May 16th, 2012: Bronwyn was on a flight but not for home. She was being airlifted to Sick Kids Hospital in Toronto. Bronwyn was now 15, having celebrated her birthday in March with the only visit home she had had in the last four months. Just days before the 16th we we had been looking forward to go back to Thunder Bay. She was so near the end of treatment. Now all that was forgotten as Barry and I sped towards Toronto down the highway. Just before we said goodbye to Bronwyn in ICU in the Children’s hospital in London that morning the doctor told us there was no room for us in the helicopter and Bronwyn might not make it through the 45 minute flight.
Despite the fact that it took Barry and I at least two hours to pack up necessities from our Ronald McDonald House room in London and drive to Toronto, we arrived at Sick Kids just as Bronwyn did. The first thing we were told was she would die. Her heart was too weak and her blood counts were too low to install any life saving device like ECMO. After so much chemo it would take weeks for her blood counts to recover and she didn’t have weeks. This news sounded impossible to our ears. Bronwyn had come through so much in four months. Is this really how it would end? Was it all for naught?
If you spend any time on the second floor of Sick Kids Hospital, the ICU floor, you will often see distraught parents. Beyond the pale skin and black bagged eyes of most in the hospital the parents here are often completely overwhelmed. It is common to see adults sitting in chairs, leaning against walls, aimlessly walking while crying. Some cry silently, tears streaming, but most are beyond any self control and weep openly, audibly, muttering distressed questions of why that are never answered and declarations of how unfair the situation is. On May 16th that was Barry and I. I was completely undone. I don’t remember details just blurs of time in the hallway crying, holding on to Barry, pounding his chest, a nurse fetching us chairs because I didn’t have the strength to stand anymore.
During brief moments of clarity I made phone calls. I called one of my sisters and told her Sinead needed to be there “today!” Sinead was back in Thunder Bay, staying with friends as she finished grade 11. I don’t know what went on to get her there but Sinead arriving at 9pm that night was the only bright spot of the day. For two hours before her arrival I was on a bed in a family room [little bedrooms on the ICU floor for parents that require a key] in a fetal position trying to eat a banana, the only thing I had eaten all day since the half a bagel I had before being informed that Bronwyn was in distress. I felt bad that I had left Barry and Bronwyn but I literally had no strength. It took everything in me to get to that room and I didn’t want Bronwyn to see me like that.
The hard part was telling Sinead what was going on. She, of course, suspected something bad but it was like digging at a stab wound to tell her Bronwyn could die. We cried, pulled ourselves together and went to see Bronwyn. Even though she still was critical her condition had been stabilized. We felt pretty good about her for the next couple of days, believing she was in recovery mode. The chemo just had to work its way out of her body and her heart could recover. Well, it was the best case scenario given to us and we grasped it.
Bronwyn was hooked up to practically every IV heart med they had and was on CPAP, a mask on the nose that forces oxygen into the lungs, doing some of the work of breathing, thus taking pressure off the heart. They kept her dehydrated for the same reason. They measured every liquid that came out and went in, including IV meds. She had to have less fluid going in to her body then going out.
Then came the Shitty Day, as we have come to call it. May 21st, the day the doctors told us again that Bronwyn would not live. Her condition was not improving, in fact she was becoming more dependent on the meds. They had tried to lower them to see how she would do but ended up increasing them…..and increasing them. And then there were the persistently low bloods counts. She had no white bloods cells [to fight infection] and very low platelets [for blood clotting]. The doctors were doing all they could. We were told, “Either you tell Bronwyn or we will.” She had to know. She was old enough to know and make end-of-life decisions.
I felt destroyed but something inside me rose up and I knew instantly I could do it and what to say. It was like everything I had ever done, experienced and learned, everything I had become was for this moment. This was the moment I had been born for.
I took Bronwyn’s hand and looked into her brave eyes, now full of worry, and said, “You know how sick you are. You can feel it.”
“Your heart is very weak and you blood counts are so low that the doctors can’t operate and put you on life support.”
She knew exactly what I was talking about.
“They are telling us you will not live. They are saying your blood counts will not come up soon enough to help you because you have had so much chemo.”
