Tag / medical odyssey

by Julie

Year 3 Day 0

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

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

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

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

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

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

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

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

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

12:00 p.m.

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

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

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

2:00 p.m.

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

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

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

Late evening Day 0

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

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

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

Meanwhile in Kate’s room

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

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

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

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

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

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

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

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

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

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

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

Day 1 had begun.

by Julie

12 months, 55 days later

IMG_5478

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

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

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

It is powerful, and I am grateful.

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

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

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

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

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

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

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

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

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

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

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

 

Julie 

 

by Julie

The Journey Home – Part 3

On Saturday, November 28th, 2015 we left Ste.Justine for the last time with Kate. She had suffered a crisis, and the team had decided that any further intervention would not be helpful. The decision to undertake an experimental treatment for her graft versus host disease was now no longer necessary. Kate had made the decision for us. With the support of our Ste.Justine team, we organized ourselves to take Kate home, make her comfortable, and wait for what might come next. 

Part 3

As we walked the long passageways and corridors of Ste.Justine, toward the parking lot, we passed by so many people. I found myself wondering what they thought as we walked by. Was it pity I saw in their eyes? Concern? Shock? Understanding? I drew my attention away from them and inward, forming a bubble between us and them. I felt exposed by the intimacy of our situation, and by the decision we had just taken to take Kate home. Possibly to die. “These people should not be witness to this”, I thought to myself. “They don’t know us. They can’t imagine what we have been through”. I imagined them there with a broken arm, or recovering from a minor surgery. In those moments I was angry and jealous all at once. Their journey would be nothing like ours. I didn’t want them watching us at this most intimate and private time.

Our van ride home was something I remember vividly. Kate was most comfortable in a stretched out position. We couldn’t seem to make her car seat work, so I simply unbuckled it and tilted it on a big angle so that it was almost laying flat. I readjusted the lap belt to secure it again, but it was clearly not secured properly. I gave it a thought for a moment, and then decided to myself “Did it really matter?”. I stowed the DNR letter Dr.Duval had given us in the dash.

Kate loved her van. She loved going for drives. Over the past week in Montreal with Brian, she was less interested in her daily walks outside, so she and Brian made the trek to the parking garage and would drive around the city of Montreal. A ritual they did back at home in Ottawa. Brian would have a random errand to do, and he would take Kate with him. I could see the relief on her face and the comprehension that she was going home as we arranged her in the van and made her as comfortable as we could.

Jack sat in the back with her as he always did. Now feeling a responsibility to watch over her, and let me know how she was doing. Something that was not new to him. He was also her DVD manager, and located her Dora Christmas video for the ride home. I remember asking my 11 year old to “check and see if she was still breathing”. Even as I remember this now, the enormity of that request hits very hard. And he did it, “Yes, mom, she’s ok.” he said. “You’re ok, right Kate-O”, and then would go back to watching his movie (Dora Christmas had long been ejected and replaced).

I think we all felt a sense of release on that ride home. Brian and I talked about the fact that we wouldn’t be making this drive to Montreal ever again. It was surreal. “We went to Montreal for 9 months and all we got was this fucking t-shirt”, we joked. We wanted to hate that city, where there had been so much pain and suffering. Where our lives had been ripped apart. Even now, I can’t think of Montreal fondly, or without a sense of sadness and grief about the city and that highway. As we drove, the sky was overcast, the traffic was light, Kate slept almost the entire way home. She was so peaceful, the morphine was timed just perfectly.

Brian and I discussed whether or not we should go to Roger Neilson House and seek support there for Kate. It was an option. We would be well supported, Kate was known there, it was familiar to us, and there was an entire team ready for her. In the end we decided to head home. We had promised her home, and though we were uncertain about how it would all come together, we thought it was the best decision for Kate and our family.

As we pulled into our driveway, Kate started to stir and wake. But she was not happy. “No no, van van”, she said. She did not want her van ride to be over. She did not want to get out. I paused for a moment thinking, what could it hurt to drive a little longer, but I wanted to get her in the house and settled. I thought we could take her out for a walk and fresh air, and Dr.Splinter was on his way to our house to assess Kate. “Kate, we’re home baby, we’re home”, I signed and said to her. I thought she didn’t understand that we had made the trip to Ottawa. Perhaps she  thought we were back at Ste.Justine. She seemed to realize and settled, allowing me to pick her up and carry her inside.

