Kite Flying
We didn’t think she would make it through the night. We made peace with the fact that Penn was leaving us. She said her final goodbyes to those nearest and dearest to her, specifically asking to see important people in her life.
Morning came and Penn was breathing, alive, coherent. Penn all of a sudden had a burst of energy. After not eating or drinking for days, she was interested in apple juice. Crave cupcakes. Kinder eggs. You bet we said yes to all of the treats she asked for. We read Disney princess stories and she played with Paige.
On March 16, we celebrated my sister-in-law’s birthday. It was like Penn was holding on so she could be part of her special day. We celebrated as best as we could given the circumstances. We did cake cutting first, and Penn devoured a huge slice of matcha green tea cake from WOW Bakery.
Every day, Penn kept getting "better." We even had the chance do go outside and fly a kite for the first time. Clear blue skies and enough wind for the kite to take flight. It was like we were given a second chance of spending these precious moments with her.
Penn's cancer with its specific mutations means she has no cure. And there are no trials. But we can't help but think, Penn is still here. That must mean something. If Penn is willing to fight this, we will too. Because we’re a team and we will fight this together.
Kite Flying outside our Rotary Flames home - March 17, 2022
Princess Penn the Brave!
Eating fresh pandan cake!
Penn enjoying vegan tocino - cured “meat”
Rotary Flames Home
I can’t begin to describe the insurmountable feeling of grief when you’re entering a home as a family of four. And knowing, one day, you will leave this home as a family of three. As a mother the pain is excruciating. Debilitating. Depressing. My heart has shattered into a million pieces. Even that's an understatement. I can only imagine what other family members are going through too. Sheldon. Paige. Our family dog Pepper. Grandparents (Lola's/Lolo's). Godparents (Ninang/Ninong). Aunts (Tita's/Tia's). Uncles (Tito's/Tio's). Cousins. Because they all helped to raise Penn and watched her grow. It really does take a village to raise a child.
We were greeted and welcomed at our Rotary Flames home. And we knew we made the right choice because it didn’t look like a hospital. One of Penn’s wishes. Our room had a similar set up to a spacious condo. The nursing staff respect your space. Sheldon and I were able to set the boundaries of how often medical staff can visit.
Penn's health continued to spiral in the downward direction. All we could do was manage her pain. We even called her uncle from Toronto to fly back home earlier than originally planned. We didn’t know if she would make it through the night. We advocated for Penn's final home to grant him approval to enter. We knew it was important for Penn to see him. We wanted him to say his final goodbye.
After her fav uncle said his goodbye, Sheldon and I laid down beside her, and told her we loved her very much. We are so proud of her and she can now rest. She doesn't need to be brave anymore. Penn suddenly woke up and called for Paigey to lay down beside her. Uncle carried Paige who was fast asleep into our bed. Penn grabbed Paigey's hand and Penn fell back asleep. Pepper was even with us at the foot of the bed. This is what Penn wanted. Our family. All together. As I watch my girls holding hands, I lay my hand on Penn's back. Wondering when she will take her final breath.
Adventures around our neighbourhood between Feb 12 - March 5, 2022
Pennyland
We have always felt the love from our family and friends. Especially when Penn got sick. I cannot explain to you how much love we felt with so many people rallying behind us. Lifting us. Guiding us. Praying for us.
The morning of March 11 (after we got back from the hospital) I woke up to fresh coffee and a vegan hash ready to be eaten. My cousin (the sister I never had) flew in from Vancouver. Several family members are nurses. They organized a rotating schedule to ensure someone was always at our home to assist in preparing and administering Penn’s medications. Our master bedroom closet was transformed into the nursing room/prep area. Our bathroom became the sanitizing zone. The set up was perfect.
Our fridge was full. Our pantry was literally bursting at the seams. And in 24 hours my dearest friends organized Pennyland - a Disney/Cinderella outdoor themed party. We would celebrate Penn the brave. I cannot describe how extra and the wow factor this party would’ve had. I knew it would be a magical party to celebrate Penn. Unfortunately, Pennyland was never meant to be. It was supposed to happen at 3 pm in our backyard. But Penn’s seizures became more frequent, longer and scary. At 1:30 pm we cancelled the party. Rather than celebrating, a bed was being prepared at our new home - Rotary Flames House. Before we left, we got Father Vargas to visit. The same priest who conducted our wedding renewal ceremony in July 2021. Throughout the blessing Penn looked peaceful. Calm. Tranquil.
