The summer of 2016 started normal. I was 5 years old, and I enjoyed playing outside, swimming, hanging out with my cousins, and soccer, as a normal 5-year-old would. I remember having family pictures with my whole extended family on my mom’s side. The weather was beautiful, the sun shining bright at Waterworks Park in St. Thomas.
I began coughing sometime in July. The cough sounded like a dog or a seal, and it hurt my throat and sometimes my chest. I also had a very sore stomach that made me feel nauseated. The doctor gave me medication to treat my stomach aches and what they thought was croup. I began to feel a bit better, but not completely. I still remember the aches and pains clearly.
I went camping with my grandparents when I was feeling better. After a few days of camping, I started to feel very sick again. I had a sore stomach and I felt like I could not move. I remember laying on the trailer floor, moving around to get comfortable. I was scared and nervous. My grandma decided to bring me to the hospital because I was not acting normal. They diagnosed me with an infection and sent me home. Shortly after that experience, I was with my dad in the store, checking out our purchases, when I threw up on the checkout counter. My parents thought that I may have been having an allergic reaction to my antibiotics.
On August 10, 2016, I woke up in the middle of the night, went downstairs, and told my parents, “I need to go to the hospital,” because I felt so ill. The pain in my stomach was so awful that nothing could relieve it. We had tried everything to take the pain away including Tylenol, Advil, a heating pad, essential oils, and warm showers, but nothing worked. My mom took me to the St. Thomas, Elgin General Hospital. My dad stayed home with my brother and sister, who were 1 and 4 years old and still sleeping when we left.
I remember very little about what happened after I left my house. The first thing I remember after that was being in the emergency room. We waited for hours to be seen by a doctor. The hospital was extremely hot because it was August and the air conditioning had broken down. Finally, I was brought into a room with my mom. The room I was brought into was shaped like a square, small, and smelled stale.
A few hours went by, and I was moved into a different room. This room was separated from the other rooms by weird colourful curtains. My grandma had arrived when we moved into this room. While waiting the doctors, nurses, Mom, and Grandma were starting to get worried because the cough that I had was starting to sound like a barking seal. The nurses also thought that it sounded like it was hard for me to breathe. They sent me to have an X-ray on my chest, and then I was moved to a room upstairs. This was when the doctor came in and told my mom and grandma that I had a mass in my chest, and it was likely cancer. The doctor said, “She needs to be treated in London and one of the best oncologists will be meeting you there.” My other grandparents had arrived and were told the news. My papa went to get my dad from work to meet us in London. Then my mom went home to pack a bag for us. By the time she got back, I was on a stretcher ready to get in the ambulance. Before I went in the ambulance, my mom gave me a pair of blue rosebud earrings that she knew I loved. I don't remember any of the ambulance ride. My mom, my doctor and a paramedic were in the back with me while my Grandma rode in the front seat.
When I was brought to the Children's Hospital in London, my dad met us in the emergency room, along with all four of my grandparents. Our family doctor also met us there and stated that this was likely cancer and said, “it is leukemia or lymphoma, just need to figure out which one.” She stated that it was curable and that I would fight and win this battle. I was in the Pediatric Critical Care Unit for 3 days while they worked to stabilize my health. I couldn’t eat anything except for ice chips because I wasn’t well enough to eat anything else whatsoever. I didn’t even want to eat anything at the time. When I was in PCCU, my whole family arrived. I remember the room being very small and crowded with many people. I had to have many kinds of tests, with one being an MRI. They gave me sleeping medicine, but I was so anxious and scared that I did not fully fall asleep. I was crying a lot, and I kept crying for my mom and dad. While I was in the machine for the testing, I had a dream while I was awake. It felt really real, I was dreaming that I lost both of my parents, I was all alone. The machine was very loud and it had many different beeping noises. After that, I had to have a surgery to put a device in my chest called a port. A port is the size of a smartie, and I was able to get blood work done through the port instead of having a needle in my arm every time. I began chemotherapy while in PCCU.
