The Secret Bucket list
For those of you that have been following Penn’s story from the beginning, you probably know all about her bucket list. The list of things Penn wanted to accomplish (and that she created herself) once she was diagnosed with ependymoma (brain cancer).
Here’s a refresher for you:
Go to the playground
Eat ice cream
Eat chips
Have a picnic
Ride in the wagon
Throw rocks in the river
Blow bubbles
Make some art
Go to the mountains
Go camping
See a whale
Visit a piggie at a farm
See a shark
Go to Disneyland
It really was the ultimate four year olds list. I mean, who wouldn’t want to go eat chips, ice cream and play at a playground all day?
There was one item that we kept hidden from this list - only Penn, Paige, Sheldon and I knew about it.
In 2021, we planned to expand our family. It took a long time for us to realize this is what we really wanted. And then Penn was diagnosed with brain cancer. We were silently grieving we could lose Penn, Paige could be an only child, and not having baby #3.
Penn did incredible during her two crainiotomies and her 33 rounds of radiation treatment. We would often talk about having another baby in our family and she absolutely loved it. She was ready to become an older sister, or in tagalog/filipino an Ate (Ah-teh). She knew the baby’s name, and we would often talk about the baby to her. In 2021 when we would ask Paige if she wanted another baby in the family, she would say nope. But she’s come around since then.
After multiple consultations, appointments, mentally and physically preparing for baby #3, we announced to our family during the Christmas season (as per tradition with all our baby announcements).
It was Penn who actually told me I was pregnant. I was not even three weeks. I dreamt I was chasing after her, and she was running towards her playschool. When we got there, she sat on a log and said, “baby in mommy’s tummy.” And I asked her, “really?!” Penn said, “yes, mommy.” And she was laughing and giggling. She seemed so happy. And that day, I did take a test and it was positive.
Penn always liked to be the first one to know, and it gave me so much comfort she told me she was going to be a big sister.
I have this feeling that, when the baby arrives, they will see a picture of Penn and be drawn to her. Almost like they already know each other. We’re so fortunate we are able to expand our family and check off Penn’s secret bucket list item.
Thank you to our friends and family, sharing with us our joy in this new and exciting chapter.
Grief
“Grief shapes you, molds you, and instills an outlook on life like no other experience.”
Some days are good. Some days are unbearable. Over the past few months, I have learned to recognize what helps me and my family get through the waves of grief. Because I know that grief will never go away. As long as I love, I will grieve for Penn Penn.
“When we lose someone we love we must learn not to live without them, but to live with the love they left behind.”
It’s been nearly a year since Penn passed away, and as I look back on what I’ve done to manage my grief, I’ve realized I’ve done a lot - I have tried to grieve in my own healthy way. Everyone grieves so differently. Below is a list of things of what I’ve done solo, with Sheldon and Paige, and/or with family and friends.
Lots of bike rides. It helps clear my mind. There is nothing better than forgetting about your grief and circumstances, even for 10 minutes. It rejuvenates you.
Penn the Brave. I devoted a lot of time and effort into the charity. It helps me with my grief, honouring Penn and assisting other cancer families.
Travelling. We went to the Maritimes, the Okanagan, Vancouver Island, Disneyland and New York. And in all the places we visited, I could feel Penn’s presence with us.
Going back to work. I went back to work when I felt like I was ready for a different pace and a sense of normalcy. I prioritized my physical and mental health first which was very important to me.
Pottery Classes. This was so much fun! Sheldon and I had a ton of laughs and I learned a new skill. We even purchased our very own pottery wheel. We love it that much!
Quality time with family and friends. We had a Hot one's challenge and a Wagyu paint night.
Paige’s abstract art
20 participants in the Hot One’s Challenge. And everyone made it to the end. I was so impressed!
Cooking and baking. Being in the kitchen reminds me so much of Penn. I like to think whenever I bake a cake, or cut mushrooms for our homemade pizza, she’s right there with me.
Pen’sDay. Our family started this tradition when Penn got sick. We continue this tradition every Wednesday aka Pen’sDay. We invite our siblings over for dinner. Something to look forward to mid-week!
Moon, stars and Penn’s bubblegum sky. There have been so many moments where my heart is so heavy. And then I would look up to the sky and I know Penn is showing me signs she’s with me. This brings me comfort but also sadness at the same time.
“Never. We never lose our loved ones. They accompany us; they don’t disappear from our lives. We are merely in different rooms.”
I like to think of all the things I’ve done, tried, accomplished, Penn would be so proud. She’s silently cheering me on from the ‘other room’. Of course I miss her. I miss her every day. But I know she is with me, and she continues to send me signs to bring me comfort. I don’t know if I will ever get used to this new reality, but I am trying. I am trying to live a life that honours Penn.
Baby Shark
I cannot begin to describe how much we love our family and friends. We have been so blessed with loved ones who stood by our side through it all. They made the past few years bearable.
Penn was fortunate to have the most incredible Godparents. Charlotte and Dan knew they had to do something when Penn relapsed with her brain cancer back in March 2022. One of Penn’s bucket list item’s was to see a shark. Charlotte and Dan made a few phone calls and reached out to Ridley’s Aquarium of Canada to see if there was something they could do for Penn.
Penn didn’t travel to Toronto to see the sharks but the Ridley’s team made something spectacular! They created Penn’s very own educational shark video. It included a lot of behind the scenes footage that you wouldn’t get to experience unless you worked at Ridley’s. This was the second last bucket list item Penn crossed off her list - the last one was seeing Cinderella in Disneyworld.
Charlotte and Dan - thank you for being incredible Godparents to Penn and ensuring she got to see a shark. I know you continue to show her your love and keeping your promise of taking care of her.
