12 months, 55 days later

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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 

 

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.

The Journey Home – Part 4

On Saturday, November 28th, 2015 we arrived home from Ste.Justine hospital with Kate. Kate’s pain was no longer under control and we did not have a good plan to manage it. That day was overwhelming while people caught up with the situation, and we were finally set up to support Kate the way she needed to be. It was adrenaline and pure love that kept us going after days, weeks, months of little to no sleep. We were emotionally and physically fried, fueled by desperation and an underlying sense of panic as we navigated something no one could imagine in their worst nightmare. 

 

Part 4

Saturday night was not a restful sleep. Kate did not wake. She seemed comfortable. I went to my own bed, as did Jack. Brian slept on the floor beside Kate. At midnight he came and got me. “Kate is making a funny sound”, he said.

I got up and went to her, and indeed she was making a strange sound. A sort of chesty gurgling, like she needed a big wet cough. I checked her oxygen saturation and heart rate, and all was well. We now had an oxygen compressor in the house and did not have to rely on tanks. I also checked her IV fluids that were continuing to run. I had not paid much attention to the rate, and now saw that they were at 80ml/hr. That was an unusually high rate for Kate, who was typically on ‘maintenance fluids’ throughout her life. A range of 20-40ml/hr was what I had been accustomed to. I made a mental note to ask Dr. Splinter when he came in the morning. I remembered that Dr. Duval had emphasized that rest, pain management and hydration was the way to treat an acute pancreatitis. I thought of turning down the fluid rate myself, as I was very familiar with programming the pump, but I chose to wait.

I thought of sending Brian to our room, but I knew he wouldn’t go. He looked exhausted. He was exhausted. He had been sleeping on the floor in Kate’s room, with his arm reaching up to her bed so he could hold her hand to let her know he was there. At some point in the night, Jack had joined him on the mattress next to Kate’s bed. I can’t imagine how he slept like that. He probably didn’t.

I climbed into Kate’s single bed in the space between her and the wall. I didn’t want to disturb her, but tried to gently move her over to create some space. We did a lot of co-sleeping with Jack, but never with Kate. She always wanted her own space. I decided this is where I would stay. I slept, which really was just resting my eyes and dozing off. I mostly listened. The gurgling became more pronounced, and at 5 a.m. I decided I needed to call Dr. Splinter. I described what was happening and he asked me to hold the phone to Kate. He said he would be right over.

I wasn’t ready for the incredible intimacy of those moments between Dr.Splinter, Kate and I. There in my pyjamas, my glasses on (I wear contacts typically), no makeup, hair tousled, sleeping with my daughter in her bedroom in our home. You would think I would not give it a second thought considering all of the years I had been admitted into hospital with Kate. (Yes, when you admit the child, the parent is admitted to). I had walked in the halls in my pyjamas to go to the bathroom, or upstairs for a late night tea in the kitchen. I had a nurse walk in on me more than once while I tried to quickly get dressed in Kate’s room. I stumbled for my glasses and to gather myself from a sleep stupor as residents came in to our room in the  early morning. Dr. Splinter and I had known each other for years, but I still felt a little exposed as he stepped over my husband and son on the floor next to Kate. He thought nothing of it. His incredible years of experience, our long term relationship, and his astounding ability to do this part of his job so well and with so much directness put me at ease.

He listened to Kate’s chest and told me she had fluid overload. He turned off the IV fluids. “She doesn’t need this”, he said. Her body was not using the fluids we were giving her efficiently and the wet sound in her chest was the result. (I learned later that this was also a first sign of her body shutting down.). He introduced a medication to reduce her secretions. We came to use it a lot through her subQ site over the next 24 hours.

I told Dr.Splinter that Kate had not been getting her post bone marrow transplant medications, including her heart medications. I had been told to keep to our schedule as much as we could, but the night before Kate was not conscious enough to take them orally. Dr.Splinter reassured me that he was not concerned. I knew on some level that this was important, but I didn’t process this information. I filed it aside as something to worry about later, when Kate was feeling better and more alert and we could get back on track with her medications. Although we had brought Kate home because her team felt nothing further could be done, I wasn’t understanding yet that she would likely die and that she was declining quickly.

Dr.Splinter was back and forth a couple of times that day. It was a busy, confusing, overwhelming day. It was a day of enormous change.

