Just before Siggy’s second birthday we noticed some slight swelling in her left eyelid, so we quickly brought it up to the pediatrician. At first, she thought it might be an infection so Siggy was put on antibiotics, but her eye continued to swell. About two weeks later just after Christmas 2019 we got an appointment for a CT scan to see what was going on inside the orbit. About a week later we got a call that no parent every wants to receive. The pediatrician shared with us that there was a mass of some kind behind Siggy’s eye, and the doctor recommended that we see an oncologist. We were quickly filled with an array of emotions – fear, anxiety, and worry to name a few. We went to Johns Hopkins, and they were fairly sure it was going to be Rhabdomyosarcoma since Siggy had a textbook optimal presentation. By mid-January 2020 we had the official diagnosis of Embryonal Rhabdomyosarcoma with optimal outcome. Siggy began treatment that day with a VAC Chemotherapy plan, which included 12 weeks chemotherapy followed by five weeks of daily Proton radiation along with another four months of chemotherapy. Compounding our fears and anxieties, the Covid 19 pandemic added various layers of isolation, caution, and challenges. Siggy was in remission by June 2020. However, her first follow up scan in October, 2020 showed that the cancer was back, so she went back into treatment in November – this time with daily chemotherapy on a clinical trial for four months followed by the removal of her left eye, eyelid, and all tissue inside. Also necessary was three days of Bracchytherapy (radioactive isotopes directly on the site of the tumor), which was conducted at Memorial Sloan Kettering in New York. After a month of healing, she began the second half of her chemotherapy regimen which required another six months of daily chemotherapy on the clinical trial, which she finished in late August, 2022. These days were especially hard because Siggy and I had to be separated from her sister, Freya, and her dad for much of the time since only one parent was allowed to be with Siggy at once, and siblings were not permitted at all due to the Covid 19 restrictions. Siggy is now in remission. She has had clean scans for her follow-up visits over the past year, and we pray they continue to be clean. Siggy, now age 4, has been dealing with cancer and all of the challenges that go with it for more than half of her life, and the experience has also been very challenging for her sister Freya, now age 7. Freya was always worried about her little sister, but at such a young age she too had to deal with all of the burdens and fears that go with a childhood cancer diagnosis within the family. Often, as parents, we were so consumed with Siggy’s condition that we were concerned about the implications Siggy’s cancer would have on Freya. Understandably so, we were worried about both of our kids, and we just wanted them to be safe, be together, and just have normal childhoods. This is where Horizon Day Camp comes in. Horizon Day Camp is a camp for children with cancer AND their siblings! It is a place that is not only FREE for families, but it is a safe-haven with doctors and nurses and “best practices” in place to ensure a safe environment for all of the children. Most importantly, Horizon Day Camp is a place where kids can be kids with no judgement. They don’t talk about cancer at Horizon, but it’s a shared bond that connects all of the children. Siggy and Freya have attended the full summer day camp together each of the past two summers when their schedules allowed them to go. They have both made friends at camp; they have increased their confidence and independence; and they have been able to do all of the things that kids are supposed to do from enjoying art projects, swimming in the pool, eating ice-cream, and so much more!
Our girls love going to horizon day camp and it's so amazing all the things they do for and provide for the kids. They have been a blessing and that they include both of our children makes it that much better.
Help give summer back to children with cancer and their siblings by making a donation to my HorizonWALKS fundraising page!
HorizonWALKS is an annual walkathon event that raises critical funds and awareness for Horizon Day Camp, Maryland’s first full-summer day camp for local children with cancer and their siblings, offered completely free of charge. Horizon Day Camp, along with their Year-Round Programming and In-Hospital Recreational Activities, brings back the simple joys of childhood to local Maryland and Washington, D.C. area children who are impacted by pediatric cancer.
HorizonWALKS will be held in October 2023 at Power Plant Live! starting at 8:00am. The Opening Ceremony will be livestreamed on Facebook at 9:00am, followed by a group walk with family and friends in Baltimore’s beautiful Inner Harbor.
Please consider making a donation today and/or joining my HorizonWALKS team to help raise much needed funds for these deserving children. Your generosity will provide miles of Horizon smiles!
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