Last Christmas
We never thought Christmas 2021 was going to be our last one together. We spent it at the Rimrock Resort in Banff and it was absolutely magical. The snow. The view of the mountains. Ice skating for the first time. The decor around the resort. Paige and Penn dancing with their cousins. Playing games and watching the Christmas Paw Patrol episode.
They were all so happy. We were relieved 2021 was drawing to a close and to put that stressful year behind us. Penn had a great scan in November 2021, and we truly believed she was on the road to being cancer free. That we beat ependymoma.
Penn: “Hey! Polar Bear’s pants fell down!”
Last Christmas, we were at the Rimrock on December 21. This year, we spent it again at the Rimrock Resort, grieving Penn’s six months since her passing. The words hard, difficult, heartbreaking, don’t even justify what your body, your mind and your soul feel. The emptiness of not having your five year old with you during the holidays. Paige not having her sister with her. But I always have to remind myself that Penn wants us to be happy, and not to be sad.
I have been filled with sadness, that 2021 was our last Christmas as a family of four. And then, I remembered, our family did spend Christmas 2022 together. And it was an incredible surprise.
When we were chosen as a Make-a-Wish family to stay at Give Kids the World Village, they host a weekly Christmas event. Mr. and Mrs. Clause travel early to Florida to meet kids staying at the village. When we were there, it also landed on Paige’s birthday - after a fun filled day at Magic Kingdom.
When we got back to the resort, their town hall was full of Christmas decorations, waiting for Santa to arrive. I immediately broke down crying. Many of the kids staying at the resort may not make it to Christmas. And that was very much the reality for our family. It was an incredible gift for our girls to have a family photo with Mr. and Mrs. Clause. The volunteers also heard it was Paige’s birthday so we got to see Mr. and Mrs. Clause first before anyone else. We even sang Paige happy birthday while she sat on Mrs. Clause’s lap. After our family photo, the girls got to choose one toy from Santa’s workshop. Paige picked out Penn’s toy - a plush Little Pony dressed up as a pirate. And Paige picked Rapunzel and her horse Maximus.
I am so thankful as I reminisce and reflect on how our last Christmas together was celebrated in 2022. It took place in Florida, at Give Kids the World Village, and landed on Paige’s seventh birthday. The Village had an incredible dinner set up with all the food items you would eat on Christmas Eve.
We experienced a lot of firsts and lasts during our Christmas 2022 together and those moments, and memories will carry our family through.
A huge thank you to the Rimrock Resort in Banff for taking such good care of us, making us feel so safe while Penn was immune comprised while navigating COVID for our Christmas party.
And a big thank you to Make-A-Wish Canada and Give Kids the World Village for allowing us to celebrate Christmas 2022 together in Florida.
Penn Station
New York City. It’s never been on Sheldon and I’s bucket list. Even though we love Elf. Home Alone 2. Miracle on 34 Street.
Right before we left for California, I felt like I had to book New York. At the time I thought, we should stop travelling monthly, Paige shouldn’t miss any more school. But - I listened to my gut and booked it. There was something in New York that we had to see, experience, and feel.
So when it was minus 29 in Calgary, we hopped aboard a plane and went to the concrete jungle where dreams are made of. It was raining. Humid. Our first meal was at Chuko where we devoured brussel sprouts and delicious ramen. We immediately started to fall in love with the city.
It was pouring outside and humid, but we were glad to see the rain than experience snow and the cold.
The next morning, Sheldon ran around Prospect Park, and when he returned I walked around Brooklyn. As soon as I stepped out of our apartment I loved the vibe of the city. The blue skies. The multitude of coloured leaves streaming across the sidewalk. The Brownstone buildings. I decided to visit a nearby bakery and as I turned the corner I saw the moon shining so bright. Penn greeting me. And at that moment I knew we made the right decision to come to New York.
We ended up eating all the food. Food that Penn would’ve also loved - pain au chocolat, croissants, donuts, ramen, okonomiyaki tater tots, pizza, frites and macaroons from Ladurée, smoked salmon from Russ and Daughters, you name it! And it was all so delicious. Sheldon and I were able to have a date night at Clover Hill (which we HIGHLY recommend). It was incredible.
Paige got to experience riding the subway and loved it. How you have to take the stairs under buildings and roads to take the train. And all the tunnels and bridges to get to where we had to go.
We spent a day in Brooklyn, hopping around to a few different neighbourhoods before crossing the Brooklyn Bridge into Manhattan. In DUMBO, we rode Jane's carousel and Paige and her cousin played at a pirate playground. They could’ve spent all day there. The weather was perfect. 20 degrees. And for our lunch Paige folded a piece of pizza (very New York of her) and ate at a bench. I’m almost certain she’s a city gal. She thrives in the city. Surrounded by people, cool places, and of course, delicious food.
There was one place in particular I knew we had to visit. Penn station. Before going to New York I didn’t know the controversy and history. The original Penn station was constructed to be the gateway to Manhattan when it was built in 1905 and opened in 1910.
In 1963, the city of New York demolished Penn station to construct Madison Square Gardens. But this started a movement in New York to preserve historical buildings in the city. New York would not have the mix of old and new if it weren’t for Penn station being teared down. We didn't know the restoration of a new Penn station (adjacent to the original site) was in the works for several years. It opened in January 2021, in the historic James A. Farley Building, one of New York's first post offices.
We walked up the former US post office building, went along the long arcade, and was greeted with a string quartet playing, "Can't Take my eyes off of you" by Frankie Valli as we entered Moynihan Hall. The glass atrium was stunning and of course, we cried. The live music. The stunning architecture. And - the station even has Magnolia Bakery - Penn would've approved!