We had let friends and family know what was happening, and that we were home. On Friday I had called my brother to let him know we were taking Kate home. He  said he could fly to Ottawa early next week. “I don’t think she’ll be here Michael”, I told him. We had also called Brian’s sister in Newfoundland, she was on her way to Ottawa with her husband and daughter. His other two sisters were making arrangements. My parents were here. They had moved to Ottawa temporarily to support us during the bone marrow transplant. They had stayed after all of the complications had occurred and we found ourselves back in Montreal. I did not speak to them much over those few days. I could not even look at them as I could not bring myself to see their grief on top of my own. It was all I could do to keep myself together. I feared the grief of others, especially my parents. It would be too much to bear, and I would fall apart.

My tribe of friends from Rogers House and CHEO were waiting to take action. A couple of them came over and offered advice and assistance about oxygen lines, positioning Kate so she would be more comfortable by propping up the head of her mattress, giving advice about pain management, fluid overload etc., and taking on the massive job of cleaning out my fridge which had been filled beyond max with food from concerned neighbours. Other close members of our tribe kept in touch by text, and shared advice, and words of support. I poured out my heart and deepest fears. They responded with compassion.

These were knowledgeable, smart moms who also had sick children, or who had lost their child after a medically complex life. I know how lucky I am to have met them through the CHEO Complex Care Program and Roger Neilson House, and to have had their support and love. Sadly, they were also attending to other friends of ours who had lost their son several days earlier. Not everyone has that sort of ‘tribe’ at such an incredibly difficult time.

Sunita and Stephanie continued to manage medications and tried to set up a schedule to keep track of what was being given, by whom, and when. I relied on them both heavily. I did not want to have nurses in our home. I felt an immense need to nurse Kate myself, and with the support of Sunita and Stephanie, I felt I could do that. Between the two of them, one of them was always at the house.

At one point there were a few nurses downstairs, all sent from various agencies via CCAC. There was much discussion about who should be there, what their roles were, and who was best suited to support our family and care for Kate. A nurse we had worked with all fall, finally put her foot down, insisting she knew our family best (she did) and that she would look after us. The other nurses left. I was grateful I didn’t have to intercede and grateful for the quiet presence of this nurse who knew us, and played an important background role of organizing medications and drawing up syringes, and monitoring Kate.

What I remember most from that Sunday was confusion. I had convinced myself that this possibly wasn’t the end. No one had said it was. Maybe it wasn’t. I asked about bloodwork, maybe we need to adjust her fluids? When Kate opened her eyes, unfocussed and rolling, I thought it was a sign of her regaining consciousness. She was squeezing the hands of people who were sitting with her, I thought in response or recognition that they were there. I reminded myself that we were managing her pain, she was well hydrated and she was resting, all the things we were supposed to do to manage the pancreatitis crisis. We just had to wait and see and give her time. We could have weeks, maybe months if we got her stable. Isn’t that what we had talked about less than 48 hours before?

I blame panic and and inability to process what was happening, for my confusion about what was happening to Kate. It was the denial of grief, and I was exhausted. Beyond exhausted. I had not slept in 48hours. I had had little sleep in the past 9 months, while living in 24/7 isolation with Kate. Compounded by 8 years of caregiving that never involved a full night sleep.

I asked my questions and made my case to Dr. Splinter when he arrived in the afternoon to check on Kate. And he reacted exactly in the way I needed him to. Firmly and directly. Kate did not need bloodwork. We are managing her exactly as she needs. She is declining faster that he had anticipated. We are doing all the right things for her. “You are doing a good job”, he said to me.

We set up a chair next to Kate’s bed. If I was not laying in bed with her, someone was always with her to hold her hand. Touch was important. We respected Kate’s space and did not put her cochlear implants back on. We also tried not to move her or pick her up. As much as I wanted to hold her, I did not want her to have any pain.

Jack took charge of monitoring her vitals. He wanted to know exactly her heart rate and oxygen saturation. If they changed or were elevated, he would let us know. It was a good indication if we need to increase Kate’s oxygen or morphine. When she developed a fever, Jack got cold face cloths to cool her off. I let him help me manage her PICC. He was better than most at ensuring infection control was respected and knew what materials to hand to me and when. As much as anyone, Jack was involved in nursing her. He was her brother. He had always been there for her, and that wasn’t going to change now. It was also very natural for him to be involved and helping me. He always had. I am so proud of him.