I wouldn't call myself a devout or religious person, but I am spiritual. What happened next I cannot explain. While we were getting ready to leave for Rotary House, Penn was sitting on Sheldon’s lap. All of a sudden, she starts talking and pointing to the various stuffed animals on the bed. She could now see. She could now talk. We were able to converse. We cried. We couldn't believe it. We had a good solid 10 minutes with her, then she had her worst seizure. It lasted for around 3 minutes and travelled all the way down to her face, then her left arm, then to her leg. We gave her Ativan. We realized that her moment of lucidity before her seizure was a special gift to us.
We left for Rotary Flames House at 3:30 pm. As I carried Penn towards the car and away from the white farmhouse, my heart broke, thinking I won't be returning with her. Family followed us to the garage and Penn gave us one last gift - she waved her hand and said her goodbyes.
Penny waving goodbye before heading to our Rotary Flames Home - March 12, 2022
March 10/11
Throughout the night, alarms would go off. Oxygen levels low. Heart rate too high. Nurses would come in and out. Blood pressure would be taken. Penn was placed on a morphine infusion to alleviate her pain, but we knew this was the last place she wanted to be.
We advocated to take Penn home. We agreed to administer all of her medications. Our number one priority is that Penn is comfortable and we reduce her anxiety. The only way we could do this, is to take her back home to the white farmhouse. After the discharge papers were signed, I carried Penn and cried all the way to the car . We ran away from the place that has saved her so many times but has caused her so much trauma.
The first evening back at home, Penn would wake up in the middle of the night. She would sit up, look around and fall back to sleep. No crying. No anxiety. She knew she was home. We made the right decision, after coming up with a pain management plan. Due to her cancer spreading rapidly, it was only a matter of time before she started to develop seizures. We began to notice small seizures in her eyes and then her lower jaw. Her right arm had no mobility and it looks like her eye sight is gone. We will continue to be there for her. Read her stories. Say our good night prayers as a family. Sing Twinkle Twinkle Little Star. Give four kisses because she’s four years old. For now, we keep moving forward and take it day by day. We are together, and that’s all that matters.
Photos taken on March 6. Two days before Penn’s MRI. Zoo play date with the cousins.
The white farmhouse
After Penn’s diagnosis in May 2021, I had a lot of dark days. It was hard not to. Many times I just had to trudge through the sadness, the grief, the heartache.
Over the summer when Penn was undergoing treatment, I dreamt our family was in a modern farmhouse. With huge windows facing east. The home was bright. Cheerful. Lots of light. And we were happy.
In October I mentioned to Sheldon that perhaps we should start looking for a new home. Perhaps this could be a fresh start for us if Penn’s MRI in November looks good. Sheldon agreed that it wouldn’t hurt to research new or upcoming developments. So I got right to it. I reached out to a realtor that same day. Our dreams were crushed when he mentioned that there were no developments in the area in our price range. I then asked about a farmhouse development in our dream neighbourhood that was built over the summer. I asked if he could let me know how much it sold for. He told me he would find out and get back to me. 30 minutes later, he calls me, saying it will be listed on MLS tomorrow. The developer decided to off load the property. It was meant to be the show home however, they are focusing on a different part of the city and it didn’t make sense to keep it. What are the chances the day I decide to call this realtor and specifically ask about this property, it’s about to hit the market. Sheldon and I decided to check visit the property at lunch.
I’m not really into numerology, but this had to mean something. When we walked up to the house, the house number had my birthday, both of the girls’ ages and the number of years Sheldon and were celebrating - that month. The house was around 65% completed. When we met the developer and asked the possession date, he said December 8 - Sheldon’s birthday.
It really felt like the stars aligned. Before we knew it, we were putting in an offer. It was the most serendipitous thing Sheldon and I have ever done. But we had to seize this opportunity and go for it.
We moved into our new home, the white farmhouse on February 8th. The girls loved it and transitioned quite nicely.