Entering Penn station was symbolic for us - that our family can rebuild and we can still live a beautiful and fulfilling life. Just because our loved ones are no longer here, you will still remember them and feel them. Despite destruction, and heartache, you can smile again. Because life is precious. And we only get one life - so live life to its fullest and make it the life you imagined and more.
Family photo along the Brooklyn Heights promenade. A huge thank you to our family Tiff, Ed and Rio for being incredible hosts and showing us your beautiful city.
Always in my heart
Ever since Penn died, our family has taken quite a few trips. No matter where we go, Penn is still with us, and it has been very apparent in all the places we’ve gone to. She’s with us, and always in our hearts.
Nova Scotia and Prince Edward Island
After Penn's death we knew we needed quality time as a new family of three. Sheldon and I decided that we should go anywhere, if it helps with our healing. We would name so many different places - but we didn't connect with any of them until my brother said, "How about the Maritimes?" For some reason it felt right. We've never been so we decided to book.
We started our trip in Halifax, and the hotel we booked was right across from a fox mural.
When we made our way to Prince Edward Island, we stopped at a chocolate store with foxes on display. We thought we were being pranked. I asked the cashier, “why are there foxes all over the place”, and she said "don't you know? PEI's official animal is the fox." We knew then, Penn guided us to PEI to heal, and to let us know she is always with us.
There is a fox storybook walk (three of Penn's favourite things) throughout the city of Charlottetown. It was great to do it together as a family and know Penn in her way was taking part in it too.
Vancouver Island
While we were enjoying the sea and sun at Cavendish beach, PEI, I had this overwhelming feeling we would be visiting another beach. I told Sheldon this and he said, “another vacation?!”
I felt like Penn was telling me I had to go to another place. Initially, I thought it was Hawaii, the trip that got cancelled because of COVID. And then, I realized, Penn was encouraging us to go to another island - Vancouver Island.
Victoria holds a special place in our hearts. We went to Vancouver Island shortly after Penn completed her 33 radiation treatments. This is where she got to meet Scratchy, and was able to cross off seeing a whale on her bucket list.
One morning Sheldon and ran along the south side of Victoria, and visited the same playground both our girls played at last year, and where their obsession with pirates began. We took a pause and sat at a nearby bench, reminiscing about our last trip as a family of four.
Although this trip was hard, I realized Penn encouraged us to go to Vancouver Island, helping us realize we can move forward. There will be bumps and hiccups along the way, but it is possible. Penn wants us to be happy, and to live a fulfilling, healthy, and adventurous life. Not to be sad. Because that would make her sad too.
California
As soon as we landed in San Diego, we went to Shake Shack. While everyone was enjoying their meals, the song go your own way from Fleetwood Mac started to play. One of Penn’s favourite songs, and a song that played at her viewing.
Before heading off to Nobu for dinner, we walked around the gas lamp quarter. One of the main streets was closed to pedestrian traffic with a variety of vendors set up for food, clothing, and jewelry. We walked towards the end of the street to find a historic brick building on the corner. It was called W.M Penn Hotel.
Penn Hotel!
California Adventures
At the start of the trip, it was a bit chilly, cloudy and gloomy. Once we arrived in Anaheim, blue skies appeared, and of course the moon. Even at lunch time, the moon was still visible. I like to think it was Penn sending us a sign she was there with us.
King Triton pointing to the moon. I like to think Penn is saying, “Mom! I’m right here!”
California Adventures was decked out in Halloween decor. And I was excited, and emotional thinking of visiting the Plaza de la Familia. We honoured Penn, by placing her name on the memory wall.
Behind my sunglasses, I cried when all the Coco characters were singing, and dancing to the songs from the movie. I had a flashback, of our family dancing to live Encanto music, while Penn watched us dance in Animal Kingdom. It was a painful reminder when Penn was watching us dance in Animal Kingdom, and how she is still watching us at California Adventures - in a different way.
Can you spot Penn the Brave?
On our last night in California, Sheldon and I had a date night at Jeune Jolie. It was the first sunset where the sky was painted Penn’s bubblegum colours - pink, blue, and purple. While we were driving to dinner, I believe Penn was so happy her parents were spending quality time together. After dinner, we were so full from the delicious food we decided to walk to the beach. We felt Penn there. The sky was bright with 1000s of stars. And the ocean waves thundered as they crashed onto the beach. It almost felt like on the other side of the ocean that’s where Penn could be. She’s so close and so far at the same time. We feel her spirit but cannot physically hold her and embrace. That’s what makes some days so incredibly hard. Knowing Penn is trying to reach out and say she’s here but we cannot see her.
Sheldon and I celebrating our 17 year anniversary
We made a brief pit stop at the Windmill food hall before going to the airport. It was the first place since landing in California that carried bubble tea. Another one of Penn’s favourites. She loved a lot of things. The food hall also had a library corner (Penn loved books). And then, the killers song came on (All these things that I’ve done) and I knew she was there.
Penn Way
Penn’s name is quite unique. It’s not very common so when we hear Penn’s name anywhere in our travels we are quite surprised. On the way back from Anaheim to Carlsbad our Google maps was not working. It kept thinking we were no longer on the I-5 and was re-routing us to Penn Way to get back on the interstate.
I don’t think we will ever get used to being a family of three, but we do try to make the best memories despite our circumstances. Paigey had a blast in Disney with all of her cousins and we cannot wait to visit again.
It was so enjoyable to watch Paige eat at Nobu. She has quite the palette - she prefers hamachi yellow tail over red snapper, and her favourite dish was a tie between the crispy tuna rice and the miso cod.
The Intuitive griever
Throughout my entire career, even in University, I worked or volunteered for non-profit organizations. They inspired me with their determination to create change for the greater good. And I knew, one day, I would lead a charity or non-profit organization. After all my years of experience, my contacts, my network, my learnings, I would also lead in creating change. I just didn’t know what exactly I would focus on. Was it world hunger? Climate change? Equity and inclusion? Never in a million years did I think that I would start a charity focused on pediatric cancer because of personal experience and heartache.