I was scared to sleep that night, Sunday, November 29th. I was grateful the day was over. I was grateful for the stillness and the quiet of just us in the house. Brian and Jack slept on the mattress on the floor again, and I climbed in with Kate. She was naked, having soaked through her pyjamas and her body heating up. We thought it would keep her more comfortable not to fuss with putting another set on pyjamas on. I stroked her chest, her arms, her face. She had changed so much physically. Her face was distorted from steroids, her hair was growing back a light brown, her body was puffy, and her hands were exceptionally warm.

I talked to her that night. I told her it was ok, that I understood what was happening now. I told her how amazing she was. How brave, and beautiful, and smart. I thanked her for being my daughter and for all she had taught me. I told her I was sorry. I was so so sorry for all of it, all of this, everything she had had to endure. I told her that I would always be with her, that I would NEVER leave her. I would find a way. And no sooner had those words left my thoughts that I felt an incredible intense pain in my chest. A ripping sensation, a tearing, a shredding. I couldn’t breathe. I didn’t understand. And then Kate showed me, it was her. She had heard my words, she was taking a piece of my heart for herself. So that I would always be with her. I smiled at her and I cried. “Oh smart girl Kate-O”, I said. “You figured out how to keep us together”. “I don’t want you to go Kate, but you don’t need to stay for me. I’ll go with you.”

This is what I can remember. The raw truth and love and honesty that spilled in whispers from my lips to her ear. She couldn’t hear me, but I held her hand to my mouth so she could feel my words. I whispered to her so we wouldn’t wake the boys. Mother and daughter secrets. Kate-O and mama. I felt calmer after. A strange aura of calm and understanding between she and I. I also felt gratitude. Grateful we were all together and at home. Grateful she would not suffer with strangers at her side. I didn’t want her to die, but if she had to, this is the death I wanted for her.

 

 

The Journey Home – Part 2

On Friday, November 27th, 2015 CHEO and Ste.Justine held a video teleconference to discuss Kate. Brian attended in Montreal with the Ste.Justine team, and I was in Ottawa with our team here. We discussed how or if we should intervene in trying to treat Kate’s graft versus host disease, and Brian and I were very clear about our wish to have Kate come home for the weekend as we tried to decide what to do next. 

 

Part 2

I left the meeting with CHEO and Ste.Justine in disbelief and shock, but I also had hope and I wanted to be smart and think through the options that had been placed in front of us. The room emptied, some people said goodbye, our palliative care team asked us to keep them in the loop, and others I didn’t know as well looked at me with grave sympathy.

My friend Sunita had attended the meeting with me, as a pediatrician and friend who had been by our side during this entire journey, I trusted her judgement and opinion. I could also always count on Dr.Major to be there for us, and she was again, knowing that I needed further support and discussion about the conversation that had just happened she lingered behind. The three of us agreed that we needed to further discuss the conversation we had just had, and we headed to the security and comfort of Rogers House (Roger Neilson House) to talk more.

The details of that intimate conversation are difficult to share here. To discuss how to save your child’s life. To talk about the fact that her little body may have had enough. To try and decide between a ‘hail mary’ treatment with high risk, or a possible slow and painful death. To have that conversation. It was surreal. I was in so much pain. I felt so much fear and grief and loss already, and I felt an incredible enormity of pressure to make the right choice for Kate. Just as I had when we decided to do the bone marrow transplant. The grief about making that decision and where it had brought us to, I cannot even express in words. I felt incredibly betrayed by life, fate, the randomness of the universe. How did this happen?

Dr. Major and Sunita shared their opinions and thoughts. They coached and they supported in the best way they could. I think they too were relieved that Ste.Justine (Karine) had found a solution to get Kate home. They reflected on how  unwell Kate was, the complications she was dealing with, and the highly risky nature of the proposed procedure. What that conversation did was allow me to settle, ask more questions, repeat questions I had already asked and to have the time to absorb what Brian and I had been told. It might surprise you that in medicine, and the medical world, the patient or parent is typically the last one brought into the discussion of “what should we do next”. Kate had been discussed. Options had been thrown around a board room with people who only knew her medically. The seriousness of the situation, how to manage it, the possibility of experimental procedures to address Kate’s GVHD, we were not part of those conversations until that Friday morning. And then we were asked to make a decision.

