As many of you close to us know my daughter Echo was diagnosed with Ewing's Sarcoma. Many people have asked how did we found out? Echo has complained of leg pain for over 8 months. We took her to her PCP who said it could be growing pains. Sounded likely since she was a beautiful, smart, and healthy 5 year old princess. So I would give her Ibuprofen and a heating pad. A couple months later I called and asked if we could use something like Bengay because she was still hurting and also crying in her sleep. Not much relief came from that either. Jeremy and Brandy suggested getting an x-ray and second opinion. I have felt the same but struggle with time and finances being a single mother. Finally I took her to an insta-care on April 19 were they said her x-ray was fine then sent us home once again. Only the next night the doctor from the insta-care called her voice sounded a bit panicked she told me to get her to a doctor and kinda soon. So April 20 we took her to the ER at Primary's were they x-rayed the rest of her leg. Sure enough there was something wrong this was the scariest night of my life. We were admitted to the hospital real fast with a biopsy and a port a cath placement, MRI, and CT scheduled for my daughter. They kept saying they thought it was Ewing's but couldn't give a 100% positive diagnosis yet. I wanted so bad for them to tell me it was an infection, a fracture, something she could easily get over. But no it is Cancer.
We were sent home on April 23 with Echo in a wheelchair and told she can't walk on that leg anymore. Echo was to come back in on April 29 for a Bone Scan in Nuc Med and an Echo cardiogram. Then our first clinic visit were they told me she might not be able to have children and may get heart damage from the chemo. We had another scare on May 4 we were asked to bring her in immediately for another biopsy which had been the worst part (so far). Then Echo and I got to the hospital only to find out they DO have the 100% sure diagnosis of Ewing's Sarcoma in her femur bone.
Wednesday May 5 would be the first day of her chemo therapy. This was not easy or very fun hell none of this has been. Echo got sick from the chemo and puked, she peed the bed which she NEVER did before, she got super grumpy, whinny, and lost her healthy little appetite. She was in pain. So hard to imagine this being our life now. On May 8 she was discharged to home with Dad. I got to pick her up that night and spend Mother's Day with her : ) Only a home health care nurse came out to our house and gave her a shot of Neulasta which is a painful white blood cell booster. She was mad at me and the nurse.
Thursday May 13 I got a call while at work from Wendy (Ryan's Mom) that Echo had a fever of 104 (thankfully the fever was really 100.4) and she had been puking only after the home health care nurse came to draw labs and noticed something should be done about it. I went to the ER and she got admitted again to the hospital. Her counts were down to 100! So antibiotics and labs were our plans for the next three days. Saturday May 15 we went home and her count then was up to 1300!! We have started to notice small amounts of hair falling out already. I say small but it feels huge. She cried when I showed her a picture of another girl who is going through the same treatment for the same cancer.
Today home health is coming out to access her port for lab draws and to prep for her second round of chemo. It will be two different drugs this time so I hope we can find the right combination of medicines to make Echo feel alright in the hospital.
I want to thank everyone who has been here for the kids and I and showed such support and love. It means the world to us. It has been a huge emotional struggle for me, Echo, and of course the boys. I could not do this alone. THANK YOU and LOVE YOU!