It wasn’t until Penn came home from Rotary Flames house, that I registered Penn the Brave as a charity in Alberta. Penn the Brave has been instrumental in my healing. Of course there is a term for it - the intuitive griever. I express my grief through affect. Devoting energy into helping others, is helping me heal.
In just over two months, our little charity has raised $16k. We have circulated over 200 ice cream scoop cards, nearly 100 pints of ice cream, donated 56 books and partnered with fifteen organizations and/or local businesses. And I am incredibly proud of what our organization has done in a short period of time. Because while I was in the midst of my waves of grief, I faced hurdles as an intuitive griever. Many people didn’t think I couldn’t do this. I wasn’t taken seriously. I was told I shouldn’t start a charity. Instead of lifting me up, these people were trying to take me down. They didn’t believe in my abilities, and most importantly didn’t allow me to grieve the way I needed to. I was painful.
Being a visible minority and a person of colour. Being female. Being a mom. Being told I’m too young and unexperienced. I was so sick and tired out hearing about these barriers. I decided, I can no longer be silenced. And in a way, Penn the Brave has really created this space for me to grow, be adventurous, take those chances. It has given me a voice and a platform for those affected by pediatric cancer.
Those of you reading this blog post - I cannot begin to express how thankful and appreciative you have been, supporting me on this journey. It’s still quite shocking how Penn the Brave is known to people that I haven’t even personally met. And how many have reached out and said how they’re so touched with what our charity is doing and our family’s story. I’ve gotten to know a few families too, with their children impacted by cancer, and that is what drives me every single day to keep going. Penn is no longer physically with me, but there is something I can do for those families impacted by cancer. I will do my very best to help those on this journey.
Paige insisted we take a mom and daughter pic.
Grief, mourning and healing
I start biking. The warm breeze touches my face and before I know it I’m heading to my usual spot. It’s about a 27 minute ride. I would’ve never thought my regular bike rides would take me here. But I am always drawn to this special place.
It’s a long and steady incline before I make it to section Y. When people ask me where Penn is I answer, “Section Y. Easy to remember. Why Penn? Why our family? Why did this happen?” I turn left and I see Penn’s gravesite. I blow bubbles. I bring her a special rock and place it in her bucket. I water her newly seeded grass and her flowers. I’ve realized this is how I can still parent her. I make sure her place of rest is well tended to.
“I grieve because I love. And as long as I love I will grieve”
Grief has no linear path for anyone, although it is a universal, natural feeling for us all. I’ve been grieving for months now. At first, it was grieving what life was before the diagnosis. It then evolved to what life could’ve been, if cancer didn’t take over our lives. When Penn died, I grieved for her life, her hugs, smile, giggles and our dates.
Along the way, in all my stages of grief, I have gotten advice:
“You’ll move forward in no time.”
“Be strong.”
“Time will heal.”
And you know what? What if I no longer want to be “strong”. And what does being strong even mean?? What if I don’t or want to get over it. And how time will heal, and your pain will lessen over time. I know now, that’s not true. The size of my grief will stay the same - I will grow around it, and find my personal way to cope. Time won’t lessen the pain - triggers will still happen and in an instant, it hurts just as much as the first time it happens.
When I am sad, all I have to do is look out the window. I often see a pink and blue sky - Penn’s bubblegum.
So as I go through all my ups and downs, a rollercoaster of emotions, I’ve decided I’m putting myself first. A foreign concept for someone has hasn’t put herself first for the passed 15 months. Because after experiencing grief like this, I am no longer the same person I was yesterday. I won’t be the same person tomorrow. I will continue to evolve and go with the ebbs and flows of going through grief, mourning and hopefully healing.
Although Penn is not physically with me, I feel her spirit. There are moments were I feel Penn is in the room with me, comforting me. She visits me in my dreams. She’s wearing her bucket hat, braid to the side, running around with the biggest smile on her face. It’s Penn from summer 2021, while she was undergoing radiation treatment.
What Penn looks like when she visits me in my dreams. Happy.
I think of her when I see a butterfly, bubbles, the moon and the stars. I’ve been seeing a lot of Penn’s bubblegum colour skies lately and all I can think about is she’s sending me a message that she’s OK. Which brings me comfort. And all of these signs and moments are helping me heal.
The first time I saw the moon and the stars since Penn passed was in early July on our family camping trip. I like to think, this was her way of sending me a sign that she is with us on our camping trip.
In Filipino culture, once someone dies, nine days of prayers begin. This meant our house was full of people. every day. It was the first time in our new home having people over and since COVID. At times, there were more than 40 people in our home. I loved it. Being surrounded by family is healing. We celebrated life, love, and how our Penn Penn brought us closer than ever before. For that, I am so grateful.
Penn’s 40 days landed on Sheldon and I’s wedding anniversary. This was not how I envisioned celebrating eight years of marriage, but we celebrated nonetheless. We did a butterfly release at the cemetery with 24 butterflies, her birthday number. It was healing to see butterflies wake up in the palms of our hands, and fly into the sky. Perhaps they will reach Penn wherever she may be.
As I place my helmet back on and hop onto my bike, I look up to the sky and see a few bubbles still lingering in the air. Penn’s spirit is here, always in my heart, looking after me wherever I go.
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.
Cinderella
On Paige’s birthday, Penn finally got to meet Cinderella. What a magical experience for both girls. I didn’t think it was going to happen but it did. When we were granted our Make-a-Wish trip, we were advised, the Disney Princesses may not be having 1-on-1 meet and greets due to COVID. They were logistically figuring out how to organize these visits with the public.