That lack of engagement, of me being intimately involved in discussions about MY child, still haunt me.

Sunita and I drove home from CHEO later that morning. I did not rush. Brian was with Kate, and I had ensured that one of our private respite workers was there to support him. As I arrived home, to change and prepare to drive to Montreal, I thought of picking up Jack from school. I wanted his company for the drive, and after 9 long months of ongoing separation from his sister, we tried to include Jack in our Montreal trips as much as we could. I made a ‘mom decision’ to not disturb Jack that day. Although Kate would be excited to see him, I decided it could wait until we arrived home. I would later regret that decision.

As I drove to Montreal, I tried to touch base with Brian by phone. He was not answering which I found strange. Brian was never far from his phone. Neither of us were during our long stay in Montreal. I was finally able to connect with one of Kate’s nurses, she told me Brian could not answer because he was rocking Kate. She had fallen asleep in his arms. I still found it strange that no one could hand him his phone. I felt something was ‘off’, and hurried the pace to get to Montreal.

Centre Hospitalier Universitaire Ste.Justine is a large children’s hospital. It was under heavy construction at the time as it was expanding. The parking garage was always full, but I had a secret spot close the elevators where I always seemed to find parking. The walk to the Charles-Bruneau centre the cancerologie (cancer centre) is long and winding. Having been at Ste.Justine for 9 months, I knew that wing of the hospital with my eyes closed, and had a short cut to get to Kate’s room. I moved quickly through the basement hallways and passages, and up the elevator to the 2nd floor. I didn’t stop to say hello to the nurses, or staff at the desk by Kate’s room as I usually did. I wanted to get to her. As I entered Kate’s room, I felt the tension and fear in the air. I saw Brian first, a look of fear and confusion on his face. I looked at Dr.Duval next and he looked back at me with almost apologetic sadness. “Something is wrong”, Brian said. I took one look at Kate and just moved toward her, not speaking, not asking questions, just focussed on my girl and needing to comfort her and figure out how I could help her. “Kate-O”, I said as I crawled into bed with her. “What’s wrong dolly?”.

Kate could never tell us she had pain. It wasn’t a word, sign, or concept she had managed to grasp. She relied on me to understand and to know for her. And I did, by the look on her face, the way she held her body still, her arms above her head. If the pain was bad, she would try to minimize and stimulation. Her ‘ears’ (cochlear implants) were the first to go. She would take them off. She refused cuddles, or being touched. Sometimes she would let us hold her and rock her, but only standing upright and only if we swayed and created some side to side movement. As I crawled into bed with her – drawn to her – I could sense her pull away. But I needed the closeness, so I stayed with her, and I listened as Dr.Duval spoke.

What I remember is this:
Something happened when Brian came back to Kate’s room after our morning videoconference. Maimoona, our caregiver, had been with Kate doing arts and crafts, making cute handprint cards for us. Kate had seemed fine until she started to get more and more quiet. When Brian returned to her room, she wanted to be held, and she fell asleep with him. One of Kate’s responses to pain and her way of managing her pain, was to withdraw and ‘sleep’, shutting the pain and any stimulation out. Brian knew something was not right and alerted the team. As Dr. Duval assessed Kate, he had concluded that an ‘event’ had occurred. Possibly a perforation of her bowel from the GVHD which may have caused an acute pancreatitis (this would explain her unusual bloodwork). When I arrived, they were trying to decide what to do next.

My first question was, “What has she had for pain?”, immediately alert to the need to make Kate comfortable. This had been addressed, but it was clear more pain management was needed, and Dr.Duval ordered a morphine bolus.

My next question was, “What do you suggest we do?”. Dr.Duval was unsure of this, there was some back and forth among the team. Should they image Kate? Should they take her surgery and see if they can repair her bowel? Would she survive such a procedure? What Dr.Duval was clear on was that Kate was now in no condition to undergo the highly risky and experimental treatment to ablate her immune system and try to end her GVHD. The decision had been made. We had not even had time to discuss it together, Brian and I. Kate had made it for us. And this decision made by a little girl, led us and her team to the knowledge that imaging her to diagnose the issue, and taking her to surgery were no longer necessary either.

My third question was not a question, it was more of a statement, “I want to take her home”.

