Category / Kate’s Story

by Julie

Year 3 Day 0

March is a tough month for us.
On this day three years ago we pushed a button to start an infusion of stem cells donated by Jack to his sister.

I haven’t been sleeping the past several days. A friend’s message letting me know they were ‘thinking of me today on Day 0’ was the trigger to understand why my sleep hasn’t been great, why I am repeatedly reviewing in my mind what happened to Kate, and why my mood has been low. The body remembers trauma, and my mind is still coping with what we experienced with Kate.

The week leading up to Day 0, and Day 0 itself are weighed heavily in emotion. In the world of bone marrow/stem cell transplant, Day 0 is referred to as your “re-birthday”. I’m going to share the story of that day here for the first time. It won’t be emotional. I can’t go there. It is the narrative of what I remember.

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Kate had already been through a week of intensive preparatory chemotherapy to ablate her bone marrow and prepare her for this transplant. Even writing these words now…the fear and anxiety I felt that day push to the surface. It’s an overwhelming feeling – which makes me question why I am writing this.

What I want to share is how we experienced that day. Something that isn’t recorded in a chart anywhere.

The bone marrow transplant team had clearly done this time and again over the years. The mood they set in the room was one of celebration and excitement. I tried to play along as we typically do as parents. You want to engage with your team and show you understand what is happening. You fear showing emotion, or the wrong emotion. So I put a smile on, though I felt confused and scared and had an odd sense of dread mixed with what I can only describe as hope. I wondered if we should be taking a different approach and if I could ask questions, but the train seemed to be rolling and I felt like I had to get onboard.

Maybe if I caught some of their positive energy I would feel better?

The day had already been beyond intense and emotionally draining. Kate and I had been through a week of getting used to living in full isolation, while she was being infused with chemotherapy agents to prepare her for the transplant. The days were long with an energetic little girl enclosed in a room that was 12×15 with a few toys and stickers to entertain her. I was not sleeping much at night as I got used to the lights it the room, the noises of the machines, the nurses coming in and out, and of course waking often with Kate to support her through nausea and diarrhea.

I was worried about her and how this transplant would go. We were getting used to all the new faces of nurses and doctors we were working with. I was quickly learning all the medical terminology in both english and french. We were trying to find a routine in our days. I was already very tired.

12:00 p.m.

Earlier that day I had escorted a very brave and scared 10 year old into the surgical unit to donate his bone marrow. Out of respect for Jack, I will not share details of that experience here. He was incredible and I was devastated with emotion. I am still in awe of him.

They did not let me greet Jack in recovery. He was not placed on the same floor as Kate (as had been promised us). They were separated by a couple of floors. He had very bad nausea as he recovered from his anesthetic and I was not able to be with him – we had to send his aunt instead. 10 years old and his first time in a hospital as patient.

I remember feeling torn about which child I should be with. Who needed me more. Who was more vulnerable. Jack hated to be alone and had significant separation issues. Kate did better with whomever she was with, but I was concerned about her and how she was coping with her infusion. She was the more fragile of the two.

2:00 p.m.

As I sat in Kate’s room, wondering how Jack was doing and trying to text with his aunt for updates, the transplant nurse came into the room. She had a massive 1 litre bag full of blood in her hand. Holding it up, with a huge smile, she said “Look at this! Isn’t this great”. I looked on, feeling anxious and scared, and asked, “What is that?”. She replied, “It’s Jack donation”.

In that moment I felt this rise of dizziness and horror. “What did you do?” I said. I didn’t understand the volume of stem cells they would be taking from Jack. I hadn’t processed what that might look like. It looked like he had been drained dry. No one had prepared me for that. I was separated from my little boy, I hadn’t even seen him yet, and had no idea how he was doing. I looked at that bag of blood and thought, “What have I done”.

(I did recover from that moment. I got a better understanding of the procedure and that this was a good volume and Jack was stable. I also realized how naive and unprepared I was for this procedure and what was to come).

Late evening Day 0

I eventually made my way to the other floor to be with Jack. After pressing the infusion button for Kate, it seemed that she would be fine and Brian could stay with her. I was reassured by the nurse that stem cell infusion was pretty inconsequential.