I thought this would be our fresh start and we could move forward from our rollercoaster year. Now I am beginning to think Penn knew all along that this was going to be the best home for our family. Possibly, without her physically being there.
Family photo before we took possession.
While Paige was at school, Penn would accompany us during our site visits.
March 9
All I could do was cry. Seeing my baby in pain. I told her I’m sad and I’m sorry she is feeling sick. She wipes my tears away, pulls me in close and holds me. I would tell her over and over again that I love her. I love her and Paige and daddy. “And Pepper” she would say. “I love you mommy” and “mahal kita”. She always takes care of others. I’m almost certain she thought she was the Ate (older sister). She always looked after her family and loved ones.
Penn throughout the day would complain about her headaches. Left side of her head. She would complain about her tummy hurting. I would notice her legs displaced with the bottoms of her feet touching together while she was laying down. This was a similar position to when she would cry at night from pain a year ago. She started to become delirious from being so tired from lack of sleep. She won’t even eat. She’s not into ice cream. Nothing entices her. Her last meal was ramen with homemade chicken broth the night before her MRI. She ate one cheese bun and drank some of her taro milk tea with jelly and bubbles after her scan. After we found out her tumour had spread.
She deteriorated so much today. We had to make her comfortable. We would go back to the hospital to get pain medication, dexamethasone to reduce inflammation of her brain and anti-nausea medication.
Before we left for the hospital, our family all climbed into our bed. Penn even requested it. I think she knows her time is coming. It pains me to know this and think this. Paige is such a good Ate. Handing tissues to Penn while she coughed or needed to blow her nose. Paige would rub Penn’s back. We said our night time prayer in Penn’s room and ended with a group hug. We told Paigey before we left we have to take Penn to the hospital. But we will come back home. I really do hope this is the case.
On the way to the hospital she started to develop weakness in her right hand. With her left arm, she would hold her right arm up, and it would go limp. She could no longer grasp or squeeze my finger with her right. I could tell she was frustrated and scared, questioning what was happening to her body.
All Sheldon and I can do is be there for our Penn. Just like how she was there for us. We will continue to pray for her. To be with her. To love her.
International Women’s Day
It started with a headache. Penn mentioned it in passing. And my heart stopped. Was this a chronic symptom due to treatment? Or did this mean her tumour grew back?
Penn kept mentioning it ever so often about her head hurting. Her left frontal lobe. She would give it a rub, and go onto playing. Thankfully, she was getting a routine MRI done.
On International Women’s Day (March 8) Penn got her MRI. Penn knew the routine. She said she was brave. And I told her yes you are. You’re the bravest girl I know. I helped with the sedation and she was off to get her scans completed.
We knew it wasn’t good when the Diagnostic Imaging nurse mentioned the oncologist was on her way to talk to us. I looked at Sheldon and he looked at me.
While Penn undergoing the scan, they called her immediately. Her tumour has spread throughout her brain and into her spine. We cried beside Penn. We told her we loved her. And we will continue to fight for her.
We will take one day at a time and make sure that Penn is happy as long as possible. Thank you for continuing to pray, send positive thoughts and being there for our family.
Photo taken on February 28, 2022
Ocean home
We made it. Through mountains ranges, valleys and a ferry (I was quite medicated), we made it to Victoria, BC. Our ocean home looks onto the harbour. In the morning, we see seals swimming in the water and people kayaking. Our girls are so happy and it makes me realize we did the right thing. We decided to go on this adventure and it was worth it!
Valley home
When we left for Vancouver Island, interior BC had the highest number of active COVID cases in the province. We abided by the Provincial Government’s recommendations of non-essential travel within the interior. So we drove through the Okanagan, and stopped in the Fraser Valley in Chilliwack. On the way to Chilliwack, they loved all the tunnels in Rogers Pass, the greenery and the orchards. The girls were such troopers. Since the start of this trip Sheldon and I vowed to not use iPads unless it was an emergency. And so far, the girls didn’t use them. They quite enjoyed each other’s company and looking out the window.
It was quite difficult to see the charred forests along the Coquihalla highway. There were several hot spots and many helicopters were still putting out fires. You could see where wildfires jumped to the other side of the highway.