Dr.Duval was concerned about us leaving and taking Kate home. Pain management was a concern, and I think he wanted to be certain of his diagnosis and prognosis for her. He wished for us to spend the night at Ste.Justine and allow the team to observe Kate and stabilize her pain. Pancreatitis is painful, but it can be recovered from through hydration, rest and pain management. “Perhaps there was a chance?”, I thought to myself. I know now that Dr.Duval was concerned that Kate might die that night.

I felt a pressing need to have Jack with us. Almost a panic. What if he was not here with us when the unimaginable happened? It was a 2 minute phone call to Sunita who agreed to drive through a snowstorm to bring Jack to Montreal. “Hurry”, I told her.

Our Ste.Justine team were incredible in supporting our family that night. In addition to the small built in bed in the room, they brought in two cots for Jack and I. (I guess they didn’t realize that we’d likely only need one as Jack typically slept with Brian or myself). Though we were next to the busy nursing station, it seemed they were extra quiet that night. Respectful and knowing. Like they were holding vigil for our little family, and their favourite little patient. They loved Kate, and they all felt the enormity of what was happening. I told our nurse Sophie to wake me if there were any changes in Kate, and though she and I knew that I would not sleep that night, she promised me she would. Sophie was gentle and quiet and reassuring, and I felt comforted.

We called my parents, we called Nancy, Brian’s eldest sister. We told them not to come, that we wold be home soon.

Sunita arrived with Jack. Oh that moment, my brave boy – my heart is breaking as I write this (can it break anymore?!!). I was in bed with Kate, and Brian was in tears. The scene for Jack was such a shock. The moments he has had to live through, the bravery he has shown, the love he has for his sister. I can’t describe…

Kate settled that night. Dr.Duval ordered a morphine infusion to stay in front of the pain. Kate slept soundly. Her breath even. Her body restful. “Maybe it would be ok”, I thought to myself as I watched her sleep. “Maybe they are wrong and she just needs to rest”.

The following morning, Kate woke, she was clearly unwell, but stable (I thought). Karine had come in and requested to be our nurse. Our familiarity with her and her ease with our family were a great comfort. I began immediately packing our things, organizing our room, and making our plan to leave for home. I think I surprised Karine. I’m not sure this is what she understood the plan to be. She asked me, “When did you want to leave”, (it was 8:30 a.m.), “Dr.Duval would like to see Kate before you go”. “In about a half an hour”, I replied. Dr.Duval arrived to the hospital about 30 minutes later.

I can’t speak for Dr.Duval, I don’t know what he was thinking or what he felt. We had one more conversation about Kate’s condition and his prognosis. He stated again that he felt there was nothing they could do that would be a worthwhile intervention. At the same time, I could feel his reluctance to let us leave. Dr.Duval made phone calls to our palliative care team at home. He wanted to ensure someone would receive us at home in Ottawa. Kate’s pain management and comfort were now his priority, and it was the weekend, so specific arrangements had to be made to ensure proper medical and nursing care were in place for Kate to go home as we wished.

I spoke with our palliative care doctor, Dr.Splinter, and confirmed the plan to call him as we arrived into Ottawa. He would meet us at home. I didn’t ask any questions about anything else. Dr.Duval gave us a DNR (do not resuscitate) note in case anything happened on the 2 hour drive home. Karine ensured we had the hydration fluids that had been already planned for the weekend, a full tank of oxygen, and all of Kate’s medications. There was still hope that Kate might recover from the crisis, and the plan was to continue her medications until she could no longer tolerate them. Kate was given a double bolus of morphine. We hugged our team goodbye, there were tears and a few words. A couple of our nurses came in to say goodbye, and Karine made one last “I love you” sign to Kate as we left.

Kate would not put her cochlear implants on that morning. In fact, she never wore them again. But Kate understood American Sign Language, something we had committed to when she was diagnosed as profoundly deaf at age 2. I signed “Home” for Kate. I told her we were going home – all of us. She didn’t seem to understand or believe me at first, and then she perked up as she signed “Home” back to me and said “Yes”. What a simple thing, to go home.