We arranged Kate on the couch supported by pillows. I wasn’t sure of the most comfortable position for her. Being at home changed things for me. There is something about being out of the institutional environment of the hospital setting that is freeing to your emotions and thoughts. This was our personal space, where we felt safe and where people were our guests and not the other way around. I could relax, Brian and Jack could relax, Kate could relax. There is something that you cloak yourself with when you are in the hospital, constantly interacting with veritable strangers during the most intimate of times. You are on your guard. You need to show restraint and control under the most incredibly stressful situations. You need to control your emotions, because crying too much, or being angry and frustrated can will compromise how you are treated and how your child is treated. You need to be on your guard – ask the right questions, smile and be kind (when you want to be anything but). You are better received when you are the ‘good parent’, the ‘strong and cooperative parent’, ‘the organized parent who asks the right questions’…’the attentive to the physicians and nurses parent’. I was very good at it, and I was sooo tired of it. I wanted to let it go and be direct and honest in how I was feeling, and what I felt about what was happening to Kate. I wanted to sink into my couch and not a plastic hospital chair. It didn’t happen right away, I had worn the cloak for far too long, but being home helped considerably.

Dr. Splinter arrived soon after we got home and had Kate settled. He was there to assess the situation, assess Kate, and determine next steps. He arrived with a ton of medications, and nurse from CCAC whom I had never met before. She came unprepared with no supplies, and I honestly didn’t give her a second glance – even now, I can’t even remember her name. I didn’t like that she was there. She was a stranger at the most intimate time. I chose to ignore her and to reconsider her if and when I actually needed her help.

I am not sure what Dr.Splinter and Dr.Duval discussed before we left Montreal that morning. I know they spoke and I assumed that Dr.Duval was clear about Kate’s condition. Unfortunately what happened over the next few hours was extremely stressful and caught us all off-guard.

It quickly became clear that Kate’s oral dose of morphine was not adequate to manage her pain. She was likely not absorbing it properly due to her GVHD, and her pain was not being well managed. Kate had also been on a morphine pump for the previous 18+ hours, and I had made the assumption that a morphine infusion would be waiting for us when arrived home. It was not, and it had not been ordered. Dr.Splinter’s plan was to continue with oral morphine and ‘see how she does over the next couple of days’.

A prescription for an increased dose of morphine was quickly written, but it required one of us to run to the pharmacy to fill. I was not willing to leave Kate, so Brian set out to pick it up. The prescription was for a higher concentration of morphine not often carried by regular pharmacies. As we waited for Brian, he went to three different pharmacies before he could find one that carried the concentration of morphine Kate needed. The lovely woman at the counter asked who the drugs were for, “My daughter”, Brian replied. “Oh, has she had a dental surgery?”, the lovely naive idiotic lady asked. Making the assumption that this is what the morphine was needed for. Brian never answered her.

As we waited for Brian, we talked about Kate’s pain management. I felt she needed a morphine pump as soon as possible. Slowly increasing her oral dose of morphine was discussed, and adding a subcutaneous access for additional pain management was also decided upon. However the CCAC nurse had not brought any supplies to do a subQ, and she wouldn’t be back until later that evening. She had spent her entire visit trying to figure out how to hook up Kate’s pump to her PICC line so we could administer the IV fluids that Ste.Justine had sent home. I finally took the pump from her and did it myself already very familiar with it. With no supplies and nothing to contribute, she left and said she would return when the morphine pump arrived.

I can remember feeling confused, unsure about how hard to push for the pain management I knew Kate needed. I remember Ste.Justine’s promise to us that they would never allow Kate to be in pain and suffer, and they had been prompt with any requests we made for pain management. This situation wasn’t new to me. I was unsure about the increased oral dose of morphine. I wasn’t loud enough with my concerns. It was a lesson I should have already learned. Dr. Splinter did agree to order the morphine pump and sent the requisition off to CCAC that afternoon.

