Eden was diagnosed with Osteosarcoma at the age of 14. Her diagnosis was just before Christmas in December of 2021. She had treatment until September of 2022 and was in remission for about a year. Then during a routine follow-up appointment in October of 2023, a scan of her chest showed lymphoma. She has been in treatment since, and in June of 2024 she received a bone marrow transplant.
When Eden was a freshman she was a swimmer on her high school swim team. She started having knee pain in her right leg towards the end of the season. At first, she wondered if she had perhaps injured her leg while doing a flip-turn. However, she couldn’t recall any specific incident that would have caused an injury. Despite follow-ups with various healthcare professionals, the pain continued to increase with a limp forming and getting worse the longer she went undiagnosed. It was becoming difficult for her to sleep or attend school due to the pain in her leg. Eventually, she connected with a specialist who was able to x-ray her leg and help her get further imaging that led to a diagnosis.
Eden currently has a weakened immune system. She typically social distances and isolates as much as possible. She has also had some difficulty walking and sometimes can get off balance due to some of the side effects of the prior chemotherapy. For long distances, she uses a wheelchair. For shorter distances, she used a walker.
Eden has had surgery, been under anesthesia multiple times for biopsies and placements of medical devices, and has taken multiple different medications for many different things. As a family, we are doing okay, but definitely appreciate all of the love, support, and generosity from our family, friends, and those in our community. Organizations like yours are so wonderful and truly help so much. Eden was looking for senior pictures and connecting with Kara and learning about this organization was such a blessing!
It has impacted all aspects of our family life. As a family, we have adjusted our routine as Eden now does virtual school and needs medications throughout the day. As parents, we have learned how to manage an IV line at home and administer different meds. Even with the changes to our family life, we still have fun as a family and have movie nights as well as days out on the weekends.
Eden is truly a beautiful person inside and out. She has been so resilient and has been able to maintain a positive attitude and good spirits while dealing with the most difficult of challenges. She has handled things with maturity and grace. She is a true partner in her care and advocates for herself and her needs. She has continued to complete school credits virtually and is hoping to rejoin in-person school sometime this year. Eden enjoys a variety of activities. She particularly loves theater and being on the stage in plays and musicals. Eden is also an avid reader and has shelves of books. She is interested in history and she is considering being a teacher or school guidance counselor in the future. She is also interested in pursuing opportunities in theater in the future.
Aiza loves to swim, camp, play, and is an animal lover.
Aiza was diagnosed with Osteosarcoma in August 2016. We found out after she fell and broke her arm. We took her to the ER where an x-ray showed that she had an abnormal mass in her bone.
Aiza has had chemotherapy and surgery. She also has hearing loss and some learning disabilities due to her treatments.
Mila loves art, drama, chorus, spending time with family, and soccer. She loves to laugh about anything and her laugh is infectious.
Mila is 9 years old and was diagnosed with Osteosarcoma in November 2021. Before she was diagnosed, we noticed a lump on her left forearm that kept getting bigger. She had endured 30 weeks of intense inpatient chemo, limb salvage surgery involving the removal of the radius of the left forearm, and replacement with an allograft donor bone.
Mila must limit any physical activity that could cause a fall or injury to her arm until the allograft is fully healed. Other than the obvious emotional and physical trauma for Mila and the family, cancer has taken us away from each other as Mila and mom are in the hospital, and dad was left to care for our 7-year-old son who has struggled to understand what and why this was happening.
Mila finished chemo treatment on June 23rd, we now enter the scan phase every 3 months for the next several years.
Nicholas had been complaining of a sore knee for a couple of months leading up to his diagnosis. He was 10 years old in the winter of 2018, and an amazing downhill and terrain park skier. We chalked the sore knee up to teaching himself new tricks in the terrain park. We finally took him to the doctor when ski season was over and after he complained of not being able to run fast in gym class anymore.
Nicholas sustained a spinal cord injury during his double limb-sparing surgery in the summer of 2018. He has titanium bones in both legs, both knees are artificial, and he has a lot of nerve damage. He can walk for short distances but uses a wheelchair for longer distances and to prevent injury and exhaustion. Physically, he cannot do anything the same way he did before suffering from osteosarcoma.
Our family life is completely different from what it was before Nicholas’s diagnosis. We were a very active family who loved to travel and were constantly on the move. Nicholas’s cancer diagnosis, treatment, and disability changed all of that, but we do our best to adapt and make the best of the life we have now.
This was very hard at first, but Nicholas has embraced adaptive sports and our family life slowed down quite a bit. We’ve embraced a slower pace in our family life and haven’t looked back. We’re so grateful that Nicholas is alive and here to enjoy life with us. He’s beating the odds and we never forget this. We have two dogs now and spend more time together than we ever have. We love our post-cancer family life and are so grateful.
Nicholas is a miracle. He had a single-digit chance of survival at diagnosis and had tons of rare complications and setbacks during treatment. He is NED in his legs and stable, possibly NED in his lungs.
Kiara was diagnosed with Osteosarcoma on November 18th, 2020. She was suddenly unable to walk and she had developed a serious limp basically overnight.
Kiara is often in treatment 5 days a week and barely sees her baby brother, who has just turned one. Part of her treatment plan will be to have an amputation (rotationplasty).
Our whole life has been disrupted by this terrible beast!
Bretton is a very funny happy selfless kid. He is always trying to make the people around him laugh. He is more concerned with others than he is himself. He loves hockey and we are thrilled he has started playing again.
Bretton was diagnosed with Osteosarcoma on May 18, 2016 after experiencing pain, swelling, and a visible mass. He has had 30 rounds of chemo, 6, surgeries, countless hospital stays, blood draws and so forth. He lost his lower leg so he now has a prosthetic leg.
As a single mom, I had to quit my job to take care of my son. We also lost our apartment while my son was in treatment. We are staying with family until we can get back on our feet. Things have to be scheduled around multiple doctor appointments and always consider that he only has one leg.
