Well, if cancer wasn’t bad enough, now my arm won’t work. I just
learned how to walk downstairs again, which was really hard when my feet would barely come off the floor before they dropped again. Neuropathy is the fancy word the oncologist called my diagnosis when I couldn’t run, descend stairs and ramps, tie my shoes, pick up coins, and even button my pants. Even if I tried to hold the rail right now to get down the steps to run away before anyone noticed, it would be impossible because my arm is completely dead.
I’m trying to play Minute to Win It. It’s this game my family is playing with some friends where we have to do these tricks where I need both arms to work. It doesn’t matter how hard I try to move the tissues that I’m supposed to blow with a straw, my arm just will not work. FLOP! It falls on the table instead of holding the straw. I cannot hold it, but I try and try and try with no success.
My arm just keeps flopping. Flop. Flop. Flop.
We lose. Because my arm is making this flopping noise when it falls on the table, people are starting to stare and ask questions, especially my mom. The people we are playing with are a part of my club. It’s a club no one wants to belong to because it is only for kids with cancer, not like a real organization where kids choose to sign up like chess club. In fact, it’s not really a club at all, but a group of people who get together because of the unfortunate circumstance that my friends and me have or have had cancer. I joined this club when I was diagnosed with stage IIB, intermediate risk, perimenengial, embryonal rhabdomyosarcoma. Rhabdo for short. The kids at this get together are cancer patients or siblings of cancer patients. We meet like this so that we all feel normal. Some of the kids don’t have eyes. Some are bald. Some don’t have legs. One of us is in a wheelchair. I have to wear tinted protective lenses at all times. That’s right. I wear sunglasses at night. But here that’s normal and no one stares or asks annoying questions.
All the parents of cancer patients are worriers. Every little cough is a big deal because well, itcould really be cancer that has metastasized. I know I have to hide this arm thing because pretty soon all the moms will come to my rescue and annoy me by being overbearingly caring. Most kids probably want their parents to care about them when they are sick, but I have had my fair share. I’d just like to be a normal kid, and actually, I’d just like to be able to win Minute to Win It.
I try to come up with a plan. I fail. The interrogations from my mom begin: “What is going on with your arm?” “Why is your arm twitching?” “Can you raise your hand?” I tell her I’m okay, but I know her. She isn’t going to let this go. I just try to make my arm work. Come on, Arm. Come on, Brain.
While heading home, I think I have somewhat gotten away with this arm thing because no one else asked what was going on the rest of the weekend. I keep my hand in my pocket to hide that my arm just will not work. It’s lifeless, with the exception of the constant twitching like a fish out of the water trying to make its way back in.
When I go to school Monday, I really think that I fooled everyone and make a break for it. But I have this teacher, the kind that notices my arm right away and starts asking questions and doesn’t hesitate to call my mom. The bad part: she calls from the classroom where everyone can hear. That’s when I find out that I have a doctor’s appointment. My stomach sinks down to my feet that don’t work well either. All I do is go to the doctor. After I was diagnosed with cancer last year, had chemo for 42 weeks and radiation for six weeks, I have had enough of doctors. If I ever see another doctor, it will be too soon. I know I have to go though.
Again. More doctors.
Although Mom and I walk into Dr. Segura’s office, I feel pretty good about this. Dr. Segura is a regular doctor. He is the doctor who took care of me before cancer. He only knows me as Peyton and treats me like a regular kid. I’ve only seen him once since my cancer treatment was over because I was sick. The regular kind of sick. The kind of sick that regular kids get. It felt good to be regular sick. Weird.
I can’t climb on the exam table because my arm doesn’t work, so my mom has to lift me. I don’t like this because I am eight and can climb by myself. Only I can’t. I try to tell my arm to stop twitching and start working, but it won’t. Dr. Segura comes in and does a bunch of testing. He pushes my legs and makes me point my toes. I think he has lost his mind. I’m not there for my legs. My arm won’t work. Then, he makes me shrug my shoulders. The right shoulder moves, but the left does not. It just won’t move. No matter how hard I try. It just won’t move. It twitches. Just twitches. Dr. Segura is concerned. He says I need to go back to Texas Children’s Hospital. The good news is that I don’t have to go until the next week. I will be better in a couple of days.
I just know. I’ll be sure of it.
All that changes the next day after school when I’m at the shoe store. I look up and smile at my mom after I find a pair of shoes that I really like. She freaks out and starts telling me to smile with both sides of my face. I smile as big as I can. She grabs her phone from her purse and dials the cancer center. Now I know I’m in big trouble. My mom can’t get in touch with our regular nurse, so she dials the afterhours emergency number and starts wildly talking and crying and shouting at me to smile and telling me that if I’m kidding I better knock it off, but I seriously have no idea why she has lost all control. She was completely irrational. We rush to Texas Children’s Emergency Room because the doctor thinks I’ve had a stroke because when I smile, only one side of my face moves.
Great. Just great. More things that don’t work.
When we get to the hospital, I get hooked up to all kinds of monitors and IVs. The doctors check out my brain. It was still there and functioning, but didn’t show signs of a stroke, so I had to have a total body neurological MRI. It took what seemed like forever, but really it was two hours. The doctors couldn’t find a cause for all my symptoms. In their infinite wisdom, they diagnose me with depression. The doctors explain that it’s normal for kids with cancer to get depressed and have psychosomatic symptoms. Strange thing is that I am the happiest person alive because I beat a very rare and deadly form of cancer.
It was a hard time for me and my family. My arm would dangle limply at my side for months. I had to go to talking therapy because my parents believed I was depressed as well as physical and occupational therapy. It was really difficult to try to tie my shoes when only one hand worked. In therapy, I had to do all kinds of things like climb stairs, pick up coins, write with my left hand, and touch my fingers to my thumb, which frustrated me because these things were easy before cancer. All this happened until we went to a soccer game one day.
My family sat in a really great suite with a terrific view and our very own waiter. The best part was that there was this short wall dividing our side of the suite from the others. I kept jumping over it. My good arm would swing when I ran to leap over that hurdle, but my left arm would just flop next to my ribs. Mom was getting pretty mad and told me not to jump anymore. I kept jumping. She told me that if I fell and broke my leg that she would call my dad at work and I would have to go to the emergency room. Those threats meant nothing, so I kept jumping anyway. I was having a blast. Until I fell. I splatted on the ground, but both my arms stretched out in front of me to break my fall. I fell hard.
Suddenly, my arm worked. Just like that.
No more twitching. It just worked. It was like a miracle. My mom looks at me and says, “Well, if I would have known that’s all it took, I would have shoved you down a long time ago.” And just like that, my arm worked. The doctors couldn’t ever figure out what caused the nerves not to function.
I think it was because I needed to learn when I fall, better things wait for me when I get back up.