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.

Linked at the Cellular Level

My friend Donna Thomson, an author, fellow blogger, mother, often posts interesting articles on Facebook and Twitter that grab my attention. She writes insightful pieces about caregiving at all ages, respite, networking, and she shares intellectual articles about mindfulness, resilience, courage…
Today Donna shared a post by another author, poet and blogger, and as with many she shares, I found it truly inspiring.

Mother & Child Are Linked At The Cellular Level

Curious, I thought I would explore this phenomenon further.

Fetalmaternal microchimerism occurs where cells from the fetus pass through the placenta and form cell lineages within the mother. Amazing. Various types of cells have been indentified including immune cell lineages and stem cells. The potential for these cells within the mother’s body are not yet fully understood but there are several hypotheses. What caught my attention is the thought that “fetal cells home to injured or diseased maternal tissue where they act as stem cells and participate in repair“.

As the author of the article says, “The cells of that child stay with her, resonating in ways that mothers have known intuitively throughout time”.

And I have felt this. When Kate was here, I had a sixth sense, a strong and honed intuition about her and when she might be starting an episode, or when something wasn’t quite right. It was more than the eyes in the back of head as some moms describe how they can sense when their child is up to no good. As many have said, and as we continue to discuss, Kate’s ‘clinical presentation’ was never textbook, but I could sense when something was not right. My connection with her was so strong. I believe that connection helped me to be a better advocate for her than anyone else, and helped keep her safe. I also believe that connection let me know when things were going terribly wrong for her. And there is no worse feeling in the world than knowing something is wrong, expressing it to those who should help, and not being heard. This happened time and again for Kate over her short life. The curse of being so rare.

At the end of her life, several days before, my mother heart and soul were both in a panicked state. I knew something was going terribly wrong for Kate. I felt her slipping away from me. Was it that connection between the two of us again? Her little cells tugging at my heart, my brain, my soul? All I could think of was getting to her, getting her home and being with her. Unfortunately that took a heart-breaking amount of work, but it became a sole focus. I knew that Kate knew. She was telling me with her words, “home, home”, but I also felt it, an urgency to comfort her and to support her. I had never felt Kate was dying before despite many terrifying experiences. Those few days leading up to her death, I could feel it. And as she left us, I could only describe a sensation of her tearing away from me. A physical feeling of being torn apart from another, and feeling that she was physically taking part of me with her. It was incredibly painful – physically painful. Like part of my heart was being torn away.

Did we also have a connection of maternal to child microchimersim? Was our connection so strong that I was also a physical part of her? Or was my heart truly breaking – another phenomenon that affects mothers who have lost a child called  broken heart syndrome. I think perhaps it was both.

 

Now that she is gone, I have described to those that are close to me that I can feel Kate with me and sense her presence. There are moments when this presence is particularly strong and I can almost sense her touch and hear her words. Is it her, a biological part within me, reaching out?

I take great comfort that science has proven she is a part of me.I believe the hypothesis of Kate’s fetal cells migrating to areas of injury to facilitate healing.

How amazing to think my own baby might be helping to heal my broken heart.

 

Julie

 

 

2016

Today is one of the hardest days since November 30th. On the precipice of 2016 and realizing Kate won’t be part of this coming year.

A good friend asked me if I would continue this blog. I imagine I will, but I am uncertain what it will look like and what I will write about. 2016 will be a year of change and finding a new balance in my life.

The past month has been full of sadness, pain, longing, regret, reflection, solitude, exhaustion…I think of Kate every moment of every day. I can feel her with me in everything that I do. Just as she and I lived our lives the past 8 years.

I am grateful for Jack. He is my anchor in all of the chaos of emotions right now. He needs his mom. That is a good thing for me. Yet another role for him that is too demanding – but he is wise beyond his years and he knows when I am sad and sidles up for a hug or to hold me (role reversal). Over the past 8 years, he has done so much, learned so much, and given up so much. And here he is – my little man – giving so much more of himself again while coping with the loss of his sister. Proud is not enough to describe how I feel about him. Awe maybe.

I am grateful to Brian. Stoic and kind. He gave me the gift of time with Kate after she passed. Respectfully allowing me alone to hold her and cuddle her and be with her over that night and into the next morning. He has let me grieve as I need to. Not questioning, not judging, nor hurrying me along.