The next few hours were a blur of administering medications and managing Kate. Kate spent the afternoon on the couch in the living room. Sometimes awake, but uncomfortable and other times sleeping. Brian had arrived home with the morphine only to leave again. He wanted to get Kate a Christmas tree, and because she was not allowed a real one (due to infection control and possible mold from a real tree), he was off to Canadian Tire for a fake one. My parents arrived to see Kate. Sunita left with a promise to return. I thought I would take Kate outside, but only managed to get her boots on before realizing it wasn’t going to be possible. Kate refused to let me take her boots off though, so she had them on as she dozed in and out of consciousness on the couch that afternoon.

Sunita returned and we thought that Kate might want a visit from her daughter Anika, one her best friends. Kate was somewhat awake and when we asked her about Ani visiting she said “Yes”, and signed “Ani”. By the time Sunita returned around 5 p.m. with Ani, Kate was asleep again and couldn’t be woken. Her Christmas tree had also arrived and was hurriedly put together and the lights turned on. The room was overwhelmingly full of people Brian, Jack, my parents, Sunita and her kids, Dr.Major who had stopped in, and Stephanie who was helping me care for Kate. Kate looked at the tree briefly, but the reaction was not what we had hoped. Kate was working on just coping with her pain. I felt like I was playing hostess. It was too much.

The house became quiet again, and I was alone with Kate and my friend Stephanie. Brian and Jack were out. Dr. Splinter had left with instructions to call him if needed. He would be an incredible support to us over the next couple of days. As the evening passed, Stephanie and I administered medications to Kate and quickly became overwhelmed with her pain management needs. The morphine was not working. I made phone calls to Dr.Splinter who adjusted Kate’s morphine dose up even further. I called CCAC to inquire about when the morphine pump would arrive as it had been ordered that afternoon by Dr.Splinter. I was told that the order had simply been placed in a “To Do” pile, and that it had not been marked as urgent. It was the weekend, nothing was going to move quickly at CCAC. I was told the pump should arrive around 11 p.m. (give or take). I looked at my watch, it was 6 p.m.  I was incredulous, and tried to remain composed with the woman on the phone. “My 8 year old daughter is dying. She is in incredible pain. We have been waiting for this pump all afternoon. We need it now”. I did my best to be calm and direct, and not to scream in frustration at this impassive person on the phone, but I cried and my tears of grief and frustration fell. “Please”, I said. “She’s just a little girl”. Gratefully the woman from CCAC finally got it. “I can have it there for 8:30 p.m.”, she told me.

There are many things that haunt me about the last few months of Kate’s life. That afternoon is one of them. Watching her suffer and feeling like I did not do enough.

Over the next 2.5 hours, Stephanie and I nursed Kate. Steph became a pharmacist and nurse drawing up meds like nobody’s business, and recording what we had given and when as we adjusted morphine doses, our own version of a MAR (medication administration report). Kate stirred and showed obvious signs of discomfort, but she did not wake. Dr.Chakraborty visited, and I could tell he was disturbed and so incredibly saddened by the state Kate was in. I didn’t have much to say to him. I tried to be comforting and reassuring. I’m not sure why I felt responsible to do that, I just did. Dr. Chakraborty was Kate’s metabolic/genetics doctor. He was our closest advisor about undertaking the bone marrow transplant. I knew this is not what he wanted for her – he said as much.

At 8:30 p.m. the morphine pump arrives and the CCAC nurse (Sarah?) along with it. This is a pump she knows how to operate and she quickly gets it hooked up to Kate’s PICC. She also asks me to put some Emla (skin numbing cream) on Kate’s tiny tricep area so that she can install a subQ access. This, I am told, will be needed for further medication as “things progress”. I am so focussed on the morphine and making Kate comfortable I ignore the whole idea of a subQ port and stored that in the back of my mind. I warm up a bit to Sarah, and she goes off to check our hastily written MAR and organize further subQ medications that might be necessary overnight. She left a couple of hours later. I don’t remember speaking to her.

Around 9 p.m., Kate seems more settled and Stephanie and I decide to move her to her bedroom. We carefully lift Kate together and carry her upstairs, Brian followed us with her IV pole. We gave her a little sponge bath, and change her into her pyjamas.

I can’t remember much about that evening. I planned to sleep with Kate in her bed, Brian had gone to Sunita’s to pick up a small futon mattress. He and Jack are going to sleep on the floor in her tiny room. Somehow we made it work.

There is some sleep, not enough and not comfortable, but Kate is home and she is comfortable.

by Julie

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.

by Julie

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.