The Journey Home – Part 1

Kate, November 2015

Kate, November 2015

On Saturday, November 28th, 2015 we brought Kate home from CHU Ste.Justine in Montreal. She was very sick from post bone marrow transplant complications. Her most responsible physician, Dr.Michel Duval, had determined nothing else could be done for her. He suspected an acute pancreatitis, possibly brought on by her graft versus host disease. Surgery was considered, but it was felt Kate might not be strong enough to endure the procedure. Another option was to bring Kate home, keep her hydrated and manage her pain with the hopes that she might recover.
Kate died at home November 30th. I have never told this part of her story, about her coming home. In memory of the anniversary of her death, I wanted to share it with you over the few next posts on this page.

 

PART 1: Monday November 23rd to Friday November 27th, 2015

Kate was admitted to CHU Ste.Justine from home on Tuesday, November 24th. She had been examined by Dr.Major on Monday in the MDU at CHEO. Kate was having pain, was not eating, her BMs (bowel movements) had changed again and her need for oxygen was unchanged. I was scared, confused, and had that gut feeling that something was terribly wrong.

Dr.Major was very caring, empathetic, but also had her serious face on. I had seen that before. She had taken on an enormous responsibility to try and navigate my little girl through the brutal post BMT complications over that fall. It was not her area of expertise, but she had stepped up in the absence of any others. She and I had a strong relationship over 5+ years. She knew Kate and she had been part of the team to recommend the bone marrow transplant. I think she felt incredibly responsible to her and to me.

Christine was not in clinic, Erin was in her place. I felt comfortable with Erin, but I longed for the ease I had with Christine. In those moments, I missed her calm presence and the history we shared over Kate. I was grateful for that small comfort over those few hours in MDU that day.  As I fought back tears and a sense of panic, I asked Dr.Major, “What should we do. I think this is GVHD”.  Dr. Major answered that she would consult with Dr.Duval by phone. She left and when she returned a little later she said, “Dr.Duval agrees, he feels the GVHD has returned”. It was a simple statement. It turned my world upside down and my heart sank.

The look that passed between us in the moment was doctor to mother, mother to mother, friend to friend perhaps. Devastation. Fear. Sadness.

Disbelief. How could this be happening?

I tried hard to control my tears. Fight them back. To stay strong and stoic. To be brave for Kate. It was a living nightmare and I felt panic and bile rise to my throat. “Don’t show it”, I thought to myself. “Stay in control. Think. Think. What is next, what can we do next”.  Kate was watching us closely and being silly as she mistook a young resident who was with Dr.Major for Christine. “Christine” Kate would say, waiting for her favourite nurse and friend to say “Hi Kate”. The resident was confused, and looked at me. “She thinks you’re Christine, her nurse”, strangely annoyed as I tried to explain. She looked at me with a blank look. She was young, the situation was clearly over her head, and she did not know our family. It was a familiar situation from the past 8 years. I directed my look to Dr.Major and she understood that the moment had come to ask this person who was not part of our circle to leave. She couldn’t understand or fathom the journey we’d been on, and the incredible crisis we now faced. I felt incredibly vulnerable and I did not want to break down in front of this stranger. Dr. Major understood. The resident left the room for something, she didn’t return.
I quickly began gathering our things in the room. Little room #7, the smallest possible exam room ever. The only one we had ever really known in our 5+ years in the CHEO MDU. Too small for Kate’s wheelchair or to fit more than 2-3 people comfortably, and yet, how many people had we squeezed in there at a time as they poked and prodded Kate? Maybe 6 or more sometimes? On that day we had at least 7, including Kate, as our palliative care team as visited and assessed Kate. And how many times did we have to rearrange the room so we could conduct a procedure in there with access to both sides of the tiny cot. “It is ridiculous how small this room is, and how much time we have spent in here”, I thought to myself as I gathered our things.

I kept my head down. Not wanting to look up and meet anyone’s gaze for fear that the tears would start to fall, that I would ‘lose it’. I didn’t want that to happen. Not in front of them, or Kate. “You have to stay strong, you have to keep it together, you have to figure out what to do next”, I told myself. In those moments, no one said a word. Maybe there was nothing to say, maybe there was too much to say. No one knew what would be appropriate. “Was this the end?”, I am sure they were all asking themselves.

Kate said goodbye to Erin and Dr.Major, she continued to wave goodbye to people we knew in MDU as we exited for the last time. Smiling and waving despite it all. As I neared the door to leave, the tears started to fall. We would never return to the CHEO MDU.

