Lily’s Story

“For a month leading up to the diagnosis, Lily had been complaining about soreness. After the first of several doctor visits, we were told it seemed like a muscle issue so we treated it with Tylenol and Advil. After a few more days without the pain subsiding, she was given muscle relaxers. Three days later, Lily and her father, Jeff, were in the ER at 11:00 PM getting an x-ray for sore knees. This was a girl who wasn’t ill very often and always very full of energy.  This wasn’t our Lily!

One night when Lily was trying to fall asleep, she looked up at me with the saddest face, crying, ‘What is wrong with me, Mom?!  I am in SOOOO much pain!’ I didn’t know what to do or to say, all I knew what that I wanted to make Lily feel better so I said, ‘Think of those poor kids in the cancer ward…they’re in a lot of pain. That is bad!’ Oh, how prophetic those words were!

After spending a listless Christmas holiday, Lily ended up back in the ER with sore wrists. She had lost 13 pounds in three weeks, so I also booked an appointment with our family doctor to get some further testing. The ER doctor ran some tests so that our family doctor would have Lily’s bloodwork at our next appointment. This was the first time Lily had to do bloodwork, which was pretty traumatic for a girl who didn’t love needles!

The next morning at work, a staff member said that my husband was waiting for me in the entryway of the school. That’s when I knew something was wrong. Jeff told me the gut-wrenching news that the doctors thought Lily had Leukemia and that we needed to go to the oncology clinic at the Alberta Children’s Hospital as soon as possible. I was numb! I immediately went into what I call ‘intense focus’ and tried to get everything I could in order. I remember shaking as I gave directions to my students, asking them to help whoever was going to cover my class. I then grabbed my other daughter Macy off the playground, picked up Lily from my Aunt’s house then headed straight to Calgary to the Children’s Hospital.

Sleepy Lily getting some much-needed rest at the Alberta Children’s Hosptial.

When we picked Lily up, she had a bazillion questions, ‘What’s wrong with me? Am I going to die? I’m scared!’ I kept trying to reassure her and told her that we would know as soon we talked to the doctors. She wasn’t aware of what oncology meant. She had no idea what was going to happen next. It was the longest hour drive of our lives. All I could do at that moment was reassure Lily, all while wondering how our lives were going to change. I texted our family and church family and asked them to pray for us.

Finally, we made it to the clinic and sat down. Lily looked around at the posters on the wall and noticed the word cancer. Fearfully, she looked up at me and said, ‘I HAVE CANCER… I AM GOING TO DIE AREN’T I MOM?!’ That was extremely difficult to hear. I continued to reassure her and told her we had to wait to hear from the doctor. I guess I was hoping it wasn’t going to be said.

As we sat in the examination room, Lily looked around at all the different signs. She underwent many tests, cuddled and cried as we waited for an answer. Much later, Lily confessed that while we were sitting there, she was writing her obituary in her head, dividing up all her possessions gathered in her 13 years of life.

Finally, Dr. Anderson and our primary nurse JoJo walked into the room. Our hearts stopped as he confirmed our worst fears. Lily did indeed have Leukemia… but it’s a type of Leukemia called Acute Lymphoblastic Leukemia (ALL) which the survival rate is 98%. With those statistics, I knew we had a fighting chance, and that ALL wasn’t a death sentence. Dr. Anderson reassured us that Lily didn’t have any other complications and that he felt very hopeful. All I could think of was all those Terry Fox runs I’d helped plan and how much money it raised for cancer research. I was so thankful that all that would help MY DAUGHTER! We can beat this cancer!

Lots of love and support for Lily.

We moved to unit one and settled into our room. Lily was filling out the whiteboard with her personal information. When she got to the question, ‘Primary language spoken,’ she wrote ‘Pig Latin.’ I knew then that everything was going to be okay. After everything, Lily’s humour remained intact and that’s what was going to help us get through this. That night as we sat in our room Lily looked at me and said in her cheeky voice, ‘Remember Mom… what you said that night when I said I was in a lot of pain?’ I remembered. I gulped and answered, ‘Yes.’ Lily responded, ‘I guess I DO know how those kids in the cancer ward feel!’ We had a laugh and a cry over that!

The first eight days in the hospital, we met some amazing individuals. The first night, a student nurse distracted Lily by singing as she attempted to put in her IV multiple times. We were treated to Pizza Night and used our unlimited trips to the movie library as a way to help up get through the long sleepless nights.

We met with our social worker, Wendy, who took us through all of our questions and informed us about Kids Cancer Care. Lily met her Child Life Specialist Chantal, who played a vital role in her visits to the hospital. Chantal brought a bright energy to the room that Lily fed off of and the two of them made a strong connection. Once Chantal found out that Lily was into music, she connected her with a music specialist named Mark. Mark dropped off a full keyboard which gave Lily something different to do while we were there. We were surrounded by love on all sides.

Lily hanging out with her furry friend.

My husband kept our family and friends informed while we were in the hospital. He drove back and forth to be with our other daughter, Macy. When I thought about Macy, sitting at home wondering what was going on, it made me cry. One night, when Macy was visiting and Lily had left the room, she asked me with tears in her eyes if her sister was going to die.

