Ependymoma (Pen)
Since we received Penn’s initial diagnosis of Glioblastoma, the medical team swiftly organized her treatment plan. Penn was slated to start treatment the day after Paige’s sixth birthday. We were mentally preparing ourselves for six straight weeks of chemo and radiation. If Penn was approved to participate in a clinical trial, she would be on a second chemotherapy drug. We were spending a lot of quality time with the girls and trying to remain positive.
On Friday May 28, at 4 pm, we got an unexpected phone call from Penn’s oncologist. She received the latest pathology results from Sick Kids in Toronto. Based on the report, Penn doesn’t have Glioblastoma. They are changing the diagnosis entirely. Penn is being diagnosed with Ependymoma. Sheldon and I had to ask the the oncologist multiple times if she could spell the name of Penn’s cancer. What are the chances that her name is in the cancer she is being diagnosed with.
“Penn’s diagnosis was changed from Glioblastoma multiforme to Ependymoma.”
Penn now has a chance - she went from 0% to 40% curable. Studies have shown Ependymoma is curable in children. Penn’s oncologist cautioned us that her cancer is on the aggressive side however, we now have a prognosis which she wasn’t able to give us before. We now have time to reassess and review Penn’s treatment plan. We had no idea this was a possibility - a change in diagnosis. Everyone’s positive thoughts and prayers have really made a huge difference. It’s really the only explanation we can think of.
Sheldon was picking up Paige from school and I was at home with Penn when we got the call. When Penn’s diagnosis changed, I muted the phone and started balling. I then sent a text to Sheldon: you should always trust your wife. I knew it. Deep down, my intuition was right. Everything would be OK. We still have a long road ahead of us, but I will take Ependymoma over Glioblastoma.
My biggest lesson learned from this: always trust your instincts. And Sheldon’s lesson learned: always trust your wife!
Therapy Centre
Sheldon and I wanted to be proactive before Penn started treatment. We would often visit the “therapy centre”. We never referred to it as the hospital because Penn would often get stressed when we even said the word. We got some great resources from Penn’s medical team, which included a radiation therapy video about a girl named Jenny. Penn was able to ask us any questions so there were no surprises. I think it also helped that Jenny looks a bit like Penn!
The staff at Tom Baker have been fabulous. They try their best to relieve Penn’s anxiety and to make sure she’s comfortable. On our way to the therapy centre, Penn was adamant that she wear her Cinderella dress. How could we say no? You could only imagine the number of hearts she melted at the therapy centre upon arrival and departure.
Penn has accumulated quite the collection of stuffed animals.
Ready for her visit to the Tom Baker.
Penn turns four
In the midst of Penn’s diagnosis, her fourth birthday was fast approaching. We made sure we gave her the best birthday possible. We invited family and friends for a porch visit. To reduce contact, we left Crave cupcakes and goodie bags on our outside table. Goodie bags for the kids included all of Penn’s “favourite things”. Penn dressed up as a Princess dinosaur for the day and she chose her outfit all by herself.
My work schedule often allowed me to take Friday’s off. While Paige was at school, Penn and I would have a date to the bookstore and grab ice cream.
After Penn’s birthday party, Sheldon and I had a good cry. We were so overwhelmed that over 100 people came to visit Penn, in the pouring rain. We even had family drive up from Edmonton to see her. Family and friends helped plan and organize her party while we focused on hospital visits, phone calls with Penn’s medical team and spending time with the girls. We weren’t crying because of Penn’s diagnosis, we were emotional because of our amazing support system and how incredible our two girls are. Despite the cards we’ve been dealt with, we are so lucky and thankful for Paige, Penn and everyone rallying behind us.
Penn excited to eat her Crave cupcake.
The Lottery
The Lottery jackpot is at a record high and many are hoping to have the winning ticket. In the cancer world it is very different. You do not want to win the cancer lottery. The last thing you want to hear is your child is only a handful of kids in North America who is diagnosed with this specific cancer each year. Penn’s case is being referred to the Children’s Oncology Group, a network of nearly 200 hospitals all over North America, Australia and New Zealand to advise us on best practice and treatment options. It’s disheartening and difficult to remain hopeful after reviewing Penn’s pathology results.