The following day, Tuesday, November 24th, Kate and I arrived to Ste.Justine with Brian. Usually my dad drove us to Montreal for our weekly Tuesday appointment at the out-patient clinic. Today was different. As I packed the night before, I packed extra clothes and supplies for Kate. I packed the dry boxes and chargers for her cochlear implants, extra diapers, pyjamas, toys and puzzles. I also packed an overnight bag for Brian and I. I told my dad that I would not need him to drive us but would he please watch Jack. I didn’t know when we would be home.

I knew. 

The day was long on Tuesday. Our usual bloodwork was done, the dressing for Kate’s PICC was changed and the ‘caps’ to her PICC line also changed. As we entertained Kate in her isolation room, Dr.Duval came in and we discussed the plan. He wanted Kate to stay. Her bloodwork was showing unusual deviations in potassium and calcium, and she was clearly not feeling well. He felt we needed to get Kate back on TPN (total parenteral nutrition), where she was fed through her veins, being unable to digest anything directly from her gut. The GVHD was causing this. To start TPN, we had to be admitted.

I agreed, but was insistent that we get the TPN sorted out and then communicate quickly and directly with Ottawa to get the formulation compounded and delivered to our home. This had been an incredibly difficult thing to set up over the summer and early fall of 2015 in order to get Kate home. Since the plan had already been done once, I hoped it would be easier the second time. Dr.Duval agreed, but his demeanour was more of a ‘wait and see how things went’.

That day in clinic was long. I was spent emotionally and physically. I felt like I had nothing left and as I look back now, I think I knew how unwell my daughter was and that anything could happen. The past 9 months and the incredible stress reached a tipping point. I had been so resistant to this up until now, even when Kate was diagnosed with her acute onset hypertrophic cardiomyopathy in September, and we were told she would likely die from it, I did not believe it. Now I could feel the sense of panic, dread, fear, exhaustion set in. We had been through so much, and Kate had been through so much. I believed in her, but now I was scared.

I can describe in detail the two moments when I ‘lost myself’ during our 9 month BMT journey. This was the second moment as Brian was out of the room and I was alone with Kate’s nurse, Johanne. I cried. Hard. Big, snotty, hicuppy, heaving sobs and tears of grief. I was scared, “I can’t do this anymore. Kate can’t do this anymore. What have we done? Why is this happening? I am so scared”, I repeated over and over. The words poured out of me. Johanne listened and held me. I leaned into her.

Brian and I decided that I would go home and he would spend the night with Kate. I wanted to get back to Ottawa and try to coordinate things from that end in hope of getting Kate home sooner. I had learned from experience that I needed to be ‘on point’ with organizing discharge, coordinating home care, facilitating our TPN coordination, etc. We had learned through this process that though we had our complex care team championing us, I needed to work closely with them to make things happen. Kate did not have a the support of a post-BMT team at CHEO. Between Ste.Justine, complex care and myself, we had to fill that gap.

As we went upstairs to the hematology/oncology inpatient unit at Ste.Justine, we did not go to our usual room 2-12-25, but to a room closer to the nursing station. It felt foreign and turned around. Though we felt safe with the incredible nursing team at Ste.Justine, something did not feel right. I think Kate felt it too. It was late in the day and time for bath and bed. Kate was sad and kept signing and saying ‘Home, Home’. I can’t remember if she cried, but I knew she was sad. She wanted to go home, she did not want to stay. Was she scared? Did she know? My smart little girl had an incredible intuition for people and situations. Did she see the fear and sadness on my face?

It was incredibly hard to leave her that night, but I knew she was safe and with Brian. I wanted to get home in order to get her home. I had to make that happen.

Over the next 3 days there were phone calls between myself and CHEO palliative care, myself and CHEO complex care, myself and Ste.Justine (nursing, physicians, dietician, GI) trying to advocate for Kate and for her return home. I was met with reluctance by Ste.Justine as it was felt Kate was not stable enough and because of her fluctuating bloodwork they wanted ‘more time’ to sort out her TPN. I knew that if we did not get things sorted in the early part of the week, Kate would not get home for the weekend. CCAC (Community Care Access Centre) who would be in charge of Kate’s TPN at home, does not operate over the weekend (fyi: nothing in medicine happens on the weekend – it is a M-F 9to5 business).

