So much has been taken from me, but dance remains

This was written by Anna Mott and was first published in the 2016/17 edition of Brain Tumour, the IBTA's annual magazine that is distributed globally and free of charge in 113 countries and at international neuro-oncology and cancer conferences around the world. Read the full issue online and find out more here.

When 18-year-old Anna Mott was diagnosed with a rare pineoblastoma brain tumor, the ballerina thought she had lost everything. The tumor left Anna blind and unable to walk. But thanks to her incredible determination, and the love and support of her family, Anna is now dancing again, joyfully and courageously. Here, Anna shares her inspirational story of perseverance with our readers.

Anna Mott Nutcracker

Just before she was diagnosed with a pineoblastoma, but already suffering substantial symptoms from it, Anna Mott danced the role of Dew Drop Fairy in The Nutcracker

IN 2011 I was a typical teenage girl. I was working my way through high school while attending ballet and dance classes six days a week at my pre-professional ballet school. I had no idea that my world was soon to turn upside down, plus some. By the spring of that year, I had acquired an intense, unyielding pain in my lower back. My parents took me to doctors and specialists and it was decided I had a stress fracture from dance. Physical therapy was prescribed and over the course of the spring and summer, it got better, good enough for me to fly out to Kansas City for a summer dance program.

I returned home and excitedly began Nutcracker rehearsals for the Christmas season. I had been cast in my dream role of Dew Drop Fairy so I was especially excited. To my surprise and utter disappointment, the back pain returned with a vengeance as rehearsals picked up that fall, and I was in intense pain. My parents wanted me to give up the part and seek rest, but I just had to do this part. I somehow knew it would be the last time I would get the chance, and it meant everything to me. I had worked for years to reach the level of dance to perform this.

When the last Nutcracker show ended, I was in so much pain in my back and legs, I had to be carried to the car. My mom had already lined up an appointment with a couple of specialists for the week and I was eager to go, as I now had no feeling on my left side from my knee down.

I saw many pediatricians and specialists throughout the spring and summer of 2012, yet none could help me find relief. I began having intense headaches and other symptoms as well. By August 29, my parents had enough and took me to the local hospital emergency room. Within an hour, they had done a CT scan and found a mass in my brain. I was transported right away to Scottish Rite Hospital in Atlanta, Georgia [US].

Anna is supported throughout her brain tumor journey by her very close-knit family including two brothers and two sisters (who are also ballerinas). Photo by Helmuth Photography www.helmuthphotography.com

Anna is supported throughout her brain tumor journey by her very close-knit family including two brothers and two sisters (who are also ballerinas). Photo by Helmuth Photography www.helmuthphotography.com

Things happened at lightning speed after I arrived. A drain was inserted to relieve all the pressure on my brain, my mass was biopsied and then I had two resection surgeries that got out 95% of my tumor. The official diagnosis was pineoblastoma, a rather rare, aggressive brain tumor.

I can't remember much from this time, but my parents and family tell me I was really brave and that my chief concern was making sure that my siblings were okay and that through all this, I would glorify God and hopefully help others. My mom said I never broke down or even cried. All I wanted was to be as strong as I could and let God use my situation.

From arrival at the hospital until my first discharge, I was there a full 12 weeks. Besides my two surgeries, which were very invasive, I battled a bacterial infection in my brain and spine, I also endured 33 full brain and spine radiations with simultaneous chemo treatments, I lost and regained use of my left side, I had to re-learn to walk, and so much more, including the fact that my optic nerves were damaged and I was now blind.

I'm thankful that my mom was with me every moment, and that my dad brought my two sisters and two brothers nearly every day to visit me. The hospital was great about letting one of them stay over to be with me. That encouraged me and helped so much. They brought a bit of "normal".

I had tons of cognitive challenges, as the surgeries were so invasive. My sisters, who are also ballerinas, would play music from ballets I had danced, and quiz me on them. They also showed one of my therapists "ballet arm" positions so that she could help me learn to use my arms again. My brother would come with me into the therapy gym and cheer me on, encouraging me that I could do it. My baby brother would make me laugh. My siblings were all such good medicine for me while I was in the hospital.

Anna (center) returns triumphant to ballet after her treatment for a brain tumor

Anna (center) returns triumphant to ballet after her treatment for a brain tumor

As I transitioned home, I was walking again, but blind and very weak, and still had six months of chemo ahead. I soon ran out of benefit payments for therapy, but my family and friends were constantly finding ways for me to keep moving.

Some friends from my former ballet studio made me a portable ballet barre so my sisters gave me a barre class at home.

My friend, Keiko Guest, who is an acclaimed local dance photographer, was having a gallery showing in April 2013 of her new collection. She decided to shoot me as part of the collection and then had the idea for me to dance at her opening night. From the moment I got sick, Keiko had been the one person who said I would dance again and she found a way for me to do it! She and my dear ballet mistress who had taught me since I was a little girl of five, Lisa Sheppard Robson, choreographed a dance and coached me through it. This was the first time I had danced since my Nutcracker in 2011.

After this, Keiko introduced me to a dance and gymnastics teacher, Cindy Bickman, who works with special needs dancers. She has given me many opportunities to dance again. It's amazing that I had lost so much memory, so much cognitive and physical ability, and even my sight, but ballet was still in my brain and my muscle memory. When I thought the problem was my back and I had to stop dancing from the pain, I thought dance had been taken from me. Now, although so much has been taken from me, dance is the thing that remains. Through ballet, I have regained much. It has given a life back to me.

I'm almost four years out from diagnosis and I'm happy to still be "NED" [“no evidence for disease”]. I'm not exactly sure what my future holds. I hope to continue to recover physically and mentally, and to take each day one at a time, being thankful for each as a special gift. I believe dance will always be part of my life. It has generously given so much to me. I hope to use it to give back. My goal is to continue to rise to each challenge I am presented with and to glorify God.

 

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