To be honest this is the only thing I remember about Chilliwack: a mobile chapel in between our hotel and a fast food joint.
Next stop: our ocean home. Hopefully we are lucky enough to see a whale and that I don’t hurl off the side of the boat!
Mountain home
I am a planner. All of our trips (even prior to having kids) were planned months in advance. So to book a 13+ hour drive to Vancouver Island in two weeks was quite ambitious. I would also like to add I have severe motion sickness. The thought of being in a vehicle for an extended period of time AND getting onto a boat to hopefully see a whale makes me to hurl. Despite COVID, post radiation side effects, wildfires burning throughout interior British Columbia, and my motion sickness I knew I would regret it if I didn’t try. Penn taught me I need to be more adventurous and to live in the moment. So we booked Vancouver Island and prayed that highways would be open, fires would be extinguished and COVID numbers would decrease.
I guess all of our positive thinking worked because when we left for Vancouver Island, wildfires had calmed down. The Coquihalla highway was reopened and active COVID cases started to decline. Gravol and candy saved me as we made our way to our ocean home. We took three days to get to the island. We took our time and decided we would not stop in the interior as recommended by the BC government. Our first stop: Revelstoke/the Enchanted Forest. Our BC mountain home. We don’t call them hotels because Penn thinks we are referring to hospitals.
Two hours into the trip, we had to stretch our legs. Not even half way to Revelstoke.
My brother Chris also came along for the journey. I don’t know who was more excited about visiting the Enchanted Forest, my brother and I or the girls. Growing up we drove by the Enchanted Forest so many times, but we never got to see it. The skies were clear and because school was about to start it was not busy. Some of the highlights of the Enchanted Forest: the girls climbing to the very top of the treehouse, visiting the three bears’ house and seeing a black slug for the first time.
When I saw this, I knew we made the right choice. Our new mantra!
So far, the journey has been great. We drove 4.5 hours, only 8.5 hours left to go! Our next stop: our valley home in Chilliwack.
Oh The Places We’ll Go
While we wait for Penn’s treatment results, we spend our days together in the mountains.
We even crossed off another item on Penn’s bucket list - camping. Despite the 50 km winds and low digit temperatures the first night, it was so worth it. Our campground even delivered beer and food to our campsite. Glamping at its finest.
To recap, here is Penn’s bucket list:
Go to the mountains
Go camping
See a whale
Visit a piggie at a farm
See a shark
Go to Disneyland
Go to the playground
Eat ice cream (If I could cross this item out a million times I would)
Eat chips (same with this one)
Have a picnic
Ride in the wagon
Throw rocks in the river
Blow bubbles
Make some art
With non-essential travel restrictions in place, Disneyland will have to wait. Is our family adventurous enough to drive 13+ hours through numerous wildfires to see a whale and/or a shark? Stay tuned for the next blog post…
Bell of Hope
When Penn would receive radiation treatment, we would take the elevators to the basement and check in at the reception desk. Beside the reception desk hung the Bell of Hope. The bell symbolizes a celebratory milestone for cancer patients who have completed their cancer treatment. Every day, we would hear the Bell of Hope followed by an applause from hospital staff and fellow cancer patients.
“What’s that mommy?” Penn asked after hearing the bell for the first time. I replied, “Someone just like you has cancer. And when they finish treatment they get to ring the bell letting everyone know they are brave and strong and they don’t have to go to the therapy centre anymore. One day, it’ll be your turn. You will get to ring the bell.”
Penn finished her 33rd radiation treatment on Friday August 13th. My Penny finally got her turn to ring the bell. We are so proud of her and how far she has come. We celebrated by taking a trip to the mountains.
After seven weeks of radiation treatment, I found myself lost, not knowing what I was supposed to do next. Every day, even though it was hard seeing Penn receiving treatment, we had our routine and I personally felt like I was doing something meaningful.
Never in a million years did I think the end of treatment would trigger another wave of anxiety. Because now we wait. We wait to see if treatment will work. And while we wait, our family decided to make the most of our time together. We will continue working on Penn’s bucket list.
