Aleksei's Story

Aleksei, Ewing's Sarcoma Survivor

Aleksei was 12 when he was diagnosed with Ewing's sarcoma at the spine. His treatments included surgery, chemotherapy and radiation therapy.

My life was like any other 12 year old boy's life. I was very active in hockey, football and golf and loved hanging out with my friends. I started having back pain in September of 2010 but I was still playing football and had started hockey try-outs, so we thought the pain was just because of all of that. My Mom still took me to my doctor who then referred me to an orthopaedic surgeon. I got my appointment quickly and that doctor ordered an MRI which, a few days later, we found out showed a tumour in my spine. So we met with a spine surgeon who is also a good friend of ours, and he told us that the tumour had to come out within about 2-3 weeks. But that night I was in so much pain that we went to emergency. Another MRI showed that the tumour had burst so I went in for emergency surgery a day later. I had surgery on December 3, 2010, and we got the diagnosis on January 18, 2011. I really didn't feel a specific way when I found out I had cancer; I guess I just didn't understand what it was. I remember worrying about my hair falling out.

Treatment

My treatment lasted eight months to the day (February 1, 2011 - October 1, 2011). I know I was lucky because I was able to keep on track pretty good. Mostly it was the nausea that got to me, and I did lose quite a bit of weight. I had to have an NG tube and then a GT tube, which I hated, but it helped put the weight going back on. I think I just coped because I knew I had no choice and I was able to put my mind to getting through the nausea. You get in a routine where you know what to expect, and you just have to prepare for it. My parents knew that while the chemo was dripping in I needed everyone to be quiet and still, and I would just lay there and focus on getting through it. I felt closer to some of my friends throughout my treatment. A lot of them really supported me and wanted to visit me in the hospital, but I really never felt like seeing anyone when I was in the hospital.

Recovery

I think I recovered very quickly. After leaving the hospital on October 1, 2011, I was back at school pretty much full time and started practicing with my hockey team right away. I was not allowed to play in games right away because of the hitting involved in hockey, but by the middle of December I couldn't wait anymore so my doctor gave me the go ahead to start playing in games. AlekseiI was very happy being back on the ice and in the action. I continue to do physical therapy, mostly to stretch out my lower back and hamstrings.

Life Now

My life feels just the way it did before I was diagnosed. I was happy I was able to complete Grade 8, and I also ended up top scorer for our hockey team even though I only played 12 of the 22 games. We have done a lot of travelling since my treatment ended which has been great. My family has not made any changes really, except I think we live our lives feeling more happy and grateful than ever before. I really don't think about having had cancer and I do not consider it part of my identity. I know for my parents this experience was really awful and still is. I have to go for scans every 3 months and I know that is very hard on them.

Thoughts and Hints for New Patients

I think not knowing what to expect is good because it makes you just deal with what happens one day at a time. If a friend of mine was diagnosed with a sarcoma, I would tell them I am here for them and that they will get through it just like I did.

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Valerie 22/05/2014 06:27 pm
My family just got the results today, that my four year old niece was diagnosed with Ewing's Sarcoma of the spine. I'am thankful to know that you survived and are doing well but feeling overwhelmed with our journey just starting.
Cheryl 15/11/2013 12:29 am
Thank you for sharing your story. My son is 13 and has begun treatment for Ewing's sarcoma. He misses sports, too, and I will share your story with him- it is very encouraging!
Elizabeth Kane 16/04/2013 05:07 pm
Dear Aleksei, Thank you for sharing your story. I am a homebound tutor in Virginia Beach, VA. Two of my students have sarcoma; a 14-year old with Ewing Sarcoma with the tumor on the spine, and an 11-year old with Osteosarcoma, original site on right femur, bone removed and replaced with a titanium rod, chemo, then a recurrence of tumors in the lungs, removed and on chemo now. I will forward your story to the mother of the child with Ewing Sarcoma, as I think it will be reassuring to her. The child has had chemo and proton radiation, and now there is a decision to be made whether to have surgery. The child is very athletic and does not want surgery b/c it might end athletic career. I think your story will give them a basis for discussing this option.
MiMi Olsson 28/09/2012 05:37 pm
Dear Alexsei, thank you for sharing your cancer journey. You have been very brave and I am going to have my 14 y/o granddaughter, Carly, read it. She, too, had a spinal tumor and it will be good for her to read about another survivor!
With Hope, MiMi

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