The first few days were a whirlwind, so many decisions needed to be made like, did we want a port? What was happening next in treatment? What happens after this first induction round? Lily had qualified to represent our zone in fencing at the Alberta Winter Games, who did I need to call for this to be cancelled? What about her planned school sailing trip in April? All of these questions were running through my head.

During our round table meeting, I remember sitting with Jeff as Lily’s case was introduced. It was mentioned that she was a high risk Leukemia patient and Jeff broke down crying. I handed him the Kleenex box as I stayed focused and listened to everything that was said about Lily’s case. It was like I was hyper-focused and had a God-given peace to take in everything that had to be learned.

There was so much support from family and friends who took time away from their scheduled activities to be with Macy, our dog Remy, to bring us food, give us hugs and many, many prayers. Coming home from the hospital was a mixed bag of emotions. I so wanted to be home but was scared to leave the security of the hospital staff knowing way more about this than I did. I finally broke down on my first trip to the pharmacy when the pharmacist asked why I was getting this prescription. I had to say it out loud, ‘My daughter has leukemia!‘ Those were hard words to say.

Always a smile and a great sense of humour with Lily!

The next 10 months were full of treatment trips to the clinic. Lily lost so much of her muscle strength that she would collapse while trying to walk to the washroom from her bed. We had to use the wheelchair. I got a few looks from people when I jokingly dropped her off at the top of the parking lot and said to her, “Maybe I will come back and get you!” Lily would always try to look as pathetic as possible to make people ask if she needed help… just to rub it in when I went to park the vehicle. Our humour got us through that.

During the treatment, Lily had an allergic reaction to one of the chemo drugs. To see your child lose her ability to breath in less than three minutes was the scariest moment for me as a Mom. Her allergy caused us to change chemo drugs, which in turn meant instead of one fifteen-minute treatment, she had six treatments spread over 12 days. We got very familiar with the hour plus drive in rush hour traffic. Our trips to the hospital were made bearable by karaoke singing to many different musical soundtracks, choosing the most beautiful route to get to the hospital, and looking forward to what we were going to eat when Lily got home. After major milestones, the family was known to visit Red Lobster in celebration. Lily’s insatiable appetite, while on prednisone, wasn’t easy on the bank account, especially after seeing all the Lobsterfest advertisements!

After the first month of treatment, we were given the news that Lily hadn’t reached the remission stage yet, so this meant even more treatments. But after her second round, we learned that Lily had met the remission standard! I knew we had the possibility of a marrow transplant if she wasn’t in remission and that was one bridge I really didn’t want to cross. By this time, I was back at work and Lily and her Dad were at an overnight stay at the hospital, so she told me the great news over the phone. I was ecstatic, but when I hung up it really hit me. I just sobbed with relief. We could do this!

If there is such a thing as perfect timing for cancer, we had it with treatments over summer. Lily was not so immune-compromised, which meant she could attend a variety of summer fun activities such as summer camp, a friend’s wedding, visiting with grandparents and cousins and of course, going to see Les Miserables.

Lily, her Mom and sister Macy at the Calgary Zoo visiting the Pandas.

Kids Cancer Care has provided our daughters with many unique opportunities. Lily and Macy got to see pandas at the Calgary Zoo, which wouldn’t have happened otherwise because Lily can’t go to places that can compromise her immunity. Both girls went to Camp Kindle and had a great time meeting new friends, doing crafts, playing in the outdoors and sleeping at Sunseeker Lodge! Last November, we climbed aboard the Polar Express Train Ride in our PJs, another very memorable night.

Jeff and I even got to spend an evening with other parents at a Kids Cancer Care cooking event. It was a great opportunity to meet people who we’d recognize from the clinic but didn’t get to chance to talk to. All of us parents could speak the same language without needing to explain what it meant. These events have been a blessing to our family, a bit of normalcy in a not so normal life.

During her 11 months of treatment, Lily missed a lot of school due to her treatment schedules and low immunity.  The school was so generous and worked with us to make sure Lily was ready to start grade nine in the fall. They also made sure to schedule subjects in the first semester that was easier for her to do independently. Now that she’s back in school as full time as possible, Lily has realized how much she missed the interaction with other students and teachers. During the exam break, she was going to go to the school to study, even when she didn’t have to. Lily was very blessed to not have any trouble in her academic pursuits due to treatment and has maintained her great marks.

(L-R) Lily, Michelle (Mom) and Macy in their signed camp t-shirts. One of the many traditions at Camp Kindle is to have your camp besties sign your t-shirt before you go home.

On December 23, 2018, we officially started our two-year maintenance phase of treatment. This means we will be taking chemo pills daily at home and doing monthly visits to the hospital for IV chemo. The road is long but at least the prognosis is good. We’ve felt the love and support of many amazing people, friends from before and those we’ve met since January 18, 2018. For these reasons and the many amazing things that have come from this journey, I feel blessed.”

~ Michelle, Lily’s Mom