When the doctor confirms your kid has high-grade glioma. When the doctor says high-grade glioma is typically referred to as Glioblastoma multiforme. When the doctor doesn’t give you a prognosis because there isn’t one. When you Google Glioblastoma and it’s considered the deadliest human cancer. When you realize there is no cure. When your doctor says it’s a win if treatment and maintenance therapy doubles the lifespan of your child. For Penn, that would be to the age of six. When you’re advised you have to start treatment as soon as possible, which includes both chemotherapy and radiation every day (minus weekends).
When you Google Glioblastoma and it’s considered the deadliest human cancer.
When you wonder if her tiny body can handle treatment. When oncology starts listing the lengthy side effects of radiation. When the medical team rambles on about the side effects of chemotherapy. When they continue listing side effects for both treatments being administered simultaneously. When they denote the difference between temozolomide and veliparib. When you learn about molecular markers, genetic mutations and the difference between on and off study. When you are so overwhelmed with the information you feel like you’re having an out of body experience, observing someone else’s life. When you realize the doctor is speaking to you when they repeat themselves, “do you have any questions?”
Things do not look good. You really can’t get any worse than, non-curable. The average lifespan of for someone with glioblastoma is 6- 18 months. At the same time, Penn has been recovering well. This is where I have to follow my intuition and believe everything will be OK. Despite what the pathology report dictates, and what medical professionals have to say, I cannot let my mom gut be silenced by those around me. I have to cling onto hope no matter what.
One day at a time
Despite Penn’s health situation, there are two items we strive to accomplish every day:
1) Regular routine
2) Sense of normalcy
So while we anxiously await on Penn’s pathology results, we’re spending tons of time with the girls. We asked Paige and Penn what they wanted to do and we created a list. You all know how much I love lists! This is what they came up with:
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
There were days we spent at the neighbourhood park and it felt like an ordinary day. We would have the playground to ourselves and there would be no line up for ice cream. Penn usually wears a hat outside and there would be moments as if surgery never happened. Despite Penn’s preliminary diagnosis, we’re determined to focus on all our wins. Our new mantra is taking it one day at a time. Plus, there is nothing that bubblegum ice cream can’t fix. And yes - all photos below, were separate ice cream occasions.
C is for…
Cookies. C is for cake. C is for chips. C is for chocolate. C is for cucumbers. C is for carrots. The letter C starts with a lot of Penn’s favourite foods. Cancer also starts with the letter C.
High grade tumour. Those three words still haunt me. I didn’t hear anything else after the neurologist told us on a Friday afternoon. It was exactly one week since Penn was admitted. Your mind races and the internal dialogue goes to a dark place. Will she make it to her next birthday? Will she make it to Christmas? Will Penn be able to go to school? How many more hugs and kisses do we get? How can we take her to Paris? To Maui? To Japan? Paige and Penn are a pair - Paige can’t be an only child. All the dreams and aspirations you have for your kid are now gone. I had no idea I could grieve for someone who was still alive.
My world has turned grey. Or maybe that’s my new perception. Even when I would look in the mirror I don’t recognize myself anymore. How did this become our new life?
Family photo taken after we got the news, Penn has cancer. We forced ourselves to smile, because she was smiling.
Penn’s cancer is aggressive and rare in kids her age. Tissue samples have been sent to Sick Kids in Toronto and to the United States (Children’s Oncology Group) for further testing. We have officially been referred to oncology and radiology. The marathon race continues.
Penn’s Spotify Playlist
Here is the list of songs we had on repeat at the hospital and before we got admitted. Enjoy!
