted, Evie would begin Chemotherapy treatments, and we would at that point be discharged and considered Out-Patients. We would come to the hospital weekly to receive treatments, but would then be able to leave and return to our "normal day to day lives". My initial thought was, How Strange. Something so serious and we were being trusted to leave, coming back only for medicine? Wow. A part of me wanted for them to just fix the problem while we were there, however long it took, and then send us home when it was all over with. I was starting to realize that this problem had no quick fix. We were clearly dealing with something bigger, a long and winding road ahead of us.
Deb, the Social Worker, gave us a binder: The cover said, "b.r.a.i.n.child", standing for Brain tumour Research and Assistance Information Network. It was divided into sections, and included information, resources and sheets to fill in. Though some might have found this overwhelming, I felt relieved. It was like work: instead of a Show Binder, I had a Brain Tumour Binder. I had room for all her appointments, all her Contacts, and Charts to fill in information like height/weight and Blood Counts. Though I didnt know much about any of that just yet, I knew that the Binder would be a comfort to me. Busy work.
Evie's port was inserted the morning of November 3rd, and she received her first does of Chemo that afternoon. Upon prepping her for surgery, they allowed us to stay with her right up until they started. A surgeon and anesthesiologist explained how the port works and the process of the surgery, all while children's programming was on the screens scattered across the room. Port Insertion was a very common surgery at this hospital, it seemed like Evie was just one of many children receiving a port that day. Once they were ready, they asked if I would prefer to hand over my daughter or walk her in. Stupid question. I cant imagine "handing her over" to anyone, for anything. When given the choice, I will be there, and if I could have been in the room, I likely would have been. That being said, the walk down the hall and into the sterile room was much harder than I imagined. I suited up in the "parent coveralls" and picked up my daughter, dressed in her Hospital issue baby size gown. She has no idea what is happening. I carried her into the operating room, laying my baby down on the operating table. It was all very overwhelming. As she lay there, the anesthesiologist put her to sleep, and I turned and walked away, tears streaming down my face. By the time I reached Paul in the waiting room I was silently sobbing.
We were instructed on where to wait, and approximately how long it would be. The few hours felt much like the saying about a watched pot never boiling. Time couldnt pass fast enough. We got breakfast, and magazines, but we sat there like zombies, not reading or eating. I jumped to my feet the minute her surgeon came in the room and told me she was awake in Recovery. Everything had gone well, like they imagined. Routine surgery. Maybe for them. An hour later Evie was cleared from Recovery and we were taken back to her room. She got her chemo later that afternoon. I couldnt help but think what a long day it had been for her, and for us.
On November 4th we were discharged from SickKids. I distinctly remember feeling like we were different people from the ones who had checked in only days before. Everything seemed the same outside, but it was all terribly different as well. It seemed so unimaginable that after being given such devastating news, we were being sent home, with a binder and a treatment plan. That was it. We're going to do this, and fingers crossed, it's going to work. Only time will tell I suppose.
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