However, when we got to Magic Kingdom, we saw signs at the castle, that we could meet the following princesses: Princess Tiana, Rapunzel, Princess Elena, and of course Cinderella.
Penn also loved Jacques, Gus and Perla.
Waiting patiently for Penn to meet Cinderella. So thankful for the experience, and the lightning lane!
Penn’s health significantly declined throughout the month of May. Due to her medications and her tumours growing, she preferred to be in a stroller - it was difficult for her to walk. She stayed in her stroller when she met Princess Tiana, Rapunzel, and Princess Elena. But when she saw Cinderella she told Sheldon, “please carry me, when I meet Cinderella.” It was the first and only time, throughout our entire trip, she requested to be taken out of her stroller. When she met Cinderella, Penn reached out and they held hands. I didn’t realize this was happening, until I looked at Nicole who was videotaping. She was crying uncontrollably, and then I started to cry. Cinderella even asked Nicole, “do you need a hug your majesty?”
What an incredible moment for Penn, to reach out and hold Cinderella’s hand, as she completed her last bucket list item. Throughout all of her pain, she did it. To me, this is what defines bravery - when you’re faced with the unimaginable. When you’re afraid and you keep on going with what you need to do despite your circumstances. I don’t know where Penn got her bravery and her strength from, but I am truly honoured to be her mom, and to have witnessed her meeting Cinderella, on Paige’s seventh birthday.
When Penn met Cinderella.
Princess Elena of Avalor was the last princess Paige and Penn met. Our girls rarely watch TV so they had no idea who she was. Penn was not really interested, until Princess Elena conversed with Penn about her foxes (Dox, Mox, and Fred). Princess Elena also mention she too has a fox (a spirit animal) named Zuzu. Once again, our trip perfectly aligned - what are the chances of Penn meeting a Princess who also has a fox? Penn was interested in hearing what Princess Elena had to say after learning about Zuzu.
On the flight back to Calgary, while Penn was laying down on my lap, I cried. During take off, while in the air, and when we landed. This was the last trip as a family of four. Penn’s last airplane ride. Penn’s last vacation. But it was so worth it. To see her smile and to witness all of her accomplishments.
But there was plenty to look forward to when we got back home to Calgary - Paige and Penn’s treasure island birthday party. Our first big family event since COVID started.
Do you believe in magic?
In seven days, we created so many memories. We laughed, we cried, while being super hot and sweaty in Orlando. We visited Epcot, Magic Kingdom, Animal Kingdom and Universal Studios. Here are a few highlights from each of the parks we visited:
Epcot
Orlando was never on my list of places to visit. And when I hear Epcot, all I think of is the giant golf ball sized monument that people take pictures in front of. When we got to Orlando, I learned Epcot is a trip around the world: you can visit France, Morocco, Japan, Italy, Norway, the list goes on! This was an opportunity for Sheldon and I to cross off places we always wanted to take our kids to together. After Penn’s cancer diagnosis, we replaced our dreams and aspirations with what she wanted to do, and what she wanted to accomplish. This is how Penn created her own bucket list. We always dreamed how we would take Paige and Penn to Paris, our favourite city in the world, or to Japan to eat okonomiyaki, sashimi and sukiyaki rice bowls. And unexpectedly, we were given the perfect opportunity to do so. We ate crepes underneath the "Eiffel Tower", and sat along the river Seine at a French cafe. We ate sushi, sashimi, and edamame in "Japan." Penn's dreams are coming true on this trip, but never in a million years did we think our dreams would come true too.
Thumbs up for the hazelnut crepe in Paris!
We were melting in the hot afternoon sun along the Seine, but Penn was cold!
Animal Kingdom
There were a lot of firsts our family experienced together too. Our first ride together was the African Safari in Animal Kingdom. The girls loved it. Penn's favourite part was seeing the family of hippos. The baby hippo was five years old, just like her. We saw hundreds of birds and fishes. We saw giraffes, zebras, and lions basking on top of “pride rock.”
Paigey, Sheldon and I also danced to live music (Encanto) while Nicole and Penn watched. We had an incredible time. It was so magical. My words don’t do it justice.
Sheldon and I have been together for nearly 17 years. And we have never gone on a rollercoaster ride together. Thanks to the golden pass, we could skip any line to any ride, as many times as we want. We chose Expedition Everest that had a current wait time of nearly two hours. My body was not used to the G force because I was so sick after. I will not add the photo that was taken while we were on the rollercoaster (too embarrassing). But let's just say, Sheldon looked fantastic (as per usual) and I well, I looked horrendous.
I was extremely nauseous in this photo. I had no idea the rollercoaster would go backwards.
Universal Studios
Universal Studios was Penn's favourite park. When Penn was diagnosed last year, Sheldon started reading Harry Potter to her. It was magical to see Sheldon and Penn bond over their love of Harry Potter. Penn at this point of the trip would sleep through most of the attractions, however, she was awake for most of the day at Universal Studios. We took the Hogwarts train at platform 9 3/4, had butterbeer along Diagon Alley, took a photo in front of Ollivander's wand shop and visited Hogwarts castle. The other thing I learned on this trip is virtual rides are worse than rollercoasters! The second ride Sheldon and I went on together was Harry Potter and the forbidden journey. Thankfully, nurse Nicole preemptively gave me Gravol. Once again, our picture is super embarrassing, so that will not be posted on the blog. Ha!
After visiting Hogsmeade, we travelled to London - another place I always wanted to take Paige and Penn to. We then walked to San Francisco, before it started to rain. Penn loved the seafood so much, we had to get a second plate of shrimp!
Penn was adamant that Sheldon be by her side in Hogsmeade. It was great to see them bond and connect.
Waiting for the train in Hogsmeade
Paige loved meeting a minion.