Lucky number seven
Penn’s cancer diagnosis amplified our reality of uncertainty. We don’t know what tomorrow will bring and how much time we get with our loved ones. No matter what happens, we want our girls to know we love each other, and we love them. We decided we would renew our vows on our seven year anniversary. We would have our renewal at the same church I was baptized in and the same priest who baptized our girls would conduct the ceremony. Our family helped us organize our renewal while we focused on Penn’s treatment. There were times we thought we wouldn’t be able to go through with it. Perhaps Penn would be too sick to even make it to church, especially after her second craniotomy.
On July 30, we renewed our vows, after Penn completed her 24th radiation treatment. We also requested a special healing prayer for Penn and Paige. I wore my wedding shoes and the same dress to our wedding rehearsal in Maui. Sheldon wore two pins that held a lot of significance. The flower pin was worn at our wedding and was constructed from his Lola’s dress. The duck pin was also his Lola’s. The weather was perfect and we ended the day with the most delicious outdoor dinner at home. Here are a some photos from our special day.
Radiation treatment pt. 2
At the beginning of Penn’s diagnosis/treatment I focused on all the things Penn couldn’t do. How our entire summer was ruined. There was no way we could do anything after hearing the long list of potential side effects. I was angry. With all of the COVID restrictions being lifted, we were left behind. We couldn’t move on and enjoy the summer. Our days would be spent at the treatment centre and/or follow up appointments at the hospital.
Then Sheldon reminded me, let’s focus on the things we can do, rather than the things we cannot. I have to admit, he was right. I need to change my mentality. After Penn was taken off anti-seizure medication, she flourished. In true Penn fashion, she proved me wrong again. Other than some tiredness and hair loss in the first three weeks, she was back to her “normal” self. So we focused on completing items on Penn’s bucket list.
We saw dinosaur bones. We biked in the mountains to throw rocks in the river (multiple times). We cheered on Sheldon on his first trail run while breaking in his new shoes (he did amazing by the way). We saw baby pigs at a farm. We biked and ran to Penn’s favourite ice cream shops and bookstore. Penn looked at her treatments like her job. She wakes up early Monday -Friday for her treatment. Friday afternoon is the start of the weekend.
I haven’t been able to post because Penn has been doing better than I could’ve ever imagined. She continues to amaze me how she’s had two brain surgeries and 28 radiation treatments. When she wears her hat you really can’t tell that she has brain cancer. Tomorrow marks Penn’s last week of treatment. Thank you to everyone who continues to check in, send us positive thoughts and for your prayers. Penn is brave, she is strong and she is so resilient. All because of you!
Below are a few of my favourite photos from our recent adventures. There are plenty of updated photos in the gallery.
Checked out the Royal Tyrell museum
Biked 50 km round trip from Banff to Johnston Canyon. The sun was blazing and the mosquitoes were relentless but we all had a great time!
We cheered on Sheldon and met him at the finish line for his first trail run.
Penn has a lifetime supply of ice cream because of friends and family. Thank you!
Penn got to see baby pigs. She didn’t realize they could be quite smelly. She still loves them though!
She prefer to see baby pigs from afar.
Reading our new book before grabbing some viet subs and ice cream
Radiation treatment pt.1
Today marks Penn’s 12th treatment. She has officially completed 1/3 of her marathon treatment journey. Penn is doing well, despite daily trips to the therapy centre. Penn has gone through an insurmountable amount of change - physically, mentally and emotionally. She continues to smile, laugh, play and enjoy ice cream. She amazes us each and every day. This is a summary of what we experienced the past three weeks.
Week one: Penn is experiencing hallucinations, personality changes, significant irritability right after taking keppra (anti-seizure medication). Penn has no interest in eating, sleeping or playing with Paige. All she wants to do is lay down on the couch. Thanks to COVID, only one parent is allowed to accompany a patient while receiving treatments at the therapy centre. Penn cries for dad every day we enter the facility. Entry staff always question why I am bringing a child to the cancer clinic. I aggressively shout behind my mask, “because my daughter has treatment” while Penn continues to cry for dad. Trust me, it’s not like we want to be there and having a fun field trip. Sheldon and I advocate for Penn to stop her keppra medication because it is doing more harm than good. It takes a good week for her to be back to her normal self.
