To acknowledge the one year anniversary of Eleanor's diagnosis, I decided to chronicle the events leading up to the moment our world changed forever. It was incredibly therapeutic to reflect this way.
June 8, 2011:
It began as any normal day; I was tired and sad. My unfinished PPD quiz poked out of Eleanor's diaper bag as I attached it to the stroller. The public health nurses had been so nice about me refusing to take it. I knew it would be skewed because over the past three weeks, I had not slept. At all. I thought about this as I made my way to our baby group and I tried not to cry. But I'm so tired... I squared my shoulders and told myself not to complain today. I had been doing a lot of complaining at this baby group and today was going to be different.
Little did I know how different it was going to be.
When my turn came to speak, I asked a question about sitting up, and why my baby isn't there yet. Some answers were thrown about, but I didn't catch them. I was watching the baby next to us hold her bottle while her mum changed her. I watched how her curious and bright blue eyes were taking in her surroundings. I watched her happily play with a toy when her bottle was done. I switched my gaze back to the mess that was Eleanor. She had tolerated a few minutes on her tummy and was back to nursing. Again. I stroked her greasy head and examined her pock-marked face. The acne seemed to be less, but there was new hair on her chin, and her sideburns were on their way to great it. Her eyes were so flat and sad, peering out of her swollen face.
At the end of the hour, Eva came over to see about Eleanor sitting up. She first tried sitting her on the floor, which ended horribly. Eleanor was already in a foul mood as she had been awake for more than an hour. She then tried sitting her on her knee which resulted in the same screeching. Eva didn't mince her words. She told me point-blank that my child was not okay. It was such a poignant moment and everything else came sharply into focus.
I immediately phoned the pediatrician to bump up her appointment. I struggled with the right words to the MOA. I wanted to have an earlier appointment, I couldn't wait another month. She put me in hold and came back and asked for a more detailed description of her symptoms. I blundered through them: fat neck, body odour, sad eyes. She put me on hold and when she came back, she had bumped up the appointment by two weeks. I felt satisfied. I called Kris to tell him what Eva thought and the action I had taken. Kris was not satisfied. He questioned if we should go to emergency. No, no. She's not that bad, but I'll call her GP. Maybe he can get her seen sooner by the pediatrician.
I had been walking the same city block while these conversations took place, stopping only to buy a giant chocolate chip cookie from Bubby's. By the time I got off the phone with her doctor's MOA, who graciously fit us in during his lunch, Kris had left work and found us. I had regained my composure but when I saw him, I cried like a baby. His first instruction was to put the cookie down; his second was to walk. So I did. We walked home and talked about what tomorrow would bring.
June 9, 2011:
It began as the day before. I was tired and sad. My sister was coming over with Bea to help out, which was sweet. My brother (her husband) was working in Vancouver and my parents were in Ireland so we only had each other to rely on. She offered to take the baby and the dog to the park so I could rest. After they left, I lay down for ten minutes but I was too keyed up to sleep. I tided the house instead. I didn't know it would be the last time I would see it in over two months, but something told me to get it sorted. I heeded my mother-in-law's advice and made a list of all of Eleanor's symptoms and organised them in chronological order. When Trudi and Bea returned, I packed the baby up and went to the doctor.
I didn't have to wait too long, which was a pleasant surprise. I was awkward. I had nothing to say except what was on my list. I rambled off what had changed three months ago, three weeks ago and 3 days ago. I remember the look on Frank's face so clearly. He was so pensive and thoughtful and concerned. When I finished, he excused himself to call the pediatrician-on-call at the hospital. His MOA came and chatted with me while we waited. We were chatting about how strange it is to meet people from small town Saskatchewan thousands of miles away and years later. My tongue had loosened itself from two days of awkward interaction and suddenly I could converse normally, at least for a few minutes.
Frank returned and instructed me to go to the hospital. Forget your pediatrician appointment; there is one waiting for you now. Go home, pack up your things. Expect to be away a long time. I tentatively asked how long that would be, immediately worrying about my dog. He couldn't answer, but gave me a list of possibly diagnosises that he could fathom. They were all adrenal issues with long names.