I was worried about Jack with his nausea, and chose to sleep in his room. Unfortunately sleep didn’t happen as he was in a shared room with another child – and another ‘sleeping’ parent who snored so loudly I could not get to sleep. I asked the nurses for help or a rearrangement of rooms. I told them I really needed to sleep. They said there was nothing they could do (and of course there wasn’t). They offered me another room to sleep in away from both of my kids. I didn’t choose that option.

I am glad I chose not to sleep elsewhere. That night a nurse entered Jack’s room. I woke to find the nurse preparing to poke Jack – to draw blood or infuse something, I wasn’t sure. I intervened before Jack was poked. It turns out the nurse had the wrong child. The intention was to take blood, but Jack was not the patient. This type of thing happens often in hospitals. It is the unacknowledged role of parents/caregivers to catch situations like this before they occur, despite policy and procedures in place. After over 7 years of caring for Kate in hospital, I was well aware of the need to be vigilant. It also reinforced for me that Jack could not be alone. No one said anything to us about the incident.

Meanwhile in Kate’s room

The team encouraged us to take pictures of the ‘moment’ when we pushed the button on the infusion pump.
Kate looked around – her mask on – her hair in cute little ponytails – her torso naked. She was also confused, but used to being compliant. She seemed to be trying to understand the energy in the room and was trying to take her cues as to what was happening from us. She was so innocent.

The large bag of stem cells hanging from the IV pole.

We posed for a picture. We posed with the team and Kate for a picture. We smiled. Someone gave the thumbs up. This was supposed to be a good moment, an exciting one. The transition from fearing SIFD and the catastrophic effect it might have on Kate, to pushing through the other side and finding a place of better health and a life journey that should be less impacted by this disease. In that moment, I’m not sure I believed that would happen. But the moment had already come and gone and the decision was taken. It was a horrible and helpless feeling wrapped up in trying to be brave and hopeful.

That moment, the confusion and doubt, started a seed deep inside me that planted doubt and regret. Even if this went well, I knew I would regret this choice. These are words I never shared with the team.

While I was downstairs with Jack, things were not going well for Kate. Brian began texting me and telling me she was not doing well. Her blood pressure was sky rocketing. Kate was clearly in pain. The nurse was less than helpful – she seemed to be unsure of what to do. Unfortunately it was one of the nurses we were least comfortable with and had a challenge communicating with because of the language barrier.

I decided to leave Jack briefly and go to the bone marrow unit to see what was going on.

Kate was writhing in Brian’s arms. He had that look of desperation, fear and frustration on his face. He didn’t know what to do and he didn’t know what was happening. He was just trying to cope. I realized he had not been in hospital with us very often, and this was his first experience on the floor in the bone marrow unit with Kate. I understood that look on his face. I felt it too, but at least I had been there with Kate the previous 10 days and was maybe a little less disoriented. I felt so sorry for him. I also felt frustrated that he had let the situation escalate to this point and that Kate was in so much pain. It was totally irrational to blame him. The nurse and staff should have been in better control and addressing things sooner. I was used to taking control and knew Kate so intimately. I likely would have realized sooner something was not right. I couldn’t blame Brian for that. I was blaming myself.

The nurse was there but not doing anything that seemed to be addressing the situation. We asked for the team to be called, but it was late at night and they were not available. This also hadn’t been part of the plan as the infusion was meant to start earlier in the day to allow for better observation and the team being available to address any issues. I’m not sure who came, or who the nurse consulted, it may have occurred over the phone, but the infusion rate was adjusted – more than once. We asked for pain medication for Kate,  morphine was prescribed and she settled a bit. It was an extremely long night and not the ‘basic infusion’ we were told it would be. We were trying to pull on all of our experiences with Kate to figure out how best to support her – we were poorly poorly equipped for that experience. It was not a smooth situation for anyone.

The next morning, Jack was up and feeling better. He was discharged and able to come and see his sister. We were grateful that there were no restrictions on him visiting – something we had been very clear about before we agreed to the transplant. Jack visiting Kate and being with her was not negotiable. To be honest, I was so proud of how vigilant he was with hand washing, putting on his mask and gown and understanding isolation and infection control  protocols. Institutions that arbitrarily separate siblings have a LOT to learn.

We were all exhausted from the long and wakeful night. Kate was not feeling much better the following morning. Her blood pressure was still very high and never settled to her baseline.

Day 0 and all the emotions that went along with it came and went.