Many of you wonder ‘how I am doing’. I am not doing well, but I am doing my best. I am moment to moment in my days. I don’t feel the need to explain why I can’t smile, or can’t find the energy to talk some days. I am grateful for the words of support from all of you. I am ok with this place of solitude combined with selfishness. I am doing what I need, when I need it. Nothing more. I am grateful to those who are holding vigil for me – who won’t let me be alone for too long.

The days are quiet and long. Kate took up so much physical, emotional, and intellectual presence every day. I hadn’t realized how much. I knew I was exhausted, but coming off of the constant lack of sleep, extreme vigilance, and adrenaline of caring for Kate has been physically and emotionally challenging.

Brian and I have a lot more time that we have ever had before. We’ve literally sat in the living room and stared at each other. We aren’t sure what words we should speak. What happened? Who are you? What do we do now? Someone should get up and do something, draw up a med, clean up vomit, change a diaper, do laundry, call/email a doctor…chase after Kate. I wonder how our relationship will be redefined over the coming months and years.

It feels like we are both waiting for her to come back – that we are simply having a little reprieve from the busy-ness of caring for Kate, like one of her Rogers House visit. We are are both waiting for her and to step into our caregiving roles again. We would both pick up that role again in heartbeat to be with her.  Then, like a heavy weight, the realization comes that she is not coming back. And the sadness hits again.

We have slowly emptied our house of medical supplies, medications and equipment. We’ve made gifts of treasured things to a few of her friends. Some things we still hold onto. Her room remains the same. Her favourite books, her puzzles, her Curious George stuffies and dolls, her clothes and sparkly shoes. I think that space will remain untouched for some time to come. It is a room I like to visit often – and sometimes I open the door in the morning just to say hello to Kate. I can see her there in her bed, hair tousled, face puffy from sleep, signing ‘Good Morning’. I can feel her presence in that room, and her ‘smell’ in her dresser drawers – and that is a good thing.

 

There are no words for the loss of a child. I’ve heard that said before by others. It is true. I was bold and confident in my belief that this would never happen to Kate. I believed in my heart that she would get through this. I believed she was different, that her strength and courage would pull her through. I believed if I was strong enough, determined enough and vigilant enough – I could pull her through. I was not naive in knowing this would be a very difficult thing for her, but I was shocked at her death. When she came home Saturday, November 28th, no one expected she would be dead 48 hours later. Not our strong and stoic Kate. I struggle with the worry that maybe more could have been done, and then remember the gift of getting her home, the shock of realizing she was dying, and supporting her in the last couple of days of her life.

Her death is a tragedy. It was not expected and it was not supposed to happen. I am still searching for the answers as to why.

She and I were a team. The last 8 years were an incredible roller coaster of love and determination. As much as I was her champion and supported her, she defined me, strengthened me, and helped me become the best version of myself. How do you lose and move on from a force like that in your life?

This is what 2016 will be for me. Learning how to move on, and if I can’t learn – then simply learning how to cope.

 

She was an incredible child. My own daughter.

8 years was not enough time with her. That is my biggest regret.

 

Julie

 

I invite you to watch Kate’s Celebration of Life Memorial from November 30th, 2015. 

 

Kate Drury – A Celebration of Life

 

In tribute to Kate – her Celebration of Life eulogy, December 12th, 2015.

 

IMG_1644

 

Thank you all for being here this afternoon to celebrate Kate. The love and support for our daughter over the past several years, and especially these past 2 weeks, has been incredible and it is a true testament to who she was, what she shared with her community, and the impact she has had on the world.

Brian, Jack and I are honoured that you are here to share Kate with us today.

Kate did not have an easy life. She suffered from an ultra-rare form of mitochondrial disease called SIFD – sideroblastic anemia, immune deficiency, periodic fever, and developmental delay. But we didn’t know this in the early days. When Kate was a baby – we simply knew she was unwell – and as her mom, I knew early on that something was wrong.

Kate’s development was behind, she was not doing the things other babies her age should be doing. She couldn’t hear me and wasn’t responding to sound or even to my voice. And then she started getting sick. We came to call these periods of sudden acute illness as her “episodes” and in the past 8 years she had more than 40 of these episodes that were acute enough to require hospitalization or day visits for intervention at CHEO.
I became not just Kate’s mom, but her medical advocate, her medical coordinator, her nurse, her caregiver, her pharmacist, and her therapist. We were determined to find out what was wrong with her and help her, but Brian and I were also focussed on supporting her to be a little girl and to have a full life of all the things a little girl should be part of.