After three days, I was moved up to B6, which is the floor for children who are sick. The hospital bed that they transported me on was packed high with so many things like bags, clothes, gifts, games, and crafts. I remember going up in the elevator and being so excited that I was finally going to be in my own room with a real door! A couple days later, I started more regular chemotherapy, which had many side effects. However, one of the biggest side effects was that I would lose all of my hair. When Mom and Dad told me this, I was completely devastated when I found out. From that moment on, I knew that my life, as I had known it, was not going to be normal ever again. I remember when there were just clumps of hair on my pillow when I woke up every morning for almost a week. Before I started chemotherapy and lost all of my hair, it was pin straight and very light blonde. When it grew back, it was dark brown and super curly.
The doctors said to my parents, “Lorelai may have to stay in the hospital for an entire month at the beginning of her treatment.” I was able to go home after only a couple of weeks, and I was beginning to feel a bit better. I had to go to “clinic” two or three times every week. These appointments were always early morning appointments for getting my height and weight checked to make sure I was not losing any weight with treatment. I also had to get blood work done to check my blood which included red blood cells, neutrophils, white blood cells, and platelets. This blood work was done through my port. Sometimes we had to wait so long for my counts to come back. I often had fun when I was feeling well enough because I could eat a lot of ice cream and popsicles and play games with people in the hospital or the parent that had come with me. Other times, it was boring because I was not feeling well, and I didn’t feel up to doing anything at all. When my counts came back, the doctor would decide if I was able to get chemotherapy that day. I also often had to have lumbar punctures (LPs) and bone marrow biopsies while at clinic.
Treatment for leukemia involves having many different chemotherapy drugs and tests that could also make me get other illnesses much easier. The doctor said, “If she is fevered, she must go right to the emergency room to be checked out because any illness could have been life-threatening.” If my neutrophils were low, then I had to be admitted for 48 hours with no fever before I was able to go home. This happened often while I was on treatment. Sometimes I had to stay for a month at a time. Every time I woke up in the hospital in the morning, it made me think that I missed my own bed. I wanted to go home so badly. I sometimes even felt like I lived there.
While I was in the hospital, I craved many foods because of the chemotherapy I received. Some of these cravings got to be very excessive. I had a Kraft Dinner phase where I would eat it for breakfast, lunch, and dinner for months at time. I also craved salty things like sausages, butter, and pepperettes. One time, I woke up in the night and asked my mom to make sure we had enough cheddar sausages to last the whole next day. I would not go back to sleep until I felt confident in her answer. My mom told me how she vented to a friend later the next day and said, “I do NOT want to talk about sausages anymore!” These cravings often switched and sometimes I would become bored of these foods and refuse to eat them. Popcorn was something I craved often and this craving has not gone away. When I ate popcorn it always had to have many layers of dill pickle seasoning on it. I would always pick the popcorn apart so that I didn't have to eat any kernels. This resulted in one bowl of popcorn lasting me a very long time!
I met so many families, nurses, and doctors while being treated at both hospitals and staying at the Ronald McDonald House. I had favourite nurses in the Pediatric Medical Day Unit (PMDU) and on B6. My favourite nurses in PMDU were Christine, Armella, and Maddy. I remember these three clearly because they always made me feel comfortable and were so kind, even if I was grumpy. My favourite nurses on B6 were Brittany, Vanessa, Jess, Jenna, and Tamara. I have special memories with each of them, but here are a few of my favourite. First, Vanessa, my birthday buddy, was a nurse that I had often when admitted. Every time I was in the hospital on my birthday, she would come visit me. Next, Brittany, another nurse kept me company while my mom was at her soccer game. She turned me into a “Syringe Police Officer.” We made a police hat out of medical supplies and taped saline syringes to the hat. We also made a belt from splints and medical tape with more saline syringes taped to it. When my mom came back to the hospital, I squirted her with all the saline syringes. It was very funny, a good way to pass the time, and helped make my hospital stay interesting. Finally, another great memory that I have is receiving my first homemade slime from Tamara.