I thanked him and his MOA and again got on the phone. I called Kris to discuss the latest turn of events. He instructed me to go straight to the hospital and he would sort out the rest. I felt calm and cool - no tears, no giant cookie today. Everything was moving as it should be, so I drove out to the hospital.
I arrived around 2pm and put Eleanor in the carrier and wandered in circles around the ER waiting room. I met another family with a young baby. She had a fever and was throwing up a lot. Her mum said that her "mummy instinct" had kicked in, and that she knew the best place for her was the hospital. She asked me why we were there and I became awkward again. "She has a fat neck?!?" I lamely responded. I seriously considered leaving. Eleanor had never had a fever; I know because I checked obsessively. Why were we there? What was wrong with her?
When we were finally seen by the ER staff, she was subjected to a whole bunch of blood work tests. They did this by pricking her heel and "milking" her ankle. It took three attempts to get it right, and to this day I'm not sure if they got all they needed. The pediatrician came to see us and she was amazing. The first thing she asked me was "Is your mother's name Caroline?" Turns out her brother used to babysit me and my brothers in small town Saskatchewan a million years ago! The little things that link us all together... She listed all the procedures that Eleanor needed and told us she was talking to Children's in Vancouver. In fact, I could hear her talking to Children's because she kept calling right outside our room. Kris had arrived with Trudi and were fully loaded with clothes and food. Kristy (the pediatrician) instructed us that we were to stay overnight and we would be moved up to the pedatric ward.
Upon arrival on the 4th floor, we learned that Eleanor had to have a 24hour urine sample/analysis and she had to have a catheter put in. The nurse saw the horror in my face and said I could stay or go. I held her hand and asked her if I would be a bad person if I left for the insertion. She squeezed my hand and told me no, just come back and be "the good guy". It was at this point that my exhaustion kicked in. I had been going all day and now it was nearly 10:30pm. I paced the halls of the dimly lit ward and waited for the nurses. When it was over, I gingerly held Eleanor while she nursed, careful to avoid the tube taped to her leg. She went to sleep with little fuss and I crawled onto the armchair pullout and went to sleep.
June 10, 2011:
After a relatively sleepless night, we were shuttled down to radiology for an abdominal ultrasound. The tech called in the doctor who flatly confirmed that there was a mass in her tummy. That was all either of them said and we were sent back to our room. Trudi brought Kris out with Bea in tow. We had breakfast and said goodbye to the pediatrician who admitted us. She informed us that we would likely be going over to Vancouver, but they were still working out the details. She stressed that it was more to do with endocrine than anything else and they had more resources at Children's for that sort of thing. We drank our coffees and relaxed a little bit. The sun was shining and everything seemed a little less scary in the bright light of day.
We didn't get to relax for long, however, and soon our room was humming with activity. A social worker came in with all this paperwork to get us assured loading on the ferry. She informed me that they would be waiting for our car. I struggled to comprehend what was happening. We were going to Vancouver now? What about her 24hr urine analysis? Why the rush? The social worker handled my quizzing like a pro and sent for a doctor. A resident soon came in to speak with us. He told us that there was a bed waiting for Eleanor on the other side and they would look after her. They would repeat the catheter once we got there. We pressed him for more info, but he was extremely tight-lipped. Friendly, professional, but he wasn't going to give us an inch. So we packed up and made a dash for the 1pm ferry.
We roared across town to catch the ferry, and sure enough they knew we were coming. Kris and I stood in the sunshine and contemplated what we knew. She had a mass in her belly. She had a textbook case of Cushing's Syndrome. Hormones were an issue. Endocrine would help us. I figured it was some kind of ovarian cyst and it wasn't a big deal because they didn't send us by helicopter. Only really sick kids with life-threatening conditions get flown over and that wasn't the case for us. Cancer never once entered our conversation, and never even crossed my mind. The closest I got was saying that the worst thing that could happen (in my opinion) would be some sort of chemo-like treatment that goes on forever. I just wanted them to remove the mass and she would get better. End of story.
I used this time to get in touch with everyone who needed to know. My parents were overseas and I didn't want them to worry unnecessarily because they had heard something through Facebook. I had spoken to my mum briefly they morning and tried to reason with her. She wouldn't listen and had already booked a flight home the next day. I called my brothers and texted two girlfriends who work at BC Women's Hospital which is attached to BCCH. I figured I might as well try and see them while I was in the area! I received a phone call from the public health nurse who wanted to know the result of my post-partum depression quiz. It was so jarring. Was that only a week ago? It felt so much longer.
