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CNCF Hero Emily Ware | CNCF

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“I am a Survivor”

Hi, my name is Emily Ware and I am 9 ½ years old.  I was diagnosed with neuroblastoma cancer in July 2003 when I was only 2 years old.  Neuroblastoma is a solid tumor cancer of the nervous system.

My initial tumor grew out of my right adrenal gland and attached to my right kidney, liver, and wrapped around all five of my arteries.  It was 5 ½” x 6 ½”.  I had the first of five ports placed and started high dose, aggressive chemo in which I spent 25 days a month inpatient for 6 months.

Then after shrinking the tumor, I had a 7 hour surgery at Children’s in Cincinnati and 95% of the tumor was removed.  Then I went to Columbus Children’s on Christmas Day 2003 for a stem cell transplant.  This was 30 days in one room.  After transplant, I had 3 weeks of radiation which I was sedated every day.  Finishing was 6 months of the magic bullet, a monucual antibody infused IV for a week inpatient for one week every month.
Then I was in remission for 10 months and went for routine scans in July 2005 and relapsed with a 4 inch tumor around my aorta behind my heart.  So then we started a low dose outpatient chemo in which I got chemo every day for 10 days on the 2 weeks of for 24 months. 

I had open heart surgery at Children’s Columbus 3 days before Christmas 2005.  Then I had 3 weeks radiation again in April 2006.  I finished my 24
 Months of chemo June 2007 and was announced “NED” (Nor Evidence of Disease).  I was without treatment for 2 ½ years and was able to grow hair, attended school, church functions, play softball and was loving life!!

Then in January 2010 I was complaining of back pain and headaches daily.  So my mom told my doctor and he ordered scans.  I relapsed again!! This time a rumor grew out of a gland in my neck and was wrapped around my jugular vein and my spinal cord.  This is why I had back pain and headaches.  This time I has my 18th surgery for my 5th port to start chemo immediately in which I get chemo 5 days )Mon-Fri) 1 week one 2 weeks off until January 2011.  I was suppose to have major open heart surgery the day before Easter, but thank God my tumor shrank so small the surgeon didn’t need to do surgery.  So I started 3 weeks of radiation every day followed by 5 days of chemo.  I have had issues with the aggressive treatments….hearing loss, optic nerve damage, kidney damage and I have lost 2” in height.  This is minor compared to some of the things I have experienced.

Me, my mommy and my family are just thankful that we had great support from our friends, church, family and our community.  I have had hundreds of blood transfusions over the past 7 years and I am very thankful to all the people who donate blood not only to save my life, but the lives of many others!  I also have the best oncologist in the world, Dr. Dole at Children’s Dayton.  He is a wonderful doctor along with his oncology team of nurses, staff and of course, Children’s Hospital.  They have become a part of our family.  I am a true fighter who loves life, loves to sing, dance, laugh and play.  I will beat this cancer one more time!

I am a SURVIVOR and honored to have been chosen to be the 2010 Child Survivor of the Year for Relay for Life of Springfield and Clark County!!!! 

Thank you so very much!
Emily Ware