I visited Kate over FaceTime. She would wave and giggle, signing and saying “Come, come”. I told her “Soon”, and she would sign back “Soon”. I made sure Brian was supported by Maimoona that week, one of the care providers we had hired privately to give us some respite during the long days in isolation. Kate was happy and joyful, despite the fatigue I could see in her face.

Finally it was determined a ‘case conference’ meeting should be held. These are meetings with multiple clinicians and service providers involved in the case. They wanted to discuss next steps for Kate between the CHEO and Ste.Justine teams, and I wanted to discuss getting her home. The meeting was held on the morning of Friday, November 27th, 2015. It was a videoconference between CHEO and Ste.Justine. Kate’s most engaged teams were there; complex care, cardiology, palliative care from CHEO, Ste.Justine BMT, dietician, GI, and nursing. Also in the room were discharge planning from CHEO – supposedly to help with organizing home TPN.

The discussion was set around what to do as next steps and trying to plan getting Kate home. The news from Ste.Justine was incredibly somber and difficult to hear. They felt Kate’s GVHD was back, that they could not increase her steroids that they had been weaning because her body was no longer tolerating them. In order to control the GVHD steroids were needed, but the steroids were killing her. It was a unique situation, one they had not encountered before and they were at a loss. What was proposed to us was a choice; we could take Kate home and let her GVHD be managed minimally at a low dose steroid level she might tolerate. The teams could not predict what might happen. Kate might slowly fight the GVHD and recover, the GVHD could take over and cause other complications in other organs besides her gut, she could live weeks or years and would supported by palliative care. No one knew anymore than that. The other option was an experimental procedure involving ablating Kate’s new immune system and letting it ‘reboot’ (so to speak). The theory was that the new immune system received from her brother during the bone marrow transplant procedure was over-active and attacking Kate’s body, specifically her gut, as an invader. If we gave it a reboot, the killer cells would be eradicated and when they regrew would possibly not be as aggressive, thus ‘curing’ the GVHD.

It was a dangerous procedure. One the Ste.Justine had been discussing (unbeknownst to us). Kate would be at high risk for infection, and in her already fragile state there was no guarantee she would survive the procedure. We were given a 50/50 chance. It was extremely difficult process this option given the limited time of our meeting and the need to decide quickly.

Our option was to hope Kate could recover from GVHD on her own, and treat her palliatively with minimal intervention, or go the aggressive route and hope to ‘reboot’ her immune system in hopes that the immune system 2.0 might not have the same GVHD effect.

As we heard this news, tried to process it, Brian and I sat surrounded by her teams, but alone. He in Montreal and I in Ottawa. He with a team of 5-6 physicians and I surrounded by the same. All eyes on us. We were supported and most people were empathetic, but we were so alone in that moment. I watched my husband cry with despair and sadness over videoconference. He had been with Kate all week. He had nothing left. A bomb had been dropped in our lap, and we had no idea how to diffuse it and very little time to think about it.

I spoke up, finding my voice and stating what I had said all week long. “We want Kate home”, I said. “We need to think about this and we need the weekend as a family with Kate at home”, as tears fell down my cheeks.

The room was silent, because you know what? Nothing happens on the fucking weekend. TPN could not be arranged with CCAC. The discharge planning person from CHEO actually said, “we can’t do that over the weekend”. I looked at her incredulous and could not form any words. It was not a new situation with us, this obstinance, but it devastated me. I looked around the room for help, no one had anything to offer.

And then, our incredible Ste.Justine nurse, Karine, whispered in Dr.Duval’s ear that she would make it happen, and despite the head shakes around the table from GI that Kate was not stable enough, he also agreed to ‘make it happen’. Karine came up with a solution of sending Kate home with IV hydration. Over a 48 hour period she would be hydrated with key minerals added in to keep her stable. She would return to Ste.Justine on Monday for TPN, and that would give CCAC time to arrange TPN for home delivery on Tuesday.

I can never thank Karine enough or Dr.Duval enough. No one could have predicted what would happen next, but as things changed over the weekend, Karine had made it possible for Kate to be home. She cared enough about our little girl and our family to do what no one else would.

And so it was agreed, Kate would come home that afternoon, Friday, November 27th. I would drive to Montreal to fetch her and Brian, and we would make our decision at home as a family about what to do next, and return to Montreal on Monday, November 30th with a plan.