Penn the Brave

Nothing can prepare you for losing your child. I foolishly thought if I had an extra day, week, month, it would ease the pain. I can tell you now, it does not. It does not make things easier. When I look back, there is really nothing no one could have done for me. I needed a treatment for an incurable disease. I want to turn back time before this nightmare began. I desperately wanted my old life back.

Selfishly, I asked Penn to stick around just a little bit longer. Although she was tired, in pain, no longer herself because her cancer had taken over, there were a few special dates I asked her to be here for. I asked her if she could please be around for Paigey’s birthday, their joint birthday party on June 12th, and on Father’s Day.

Sister love.

Being silly with daddy. Easter 2022.

One of the last story times, girls had together.

Penn made sure she was there. She kept her promise. After our Harry Potter themed Father’s Day brunch, Penn was ready to go. It was all a blur. I frantically called Nicole, who has been Penn’s palliative nurse since the very beginning. I begged her if she could please come over. Penn’s health had turned for the worst. Penn had to be administered all the emergency fentanyl doses we had to keep her comfortable. We had to insert a GI Tube for her meds. Nicole inserted a line in her stomach just in case for her medication. It was all in vain. It was Penn’s time to go.

Sheldon and I called our family members so they could say their goodbyes. We made sure someone was always with Penn, holding her hand, talking to her, trying to comfort her as best as they could. Nicole became, once again, Penn’s full time palliative nurse. She administered all of Penn’s pain medications, sat in during phone calls with Penn’s palliative med team, and took care of Sheldon, Paige, and I too. She made sure we ate, we drank, and explained what was happening to Penn and the signs we should look for, when she would be close to dying.

Nicole was there at the very beginning. She witnessed all of Penn’s seizures, especially the one that scared us so much we left to Rotary Flames house. And once again, before Penn died, she witnessed another one of Penn’s large seizures. Penn barely talked anymore, and she could no longer see, but she asked for Sheldon to hold her, despite it being so painful from all the tumours down her neck and spine. After a few minutes of Sheldon holding Penn, she screamed and had her biggest seizure yet. Just like the first time she had her seizure back on March 12, Sheldon was holding her. Penn instinctively knew it was going to happen. She wanted to be comforted and held by Sheldon, because she was daddy’s little girl.

As a mother, intuitively, I had a feeling when Penn was going to go. It would be in the middle of the night, when all of us were sleeping. She wouldn’t want us to make a fuss when she passed. And she would go peacefully. Nicole administered all of Penn’s medications to keep her comfortable. At one point Nicole thought Penn would stop breathing, so she sat in front of Penn, counting her breaths, seeing her chest move up and down. After a few minutes, Nicole decided to go downstairs and try to catch some rest until the next set of medications had to be administered.

I only drifted to sleep for a few seconds. That’s what it felt like. And at 2:52 am, while Sheldon and I, each held one of Penn’s hands, she passed away peacefully. Penn died on June 21, 2022, the longest day of the year. When we realized Penn was no longer breathing, Nicole must’ve felt something too, because before we called for her to check on Penn, she was at the door, with her stethoscope in hand. She confirmed Penn had no pulse, no heartbeat.

At the time, three things came into my mind. I was relieved Penn was no longer suffering. Secondly, I was so proud of her. She was so brave having to confront illness, treatment and ultimately death, at the tender age of five. And lastly, how much I was going to miss her.

When she passed away, she was smiling. I like to think she was also relieved that she could be free to run, walk, grab ice cream, whenever she wanted. We spent five hours with her before I carried her, one last time, in her fox blanket before the transport team took her. It hurt so much to think she would never set foot in our house again. She passed away at home, exactly what she wanted. Not at a hospital, not at a hospice. She wanted to be beside mom and dad and to have Paige there too.

I think it’s important for everyone reading this, despite our 14 tumultuous months, we had the most amazing time as a family. Penn still smiled, laughed and did so many things that a kid could and would do. She crossed everything on her bucket list. And although there were times that broke my heart, and we were stressful and sad, I would selfishly still do it all over again. I would take five years with Penn, then none at all. She has left an imprint on the hearts of everyone that knew her.

In memory of our Penny girl, we have created Penn the Brave, a registered charitable organization. We will spread joy and hope to other families who are on this same journey. This is what Penn wants us to do. I just know it. So I am committing and promising to Penn, that other families get to experience some joy on this journey. And - hopefully, one day, no family has to experience what we endured the past 14 months. Our hope is one day all pediatric cancers are curable.

To our Penn the brave, we miss you. But we know you will still guide us, and be with us, in other ways. Before you died, I told you, no matter where you are, we will see the same moon and stars. And I know that when we get really sad, and when we miss you a lot, all we have to do is look for the moon to bring us some comfort. Knowing wherever you are, you’re looking at the same moon too.

Video from Penn’s service. All the songs were picked by Penn and can be found on the Penn the Brave Spotify playlist. If you listen carefully, you can hear a small sound bite of Penn telling us a story, while she was at Rotary Flames House.

The quote at the end of the video is from The Invisible String from Patrice Karst.