Tears welled up. Her face went red. We were all crying together. Barry did what he does best and pulled out his camera. He wanted to capture this moment. It might be one of the last with Bronwyn. We just didn’t know.
I told Bronwyn her birth story, how happy we were that day, how wonderful life had been with her, how much we loved her and that 15 years with her was just not enough.
Suddenly Bronwyn stopped crying. She became very still and quiet. A peacefulness filled the room. Bronwyn looked up at me and started comforting ME.
“It’s ok, Mommy. It’ll be ok Mommy.” We were all taken aback. Her strength and caring for others was breathtaking. Weeks later Bronwyn told me what happened in that moment. She said she heard a voice in her head, a male one, not her own, telling her, “You will not die from this.” She knew from that moment on she needed to do whatever was necessary to get through this.
And she did! For the next two weeks her health remained status quo for the most part. How she dealt with the pain, weakness and dehydration amazed everyone. She devised ways to satisfy her body’s craving for liquid without breaking the rules. She always had a wet washcloth in her hand and would rub her bald head and face with it [and never sucked on it despite the nurse’s expectations. I had to remind the nurses more than once that Bronwyn was 15, not 5, and not interested in endangering her life]. She would ask for a bowl of water to put her hand in. She would exhale like she had just lowered herself in a jacuzzi when her hand hit the water and would splash in it like a toddler. She then asked for a spray bottle. It became her best friend.
For two weeks Barry and I never left her side. We took turns sleeping at Ronald McDonald House Toronto, the other sleeping in a chair by Bronwyn’s bed. Cots are not allowed in ICU. They take up too much room and could hinder access to Bronwyn in an emergency. Sinead came to the hospital in the afternoons and evenings. It was tough but we found ways to enjoy each other’s company. A nurse made a card holder for Bronwyn so we could play Sticks and Pennies, her favourite card games. Friends and caring strangers sent packages
and uploaded videos.
It was the most difficult two weeks of our lives but we still found happiness, laughter and smiles.
On May 30th I woke up at the House, got out of bed and stepped on something. I looked down. It was clothes. I looked around the room as if seeing it for the first time. There were clothes, suitcases, towels and I don’t know what-else everywhere. I realized we were not coping. I had no idea how Sinead was coping, what she was doing or what she was eating…..I didn’t know what I had been eating. It was all a blur. I called one sister, she called another and another. They would be there ASAP. The next night, as they were arriving, Barry and I were taken from Bronwyn’s side and told again that she would not live. Even though her blood counts had begun to rise it was not quick enough. In their experience blood counts will fluctuate for weeks, even months after the kind of chemo Bronwyn was given. She had hours to days left. We knew Bronwyn’s health was failing. We had become experts at watching the monitors and our concern had been growing all day.
I spent the night with Bronwyn. The next morning blood work was done before more than a dozen doctors surrounded Bronwyn’s bed. They had just had a meeting about her. Barry and I flanked her bed and held her hands. The doctor who had told us the night before Bronwyn would not make it was sitting in front of us with the news. Bronwyn’s blood counts had jumped overnight well into the normal range. They would operate!
The VAD: a ventricular assist device is a machine that works for the heart. Bronwyn would be getting an LVAD, a turbine pump inserted into the left side of the heart, attached to a battery pack and controller outside the body by a driveline. This VAD is small, portable and a patient can actually leave the hospital with one. They are built to last years if necessary. It was the perfect solution for Bronwyn. She would not be eligible for a heart transplant until two years post cancer diagnosis. [That’s right, she has to be cancer free for two years.] AND Bronwyn would be the first patient to leave Sick Kids with one if all went as planned.
The doctors still wanted to give Bronwyn every chance to recover on her own. The less invasive treatment there was the better. The VAD would be installed only if absolutely necessary.
My knitting was kept close at the beginning of these two weeks.
Quite often in my lap.
Quickly thrown aside when Bronwyn was awake or something was being done to her.
Just before we left London a package arrived from knitpicks.
I had plans for it and found a way to wind it into a ball on the medical cart in Bronwyn’s room.
After the Shitty Day there would be no more knitting. My mind was too consumed. It wasn’t until VAD Day I found the release to pick up my needles again. Stay tuned for chapter three.