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.
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.
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.
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.
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.
Yes, tears for you, for Kate, Brian and Jack.
Tough to read, tougher to write, and seemingly impossible to go through. Yet you did and will continue to do so. Your strength is unimaginable.
Thank you for writing this Julie, thank you for helping us to understand.
You are a brave woman, Julie. Writing that and sharing it was an act of pure courage and love.
Oh Julie. No words other than thank you for being authentic and sharing your story