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Grandson, age 12, recently diagnosed with Ewing Sarcoma

mimi68's picture
Posts: 1
Joined: Jul 2014

Hello everyone:)  Two months ago my grandson Ethan, age 12, was diagnosed with Ewing sarcoma.  The primary site was in the nasal cavity, very close to the brain.  This was a late diagnosis because he was thought to have just a very bad sinus infection, which did not clear up with antibiotics.  One  night they took him to the emergency room because he was crying out with severe pain in his head.  They did not do a CT scan that night and just sent him home with another prescription for antibiotics and pain meds.  Because my daughter questioned the pediatrician about seeking the help of an ENT doctor, the pediatrician accused her of not having faith in his diagnosis and dismissed my grandson from his practice.  They were left without a doctor at that point and she ended up taking him to her own GP.  He then sent her to a pediatric ENT doctor.  This delayed Ethan's care by about 2 months by then.  They did a CT scan and MRI, and it was then that they found the tumor, which had grown large by this point.  He sent him to a specialist in Miami, FL, and he did surgery on Ethan.  By this point another 3 to 4 weeks had gone by.  They removed a very large mass, but could not remove all of it because it was invading the space close to the brain.  They were recently told that if they had delayed everything by another 2 weeks my grandson would have no chance of survival.  Ethan just finished his first 3-day course of chemo today, and did pretty well.  He will be on a 1-year course of chemo.  He will do a 3-day course and then every other week he will be in in the hospital for 5 days for treatment.  My daughter is also expecting their 3rd child by C-section next month, August 8.  Our world came down around us  when this happened, and I felt like someone had given me a direct blow to my body.  He has a little sister, Corina, who is 3, and they are both my ID picture on this page.  I would love to communicate with others who have had children, grandchildren, or anyone with a family member with Ewing's sarcoma.  I think it would help me, Ethan, and his mom and dad cope better with this.  There is not a day I do not cry over this and about other children who have cancer.  I have taken care of both Ethan and his sister from the day they were born, and have raised them along with their parents.  I have 4 children, and with the addition of the new baby in August I will have 6 grandsons and my 1 precious granddaughter.  I am sorry this is so long, but just writing this down makes me feel better.  Love to all, Monique

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