Day 1 had begun.

by Julie

November 30th

Every night, before I went to bed, or even in the middle of the night if I had woken, I would check on my kids. Go into their rooms and watch them sleep for a moment. Hear their gentle breathing and sometimes put my hand on them to feel their chest rise and fall. Then I would settle back into my own bed and have a sense of warmth, safety, comfort, and feel that all was right with our world. If you can do this, you should.

 

Kate died on this date 2 years ago. I watch it creep closer on the calendar and I both wonder and dread what it will feel like. And now it is here. It’s a Thursday (not a Monday). It is cold and crisp outside. It’s a bright sunny day. Cars drive by. Kids walk to school. Brian has already left for the day, and Jack is off to school. The world keeps turning, and I ask myself the same question I ask every day – how is it possible that the world keeps turning?

My mind slips back to the few days leading up to Kate’s death, and as last Friday, Saturday, Sunday, Monday came and went, I found myself reliving and remembering the events that led to November 30th, 2015. I didn’t greet those memories and let them in, but I also didn’t try to shut them out. They are there and they were simply surfacing. I acknowledged them, and let them come and go. I may have even shared one or two in a trusted space.

There is a term used in the bereavement world called “grief bursts”. They are short periods of intense grief and sadness often brought on by a memory; auditory, visual, smell, touch. The feeling is intense and overwhelming. That would be the past few days for me. It’s not lost on me that I was a hot snotty mess at Bridgehead on Monday, or that I cried in front of peers on Saturday, or cried with a friend who had come to ‘check in’ on Sunday. To feel so much numbness and pain wrapped together today. I knew these days were coming and I tried to steel myself to the memories. It’s a ridiculous space to be in – to seem ‘normal’ to the outside world, to know that few friends  ‘get it’, to notice others who carry on, to try and function.

I work really hard every day to move through the thick dense fog that has become my way of feeling and sensing through the world. Some days the sun peeks through and there is light. Sensing and feeling become easier. Other days, most days, I sink and the numbness sets in, and I feel like I am moving through time and space at a fraction of time different than everyone else in this world. Like my world is shifted. It’s imperceptible to others, but it affects how I see things.

There is so much I want to share about what happened, about Kate, this journey, the coping (the not coping), what needs to change, what I understand will never change. There are so many words and sentences, paragraph rants rolling through my mind, wanting to get out and be shared. It takes energy, and I often don’t have it. It takes courage, and I am not there yet with sharing parts of the story and journey.

What can I share…

I am broken and that will never change. The ripped and shredded heart in my chest is scarred and maimed and bleeding. I place my hands on it. I can feel it. I try to nurture some healing toward it.
There is no cure – I am told – maybe time. Maybe.

I am hurt, and I am angry. And that story needs to be told another time in another space.

I live with intense regret peppered with shame and enveloped in grief. I want to turn the clock back everyday. I. Want. Her. Back.
And I can’t have her. And when I realize this, everyday, it stuns me.
I want to change the decision, the information, the conversation, the guidance, the momentum around the bone marrow transplant. I want another person to step up in the storyline, someone that would speak up – with authority – and state the reasons that this should not proceed. I want to shift the timeline to a point where I make a different choice, at any point along this journey, and where I allow myself to be scared, vulnerable, and upset, and can say No to those pressing us forward. Where I take that tour of the bone marrow transplant unit and say No. Where I sit around a table with 20+ doctors who I feel I am trying to educate about Kate, and say No. Where I sit in any one of the meetings and discussions about the bone marrow transplant and I remember how amazing Kate is, how we are coping, how fragile she is to any change, and I say No. Where I ask the question, “should we do this” and someone says No.

I want a chance to make another choice. I want to have learned from someone else, not others learning because of Kate.

I want to be able to go back and say No.

I want. And I can’t.

And it breaks me every single moment of every single day.

So there it is. Massive grief burst, but only a big wave amongst the smaller waves that I live with every day.
When I read about grief journeys, or hear about them, mine seems spectacularly far to the right on the spectrum. An outlier of intense pain, sadness, and intense regret.

Kate died at 10 p.m. on November 30th. Brian, Jack and I were with her. She didn’t look like herself, her hair only slightly grown back from her chemotherapy, face puffy and distorted from medication, tubes sticking out of her, oxygen shoved into her face. The denial of what was happening had been stripped away, but also remained. We sang to her, told her stories, held her hand, we told her we loved her. She was so intensely loved.

