Eleven

Episode IV XI	Eleven
Neuroblastoma: No, it's not a space program...
Blog Beat	Move Along | The All-American Rejects

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A brief autobiography: my relationship with cancer...

Y2K

I was 11 years old and experiencing recurring throbbing pains in my legs. After several visits and dismissals from the ER concluding "growing pains", my mother got fed up and convinced my family doctor that something was definitely wrong. A bone scan was scheduled: I remember lying down with the scanner literally millimetres from my face… The biggest problem I had with that machine was that I wasn't allowed to move for like an hour - a hefty challenge for a sixth grader. I didn't think anything of it, and went about my days as usual.
Then one day while sitting in class working on a project, a call comes in from the principle's office declaring that my mom had come to pick me up. Now, it did seem a bit odd that I didn't remember having an appointment, but though I must have just forgotten; after all, what kid would refuse leaving school early, even if it's for an appointment with your dentist? I figured my mom would remind me when I met her at the office.
I packed up my things and cut across the school yard from my classroom portable to the main school. When I opened the door and looked down the hall I instinctively stopped when I saw my mother and my father: he never picked me up from school. Something was wrong. My mom approached, carrying a manila envelope and a look on her face that confirmed my assumption.
"No matter what happens, I just want you to know that you are going to be fine..." was all she had to say, and I knew my world had just shattered.

You are going to be fine...

Tested Positive

Several lesions were found on my bone scan, and after several other imaging tests it was discovered that I had a large tumour in my abdominal cavity and a smaller one pressing on my spine -- that's what was causing my leg pains. My doctors were surprised that my apparent state of health did not at all reflect what was going on inside my body: the tumour on my spine should have paralysed me; the other was about the size of a cantaloupe. It was surgically removed, and I spent a few weeks in recovery at the hospital. After being discharged, all I wanted to do was get back to school. I was waiting for the clear from my doctors: good news; the tumour was completely benign. I could probably start school again after Christmas. The pains in my legs were gone, but now I have pain in my back, and it's much worse than what I was feeling in my legs...

Bad News

I had been in and out of hospitals for a couple months, getting more scans and surgery follow-ups. I was regularly visiting the hematology clinic and my parents where rotating on who would stay with me at the hospital overnight, and who would take care of my brother at home. I was watching TV in my hospital room with my dad. We were waiting for someone to give us the results of a series of tests I had undergone to figure out what the heck was going on...
I started to get anxious, so my dad decided to distract me with his laptop - I think he was starting to get nervous too. A coordinator showed up and my dad left with her. I tried to play solitaire, but couldn't concentrate. I remember saying to myself "Why are they taking so long? Something has to be wrong". I was staring at the green background of the game of solitaire when my dad opened the door...
"Turn off the computer, Bianca..."

Turn off the computer, Bianca...

Dad and Daughter

"You have cancer".
Run. That was all I wanted to do. Thinking back on it, I probably had a rush of adrenaline, cause all I could think of doing was running. I tried for the door when my dad caught hold of me. I told him I needed to walk, I needed to move. I couldn't sit still, I needed to go. He wanted to call mom and tell her. "Just wait and I'll come with you. I have to call mom first." I paced back and forth until I finally sat down. I remember my father smacking the side table with force. It surprised me but I didn't jump. He was angry. I was suddenly exhausted, and just wanted to sit on the bed. I thought about how my mom was reacting on the other end of the line. Them I thought of my little brother: it was his birthday, he turned 9 that day. Then I thought about how I would always associate his birthday with my cancer diagnosis. "Great," I thought. "That's gonna suck". I didn't notice time passing until my father hung up and said we could walk. I told him I didn't want to anymore. He looked at me with an expression I had never seen before...
(Sorry, time out. This part is really hard for me to get through just because I remember it so clearly... It's a moment I know I'll remember for the rest of my life because it had a huge impact on me… My dad and I were never really that close… I was always hanging out with my mom, but I feel that that is pretty typical. He worked a lot, but I still spent every Saturday morning watching cartoons with him and my brother, but what happened next solidified for me how much a father could love his daughter, even if they didn't spend a lot of time together...)
My father was crying. Up until this point I had never seen my parents cry. They were superheroes to me. They had all the answers; they knew everything; they were invincible. But now, my father is crying. "Bianca. If I could take this pain from you, if I could do this instead of you... I would." I knew he couldn't, but I had never loved my father more than in that moment.