I will Survive - Gloria Gaynor
Do-Re-Mi - Julie Andrews, Sound of Music
The Lonely Goatherd - Julie Andrews, Sound of Music
Tiny Bubbles - Don Ho
Pata Pata - Stereo Version - Miriam Makeba
Go Your Own Way - Fleetwood Mac
Mama - Spice Girls
Let it Go - Idina Menzel, Frozen
Peanut Butter and Jelly - Sharon, Lois and Bram
C is for Cookie - Cookie Monster, Sesame Street
Recovery
We were told this is not a sprint, this is a marathon. We know we’re in this for the long haul. What we don’t know is what we're actually running. Is it a half? Full? Ultra? There are no kilometre markers on our route either. We feel like we’ve been running for so long, but perhaps were only at the second kilometer mark. So even with a successful surgery, we have to keep pushing through. We don’t know what’s ahead and what challenges we will face. The next few days was a rollercoaster of emotions.
Penn was recovering well, however, the Keppra and Dexamethasone were taking a toll on her body. She would have significant mood swings after her medications. She became irritable. Unhappy. A completely different kid. She would say things that were so innocent and it broke my heart.
When Penn would ask what happened to her. When Penn would ask where she is. When Penn would ask for her sister. Or when Penn would say, “Mommy it’s not my fault.” Or when she would have bouts of night terrors due to PTSD. There is nothing else you can do but to hold your kid and cry.
There were also moments that were beautiful. We listened to Penn’s favourite tunes on repeat. She would often sing them out loud in between bites of lemon loaf, croissant, cheese or chips. We would carry her and dance in our room. Sheldon would paint Cookie Monster or her stuffed fox upon request. In the middle of the night, if she couldn’t sleep, you could hear her whispering,
“Make me happy
Make me feel fine
Tiny bubbles
Make me warm all over
With a feeling that I’m gonna
Love you till the end of time.”
Penn singing Tiny Bubbles and eating a croissant
Despite our marathon race, what gives us strength and hope are the people along our entire route, continuously cheering us on. The aid stations are there when you need them the most. A warm blanket from the nurse. A friendly check in from the social worker. A gift card to Skip the Dishes to make sure we’re fed. Family helping out with Paige while we live at the hospital.
Penn was determined to go home and five days after surgery we were discharged. We were advised before her surgery it would be a minimum 10 day stay. Penn proved the doctors wrong again! It was the perfect mother’s day gift. Our family at home together. No more leads. No more doctors. No more medication.
We overcame another major leg in our marathon. Before we were discharged we got the preliminary pathology results. We thought we made such tremendous progress and now felt like we were back at square one.
Surgery day
I’ve realized we don’t give kids enough credit. They are resilient. They are smart. They have a sense of what is happening around them, or what’s to come, even though they cannot explain it. Penn’s phobia to doctors was apparent well before she was admitted on April 30. Perhaps she was trying to tell us all along she would be surrounded by so many doctors one day and she wasn’t ready.
Penn cried the entire weekend as a steady stream of medical staff entered her ICU room. The gown and mask attire caused her a great deal of anxiety and stress. Blood was drawn regularly. Keppra, Dexamethasone, Hydromorphone were administered around the clock. Penn’s vitals were checked every hour.
Early Monday morning, we were transported from the ICU to the operating room waiting area. Penn was laying on my chest and she didn’t cry at all. She was still and calm, while Sheldon and I spoke to the anesthesiologist and the neurosurgeon. This was our final opportunity to go over the procedure and ask last minute questions. I believe at that moment she knew, deep down the gravity of the situation. The medical team granted me access to the operating room, as I carried and placed Penn onto the OR table. I told her I loved her and watched her go under. Before I knew it, I was outside the room, with a tight grip around her stuffed animals.
And so the waiting began. We were told surgery would take all day. Most likely 5 - 6 hours and not to be alarmed if it takes longer. They aimed to provide updates every two hours but delays were likely. At 11 am they called us to say they started later than expected, however, things were going smoothly. The neurosurgeon was happy with how things were progressing. That was the only update we received that day.
Surgery was completed in record time despite its complexity. Penn’s entire medical team was extraordinary. Penn was talking and coherent asking for Mommy while I made my way to the recovery area. When Penn was transported back to her ICU room, the resident emergency doctor immediately started his assessment. He asked Penn to blink her eyes, open and close her hands, stick out her tongue, and smile. She obeyed. At that moment I looked at the doctor and his eyes said it all. Is this really happening right now?! How is she doing so well after a high risk operation?? He didn’t have to say anything, but I knew that’s what he was trying to tell me. Prior to surgery, doctors advised us there was a good chance Penn would still be intubated and unconscious after her craniotomy. Penn had the grit and determination to prove those doctors wrong.