Magic Kingdom
We celebrated Paige's 7th birthday at Magic Kingdom. She was so happy to see Mickey, Minnie, Goofy, Donald, and Daisy. She had a permanent smile on her face while we visited Magic Kingdom. Not sure how I can top this birthday. She got two special pins: first Disneyworld visit, and celebrating a birthday. We rode it’s a small world after all, ate lobster rolls, watched the parade, and visited several princesses.
Penn waving to Mickey Mouse, saying, “thank you for meeting Paige. It was her dream to meet you!”
My favourite photo of Paigey from our Orlando trip.
“Mom! Take a pic of me in front of Minnie Mouse.”
I love this girl so much.
Paige and Penn’s first encounter with one of the Disney princesses. Princess Tiana.
Rapunzel
Of course, the whole purpose of our Make-a-Wish trip was to visit a very special princess - Cinderella. It was so special for our girls to meet Cinderella because it was on Paige’s 7th birthday, and it was the last item on Penn’s bucket list. This special moment deserves its own post - stay tuned.
Give Kids the World Village
We had no idea Give Kids the World Village (GKTW) existed until we were granted our Make-a-Wish Canada trip. Give Kids the World Village is a resort located in central Florida, where children with critical illnesses and their families are treated to weeklong, cost-free vacations. Since GKTW opened its doors in 1986, they have welcomed more than 177,000 families from 76 countries and from all States in the U.S.
Give Kids the World Village exists due to generous donors, community partners and most importantly, their volunteers. The volunteers are the heart and soul at GKTW. Throughout our stay, there were several volunteers who left an imprint on our hearts, who took the time to get to know our family, our story, and how we were coping. There were several volunteers I will never forget:
Aaron - a teenage volunteer from Texas, who served Paige seven pieces of bacon (she had a major crush on him, it was so cute).
Threesa - main organizer for a mission trip for ~40 participants from Texas, including her daughter to volunteer at GKTW.
And lastly, I will never forget Danni - a longstanding volunteer whose family stayed at the Village many years ago. Her daughter passed away in 2020, and she was the first bereaved parent I met. We connected instantly. She understood what it was like to be a full-time caregiver, and the mental, physical and emotional toll it takes on a mother, and the immediate family. I remember her telling me, "hang in there mama." And I cried. Danni understood what I was going through, something only another mother who has walked the same unfortunate path would understand.
The Village
The Village was absolutely magical. It has a ice cream parlour that opens at 7:30 am, a beautiful waterpark and pool area, banyan trees and an amusement park.
Penn’s dream! Ice cream for breakfast, lunch and dinner. We often would make a pit stop at Starlite for their Dasani flavoured sparkling water.
The ice cream parlour all to ourselves! I appreciated the vegan ice cream options.
The amusement park. Paigey went on all of the rides, including the train ride around the park, twice.
The Castle of Miracles
The Castle of Miracles is a place that houses special stars - representing each wish child that has stayed at the Village. When you enter the Castle of Miracles, you can't help but be overwhelmed with the sheer number of stars - 177,000. Penn placing her star in the Castle was an emotional experience. We knew that when we return one day, it would be without her. We were comforted to know, that her star will always be at the Castle, shining bright and providing hope to other wish families.
Stars shining onto Penn, including her own special star.
Double Rainbow
On our last day in Florida, was stayed at the Village. And it was the first time we saw a double rainbow, end to end. Even the volunteers and staff at the Village were amazed and had not seen or experienced anything like this before. Sheldon and I saw this as a sign. We shouldn't be sad even though our hearts knew Penn's time with our family was ending. She completed her bucket list and it was only a matter of time until she would depart us. I told myself that if I were ever to see another double rainbow, it's Penn Penn reminding me not to be sad. That I should be happy. And to remember the good times we had together on our last trip as a family of four.
A huge thank you to Give Kids the World Village, for taking care of us during our stay. We have so many wonderful memories, and would love to volunteer and visit one day when we’re ready.
Bibbidi Bobbidi Boo
“No matter how your heart is grieving
If you keep on believing
The dream that you wish will come true.”
- Cinderella
An amazing surprise during Penn’s birthday week. A Make-a-Wish trip to Orlando!
Before I write about our Disney/Universal/Orlando experience, I have to start at the very beginning. How we became one of the first families in western Canada to fly post COVID to Disneyworld through Make-a-Wish Canada.
When Penn had her tumour recurrence in March, her oncologist encouraged us to travel. Now was the time to do it as a family. Due to Penn’s medical needs, we applied through Make-a-Wish Canada to take Penn to Disneyland. It was the only bucket list item left for her to fulfill and we were hoping we could help her achieve it. We soon found out, that due to COVID, international travel was not allowed however, domestic trips were being approved. We decided to fill out the application anyway and see where it would take us. Before we knew it, Penn’s health spiralled and we found ourselves at Rotary Flames House. We decided not to submit our application and let Make-a-Wish know, we would not be seeking any requests. We thought our chance of one last family vacation was gone.
For those of you that have followed our family’s journey on the blog, Penn was able to leave Rotary Flames house on March 24 - twelve days after being admitted. Penn was placed on chemotherapy and her health stabilized. During Penn’s second chemo cycle, Sheldon and I decided we would try to make that one last trip as a family of four. If we can’t go to Disneyland, perhaps we could take the girls back to Victoria, B.C to go whale watching again (another one of Penn’s bucket list items). When we reached out to Make-a-Wish, they advised us international travel was about to open again to Canadian families. I realized this was Penn’s chance to finally meet Cinderella, in Disneyland. We submitted the application and advised the coordinator we would be obtaining her passport as soon as possible.
Penn celebrating her fourth birthday (May 2021). Penn wore her Cinderella dress to one of her radiation appointments.