Rx

By some twist of fate (and medicine), the lesions on my bones were malignant: apparently not a common occurrence in cancer, to have both benign and malignant forms of the same cancer at the same time. I had stage 4 neuroblastoma. I underwent 6 rounds of chemotherapy, 20 rounds of radiation, and a bone marrow transplant. I couldn't go out in public for months because I had to rebuild my immunity. I wore a handkerchief on my head to hide the hair loss, and barely recognized myself without eyebrows. I was always nauseous and tired. To this day I still consider nausea to be the worst pain ever. I missed school, my friends, I missed being normal; I missed being healthy. My mom had to take leave from work to take care of me; I think my father took it hard, and dealt with everything better by keeping busy. I couldn't blame him. I had to keep busy too (we're a lot alike that way...): that's when I got into arts and crafts! It kept me optimistic.

Recovery

I thought I would be able to jump back into the swing of things when I went back to school, but things had changed. People looked at me differently; like I was made of glass or something. I didn't realize how much things had changed, until I realized that the things I was dealing with were much larger than those of a typical 12-year-old. It became harder to connect with other kids because I felt like my life was in a totally different place. I was always so concerned about my next follow-up appointment, having to drink that barium solution for a CT scan, psyching myself up for tight-fitting MRIs, and wondering if I would live to see my 16th birthday. I felt emotionally isolated, like no one in the world understood what I was feeling.

I got through it. I lived one day at a time, and got through it with the help of the people that supported me the whole way… My mother was my rock: she came with me to every appointment , spent all day with me at home, kept me distracted, and waited until I fell asleep on nights that I was too scared to sleep alone.

My brother kept me grounded in childhood: we obsessed over video games and conspiring against our parents and rearranging our inflatable furniture. My friends kept me up with the gossip at school, and my team of doctors and nurses who provided the treatment I needed to get better while keeping things positive with the smiles I saw on their faces everyday.

Neuroblastoma

Neuroblastoma is a cancer of the sympathetic nervous system. It arises in or around the adrenal glands, but can also occur in areas where groups of nerves exist, like the neck, chest, abdomen and spine¹, and is the most common solid tumour that occurs outside the brain4. It usually affects babies and young children (under 5)^2,4, and is rarely found in children older than 10³. Neuroblastoma is rarely caught early, as most diagnoses occur after the cancer has spread³. Some forms of neuroblastoma regress on their own and die, while others mature and become benign^1,3.

A daffodil for neuroblastoma awareness

♦   ♦   ♦

The Music

You probably noticed that every entry of this blog has a song attached to it. I try to stick with theme of the post, because I feel like there is a song for everything. I always have music on in the background while I'm working (currently, Sound of a Woman by Kiesza). It wasn't always like that though; the need for a song stemmed from my battle with cancer.

My high school hosted a Relay For Life event, where teams walk around a track from 7pm to 7am to raise money for cancer. There was a point where I was walking the course, sometime around 2am, and I thought about my time battling cancer, and what the Relay was supposed to do for people who have had similar experiences. I was the only member of my team on the course at the time, and I was exhausted; my feet were aching, my back was sore, my legs were tensing up (yes, I was incredibly out of shape), so I considered stopping and heading inside anyways... that's what most of the other teams had done. I was just about to quit when the DJ decided to play a song I had heard a thousand times before. It started with an encouraging drum beat, and I immediately recognized it as Move Along by The All-American Rejects. I liked the rhythm, so decided to stay for this one more song and kept walking.

I am usually terrible at catching lyrics, but at this point, I was focussing on the words of the song instead of my aching feet. It was the first time I listened, and discovered how much I wished I knew that song sooner... It was the song to describe how I was feeling, and what I had to do to overcome it. It was like a theme song to my life at that point, and still a comfort to me now; not just because it encourages me to move along, but also knowing that I am not alone...

Thanks For Reading...

My mother is raising money for the OneWalk to end cancer, contributing to the Head and Neck, Brain, Central Nervous System, Eye, Skin and Melanoma, and Endocrine Cancer funds. Please donate, and thank you for your support.

¹ http://www.mayoclinic.org/diseases-conditions/neuroblastoma/basics/definition/con-20027487 "Neuroblastoma"
² http://www.cancer.ca/en/cancer-information/cancer-type/neuroblastoma/neuroblastoma/?region=qc "What is neuroblastoma?"
³ http://www.cancer.org/cancer/neuroblastoma/detailedguide/neuroblastoma-key-statistics "What is neuroblastoma?"
⁴ http://childhoodcancer.ca/education/types-of-cancers/other-cancers "Other Types of Cancers"

"When all you got to keep is strong, move along, move along, like I know you do; And even when your hope is gone move along, move along, just to make it through" - Move Along, The All-American Rejects