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.
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.