On September 24th, we are taking part in the Kids Walk for MSK Kids virtual experience! We are raising as much money as we can to support pediatric cancer research at MSK Kids, the pediatric program at Memorial Sloan Kettering Cancer Center (MSK), where Belle is being treated. We invite you to donate and walk wherever you are!
We are honoring five amazing warriors; Belle Svoboda, Isabelle Grenier, Gavin Tarsio, and Corey Phelan, and Nora Harris who have been afflicted by different forms of rare cancers and are fighting their individual fights as they manage their disease, but who by the Grace of God are banding together to fight for pediatric cancer research. They want to help every kid fight and win their own personal battle, but we need more clinical trials and new improved pediatric therapies developed. We welcome you to help raise funds for this important cause by supporting these five warriors who have demonstrated courage, hope, faith, grace and overall an unbelievable amount of character and resilience throughout their journeys.
Our little girl, so full of life, the bright star in the day, the love of your life starts limping one day. What starts as a routine Dr. visit turns into the worst day of our lives. On December 1st 2021, every parent's worse nightmare came true for us. We were called into a small room where we were met by an oncologist who informed us that our dear sweet Belle has a cancerous tumor in her left calf. It ended up being stage 3 Alveolar Rhabdomyosarcoma. It is a rare form, and only 100 cases are diagnosed in the U.S each year.
It's like being hit by a locomotive. How was this happening?? Life as we knew it was now forever changed. As we agonized over our next steps, we kept wondering how we would explain to a 4-year old little girl what she is now facing?
With guidance from family and friends, we found out about Dr. Wexler from Memorial Sloan Kettering. He is a pioneer in this type of cancer. We immediately sought out his expertise, and thankfully, we were able to get an appointment with him. After weeks of tests consisting of MRI, CT, and PET scans, a tumor biopsy, bone marrow aspiration and a lymph node biopsy, it was determined by the grace of God that the cancer was isolated and hadn't spread anywhere else in her little body. Her treatment plan consists of 10 months of chemotherapy along with 6 weeks of radiation treatments. We are now at the tail end of the 10 months but had a set back in her progress. The scans that were done after the radiation were supposed to show a dead tumor however, that was not the case. There was visually no difference in the pre-radiation scans vs the post-radiation scans. This was unexpected to say the least!! Our Dr. was stunned and told us to start educating and preparing ourselves for a limb salvage amputation surgery called Rationplasty if her next set of scans did not improve. So on August 15th, we prepared ourselves for the worse, but got a gift from GOD, there was a slight improvement, enough for our Dr. to delay the surgery and have her finish out the rest of her chemo treatment (Sept 30th is the last one). Unfortunatey we are not out of the woods yet, she will have scans done again on Oct 19th and we will see where we go from there.
Belle's infectious personality is undeniable. She touches the lives of everyone around her. God has a great plan for her life, and we know she is destined for doing great things in life. She is one-of-a-kind and the light of our lives. Her strength and attitude are not just a marvel but an inspiration for anyone who interacts with her. She is truly our hero.
We thank everyone for your support and prayers. Without our circle of friends and family, we don't know how we would get through this. Our family desperately needs your continued support and prayers as we continue down this unknown path of tears, bumps and dips but also triumphs, love and smiles as we kick cancer's ass.
100% of your gift supports research
Every dollar raised through Kids Walk for MSK Kids goes directly to research that brings new hope to kids and families around the world because doctors and researchers at MSK Kids are working hard to prevent, treat, and cure childhood cancers. The discoveries made through research and clinical trials at MSK Kids have led to the FDA approval of new drugs and other breakthroughs that benefit young people worldwide.
Less than 5% of the National Cancer Institute’s budget is dedicated to researching childhood cancers, so your gift helps fill that funding gap. Your donation will support game-changing research and bring new treatment options to young people with cancer. Together, we can make a difference.