We watched our beautiful child die over 9 short months. She lived in isolation in a hospital away from home, she was poked, prodded, examined by strangers, put through painful procedures. Some people took great care of her, others did not. And she was endearing the entire time.

Kate was amazing. She was the best parts of Brian and I.

I marvelled at how happy she was, how much she loved, how much she was loved. She exuded an incredible light that came straight from her soul. You couldn’t meet Kate and not love her. The loss of that love is so wrong.

I want to take it all back Kate-o.
I’m so so sorry dolly.

by Julie

12 months, 55 days later

IMG_5478

Wow. What a really bad selfie. Why on earth would I post this? I am sharing it because I want you to know what devastation, loss, intense grief and sadness look like. This is me longing for my daughter. Wishing her back. It is a picture important to share because I am not interested in hiding how I feel. It is raw, in the moment and unedited – just like this blog post.

What is it about grief, sadness, extreme loss…depression (gasp!) that people seem to shy away from? Why does it seem so hard for many of us to wrap our arms around those people and show great patience, compassion, and support (beyond just texting about it). I think it is because it takes a lot of energy and time. Both very limited commodities in our very busy lives. It also takes a great deal of compassion.

I am grateful. Grateful because I have that support from very key people in my life. I am getting the space and time I need. I have had the attention and people following up when I have gone ‘quiet’. The friends who know the right thing to say, and when to say it. The friends who continue to reach out, even when I don’t answer, or repeatedly say ‘no’. The friends who sit with me and listen.

It is powerful, and I am grateful.

Kate’s loss rocked my world in many ways. I functioned in a state of shock for many months after. I couldn’t process that she was gone. Honestly, I still feel like she’ll come back, or I can bring her back. Like I am waiting for her.

The incredible amount of time, physical energy, cognitive energy, and emotional energy it took to parent Kate and take care of her left an incredible vacuous void in my life. The routine and relationships we had developed with her medical teams and our children’s hospital were wiped from our calendar. The relationships with therapists, schools, pharmacists, caregivers, nurses, personal support workers ended abruptly. The regular, ongoing advocacy and coordination of care to ensure this complicated little girl got the help she needed to live a full life had gone quiet. The intense medical needs of the last few months of her life just stopped.

I was exhausted from 8 years of intense caregiving to a happy, active little girl who was chronically unwell and medically complex, but when I closed my eyes I couldn’t sleep. Extreme exhaustion and sleep deprivation had put me into a state of insomnia. My body couldn’t adjust to the adrenal overload high I had been riding to simply keep me functioning day to day. My mind couldn’t settle from the trauma of the last 9 months of Kate’s life – what she had endured, and what we had experienced.

And with all this, I miss my daughter. The little girl I brought into this world. I love her and would do anything for her. I wanted so much for her. I miss her smell, her soft hair, the laughter in her eyes, her giggle, her soft hands, her hugs, her voice, the feel of her body when I held her. I could go on and on. In my thoughts I do, every moment of every day.

I talk to Kate often, usually she comes to me, and her words bring tears to my eyes. I know she misses me as much as I miss her. I know she left us too soon, because of decisions and under circumstances that I feel could have been different. I know she suffered because those charged with caring for her did not always do their best for her. Those thoughts haunt me. They cycle around in my head and they are constantly present.
It has been an intensely complicated grief. I would need time. A lot of time.

I cry. A lot.
I am slowly regaining my strength. But it has taken an incredible amount of time, and patience. Having the courage to be patient with myself, and understanding that I am forever changed is something I have had to learn, accommodate, assimilate. There are things that I no longer enjoy. There are situations that are uncomfortable and that I now avoid. There are people I have had to forgive, knowing that what they did was not ok. There are some things that are not forgivable.

There are also days that have some laughter, some light. I love being a mom. My children mean the world to me, and the relationship I have with my son Jack is one that I treasure beyond anything else. Time spent outdoors, connecting with this world and myself, running, skiing, cycling, yoga, surfing and more. There are moments when I think of Kate, ‘wouldn’t she love to be doing this’, and they are happy and reflective of her time in this world. There is some light and that is what I work on every day. Moving toward that light and the love, energy, and people that reside there.