We arrived in the ER around 3:30. We rocked up to the desk and said what we were repeatedly told: there is a bed waiting for our baby. The lady (nurse?) looked at us like we were nuts. She told us to wait. After about twenty minutes we were shown to room 6, where we continued to wait. At five minutes to five, a firecracker with a long brown ponytail, a thick accent and a limp yelled at us, "what are you doing here?!?! Everyone is waiting!!" and took off down the hall, indicating for us to follow.
She led us in to a dark room for another ultrasound. She then raced off to find "the others". The next sequence of events all seemed to happen in slow motion. When the ultrasound was over, the room filled with doctors. Many of them informed us that they were oncology fellows. Oncology... that means... Oh Shit. I stood holding my baby, my husband on one side and on the other side, seemingly out of nowhere, was Jen. I remember her calmness, taking notes and asking appropriate questions. She stared straight ahead. I stared at the wall. I waited for the ground to swallow me up, the world to crumble. They told us it was cancer and it was serious. Her heart is in rough shape. The floor stayed beneath me. The walls were still standing. We went back into the light, back to the emergency room to await further instruction.
We met our oncologist (who introduced himself as "the tumour doctor") and he gave us the worst news. There was very little doubt in his mind that he was wrong; he saw the thrombus crawling up her vena cava which almost always means it is cancer. He told us he thought it was adrenal cancer and that from what he could tell, it was very advanced. The survival rate was less than 20%. And out he went. He had to consult endocrine and cardiology. No one knew who should have primary care over her. Her heart was very concerning.
My brothers arrived at the ER and were briefed by the fabulous and wonderful Jen. This was a role she would play over the following week - counsellor, body guard and all-round ROCK. By the time my brothers got in to see us, they were a hot mess. A quarter ton of Barry brothers reduced to red-eyed, disheveled, emotional wrecks. Granted, they had just come from a Stanley Cup final, but it was still shocking to see. I couldn't help but wonder how much worse I looked.
When Dr. Schultz returned, I was laying down, trying to nurse the baby to sleep as it was nearly 11pm. He gave us the game plan for the night; Eleanor would go to the PICU. They had one-to-one nursing care and she would be well looked after. She would have her central line inserted in the morning and maybe a biopsy and CT and MRI scans while she under for the surgery. He explained this all at great length and then indicated to the tall, willowy figure that had been standing at the bed the whole time. "This is Krystal, our oncology resident. She will be looking after you." He had barely finished when I said something along the lines of "what the fuck?!?" or something else repugnant. Krystal and I had played field hockey together all throughout high school. She is one of those people who is so easy to like because she is practically perfect. She was captain of all the teams and a school prefect. She played varsity basketball and oh look, now she's a pediatrician. Being practically perfect makes it easy to resent you, too! She expressed her sadness of meeting again like this. She said she was so sorry that I had to go through this. I replied "well, it looks like you're going to go through it, too!" As the words fell out of my mouth, I immediately regretted them. What the hell did that even mean? I will probably never see her again and that was the dumbest thing I could have said to perfect Krystal. I was relieved when they shipped us off to intensive care so I couldn't say any more stupid things.
Well, it turned out to be exactly what happened. Krystal was our attending all summer and we became very close. She, like Jen, became my pillars of strength that I could always call on when I couldn't take it anymore. Even though June 10, 2011 was the single worst day in my life, there were incredible moments of joy and love and friendship. The reason this blog is called Fighting The Dragons is because of a silly sketch that my brother Andrew kept reenacting while we waited in room 6. He had us all in stitches, which was crazy because five minutes prior we were all bawling our eyes out. As we learned about how many more things Eleanor had to battle, the joke became the heartbeat behind our mission. I like that. A little humour is necessary.
Good god, this is long. And I don't know how to end it. But I've been writing this for three days and I now feel like I can leave June 10, 2011 and June 10, 2012 behind. We'll just keep swinging the sword, keep laughing and keep our friends and family close.
Thanks for reading.