Kate and I spent far too much time in hospitals. Kate regularly visited more than 15 different outpatient clinics at CHEO, as well as diagnostic imaging, day surgery, and the bloodwork lab (of course).
She was a fixture there and everyone knew who she was. She was the happy little girl, who ran the hallways of CHEO. She loved heading to the cafeteria to buy her french fries and to visit her friend Linda, or to the snack shop to get her bag of chips – and pay the lady at the cash on her own like a big girl. Everyone knew Kate, and she had a smile and giggle for everyone.

She spent time on 4East, 4 West, 5East and 4 North as an inpatient. Basically every inpatient unit of the hospital.She was invited to participate in the CHEO Telethon as a featured patient story in 2012, and it was an honour for our family to share her story.

CHEO became a second home for us – and it felt like family there. We definitely had very difficult times, but in 2009 when the Complex Care Program pilot began – we finally found a safe haven for Kate amidst the chaos of so many medical specialists, emergency room visits and admissions. We are forever grateful to Kate’s complex care team, Dr.Natalie Major and our nurse Christine who took on the role of navigating Kate through her episodes and supporting her complex medical needs. They have been part of Kate’s life for close to 6 years and their devotion to Kate and willingness to listen and work in close collaboration with us saved Kate’s life more than once.

Although Kate’s life was very medically focussed, she didn’t live that way. Vanessa Waters, Itinerant Deaf Teacher, recently wrote this post on Facebook:

“Kate didn’t choose many things in her life. She certainly did not choose her disease and all that came with it. She did, however, choose how she would spend her life. She had a choice in that and she chose well.”

Kate chose to be happy and joyful every day. Even when she felt unwell it was sometimes a challenge to know how sick or in how much pain she really was. Kate didn’t feel sorry for herself, she wasn’t sad…she was brave, resilient and happy.

Many people would comment that “Kate didn’t look sick”, and only those who knew her really well could pick up on the subtle ‘tell tale’ signs that something wasn’t quite right that day. Kate wouldn’t talk about it, or let us know directly.

Many of her trusted therapists, teachers and caregivers spent years helping Kate to develop her language – as a deaf child, we taught Kate to use American Sign Language, and with her cochlear implants (or her “ears” as she called them), we also worked on teaching Kate to listen and to speak.

A skill we all worked on consistently was trying to give her the words she needed to tell us or her doctors ‘where it hurts’, but she wasn’t interested in learning that. Instead she learned to talk about the things she loved – like swimming, gymnastics, school, her friends Ani, Lucy, Myah, and Matthew, going for walks to the park, drives in her van, going to ‘the House’ (as she famously called Rogers House), her favourite songs, and her brother “Jackie”.

Kate had a rich life – last winter she learned to ski – which made me incredibly proud as I realized I am not cut out to be a dance mom. She loved to go tubing behind the boat with her friends – and was known to throw herself off of the tube on more than one occasion, bobbing in the lake while we turned the boat around to pick her up.

She spent a lot of time at the Ottawa Gymnastics Centre from a young age and was adored by her coaches and staff there. I’ll never forget watching her jump on the trampoline last fall, and sending her off to summer gymnastics camp, and thinking back to the days when we wondered if she would ever be able to walk.

Kate loved the water. We spent many afternoons at the JCC, our neighbourhood pool. Kate would walk straight to the edge and jump in – often into the deep end – fearless. She was so confident in herself that she would swim back to the surface – often she swam down instead of up. We never discouraged her, but instead followed her lead. I think she gave more than one lifeguard or swimming instructor a heart attack as she jumped in and sank, waiting for someone to pull her back to the surface by the straps of her bathing suit. Jumping off docks, jumping off diving boards, careening down waterslides…and even cliff jumping (or being thrown off the cliff). Kate embraced it all. If the other kids were doing it, she wanted to be doing it to. She just needed a little support to get there.

Kate was so proud to attend school and loved being with the other kids. We are so grateful for the support from her days at Westboro Preschool; her first day at school at Broadview where she strode into the school yard with her big brother Jack; and her short year in the Deaf and Hard of Hearing Program at Vincent Massey Public School.