Week two: Entry staff no longer question why I am taking a kid to the cancer clinic. Screening is swift while Penn continues to cry for dad. Penn notices the following art along the hallway to the radiation treatment room: Sunflowers, family of cheetahs, the waterfalls, the dragon, pink flowers and the green rocket ship. We now have our rhythm and routine. Penn’s blood pressure, oxygen levels and temperature are taken. I hold her in my lap while Penn cries “don’t touch it” as the anesthesiologist sanitizes her PICC line before administering the “milk”. Penn stops crying, goes limp and I carry her onto her bed. The respiratory therapist removes her mask and is ready to give her oxygen. I remove her flower ruby earrings (ones I wore when I was her age) before she is transferred to radiation room 5. I give Penn a kiss on the forehead and tell her I will be beside her when she wakes up. I meet Sheldon outside and we walk around the hospital for 30 minutes. I head back to her room and put on her earrings before she wakes up. Penn always wakes up hungry and is adamant she opens her lunch bag and chooses her snack. She has a wide variety of snacks to choose from and the selection changes every day. Penn picks her bedtime story every night. Every day this week she chooses, “C is for Cancer.”
Week three: There are now five kids being treated daily at the therapy centre. This has never happened before apparently. On average, the cancer clinic only has one pediatric patient a year. Penn’s sense of smell is quite sensitive (she can’t stand the smell of vinegar). Play therapy is going well. Penn now understands that there are two rewards if she lays very still, with a mask in the radiation room - she can watch Paw Patrol and she won’t need a PICC line. We are hopeful that Penn won’t be sedated for her treatments. Penn is starting to lose her hair. The left side of her head is nearly bare. I can’t braid her hair anymore. I woke up to Penn cleaning all the hair on her pillow that fell out throughout the night with a lint roller. Her scalp is quite itchy and we often massage her scalp with Cerave multiple times a day.
This is what play therapy looks like. We left Penn in the radiation room and talked to her via the cameras/microphones.
Updated bucket list
Penn added a couple of items to her bucket list:
Go to the mountains
Go camping
See a whale
Visit a piggie at a farm
See a shark
Go to Disneyland
Same same but different
If you’ve been to Thailand, you’re probably familiar with the title of this post. Same, same but different. That’s how I would describe Penn’s recovery the second time around. Same hospital, different nurses. Same unit, different room. Same recovery milestones, different expectations. We knew when to expect daily rounds and what medication would be administered.
The biggest difference the second time around was Penn’s breathing tube. It made me sad she had one, but the apparatus didn’t scare me. Penn tried to extubate herself several times throughout the night. Sheldon and I would jump out of the cot every single time the alarm went off. Penn was in so much discomfort and had to be sedated regularly. At one point, it was every 45 minutes. I was confident Penn would have another swift recovery. She was strong, coherent and quite agile despite her breathing tube. Another sign that she’s a fighter.
We were anxious for the MRI results for two reasons: to see if there was any residual tumour left and for Penn to finally be extubated. I couldn’t wait to hold her and converse with her. On June 18th, Penn had her sixth MRI. Miraculously, no visible tumour was seen in the images. It was a complete resection. Even her neurosurgeon came into our room and said, “want to see images of a superhuman resection?” Her neurosurgeon is a miracle worker. She celebrates her achievements (rightfully so) and is elated to tell all the other medical staff how successful Penn’s second craniotomy went. Penn’s oncologist agreed that the MRI images looked amazing. Once Penn has recovered, she can start radiation treatment. Penn’s medical team was planning for radiation to start in ten days.
After the MRI we waited for Penn to wake up. Sheldon and I were right beside her when they extubated her. She was crying, tears streaming down her face but no sound came out. Respiratory therapists placed a oxygen tube beside her mouth to alleviate her sore throat and hoarseness of her voice.
It was such a gift to lie down beside Penn, have my arms around her, while she laid her head in the crook of my arm. Over the next few days, we cuddled with her a great deal while she recovered. Other than some slight weakness to her right hand, there were no major deficits that we observed. She was able to walk, talk, paint and write her name. A huge win for Penn.
Penn continues to beat the odds. We were transferred to the recovery unit in less than 48 hours. Another record. In seven days, we were discharged. Penn got a PICC line inserted the day we left, ready to start radiation treatment in five days. Thank you to everyone for your continued prayers and positive thoughts. It’s what keeps us going as a family. In the mean time, Penn says, “hang loose!”