I am writing this post today because on this day many of us are talking about mental health. I want to add my story, because story telling is how we share and learn best. This is a truth.

I want other complex care moms (and dads) out there to know I understand. I get it.
I want you to know you can call me. I will listen. I will try to guide you based on my own experience.
I want you to know that you are not alone and there are people who will listen, sit with you, hold your hand. Keep asking until you find that person. You will know them when you find them. They are the helpers, the ones you can lean on, the ones who will come without you even asking.

Don’t try and do this alone. It is too hard.

Thank you to my helpers, the ones who listen and continue to be there for me.

 

Julie 

 

by Julie

Kate Drury – One Year

Katherine Carol Irene Drury was 8 years old when she died. She was a beautiful green/blue eyed girl with soft blond hair, an impish grin that crinkled her nose, and a wonderful giggle. She liked princesses, Dora, Curious George, puzzles, play dough, singing, friends, school, chips, french fries, pasta, boating, pools, sledding, gymnastics and beaches. She loved to be outdoors. She hated ‘pokes’ for IVs or bloodwork. She was curious and made friends with everyone. She loved her van and doing any assortment of errands. She was deaf and had cochlear implants. She learned to speak and had sign language as well.

She was frequently sick and often at CHEO. She inspired doctors, nurses, researchers, the mitochondrial disease and SIFD community, her friends, family, neighbours, community, and people across the world.

She was a trailblazer when all she should have been was a child. Even in her death, people are still learning to be better because of her. 

 

Kate died November 30th, 2015 at 10 p.m.

I have no more words to describe what happened in those final days. I have shared what I can, sobbing as I wrote those 5 essays. So hard to write them.

I loved my daughter with all my heart. I still love her with all my soul. Brian and I are devastated at her loss. It feels surreal. Jack is speechless and extremely personal about his grief. ‘Ruined’ is how I describe myself. I often look at the calendar and think, one more day, week, month, year without her. I wonder about how long until I am with her again. I struggle every moment for composure. I work hard at putting one foot in front of the other.

Our lives are quiet, filled with too many hours. Kate took up so much space and energy. The void she has left cannot be filled, we have not been able to adjust. Her laughter, giggles, physical needs, medical needs, took up so much time and emotional space for all three of us.

I wake every morning and open her door and whisper the words, “Good morning dolly”. I close her door in the evening (at her bedtime) and sign “Good night Kate-O”. Her space is unchanged, her smell lingers, her room is a sanctuary for her spirit.

I talk to her. The conversations happen spontaneously and feel so real. She signs and speaks to me. “Miss you”, “Love you”, “Come”, “Jack”, “Papa”…”Sad”. They are her short sentences that have so much meaning.

I reply back to her; “Oh baby-girl, I miss you too”, “Yes dolly, I love you”, “I will come Kate-O, soon” (and she signs back “soon”), “Yes, Jack – Jack misses you too”, “Papa loves you”…”Yes, Kate-O, mama is sad. I miss you.” I feel she is confused about what happened and the veil of separation that exists between us. We are so close we can almost touch. She is happy and safe, but waiting for me.
And then, I feel some relief. I love when she comes to me. I love when I can feel her arms wrap around my neck, “Sq-eeez”, she says. Or when she visits with a beautiful sunrise of pink and purple. Or when she kisses my cheek and giggles. Or grabs my face in her hands and puts her face so close to mine. It feels real, there is a physical sensation, her presence is so strong and powerful.

She visits others, and those accounts of “Kate visits”, feel so real and are so beautiful. I am glad she is spreading her love.

Kate was a very unique child and spirit. Yes, I was her greatest champion and advocate, but I cannot take credit for what a force she was in this world. She was a gift that I was entrusted with.

Her death was a tragedy. It should not have happened and I will never forgive myself for the decision we took. I feared her disease taking her life unexpectedly. I wanted to help her live a full life and one that might have been less difficult. I became convinced this was the best choice to realize that. I could never have imagined this would be the end of Kate’s life, or been prepared for the circumstances leading up to her death. I had so much more to do with her, and she had so much more to share with all of us. She deserved so much more.

Thank you for your beautiful tributes today. Pictures, posts, messages…they are truly touching and I will read every one.

Julie 

by Julie

Goodbye Kate – Part 5

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.