Thank you for supporting Lilly and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure. March 4th of 2015 Lilly was diagnosed with Aveolar Rhabdomyosarcoma. She had an unexplained growth that started in Nov of 2014, just below the inner corner of her L eye. It was about the size of a bebe pellet. By the time she was diagnosed(3/4/15), the tumor was roughly 4 cm and ran from the inner corner of her eyebrow down in to her cheek. Her nose was being pushed out of place and you could no longer see the white of the inner part of her L eye. She saw 6 specialists before diagnosis. Not 1 of those specialists thought it was cancer, even though most of them said "cancer" when discussing different possibilities. Lilly went in for her 2nd MRI of the year March 3rd and was back for a biopsy on the 4th. We didn't even pack an overnight bag because we thought we were taking her home after the biopsy. The surgeon came in and told us that what they found was a "blue cell tumor" and that a doctor from pediatric oncology would be down soon to speak with us. It was an awful moment for all of us, including the doctor. The pediatric oncologist came down quickly, asked questions, spoke with us briefly but it was hard because Lilly was restless. Next we knew, Lilly was admitted. Over the course of the next few days, many tests were run, a port was placed, papers were signed, we met many new faces, and the night before we went home she started chemo. Over the next week or 2, we followed up her new doctors with more testing, educating, planning, and waiting for the FINAL diagnosis to come in. When it did finally come in, we were shocked to our core once again. Initially she was diagnosed with Embrynal Rhabdomyosarcoma, which treatment entailed 14 weeks of chemo followed by 4 weeks of radiation. Final diagnosis, Alveolar Rhabdomyosarcoma. Her new regimen would now be 30 chemo treatments over 40 weeks and start radiation asap. We stood ready as we could be for whatever might come our way. I quit my job and became full time care taker. We spent 5 weeks traveling back and forth, M-F for radiation, each time having to be put under. Some of her chemo therapies required we be down there M-F, others where quick pushes, and others we had to be there for up to 8 hours with possible hospital admission if she didn't tolerate it well. But she did tolerate it pretty well. She did lose her appetite. She lost her hair 3 times. She had issues with diarrhea almost the entire time. Had a few weeks where we had to return for fluids because she felt so crummy. She was admitted to the hospital twice for a "cold" and lost her hair 3 times. We had a set back or 2 with counts and instead of 40 weeks it turned into 45 weeks, receiving her last chemo treatment December 29th, 2015. A new year began and Lilly had her FINAL chemo treatment eval on January 20th. She was in REMISSION!!! There was more attached to the above story, but I erased it because it talked about looking forward to the next set of scans, removing her port, and moving on with life with no cancer. And we did, for a whole 37 days. Lil's scans came back clear at the end of April and we did not hesitate to schedule the removal of her port in May before Summer began. Port was removed and we moved on with "new normal." Sunday of Memorial Day weekend, my sister in law noticed a lump in the L jaw/ear area. I dismissed it for about a day. But by Tuesday morning we called for appointment with oncologist. We all shared the same concerns and she was scheduled for an MRI the following morning. Our worst fears were confirmed after the MRI came back showing a mass. She had a parotidectomy and spent a night in the PICU. Final results, cancer had returned. Her port was put back in and she began her 2nd battle against cancer in mid June. She completed 6 cycles of chemo therapy (each cycle was 3 weeks long) with no breaks between cycles. She qualified for Proton Radiation Theapy, where she received a total of 28 sessions, going M-F, from the end of July to the end of August, being put under anesthetics each time. Her most recent set of scans had came back "clear." However we (parents/doctors) were all in agreement to continue 2 more cycle to make sure we got everything this time. There were supposed to be no set backs. She was supposed to wrap this up the 14th of December, ending the year on the same note as last. This amazing little person. A hero too so many, Lillian passed peacefully with her parents at her side on March 4th 2018. So proud to say she is my daughter. Team Lilbug! No one should ever have to watch their child fight cancer. We hope for better, more effective, more up to date drugs to be found. We hope for more education and funding to help find a cure. We hope.....