Alicia Denoon

Alicia Denoon

Age: 12 | Kingston, Ontario

  • Hometown: Kingston, Ontario
  • Year of Diagnosis: 2001
  • Diagnosis: Cerebellar pylocitic astrocytoma

Alicia had a ten hour surgery at the age of three to remove a cerebellar pylocitic astrocytoma. Our doctor was confident that he had removed all of her tumor after the surgery, but unfortunately further tests showed that there were considerable residual amounts left in a number of locations. In addition to the news that our princess would face a 65 week chemo treatment schedule, we also had to deal with some physical damage that had occurred to the cerebellum during the surgery. She was left unable to even sit upright unassisted. She also had double vision, vertigo and had lost all depth perception due to damage to the 6th nerve. We took her home and started our own regiment of physiotherapy immediately.

She learned to sit, stand and walk again over a number of months. Alicia completed the chemotherapy treatments in November 2001 and went into a “wait and watch” schedule of regular MRI’s. During this time we got Alicia into the pool to increase her physical strength in a safe environment. On land, she still would fall down or crash into things every 20 steps or so. She became so strong in the water that we put her on a competitive swim team! In October of 2003, a routine MRI showed that the tumor “spots” had increased in size and were progressing toward the brainstem. Since we had already tried surgery and chemo we were told that the best option was to try radiation. Alicia started her thirty day – daily radiation treatments at the beginning of Nov 2003. Unfortunately she suffered a massive brain haemorrhage after the second day of radiation. It seems that the new tumor growth was very vascular and that it had blown out.

Once again we put her life in the hands of a wonderful pediatric neurosurgeon. Dr H. was very blunt, and told us to gather the family. The worry was that when he relieved the pressure in her brain she would bleed out. We got our blessing and although Alicia recovered from the hemorrhage and surgery quite quickly, her new journey would not be a ‘typical ‘ one. After the surgery she developed bacterial meningitis and needed to stay in hospital for another 2.5 weeks for treatment. Once again we took Alicia home unable to walk/balance unaided. Our little fighter was determined to get back into her active life so she went back to school the day after she was discharged from hospital using a borrowed pediatric walker! It wasn’t until March of 2005 that the scans showed the tumor had begun to respond to the radiation and there was some reduction in size. Since that scan more wonderful news – all scans have shown no change in the residual tumor.

During that time, Alicia continued to amaze us with her determination and positive attitude. Her doctors say they don’t understand how she can even walk never mind participate in competitive athletics. Swim team accomplishments gave her such a rush that she asked permission to do triathlons. During her first few races we physically held her up during transitions, she rode a two wheeled bike with training wheels – while we ran beside her and then held her up again on the run. During her second season, she had improved so much that we had to get volunteer University runners to run beside her bike and she started to run for little sections on her own. By the end of that second season, it was obvious she needed something different – so we started our search for a recumbent trike. The Challenged Athletes Foundation out of California helped us purchase a BEAUTIFUL custom recumbent trike from Whizwheels in Michigan. In her first season with the new trike, she doubled her average speed. Her races have doubled in size to a maximum 200 m swim 12 km bike and 2km run. Alicia, just turned 10 – brain tumor survivor now cruises at an average speed of 20 km/hr!

 

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