Lilly's Ewing Sarcoma Fight

Hi, I am Jaclyn, my daughter is Lilly. Lilly is 10 years old and has been diagnosed with Osteosarcoma, what used to be called bone cancer.

At the end of July Lilly came to me complaining that her leg/ankle on her left leg was hurting her. She had not hurt herself, not fallen or twisted her ankle in any way. I looked at where she was saying it hurt and nothing looked out of the ordinary. I explained to her that it was probably just growing pains. Fast forward to the first week of August, August 6th to be exact--Lilly got up to use the restroom and went to her knees. She could not put any pressure or weight on that left foot. The next day we went to an urgent care to have it looked it--she was x-rayed and the radiologist said that it was fractured. Lilly was put in a temporary cast and we were referred to Orthopedic Dr. Thursday, August 10th was Lilly's first day of 5th grade and was only a half-day, so that afternoon I had an appointment for her at the Orthopedic Dr. The nurse at the Orthopedic office removed her temporary cast and then the Dr came in to see us. He pulled up her imaging from the x-ray and he looked over at me and the look on his face was the absolute worse look I have ever seen. He said that we needed to have a stat MRI because he did not like the way it looked and he was positive it was not a fracture. They got us in for a MRI that same evening--we were to come back at 6:30 PM for a 7:00 PM scan. Lilly was scared for the urgency and let's be honest, even though nothing was said out loud, kids are quite good at picking things up. She did great for her MRI though. Friday, August 11th at 8:49am the Orthopedic Dr. called and asked if I wanted the results on the phone or to come in, I chose to have the results over the phone right then. The MRI confirmed the Dr.'s worry--Osteosarcoma and it was aggressive. The size of her tumor is 3.3 x 2.65 x 7.95 cm. It is surrounding her distal fibula, the outside bone just above her ankle on her left leg. The Dr. asked that myself and Lilly come to his office that day to discuss what we do next. I immediately left work and picked up Lilly and delivered the worst news possible to my 10 year old baby girl. Up to this point in life, Lilly, was this incredibly animated, opiniated, funny, brightly shining girl. In the few moments that it took to share what was happening I watched her shine flicker and dull. It was the most heartbreaking moment of my life.

We spent the rest of that day just talking and sitting in silence...crying at times as well. My 22 year old son held Lilly so tightly and my heart broke again. No one prepares you for these moments as a parent.

The 14th of August was our first visit to St Jude and we spent the rest of the week having a chest CT done, more x-rays and a bone biopsy. Thankfully the chest CT did not show anything had spread to the lungs or heart. The biopsy has been sent to Memphis, to the main St Jude for DNA typing to find out exactly what the tumor is made of. Lilly will have her full body PET scan done Tuesday.

After that, Lilly will start chemotherapy. She will have a port put in so that her care team can have instant access to deliver her medicines and draw blood. Her chemo treatments will consist of 12 rounds and will be her going in for the chemo, staying in the hospital for a few days while she gets through the worst of it and then she can come home. However, as soon as her counts start to recover they will hit her again with chemo. This will all be to shrink the tumor. As soon as they are satisfied with the size of the tumor, Lilly will have surgery. The options for surgery are to either remove her fibula bone all together, or amputation. Lilly made the dance team this year...hearing this devastated her. After surgery she will have to go through chemotherapy again.

We are embarking on what will most likely be the most challenging thing that my family will ever face.

All of this happening and I am concerned every day about how I am going to be there for my daughter the way that I want and know I should be and keep the bills paid. I am a single parent. I do have employment and they have been wonderful in their understanding and concern. However, taking FMLA leave does not keep income coming in. I have 2 weeks of paid time off and the FMLA leave will keep my position for me. I am appreciative of those things. What do I do when the paid time off is exhausted though?

I have started this GoFundMe to fundraise to help allow me to be 100% present with my daughter when she needs me. I have started this so that when I need to take a few days off as my baby girl is getting chemo treatments, I can be there with her completely and not stressing about having to take another unpaid day off and how we are going to pay rent and our bills, to keep food in the house. It is an unfair position that a parent is FORCED into. Work or be there with my child when they need me the most.