School days were short for Kate, as her body was often exhausted. She would come home after her half day and often be asleep in the van when she was dropped off. Many times, I would be called to the school to pick Kate up – or I would call in the morning to let them know Kate wasn’t up for school that day.
While Kate found many skills difficult, she was keenly interested in learning and eager to be taught. She often surprised us with the skills she picked up – especially when she started to speak french while we were in Montreal these last 9 months, proudly signing ‘thank you’ to her doctors and nurses and then repeating ‘merci’ in french.

Kate loved many things: Dora, Curious George, princesses – especially Cinderella; her birthday, or “Happy Day” – which could have been everyday if it was up to Kate; singing – and sitting on her Dad’s lap in the office watching endless episodes of The Voice (…it’s a singing competition). Kate loved the grocery store, and helping to pick out tomatoes (I hate tomatoes). She loved going for rides with her dad in his truck or in her van. She loved to sit in our front window and watch the kids walk to school. She liked going to Jack’s hockey games, though she never watched and someone always had to chase her around the rink. She liked neighbourhood parties with our friends, and dancing – and she came to especially like Santa. He would have been a huge hit this year.

We often said that people underestimated Kate – what she understood, what she was trying to express, and what she was capable of – but Kate never underestimated herself.

Kate’s brother Jack was and still is an amazing big brother. Jack grew up with an unwell sister – he didn’t know anything different. There were many demands placed on him over the past 8 years, and the last 9 months have been very difficult. But he has never been frustrated or resentful of Kate. He has supported her in anything she has done, and has always been by her side. One of my favourite memories is of Jack hauling his sister on her toboggan around the field across the street. Encouraged by her giggles and requests of “more – more”. Pulling her behind his bike in her chariot – being gentle with the bumps. Cuddling with her on the couch, while they watched Dora’s Christmas – at anytime of the year. Teaching her fist pumps and gently ‘wrestling’ with her – and tolerating her hair pulling and biting. Jack has always been a kind and empathic boy. He said to us that after Kate passed “Kate will always be with us.”, and I know that is true – especially for him. She has left a huge imprint on his heart.

The last 10 months of Kate’s life have been incredibly challenging. She spent most of her time at the Centre Hospitalier Universitaire Ste.Justine, in Montreal in protective isolation following her bone marrow transplant. It sounds gloomy and lonely, but it really wasn’t for Kate. It was hard on our family, but Kate made her days fun. We spent endless hours making pasta out of play dough, playing ‘groceries’, endless puzzles, playing with stickers and cutting out hearts. When Kate could leave her room there were moments of playtime in the hallways in a little orange car from the playroom, or riding around on a ‘big wheel’ trike. Over the summer, we would leave the hospital for afternoon walks outdoors, exploring the surrounding neighbourhoods and parks.

Kate loved her doctors and nurses at Ste.Justine. She had name signs for her bone marrow transplant doctors and enjoyed teaching “Dr.D” and “Dr.B” and Dr.Teira and Dr.Cellot how to sign.
She was silly with her nurses and full of hugs and giggles. And they loved her back.
Kate would cheer and clap when a mini-wheelchair or gurney would arrive to pick her up for yet another x-ray, or ultra-sound…or a trip to install another PICC line. And she would wave at her ‘fans’ at the nursing station as we wheeled her past.
She matured and grew over those 9 months – and everyone remarked on how much little Kate had grown over the time she spent there. 
L’amour et le soutien de notre équipe de Ste.Justine avaient un rôle énorme dans ce que et nous serons éternellement reconnaissants pour le soin qu’ils ont pris de Kate.

