30 DAYS/30 STORIES® 2021
Eleanor’s story starts just like any other 5 year old kid’s. In the summer of 2020, we tried to have an amazing summer because she was starting kindergarten!! August 15, 2020, the kids and I were playing in the yard, running around with squirt guns and water balloons. Eleanor fell out of nowhere. I ran over to check her out and her right leg was swelling on the shin. We came in the house and had Dad check it out. We thought for sure it was broken so we took her to the hospital. I was so sad for her to start her school year with a broken leg. I waited at home with our 5 other kids while dad took her to the closest hospital to us. She had gotten X-rays done to check out the area. I was on FaceTime with Dad when they walked in and told us it wasn’t broken but it possibly could be cancer and we needed to follow up in the morning at Children’s Hospital of Philadelphia. They said there was nothing more they could do with it there.
What!!!???? How???!!!! We were just playing in our yard!!! She’s starting school!! What do you mean??? A bone abnormality. How do you sleep? How do you wait for tomorrow? How do you have enough hours to even process what you were just told? How do you tell her? How do you tell the kids that it’s ok, that Mom and Dad are ok, while you are trying to hold it together? The next morning off she went out the door, hours away from me with dad. I sat there waiting and waiting. I wish I could have gone too, but the pandemic made things harder for our big family. When they got to the hospital, they reviewed the X-ray and sent her in for an MRI. The MRI alone is not enough to make a diagnosis; they needed a biopsy to know exactly what is happening with Eleanor's tibia. She also had a chest CT scan as part of routine work up pre-biopsy. Eleanor needed a biopsy of the area concern in her leg. August 19, 2020, Eleanor went in for two biopsies - one in her leg and two pokes into her back.
By the 25th, we found out Eleanor had Ewing Sarcoma, soft tissue cancer, localized to her leg. Everything from here on out was fast. She was admitted to CHOP on the 26th, had a port and G-tube placed the next day, sent to the oncology floor to recover one night before they started chemotherapy. She needed 14 rounds of chemo in two-week cycles. Halfway through they made the decision that for best quality of life for Eleanor, she would need an amputation.
I can sit here and write about countless hospital visits concerning blood transfusions, platelets, fever spikes, and C-diff but I want to skip to November 25th the day before Thanksgiving. We made our way to the hospital very early and got prepped for her amputation. I remember walking back to her room when she was finished and said to myself it’s ok hold yourself together for her be strong for her - she needs you. My heart shattered as I took the turn in her room. My baby girl, why, I’m so sorry. We stayed in the hospital for a few days and had some physical therapy and occupational therapy to sign off on before we could leave. Going home was tough, she didn’t want anyone to see her. She didn’t want to be touched. She hurt physically and mentally. She had 3 weeks - only 3 weeks to heal - before restarting the chemotherapy. She was healing perfectly. They felt confident everything was going to go smoothly.
Two rounds in, and on January 1st, 2021, we found ourselves in the hospital now with an open wound. Eleanor endured 117 days of open wound care on top of chemotherapy. Another round of C-diff and Covid-19. The last half of chemotherapy was rough. It felt like there wasn’t an end in sight. What do you do though? You just push through and keep pushing. You stay strong for her so she can stay strong. You try to keep things positive for her. Getting fitted for her prosthetic was not a walk in the park either. It was new, it was scary, and she didn’t want to do it. But there she was again, pushing herself past her fears and blowing all of our minds with how unbelievably strong she really is.
At exactly 10:00 am May 14th, 2021, Eleanor completely finished chemotherapy! Her leg was healed, and she was ready for her leg to be finished. On June 3rd, we went for her final fitting and if it was good, she was coming home with her leg. She was so excited to see it, she loved it and it was perfect. Eleanor now continues to do physical therapy and improve with her leg every day. She has made big steps for a little girl. This year, Eleanor started kindergarten again! Her hair is coming back, she has more confidence in her leg, and most of all she’s happy. But this isn’t the end for her. Eleanor had her three month scans on September 8th and unfortunately we heard those same words that crushed us the first time, Eleanor has a bone abnormality in her left leg on her upper femur. It’s a little bit smaller than the first tumor. This week, we head back in for a PET scan and a biopsy to make sure it’s nothing.
Although Eleanor’s story is hard and scary and draining, we couldn’t have done it without help from family and friends and complete strangers. PCFLV has helped our family through a extremely difficult time. They helped make sure we had food vouchers for hot meals and gas cards to get back and forth from Philadelphia. They included the whole family because it took a toll on all of us; so the kids all got birthday cards to make them feel special and not forgotten. And when Eleanor finally was better, we were given the best summer all over again, before she returned to school, with tickets to Disney on Ice, Lehigh Valley Zoo, and Monster Jam. I love this foundation and how dedicated they are to help children and families get through a difficult time.
Written by Eleanor’s mom, Jerrel
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