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.
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.
Oh Julie – your bravery and courage in writing these words are so heart-rending and amazing all at once. This chronicaling is important though I know it takes you to a place of utter despair and pain. Huge hugs to you and Brian and Jack. We who remain must go forward and I know how ridiculously hard that is.
Thank you Ruth. Thank you for reading and being a witness to our journey and Kate’s life.
“Nothing guckingvhappens on the weekend”. ENOUGH!! It’s 2016!
Thank you for sharing Kate and your family journey with the world. We are all the better for it.
Right?! I am still absolutely incredulous at this fact after 9+ years.
I said this once to a physician who wanted to admit Kate on a Friday afternoon. “Why?” I asked. “What will you over the weekend. Nothing happens here on the weekend”. The physician took offence. Whatever. It’s the truth.
I couldn’t imagine what you where all going through and still can’t. Leaving this earth at such a young age brakes my heart. All I wanted is for it to end the suffering when my daughter Isabelle was sick, and still we have obstacles almost every week. This journey called life is one of the hardest thing. But we got to remember is that Kate was surrounded with loving family and friends through her ordeal. What more could’ve we given her? She went in peace and is still in our hearts. You are the strongest family I know. Beautiful words Julie. My heart goes out to you. ❤️❤️❤️
Nicole, I am so grateful that Isabel survived that very difficult time in ICU in Montreal. I remember meeting each other as walked between the hospital and Ronald McDonald House, and the look of pain on your face, and exhaustion. You were so scared, but so strong at the same time.
We wanted the best for our girls. And the journey we’ve both had with rare disease is something unimaginable – and so unfair.
I wanted the best for Kate, and thought we were making the best choice for her. The GVHD and how her body reacted to the treatments was so rare, and confused the team. I feel like I should have known.
She did go in peace. But I will never be at peace. It’s the burden of being her mom.
aahhhh Julie i am writing this and crying at the same time,what if this happens to Max what will i do how will i go on ,maybe God will give me strength i am so sorry Julie i still miss Kate i fell in love with your little girl and you and Brian ,Jack and your mom are always in my heart love you guys <3
You will do what you need to do Terry. Just as I did. There is no formula and nothing is predictable with our kids.
Max is not Kate. His journey will be different and I hope and pray he has more time here with us and that it is good time.
((((((Hugs)))))) Julie, I think of you and your family often… Thank you so much for sharing Kate’s life with us.
Thanks for being a witness to our story Jil. Please share Kate and let people know about her. It’s the best gift you could give me and her.
Julie if you would like to meet for a coffee, I am available this week – whatever time works for you. I feel for you and if I can listen-if that helps at all – I am here.
Julie, thank you for sharing your journey with the world. You are a brave mama and as you talk about the exhaustion I think of every hospital visit we’ve had with our little guy. Even a few minutes into the building and I feel wiped out.
You have so much strength Julie. I cant imagine how difficult it has been for you to go through all this and relive it through your words. So many tears and memories are flooding back to me. I remember the day of the meeting. I remember talking to Brian right after and being told that Kate was going home. I saw the tears streaming down his face and feeling so helpless. I helped him pack for home not knowing it was Kates last time with us all.
You are all always in my prayers.
We are so glad to have met you Maimoona. Thank you for all you have done for our family and Kate. We treasure some of the things you and Kate made together.