Kate had many friends and champions. She had a smile and giggle for everyone and had a way of making everyone feel like they were the most important person in the world to her. She definitely had her favourites:

  • Tall-Steve who would be silly with her. Take her for impromptu walks. Let her drive the boat from his lap. And help her to ‘cliff-jump’ by hauling her up a rock face on the Big Rideau and throwing her off into the lake below.
  • Shawnee her gymnastics coach who tirelessly chased her around the gym and made Kate feel like the most accomplished gymnast by lifting her and supporting her on balance beams, bars, rings and trampolines.
  • Kara her caregiver who took Kate on endless shopping excursions and adventures – grabbing a box of french fries or chips along the way.
  • Sunita who helped her develop such a strong friendship with her daughter Anika. Who would be silly with her when her mom was tired. And who taught her how to do the ‘can-can’.
  • Stephanie who I credit with teaching Kate to say “Love You” – mostly because she wanted to hear Kate say it to her every time she left after one of her Montreal visits.
  • Her friend Kat from Rogers House who Kate adored. Kat made her feel special and loved and was ready to entertain Kate with endless crafts, salad making and big bubbles baths during her weekend stays at ‘the House’.
  • Kelly, her auditory verbal therapist at CHEO – who worked so patiently with Kate over 5 years and whom Kate adored. Acquiring language wasn’t easy for Kate. It was hard work disguised as play, and Kelly guided Kate into the world of sound, but also supported her in communicating with ASL.
  • And her ‘Grandy’ and ‘Bana’ who played the ultimate grandparent role in supporting Kate during her hospitalization, while being silly and fun and surprising her with endless “Happy Day” gifts.

And what I realize in beginning this list is that it is endless. Many of you have fond memories of Kate, and when you take a moment to reflect on them, I will bet they make you smile.

Kate loved everyone and she was loved back. Fiercely. That was her gift to others. She made people smile and brought them joy. She made everyone feel like they were her favourite person. Even in her most difficult moments, she would often be able to find a smile.

The decision to undertake a bone marrow transplant to treat Kate’s disease was not an easy one. Her brother, Jack was her perfect match, something that was rare – and Jack never hesitated to be his sisters bone marrow donor. He was brave and loved his sister unconditionally. It was an impossible decision for Brian and I, and as Brian said, the only perfect outcome would have been Kate surviving the bone marrow transplant and enjoying a healthier and longer life.

Kate’s BMT resulted in multiple complications, and though she was strong and she fought hard, in the end Kate’s body was tired. In the 6 1/2 months of her initial hospitalization in Montreal, Kate never asked for home. She accepted where she was and seemed as focused as we were on getting better. When she finally did come home in September, she amazed us all by rallying and improving – but something changed in the last few weeks. Our Kate was quieter and seemed tired. She continued to shine, but she had started to ask for home more and always wanted Brian and I close. “Come” she would say to us, even when we were standing right next to her.

We were faced with a very difficult decision when Kate’s graft versus host disease recurred again two weeks ago. We asked to bring Kate home while we tried to face yet another impossible choice – whether to undertake a very difficult treatment for the GVHD or whether to let Kate be supported palliatively. In the end, Kate decided. She took the burden of that decision from us. Her condition had quickly deteriorated and she made it clear that she wanted to come home. And we are so grateful that we could do that for her.

Kate spent her last few days supported by family and friends who loved her. She was never alone – someone always had her hand – there was someone with her to keep vigil at all times. Brian, Jack and I slept in her tiny room – crowded on the floor, and I in her bed. We nursed her, and comforted her, Brian slept with his hand clasped in hers.

And though she had incredible support at the end of her life – in the last moments it was just our perfect little family gathered together with Kate. Just the four of us – telling stories, sharing funny videos, laughing at Kate’s unforgettable belly laugh. We played “Fight Song” for her – and we cried – and we told her how much she was loved – that she would never be alone – that we would ALWAYS be with her. The terrible pain we felt in those moments was our wise Kate, taking a piece of our hearts with her. She knew we wanted to be with her always and our smart little girl took a part of us on her journey.
Kate’s life has had an enduring impact. She brought international communities of medical specialists and researchers together. The discovery of her rare disease and how it has been managed and treated has literally changed the lives for other children and families here at home and around the world.
What an incredible and beautiful legacy for a little girl.

I will miss her every day of my life. Her loss is an unimaginable pain.
I will miss her 2-arm squeezes, her “I lub you’s”, and her butterfly kisses on my cheek. I will miss her signing “good-morning”, her fine blonde hair, sparkly t-shirts, and her famous belly-laugh.

A person like Kate needs to be remembered. She has literally changed the lives of others for the better. She was the embodiment of what is right with this world and what we should all strive for; courage, strength, joy and a love for life and others before anything else.

That will be part of her legacy, and I plan to live it for her as best I can.

I am so honoured to be Kate’s mom.

 

“Goodbye my dolly”