On Sunday, November 29th, 2015 I understood and accepted that my daughter was dying. I lay in bed with her, cuddling her and talking to her. I stroked her face, touched her hair, held her hand. I kissed her – her cheeks, her lips her ears, her chest, her hands..her feet.  I looked over her body, just as I had when she was a newborn. Amazed at how big she had gotten, how her body had changed, how her hands still had the softness of a very young child. She was beautiful and she was leaving me. How could this be happening? I was not ready for this.

Part 5

Sunday night was a long night of resting between the alarms I had set on my phone to administer various medications to Kate. Dr.Splinter had increased her pain medication and we were now using her subQ port on her little arm more regularly. The morphine infusion also ran at a steady rate through her PICC line. We had increased it in order to ensure her comfort. The nurse who was supporting us had drawn up several syringes of pain medication and arranged them on a tray in Kate’s room. I pushed aside the cute pictures and stuffies on her dresser to make way for the tray of carefully labelled syringes so that I could reach for them easily. I thought briefly about my fatigue and worried about mixing them up and making a medication mistake.

Even if my nursing role had not been necessary, or I had allowed someone else to do it for me, I still would not have slept. I had entered that state of sleep deprivation where sleep would not come easily, and I was scared that something would happen to Kate if I closed my eyes. I did not want her to die without my witnessing it. I laid my head as close as I could to her, my face pressing up against hers, and I listened to her throughout that night.

Monday, November 30th was a much quieter day. So many people wanted to help in any way they could. We thanked them, but asked them to stay away. When I got up in the morning, the house was quiet. I came down the stairs from Kate’s bedroom and saw our Christmas tree fully decorated and lit. My mom had spent the previous day, fluffing out our beautiful (artificial) tree. Someone had dragged up the heavy boxes of decorations from the basement, and she had carefully arranged each one on the tree. It was her contribution. To help keep our home running, to keep our space organized, to do something special for me.

I loved Christmas. I loved the time with family and friends, watching my children on Christmas morning, the wonder of Santa (I still believed), Christmas dinner, the snow, the smells, the coziness of it all. I looked at that tree and I couldn’t decide if I was happy to see it up or not. Kate would not live to see Christmas.

Dr. Splinter arrived early to check on Kate. He would be there several times over the next 14 hours. There wasn’t much to say or do. He checked Kate. We chatted. I think there was a conversation with Brian about football (were the Ottawa RedBlacks playing in the Grey Cup?). He was so natural with us. Tending to our dying child, entering our personal private space at a time of intense emotion, and looking after us and her. I tried to place how I felt, whatever it was, it was familiar and comfortable. I thought that was very important. We talked about Kate and then we talked about football, or his adult children, or renovations, and then he’d leave and head home, or to Rogers House, or CHEO with a promise to be back “soon” and to “call him if there was anything”.

Brian’s sister Nancy, her husband Lloyd and daughter Megan spent a lot of time at our house that morning. Megan had held vigil with Kate much of Sunday. Megan (and Nancy) had been in Montreal to support us during Kate’s bone marrow transplant. She was an amazing grown up cousin, and she was beautiful with her little cousin. I love her so much for that.

My dad and my mom also spent time with their grand daughter. My parents have so much love for their family. They did everything in their power to support us and had moved to Ottawa to be with us during Kate’s bone marrow transplant. My dad, who NEVER wanted to see Kate in hospital and feared seeing her in pain, had stepped up to travel back and forth to Montreal to take shifts with Brian and I to stay with Kate. Kate loved her ‘Grandy’ as we all called him. He played with her, teased her, cuddled her, and sang ballads of ‘Soft Kitty’ to her (yes, Big Bang Theory Sheldon ‘Soft Kitty’). My mom found the stamina of hospital living tough, so she made sure our home in Ottawa was ready for our return – totally sanitized and ready for a child who required strict infection control. She shopped for Kate. Birthdays were a big deal for Kate, and she couldn’t see why Kate should not have a “Happy Day” a few times that fall. She and my dad would show up in Montreal with gift bags of toys, clothes, and crafts to cheer Kate’s day. My parents were incredible, but I found I had to shut down my emotions and avoid connecting with them about what was happening. It was too painful. I couldn’t handle their grief. Even to this day, as I write this, we haven’t been able to have that moment together.

I can’t remember much about Brian over those days. We were two parents caring for our child. We did what we had to do, when we had to do it. It was a pattern we had fallen into over the past 8 years of our life with Kate. The pattern had turned into a deep groove over the years, and we intuitively knew when one of us needed a break and seamlessly took over. I was the point person, the care coordinator, the spokesperson, the organizer, and Brian supported us all. I carried the weight of Kate’s care in Montreal until I broke down from exhaustion in May 2015. Brian stepped in, and he was amazing. The role of hospital parent is not an easy one. He advocated for her, followed the strict regimen she required, and cared for Kate in that very difficult time. That routine and those roles followed us home, and over the last few days of Kate’s life, Brian and I just found a natural rhythm of caregiving and vigilance for our daughter, and our son. We kept our deep and painful grief separate. I don’t remember crying together or holding one another. I remember feeling like I might break. I watched the pain in his face and I almost felt numb. He loved Kate so much. He was an amazing dad. And she loved him so much, “Papa” she would say “Brian, come”. How could this happen to him? Would he survive it, I wondered. Would we survive it.