There were lots of other people at the hospital that made my time there better. Mark worked in PMDU and was a crazy driver. He would bring me to my LPs and I would hold a steering wheel to steer the bed to the right room. He also would always be willing to get me popsicles, and ice cream or find a bowl for me to put my popcorn or slime in. Ollie the Clown always carried his “brain” in his hands and would throw it around to try to make me laugh. He was a very good artist and would blow the latex gloves up and draw any picture you’d like on it. I also grew to love Deborah from Childlife. She would come with me to procedures and be close by when I would get needles so that if I was scared she could comfort me. Deborah helped by playing games, bringing toys, and distracting me. My mom says that Deborah’s calming voice always helped in hard situations. Often, other visitors would come to play with me. One of those visitors was Fiona, who was from Camp OOCH. I also was able to have some friends come spend time with me while I was admitted including my close friends Abi, Jessalyn, Emeleigh, and Emma. My grandparents and cousins also spent lots of time with me.
Bravery beads were a big part of my time spent at the hospital. Every time there was an event, treatment or special occasion, I got a special bead. Each bead signified something different. If I got a poke (a needle), I would get a white sparkly bead. If I received a blood transfusion, I got a red shiny bead. I did not like receiving the beads that represented hair loss. I had many small blue beads for staying overnight at the hospital as well as many of the white beads for pokes. At a football game dedicated to Childcan, I measured my beads on the field. They stretched to a length of 20 yards! My beads are now displayed inside a shadow box.
The last day of my treatment should’ve been November 28th, 2018, but unfortunately, the oncologist called my mom and said, “the leukemia was back." While they were doing a lumbar puncture, they found cancerous cells in my spinal fluid that had been hiding. I had relapsed. This meant that the doctors and my parents had to discuss the next steps to make my cancer go away and stay away. My parents were told by the doctors that my chances at beating leukemia again were not the greatest. I stayed in the London hospital for a little bit longer to receive treatment to put my body back into remission. The decision was made for me to have a bone marrow transplant. I had to be treated at Sick Kids in Toronto at this point because LHSC does not perform bone marrow transplants.
Before we moved to Toronto, the doctors had to find a match for my bone marrow. My immediate family including my parents and siblings were tested, and they were all 50% matches. My sister would have likely been my donor if they had been unable to find a 100% match or my transplant did not work. Fortunately, there were three perfect matches found on the bone marrow registry. My doctors picked the best one that they thought was a good match. We moved to Toronto on April 10th, 2018. I had to have a mask made for my face and neck for radiation. The mask made it, so I could not move my head while I was undergoing radiation treatments. It felt tight and hot on my face. While I was having radiation, I got to watch a movie. The movie I remember watching the most was Marmaduke. I did three days of full body and head radiation, twice daily. Then I had to be admitted for very strong chemotherapy medications for two or three days. My mom told me that these chemotherapy drugs that I had made me really sick and unable to eat because I had bad mouth sores. Thankfully, I don’t remember much about this. The day I had my bone marrow transplant, I had lots of rashes and there were many doctors and nurses in my room to make sure I was okay.
After the transplant was over, I had to stay isolated in a small, stuffy hospital room that had massive doors with a button to push to exit the room. I remember feeling frustrated because I was too short to reach the button. The room didn’t even have a washroom in it, and I had to use a commode. Everything had to be wiped down or washed by my parents before being brought in. I had zero immunity at this time and could die even if I got a simple cold. I didn’t see outside, my siblings, family, or anyone under 18 years old for at least three weeks. I remember waving to Sydney and Kade from the window in my room on the 8th floor. It felt like I was trapped in a box for months. I had a hard time eating and lost a lot of weight, but the nurses and doctors were always happy about how much liquid I was consuming. Most of this liquid was in the form of a freezie. I enjoyed playing bingo on the TV from my room, but I never won a game. I had to stay in isolation until my new immune system that I had received from the donor began to work. After this, I was able to get out of the room and move into the Ronald McDonald House with my family. I went for regular check-ins at Sick Kids with my oncologist there. My mom and dad would switch off staying with me and we would walk to the hospital. Because it was the summer, it was hot, sticky, and gross outside. I had to be readmitted for illnesses twice, but I was able to return home to St. Thomas in July 2018.