The next day after we submitted our Make-a-Wish application, we got Penn’s passport photos. Obtaining Penn’s passport was a tedious process. It took three trips to the passport office, but they were able to process her documents for pick-up the following day. I advised Make-a-Wish our whole family had all of our travel documents if we were approved for a wish.
Two weeks after our application was submitted, we were advised that Penn would be granted a wish! One of their coordinators will be in touch with us shortly so they could meet Penn. At around the same time, Penn’s health started to decline. She was becoming less mobile and had frequent naps. When our lovely coordinator Matthew got in touch with us, I sadly told him, “I don’t think we can proceed. Penn is not doing great these days and I’m doubtful she would have the energy to meet you and discuss her dreams and wishes.”
Two days later (May 25 at around 4:00 pm), Matthew calls me. He discussed at length with Penn’s oncologist that they really want to grant her wish of meeting Cinderella in Disney. They were going to make it happen. For families with critically ill children, they don’t send them to Disneyland, they send them to Disneyworld. We learned that they are better equipped in Orlando to host families. I started crying immediately. We were going!! We are actually going to fulfill Penn’s dream!
Penn loves and adores her big sister Paige. This trip was not only for Penn but for the two of them to experience together. Penn wanted Paige to meet Mickey Mouse on her seventh birthday, her favourite Disney character. And Matthew made it all happen. When I told the girls their fairy godfather (aka Matthew from Make-a-Wish) was taking us to Disney they were so excited. In 48 hours we frantically set up Penn’s emergency medications, sought approval for Penn’s aunt to accompany us (our medical caregiver), took COVID tests and packed. It was a gong show but Make-a-Wish made everything go so smoothly and took care of absolutely everything. The night before we left for Orlando, I only slept 2.5 hours but I felt great and well rested. A huge thank you to our family who helped us pack, shop and get ready to fly in two days!
Sister love. Photo taken July 7, 2020
We went from not flying internationally in nearly five years to travelling to the most magical place on Earth, with COVID restrictions, while Penn was in between chemotherapy cycles. Thank you Make-a-Wish for granting Penn’s final wish. Dreams really do come true. Because of you, she has completed her bucket list. We know there are thousands of other families waiting for their wish(es) to be granted. Wishes are only possible for those that donate and support this amazing organization. Please consider donating to Make-a-Wish Canada.
On our way to meet Cinderella and Mickey Mouse - dated May 28, 2022
“Be kind, have courage and always believe in a little magic.”
- Cinderella
Penn’s Bubblegum
For those of you that have been following the blog since Penn was first diagnosed, you probably remember the Marcus vs. Village ice cream story. I would often take Penn on ice cream dates to Marcus, Village and a small corner grocery store that sold bubblegum ice cream.
Every time I would ask Penn, what ice cream do you prefer, Marcus or Village she was consistent. She would say Made By Marcus. So when she woke up from her craniotomy, I had no idea if she would be able to talk, know I was her mom, or if she would remember her love for ice cream. But she did. When I asked her, “Penn, what do you prefer, Marcus or Village,” she said, “Marcus,” followed by “Mom can I give you a hug.” The PICU staff were quite emotional, and so was I.
After her first craniotomy, followed by her second surgery and throughout her radiation treatments last summer, we would grab ice cream after a walk in the neighbourhood, or a bike ride. Penn would often ask, does Marcus have blue ice cream, and I would say no. Her go to flavour is the vegan chocolate fudge brownie.
Throughout all our ups and downs, our struggles, our sadness, we knew it was so important to give back. And that’s how we started creating a blue, bubblegum flavoured ice cream at Made by Marcus. In just a couple weeks, an idea of Penn’s bubblegum ice cream became a reality, right before we got back from our Make a Wish trip to Disneyworld. I huge thank you to Lourdes, Yousef, Maggie, Ploy and the entire Made by Marcus team for doing this. We are extremely lucky to be surrounded by amazing neighbours. It means the world to us.
Penn’s bubblegum ice cream is available in pints and servings at the Bridgeland location until June 12. All proceeds will go to the Brain Tumour Foundation of Canada for education and research initiatives. We are doing our part with the help of our community to create awareness on brain tumours and hopefully eradicating brain cancers one day. A huge thank you to all our family and friends that have purchased ice cream so far.
Penn, at the tender age of five is a community builder and a change maker. All because she loves food and always thinks of others. I am blessed to be her mom, despite this sad and difficult journey together.
An exclusive - Crave Kitchen tour
Back in April, our family got an exclusive kitchen tour of Crave Cookies and Cupcakes at their Kensington location. What an experience. As many of you know, my girls love to bake and cook. Especially Penn. Seeing hundreds of cupcakes and their massive industrial sized mixer was eye opening for them.
We are so grateful for our amazing friend Chloe who was able to organize this experience for the girls. Thank you so much for showing us around Crave’s kitchen!
So that’s how the put on the sprinkles! The baker in this photo has been at Crave for 17 years.
Thank you Chloe for a once in a lifetime experience! The girls loved it!
The mixer is taller than Paige!
Penn the Brave turns 5
To my darling Penn. Today marks the day you turn five years old. We made it to 60 months. Today is a gift and you are one of the gifts I hold so close and dear to my heart. I remember the exact moment and time (9:36 pm) that I had my first contraction with you. You were born in record time! Around 90 min!
The past five years have flown by. I know it hasn’t been easy, but if I were to collectively look at all of our memories, we definitely have more good ones, than sad ones. You and Paige bring light to my life and you have touched so many with your Penn Penn cookies, your love of ice cream, your amazing cooking skills, your love of food and your laugh.
Thank you Penn for the amazing memories, the smiles, the laughter and the love you have given our family. You’ve taught us to live in the moment and to live life to the fullest. “Don’t you want to know what happens when you don’t give up” is the quote we now live by. All because of you.