I try to remember now what we specifically said to Jack and how we might have tried to prepare him for what was happening. I don’t think we did.
He was always at the house, he may have left for a hockey practise. He wasn’t going to school, but we tried to keep to some sort of routine. I am sure Megan or my mom or dad took him somewhere for some errand during the day. It really is a blur.

I always relied on Jack to just adjust to every situation. He was my helper and he had grown up fast and with more responsibility than most children as he helped us support his sister. There was a constant unpredictability to our life because of Kate’s frequent illnesses, but her bone marrow transplant had taken that to a completely different level. We tried to bring him to Montreal as much as we could, and involve him always in what was happening, but his life was in Ottawa and he spent most of those months with my parents or friends. He had suffered during that time, but I am not sure even now how I could have done things any differently. He was very accustomed to our family being together and the separation was extremely difficult for him.
Jack kept up his nursing vigilance of Kate, checking her heart rate and oxygen saturation with her portable monitor. Sometimes he would check his own for comparison. I let him help me with her medications. He was not scared, and he was very serious. My heart hurt as I watched him create little rituals with his sister. He was in and out of her room constantly, holding her hand, talking to her, and sitting on her bed. I grieved the time they had been separated. I wondered how that could have been different.

As the day progressed, Dr. Splinter was clear with us that Kate was declining quickly. There was no coming back from this, and she would likely die that day.

Brian and I decided to arrange a few very intimate visits of people who had been close to Kate. Because of Kate’s isolation, she had not had many visits or time with friends in the past 9 months. For a child as social and loving as Kate to have that kind of separation had been very hard on the people who loved her and knew her so well.

I am so grateful that we asked these special friends to visit Kate and spend time with her. We greeted them, led them upstairs, helped ease them into the shock of Kate’s appearance, and then we left them to have their time with her – shutting the door quietly. I know Kate knew they were there. I know she carries their words and their love with her even now. How special those visits were.

In the evening of Monday, November 30th, 2015 the last of our invited guests arrived. Dr. Major and Dr. Chakraborty came to say goodbye. Dr. Splinter was there as well. They each held her hand, and spoke to her. There were so many of us gathered in her room, Sunita and Stephanie were also there. I talked to Kate, and to those present in the room at the same time. There was stream of thought running through my head and I just let the words come up. I’m not sure how much sense I made. Kate’s breathing changed. We made a decision to remove her oxygen. Her breathing changed again. Dr. Splinter leaned down close to my face and said, “She’s dying now”. I nodded and the tears spilled down my face. Brian groaned. I heard the sounds of others, maybe chocked back tears? I didn’t look away from Kate to find out.

And then her breathing settled. It was 9 p.m.

Dr. Splinter told us he would go and we should call him once she had passed. He had increased her morphine. I think she was maxed out.

Dr. Chakraborty also left. We hugged as friends. I’m not sure what we said to one another. There really wasn’t much to say.

Dr. Major sat in the living room with Sunita and Stephanie, but after some time she also left. She knew we were well supported and she also knew this was a most intimate time for us.

Brian, Jack and I surrounded Kate on her bed. Jack shut her door – he wanted our privacy. We talked to her, and sang to her. Jack found funny videos on his phone of Kate giggling and playing. We watched them together and said to her, “remember when Kate-O”. Her breathing changed to become less frequent, and more shallow. We played “Fight Song”.

I can’t share the last moments beyond this. They are intensely personal. They are full of intense love and pain. I watched my daughter die. I watched my son shatter and lose part of himself. I watched my husband cradle him in his arms. The shattered pieces of our lives floated around me in slow motion. The most beautiful child had left this world and it was not ok. The universe shook and something shifted inside me forever. It was 10 p.m. November 30th, 2015

We called Dr. Splinter. He came and saw Kate. I asked if I could stay with her until morning and he said yes. He hugged us and told us he was sorry, and then left.

Stephanie and Sunita came in. They had asked our nurse to leave. I wanted to change Kate and to get the goddamn PICC line and subQ access out of her arm. I wanted her free of all of that. I pulled away the tape holding things in place and took everything off of her and out of her. I wanted all of medicine away from her. I wanted her to be free of it all. I had not seen her body without tubes sticking out of it for months.

Stephanie and I cleaned her and changed her. I debated putting clean pyjamas on her as she was still naked. I thought it would bother her, so I didn’t. She hated being fussed with. She seemed fine in her diaper and socks.
Brian arranged Kate in my arms. I had not held her. I lay in her bed cradling her. She was so big. I could not let her go. I thought to myself what an incredible gift that Brian was letting me hold her, giving ME the time with her, this absolute precious time. I couldn’t say the words out loud, but I thanked him.

Jack came in. I was worried he’d be scared to see her. He sat with us and laid our hands in a perfect pyramid, one atop the other. “She’ll always be with us mom”, he said.

He asked if he could cut a lock of her hair. I hadn’t thought about that. Her new hair was so foreign to me. I told him yes. He also started gathering things from her room, something he would do over the next couple of days. Pictures, books, a bathing suit, her cochlear implants. It was if he needed pieces of her to be with him always.

Brian came back later to check on us. I told him I wanted to stay with her. He helped us get arranged in her bed. I took that time to talk to her, squeeze her, hug her, stroke her face, kiss her lips. I buried my head in her soft crease of her neck and I smelled her. Inhaling her scent deeply. I was scared I would forget what she felt like, and how she smelled.

I slept that night, face to face with Kate. In the morning there was the most incredible pink and purple sunrise.