Walked out of the hospital like a boss!! Seven days after her second craniotomy.
Round 2
The neurosurgeon admitted we have the hardest job - waiting. You have no idea how long surgery will take or what Penn will be like after. You can’t help but think of all the things that could go wrong while Penn is on the operating table. We anxiously awaited for the OR nurse to give us updates throughout the day.
Every time the OR nurse called, she reassured us that Penn was strong and doing great. Two other neurosurgeons were sent into the operation room to assess Penn. They were taking their time and being very methodical. Due to scar tissue from her first surgery, Penn required blood transfusions. Penn lost two litres of blood.
After five and half hours, we met with the neurosurgeon and she was extremely happy with the resection. They took out all the tumour minus a small portion on Penn’s thalamus. There was a chance Penn could be paralyzed if she was too aggressive and opted not to.
Our reunion the second time around was more emotional than the first. She was swollen and non-verbal because of her breathing tube but she was alive. Penn made it through a second craniotomy, six weeks after her first one. Tears rolled down her face while she tried multiple times to pull out her breathing tube.
When Penn saw me she slightly turned her body to the left and slowly patted the bed. I knew she was telling me to lay down beside her. Despite the breathing tube, leads, and endless IV lines, Penn reached out to me with both arms, and gave me the biggest hug. After all she’s been through, she was trying to comfort me. That’s what Sheldon always tells the girls - we need to take care of each other. We’re a team, we’re a family. Penn continues to surprise us with her resilience and determination. I am so proud of her and so proud to be her mom.
Not our first rodeo
Treating Ependymoma often starts with surgery, then radiation. There are currently no clinical trials for Ependymoma and chemotherapy is not used. Sheldon and I were happy she wouldn’t be immunocompromised. We were also hopeful that Penn wouldn’t need another craniotomy and could start radiation in late June. When Penn had her fourth MRI, we didn’t expect to hear not only would she have another surgery, but her tumour had already grown back. In just five weeks. A second craniotomy was scheduled in less than seven days.
I knew a second craniotomy meant greater risks. The neurosurgeon will have to be aggressive to ensure as much tumour as possible is removed. Penn’s neurologist will have to go into deeper parts of her brain because the tumour has spread since her May 3rd craniotomy. We should expect deficits after surgery. We won’t know what those deficits will be until she wakes up.
Due to COVID only one parent is permitted to accompany a child at appointments. After reviewing the latest MRI images and hearing the latest news, I just sat and cried, while Penn watched for “Nemo” and “Dory” at the hospital’s fish tank. It broke my heart Penn had to go through this again. And this time, the risks were greater and even scarier. Penn has done so well and who knew what next week would bring.
Penn told everyone that day I cried at the hospital. I told her I was sad because she will have to have another surgery. There is something on her brain that makes her sick and her doctor has to remove it so she feels better. She needs to remember that none of this is her fault, that she is brave and she has strength. Penn flexed her arm muscles for me. Once again, we will have to channel all our positive thoughts and prayers for another successful surgery. This isn’t our first rodeo. And even though we have been through this recently, it’s still hard to manage all your emotions, and all the emotions of the loved ones around you.
The day before Penn’s scheduled surgery, I went for an early morning run to try and clear my head. I ran for seven kilometres. It was around the six kilometre mark that a little voice inside me said, “She will be OK, she will get through this.” It was the first time I smiled in days.
Paige’s sixth birthday
We celebrated Paige’s sixth birthday the day after Penn got diagnosed with Ependymoma. You can tell from all the photos we took we were so relieved with Penn’s latest prognosis. Thank you to all our family and friends who stopped by!
Can’t believe our sweet Paigey is six!
Penn always eating. She loves Lola Elvie’s ube pandesal.
Paige and Penn’s food truck is open for business.
Paige is quite the photographer. I wouldn’t be surprised if she ends up having her own gallery one day.
Paige doesn’t like sweets but, she will eat cinnamon buns. Special order of fresh cinnamon buns from The Nash. The best ones in town!
Zoom call with the family. It was quite the feat storing 70 cinnamon buns!