When I was diagnosed and throughout my treatment, relapse, and recovery, the community and family support was very encouraging. There were fundraisers, concerts, draws, auctions, a GoFundMe set up, and our church even helped pay for us to go to Great Wolf Lodge with my family when we found out I had relapsed. A kind woman reached out to my mom and asked if she could have orange and purple silicone bracelets made that said #prayersforlorelai on them. These were then sold to the community, friends, and family. The bracelets were designed with me in mind; orange is the universal colour for leukemia and purple was my favourite colour.
Childcan was a huge help through my time in the hospital, because they were always so supportive. They gave my parents parking passes for the hospital parking lot and parking garage, so that they didn't have to pay every time they came to stay with me. Childcan also provided us with meal vouchers for the cafeteria, which helped to lower the cost of meals while I was staying in the hospital or receiving treatments. My mom remembers how Renee came to see her when I was in the PCCU. It was a very overwhelming time for everyone and Renee was able to bring comfort, kindness, and support in a tough time. Now, my family and I enjoy participating in special fundraising events for Childcan including the Polar Bear Dip in Port Stanley and the Childcan walk at Springbank Park. One year, I even got to set off the air horn to signal that everyone could go into the ice-cold water.
Leo Larizzo and the TLC Foundation also brought me joy while I was ill. Leo would give gifts to sick children in the hospital. I received many gifts from him including: a pink Barbie car, A Nintendo Switch, huge Lego friends sets, a bike for my birthday, and breakfast in bed. I remember being so tired of hospital food and the breakfast that Leo brought was amazing. It included pancakes, strawberries with maple syrup, and berry skittles. It was hot and just what I needed to cheer me up. I was also really into Shopkins so he bought me an entire box of them. One time, Leo also brought presents for my brother and sister, which I thought was really cool!
Children that are sick with life threatening illness are often able to be considered for a Wish through Make A Wish. My wish was to go to Disney World. My dad, mom, brother and sister came with me. We stayed at Give Kids the World, a village just for Wish Families. The houses in this village looked like the houses from A Wrinkle in Time. In this village there is a pool, a spa, a talking tree, lots of parks, and a building called the Castle of Miracles that has stars with names on them all over almost every surface inside. These names were not just random kids' names, but they were the names of children that had previously come to stay in the Give Kids the World Village. The house I stayed in was bright orange. I remember it being very warm in Florida. Every morning we got to eat ice cream for breakfast!
When I returned to London for my appointments, I did not have to be seen as often. I was only readmitted one time after my bone marrow transplant. My port was removed in August 2018. I was able to return to school that fall and began to resume a life that was as normal as it could be. In June 2021, I shared with my oncologist that I was worried that my cancer would come back. She reassured me that it was very unlikely that it would return as so much time had passed. That day, my doctor said, “I would consider you cured.” I felt very happy and at ease when I heard her say this. That day, I also graduated to the Aftercare program at LHSC. At first, I only had to go every 6 months and then I was able to begin to attend yearly. The goal of my clinic visits was to ensure the cancer had not returned. The goal of Aftercare is to watch for side effects of the treatment I received. This will help them make decisions with treatments for other children with leukemia. In December 2022, I was considered to be in complete remission which left me feeling excited and strong. My mom wrote a letter to Canadian Blood Services about finding out the identity of my donor. Unfortunately, due to Covid, this was delayed. We recently found out who the donor was. He lives in Poland, his name is Radoslaw Koczara, and we have been in contact. I am grateful that he decided to donate his marrow to me because he saved my life.
Thank you Lorelai for telling us about your cancer journey in your own words.
Thank you Lorelai for encouraging others to Be Brave… Like You, by making a donation to Childcan’s 50th Anniversary appeal. In 2024, Childcan has set an urgent goal to raise $50,000 to provide direct family financial support to help because the costs associated with childhood cancer are staggering and the financial burden on families already enduring so much is overwhelming. Your donation can help lift that burden. Please donate today. https://childcan.com/be-brave