Hello, my name is Ciara and I am Leland's momma. In late May of 2024 Leland had a cough that would not go away and got bad enough that we went to the ER in Bend Oregon. They did x-rays and seen his left lung was completely filled with fluid and assumed it was a pneumonia and we were quickly life flighted to Portland to be seen at Doernbecher children's hospital. Leland spent a week in the PICU, received a chest tube to drain the fluid from his lungs and tests were done that all came back negative and we were sent home with antibiotics still unsure of what the problem was. We were home for three days when we had to drive back to Portland from LaPine because he got worse and had a fever that wouldn't break. Leland was then admitted to the PICU once again, had another chest tube put in to drain the fluid that reaccumulated, and more tests were done, after advocating enough, oncology became a part of his care team and two weeks later we finally got results back indicating that Leland has a very rare cancer. Leland has a FGFR1 fusion driven soft tissue sarcoma that was the size of a baseball and causing fluid to accumulate in his left lung and was very aggressive and very uncommon in children. Leland was 3 at this time. Due to the rareness of this cancer they were unsure of what to do, so they decided to start with in hospital chemotherapy in the hopes of shrinking his tumor. Two separate rounds of chemo over the course of about a month and a half were found to be unsuccessful. Lelands tumor was pushing on his lungs and had conpl5mpved his heart over to the right side and his oxygen levels were very up and down. After his second round of chemo we were discharged after spending almost 4 months in Portland and Leland was put on hospice and end of life things were arranged. Once we were home, Lelands oncologist was able to find an experimental drug out of Europe that has been used to treat children with this rare cancer. At the time he was the 5th child who would have received this. Once we were home and on hospice Leland was bed bound and not doing well at all, and then we started this drug which was an oral form of chemo that's used to treat adults that typically are diagnosed with this type of cancer. The doctors were shocked when a month later Leland was well enough to travel to Portland for a follow up CT scan to find out his tumor was shrinking. It was wonderful news! He was on this chemo for about 4 months before CTs showed it had stopped working and began to grow again and quickly. Surgery was the next option, and in January of 2025 he had his tumor removed and all was well for a few weeks. When we returned to Portland for radiation therapy after 5 cycles they determined the tumor had grown back very fast and seemed more aggressive than before by the measurements of it. This happened in March of 2025 and we were then sent back home and told to restart the oral chemotherapy again. That's puts us to now, Lelands tumor had grown back and split into two tumors this time and is currently still taking his chemo which seems to be working this far but it's stopped working for him before and we expect it to stop working again we just don't know when and with that being said his oncologist has shared his story with the sarcoma board on Seattle, St.Jude and MKS in New York and the surgeons in New York are confident they can efficiently perform a very big surgery that may ultimately save my son's life. Everything this far has been so touch and go to where we think we're losing him and this is the first time we feel like this could be the thing that can actually save him instead of just delay the worst thing that could possibly happen. This surgery involves taking out his left lung completely, removing his chest lining and rebuilding it, taking out at least two ribs along with the tumors themselves. Essentially they would be taking out everything that this tumor has ever touched in the hopes of it never returning. Which is something we still don't know to be true, but at this point in this journey it's our best shot at giving my son the long life he should have. We will be traveling from Oregon to New York within the next month or so and we will be in desperate need to financial help in order to cover air fare and time spent there which will be anywhere between 2 to 3 weeks. My son, Leland is now 4 and will likely spend his 5th birthday in New York recovering from surgery. If you know him you know he is the biggest fighter and so determined to live, regardless of the war that's going on inside of his little body. As his mother I can't not have this surgery done for him as it could save his life. And I hate asking for help but that's what I'm doing. Please help. However you can is appreciated, sharing this is appreciated, and praying for my son is appreciated. Every single thing is appreciated and literally anything helps. Leland is my one and only child and he is meant to do so much more on this planet and spend much more time here and as his mother, I will do everything in my power to make that happen. Thank you for reading.♥️