Happy Birthday my darling Penn Penn. No matter where this journey takes us, we got you. We’re in this together. We will always be a team.
Love, mom
Photo taken by Visual Hues Photography on May 23, 2022
May 10 - Ependymoma Awareness Day
I’ve had a wave of emotions these past few weeks. Penn undergoing her second round of chemotherapy. April 30 being a year since we found out about Penn’s tumour. May 3 when she had her first craniotomy a year ago. And celebrating Mother’s Day this past weekend. I’m not going to lie. Things have been hard. Extremely hard. I don’t even know what to say when people ask how are you doing? What can I do for you? I want to answer, my old life back. A world with no cancer. A cure for Penn.
However, I have to remember why I started this blog. It was to remain positive, and count our wins rather than our losses. And with May being Brain Tumour Awareness month, I knew this was an opportunity to shed some light and education on brain cancer. Brain cancer survivorship has barely changed in the past 30 years, compared to other forms of cancer.
Here are a few facts provided by the Brain Tumour Foundation of Canada:
55,000 Canadians are living with a brain tumour.
There are over 120 different types of brain cancer which makes effective treatment very complicated.
More children die each year from brain tumours than any other childhood cancer.
Penn has been diagnosed with anaplastic ependymoma. This means, that her cancer is a high grade tumour that multiplies rapidly in her brain and spine. May 10 has been chosen as Ependymoma Awareness Day due to the 10 different molecular groups of ependymoma. In the science world, ependymoma is a heterogenous disease (multiple diseases within a disease). This makes treatment extremely complex.
Penn’s willingness to fight and be brave throughout all of her treatments has left me wanting to fight too. No family should be going through this. No family or child should have to battle cancer. Although it’s been hard on our family, we know there are other families that don’t have the support of family and friends like we do.
Hopefully by now, you’re asking yourself, what can you do. Here is how you can help:
Continue to learn more about brain cancer throughout the month of May. Please visit Brain Tumour Foundation of Canada and CERN Foundation for more information.
#TurnMayGray - Wear your favourite gray shirts, pants, hats, nail polish, and update your social media accounts with a grayscale profile picture… Try to post grayscale images only this month!
Get creative with the CERN Butterfly Colouring Page and share on your social media accounts.
Share information on ependymoma with another person who has never heard of it!
Follow @PennTheBraveYYC on Instagram. We are excited to share some news in the next few weeks. Stay tuned!
59
I haven’t been able to update the blog as much as I would have liked. I’ve been settling into my new role as nurse mom, while trying to spend some quality time with Sheldon, Paige and squeeze in some self care.
Penn celebrated her 59th month birthday a few days ago. I can’t describe how much of a rollercoaster month it’s been. We enjoy all the moments we can. This is what we’ve been up to:
Finished our first round of chemo treatment
Participated in Emilia’s annual easter egg hunt
Celebrated Easter with immediate family
Celebrated both Lola’s birthdays
Went to preschool for a short but sweet visit
Zoo trip with the cousins
Thank you Monika for capturing this photo
Cold but sunny day for Emilia’s egg hunt. The girls had a great time with all their cousins.
Learning all about plasticine!
Zoo trip with the cousin!
We’re also enjoying the simple things:
Cooking/baking
Craft time
Neighbourhood walks
Midnight snacks (thank you steroid medication)
Penn was really excited to colour these eggs. After she was done she said, “Mom, can we hang these on our Christmas tree?”. I got quite sad thinking Penn might not experience another Christmas with our family.
Penn is quite the sous chef. Prepping cremini mushrooms for our weekly homemade pizza night.
These days I am really sad. But I try to remember that each day is a blessing. The time we share as a family is a gift. That I need to be hopeful despite our family’s circumstances. Penn is here and as long as she is smiling and happy, I will continue to be as brave as her.
A huge thank you to our family and friends that continue to check in on us. We love you all.
April Fools
Two weeks ago, it seemed impossible that Penn would be here for my birthday. On April 1, we celebrated at home and are officially discharged from Rotary Flames house. Penn baked me my birthday cake (thank you Chloe and Stevie for the Crave cake mix). Penn started chemo on March 29, and I remind her multiple times a day how strong and brave she is. She has been through so much this past year. Two craniotomies, 33 radiation treatments, 12 MRIs and now five consecutive chemo treatments. She is my hero and every day she reminds me to be strong. She has the tough road ahead and all I can do is support here and remind her she can do this.
This past year, I have learned to really be present with my family. To remember all the precious moments. Even when we are baking/cooking, out on our neighbourhood walks, driving to school , reading stories, going out for ice cream and burgers. Although Penn’s time with us is dwindling, it is such a gift that she is here, making my cake, putting a ridiculous amount of rainbow sprinkles on top of the Crave-o-licious chocolate cake. I have my family. Penn is home. Penn is alive. And there is nothing else I could've asked or wished for on my birthday.
58
After several hurdles and a couple attempts, we got the highly coveted pass. The pass that allows us to go from our Rotary Flames home to our white farmhouse home. We left Rotary Flames House as a family of four. I should’ve known that our pass would begin on Penn’s monthly birthday (March 24). She was greeted with huge balloons, and Penn’s face said it all. Her mouth was wide open in surprise and in awe, that she was home on her 58th month birthday.
We know this is only temporary. We don’t know what tomorrow, or even the next hour will bring. There are important decisions that have to be made in the days and weeks ahead. But this precious gift of family time at home means the world to us. So here is to baking cookies and waffles. And to giggles, laughter and family group hugs.
Baking the best chocolate chip cookies
Time to taste test!
These two give me the strength to keep going. These girls are my everything.
Making Pandan waffles for breakfast!