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.
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.