Saturday October 30, 2010
Someone from the "Transport" department escorted us and our belongings from our home in the ER to what would be our new home on the 8th Floor. We later learned the 8th Floor is dedicated mostly to Chemotherapy patients, though due to a lack of space, we were placed in the "Burn Unit" wing. Our room was the last door on the right at the very end of the hall. At 3am, we "settled" in, not quite knowing what had happened to us over the past few hours, or what was about to happen in the next few days. One of the nurses on night shift introduced herself to us, and after taking Evie's vitals, explained that we should try and rest, we would be seeing more doctors in the morning. I'm not really sure how, with all that was going through our minds, but it wasnt long before we were asleep....Paul on a blanket on the floor, and Evie and I on the parent bed in our room (despite the Hospital Sleep Safe rules against sleeping with babies under 2). This would be not only Evie's, but my first hospital stay as well.
It's strange how quickly you become used to the sounds and routines at a Hospital. Nurses come around every hour to check on you, take vitals, help any way they can, or as the case may be, point out that I am not allowed to cradle my baby in bed with me. They mean well, they are just doing their job - but I still didnt listen. I held onto Evie that night tighter than I ever had before. I was acutely aware of how precious she was, like holding her for the first time all over again.
Despite remembering that first day so well, the next few are somewhat of a blur. I know we met with many doctors; Neuro-Surgeons, Oncologists, Endocrinologists, Opthamologists...basically entire teams of doctors, residents, fellows...it was a lot to take in. As ridiculous as it sounds, we definitely used Grey's Anatomy as a background to figure out who the hell everyone was and how they ranked in the grand scheme of things. For the most part everyone was very nice, but there was a clear air of sensitivity when anyone came and talked to us...well aside from the Neuro-Surgeons - they were all business. We woke up that Saturday morning to a team of about 8 standing in our rooms, hovering over us. Before I could even sit up in my bed they had begun their process. They discussed Evelyn's diagnosis, her age, her presenting symptom, and her current condition. It was surreal. More talking at us than to us, they were in and out within 10 minutes. They would be back the next day to see us again. And as quick as they came, they were gone, we were alone, it was quiet.
Now wide awake, Paul and I looked at each other. We had been informed by our nurse that we were going to be seen by a few more doctors today. First, an Oncologist. He explained what exactly was going on with Evie. Her tumour was in her brain, and it's placement was putting pressure on both her Optic Nerve and her hypothalamus. The pressure is what was causing her nystagmus. There is concern about her hypothalamus, the gland responsible for all hormone development. Though it was hard to process all of the information he was giving us, we tried. Her tumour would likely be treated with Chemotherapy, though it was not cancerous. Her tumour is benign, slow growing. The cause is unknown. There is no link to prenatal care, or lack thereof. In fact, her tumour would not even have been the result of poor choices, nutrition, drinking or smoking during pregnancy (not that those were even a factor with my pregnancy). They are unable to tell when exactly the tumour developed; possibly in utero. Evie's tumour is rare. It is also rare in children as young as she is, usually presenting later in childhood. It wasnt until he finally said the words that I actually cried. "This is serious, but it is not going to kill her. Her tumour is not life threatening. Our biggest concern is your daughter's vision". It was such a sense of relief, I lost it. Later on that afternoon the Endocrinology team arrived, they introduced themselves, asked some preliminary questions, took some samples for testing and said they would be checking in again soon.
At that point Paul and I were long overdue with some phone calls home. Holding back tears, he called our parents and close friends. Probably some of the hardest phone calls we have ever made. Every phone call felt like we were breaking people's hearts. The words we had to speak, so devastating. So unimaginable. Not knowing very much, it was hard to listen and answer questions from others. Every question they had, we had as well....we all desperately lacked and wanted answers. I will never forget how hard that day was. I wouldnt say the shock was over, but it was the beginning of us having to deal with the reality of the situation.
The hospital granted us leave that night. Informing us that there was nothing they would be doing right away, a plan of action would be made early in the work week. There was no reason why we couldnt go home and sleep in our own beds tonight. Discharge papers in hand, we were happy to head home....to have something normal, to forget for a minute what we were about to get ourselves into. Home sweet home, it had never looked so good.
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