When I asked Penn which ice cream she prefers, Marcus or Village, she responded, “Marcus.” Her response was identical to her answers pre-surgery since both ice cream joints landed in our neighbourhood. Her memory and comprehension was intact. When Penn said, “Mommy, I’m brave, and come here I wanted to give you a kiss and a hug,” there wasn’t a dry eye in the ICU room. And that’s how we decided what our blog was going to be called. When we’re ready to share our story, it will be called Penn the brave.
Weekend before surgery
Learning that Penn had a brain tumour was a complete shock to us all. She didn’t exhibit any symptoms - nausea, vomiting, headaches, loss of appetite, seizures or delay in development. Doctors were amazed Penn looked so good despite having a significant mass in her left frontal lobe. As we reflect on what happened earlier this month, we now realize our dire situation had positive signs scattered throughout the days leading to surgery.
When the doctor tells you Penn will have to be intubated immediately. After giving her one final kiss and cuddle you still hear her crying twenty minutes later. Penn’s medical team made a last minute decision not to intubate. You now have an entire weekend to converse, hug and kiss your kid as much as you want.
When the medical team tells you Penn cannot eat any solids and in less than 24 hours they revert their decision. Penn can now eat whatever her heart desires. Ice cream! Cookies! Sushi! Yogurt! Toast! Lemon loaf from Starbucks! Whatever Penn said she wanted, you bet we got it for her. Penn’s medical team realized she was stable and surgery could be postponed until Monday. Emergency surgery wasn’t needed.
When no one is allowed to visit Penn in the hospital because of COVID, including siblings. But then you have a private ICU room that has a window and a steady stream of visitors wave and blow kisses to Penn.
We knew so many people near and far were sending all their love, prayers and positive thoughts for our family. We could feel it. And despite all the tears I wept, I knew deep down, someone was trying to tell me, everything will be ok.
April 30 - Day 1
It all begins with an idea.
I remember April 30th so vividly. At the same time only fragments of conversations, moments and people that came into our lives that day, and changed everything. I guess that is what trauma and grief does to someone.
Sheldon stayed with Paige, while I drove to the Children’s hospital early Friday morning. On the drive, worst case scenarios flooded my head. I kept trying to recall the biology classes I took in University. It still didn’t prepare me for what all the doctors were going to say.
When the doctor leaves the ct scan before it’s even finished you know he’s rushing to get a team to come down to the emergency department. When the doctor accompanied by a social worker takes you into a private room to review the results you know it’s not good.
When the doctor says, “I’m going to take off my mask to tell you this, because we found a significant mass - and based on the size we believe it has been there for quite some time, possibly since she was born.” When you call your husband about the news you received and to make your way to the hospital as soon as possible.
When in the span of four hours you meet teams from emergency, radiology, neurology and ICU. Then you’re asked to read, review and ask questions before signing a consent on a high risk craniotomy to remove your daughter’s tumour. When the neurosurgeon tells you there is a high risk she will lose a lot of blood because she’s so young and tiny. When the neurosurgeon advises you there’s a 50% chance of her living with a shunt. When you ask questions if she will survive, or will she even remember mom, dad, her sister after surgery. When you sign the consent form and pray that everything will be ok.
When you have to break it to both sets of parents and all your siblings the news and trauma your family endured today. When you ask your family what you’re doing right now, because you may want to sit down for this.
There are moments we still look back on April 30 and think it must be a horrible nightmare. Then we realize this is our new reality. We were told on day one this is not a sprint, this is a marathon. We have to take care of ourselves, so we can take care of Paige and Penn. So easy to say, not easy to do.
Here is where we tell our story as our family is now on a journey we never expected. Despite it all, we are focusing on our wins, rather than our losses. This is where you will find the latest updates on Penn the Brave, who is the strongest fighter, warrior and resilient four year old we know. And we are so proud and lucky enough to say she is our kid.