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This month we spotlight OsteoWarrior Buddy and his family. Now ten years old, Buddy has been bravely battling osteosarcoma for half his lifetime, since he was five years old. Buddy has relapsed several times, enduring years of chemotherapy, immunotherapy, experimental therapy, and over a dozen surgeries including four complex lung surgeries and below-the-knee amputation. Throughout these challenges, Buddy’s family shares how they cope, how osteosarcoma has shaped their lives, the importance of their support network and community, and what motivates them to fundraise for osteosarcoma research in honor of Buddy.
Can you share your osteosarcoma story with us? When and how was Buddy diagnosed, what treatments did he receive, and could you tell us about his surgeries?
Buddy received his official osteosarcoma diagnosis on December 27th, 2019 when he was just five years old. A few days later, on January 2nd, 2020, his sixth birthday, his port was placed in what would be the start of years of grueling treatment ahead.
After a fall on the playground, Buddy began complaining about leg soreness and pain in his left leg. We thought he may have bruised his leg because of the fall and didn’t think much of it. A couple weeks later we took a trip to NYC for my birthday and as soon as we arrived he said he couldn’t walk. We went to Target and bought a kids' stroller so he would be comfortable for the trip. As soon as he sat in the stroller we noticed that his left thigh was severely swollen. Again, we thought he may have badly bruised his leg and it was just inflamed. As the day went on a mild chest cold turned into a severe cold and on top of the swollen leg we decided to hop in the car and drive straight back to Northern Virginia. The next morning, which was Saturday, I took him to urgent care and the nurse advised me to take him to the Pediatrician on Monday to be seen for his leg. On Monday, our NP sent us straight for an X-ray, and one hour later we got the dreaded call from our NP that he had Ewing sarcoma or osteosarcoma. We were in total and utter shock, to say the least. How could a seemingly healthy young boy have stage 4 cancer? It was a nightmare we could not wake up from. A biopsy confirmed it was indeed osteosarcoma in his left proximal femur with mets to both lungs. We opted to get treatment as soon as possible and knew that time was of the essence. We were very lucky to have a fantastic team and an excellent children's hospital right on our doorstep.
MAP, Mepact, Limb Salvage, and Thoracotomies
In 2020, amid a global pandemic, Buddy had six rounds of MAP therapy. In between, he had a limb salvage surgery to remove his tumor and two thoracotomies, not to mention hundreds of clinic visits. He was an absolute trooper and never complained. After we got him NED his oncologist was able to get him Mepact immunotherapy for 6 months and we remained hopeful but vigilant with scheduled scans.
Ifosfamide/Etoposide, Thoracotomies, Amputation
In 2022, Buddy relapsed with the tumor coming back in his knee and lower leg. This time the egg-shaped bump on his knee alerted us right away that there was a problem. We were truly devastated that after all this grueling treatment we had to literally do a repeat. While our brains and hearts could not fathom more, we buckled up for round two. Buddy started on Ifosfamide/Etoposide and did about 12 rounds of treatment as well as two more thoracotomies. Because this time the metastatic disease was near his heart, we were uncertain how the surgery would go, but miraculously they were able to remove all the metastatic disease. By January 2023, we made the difficult decision to amputate his leg below the knee. This was a life-changing surgery with ongoing rehab. Once again he showed us how incredibly strong and resilient he is.
Regorafenib/Cabozantanib
After the amputation, he was considered NED once again and we started on regorafenib. Despite the painful side effects including hand and foot blisters and diarrhea, Buddy was responding well to the medicine and was able to stay on it for over a year and live a relatively normal life and actually be able to attend school more consistently. By April 2024, he once again relapsed. Our oncologist took him off regorafenib and started him on cabozantinib but the side effects were even worse so we took him off the drug. After a two-week break with no drugs, Buddy’s stump started to swell and after scans, it showed that there was osteosarcoma now in the soft tissue at the tip of his stump. We were baffled by how this could come back despite having taken his femur bone out. Of course osteosarcoma, as the beast it is, found a way somehow.
VIT - Clinical Trial
We were lucky to quickly find a clinical trial for VIT (Vincristine, Irinotecan, and Temozolomide) at Children’s National in DC. They were testing Orotecan, a liquid form of irinotecan. Unfortunately, the taste was unbearable for Buddy so after two cycles we came off the trial, however after his recent positive scan results we can continue this treatment through IV at our local hospital Inova. This is where we stand today – almost five years after the first diagnosis. This disease has transformed our family in every way you can imagine and the fight is still not over.
With all the hospital stays and trips, many patients and caregivers develop routines to cope. What tips and tricks have helped you and Buddy stay positive through hospital visits, procedures, and treatments?
I think what has helped us the most, as cliché as it sounds, is to take this journey one day at a time. This makes it so much more manageable. I always like to say, worry when it’s time to worry, otherwise carry on as normal and enjoy the day you have and live with gratitude. Times to worry for me were surgeries or if Buddy was in pain. Otherwise, when the pain was controlled and we were not in a high-pressure situation things were and are much more manageable. I also found so many moments of joy thanks to all our caregivers. I would also suggest taking advantage of all the resources your hospital and clinic have to support you on your journey. Don’t be shy about asking for help from your family, friends, and neighbors. It really does take a village.
What support from family and friends during Buddy's treatment has been the most helpful for Buddy and your family?
One of the amazing things about going through a stage 4 cancer diagnosis and treatment is the immense outpouring of love and support from every part of your community. Feeling the love and compassion from everyone really did and does lift us up. There are too many people to mention here but I must give a shoutout to my mom who dedicated a full year of her life and left her own home to support us and help us during the first year of Buddy’s treatment and has been a continued steady support ever since.
Buddy has been living with and fighting cancer for half of his life. How has his osteosarcoma diagnosis shaped his identity and outlook on life?
Osteosarcoma has truly transformed our family's outlook on life. We can all safely say that we treasure our days that are slow and peaceful and we get to be in the comfort of our own home. We treasure the little things and don’t take anything for granted. Buddy is a true warrior and still, after everything he has been through manages to crack a joke and have a smile on his face. I think that going through a monumental challenge like this at the start of his life has shown everyone that age is just a number. Buddy has shown, to those around him young and old, what being brave, strong and resilient really means.
What has Buddy been up to lately? What are his favorite hobbies, and what is he most excited about these days?
Just before Buddy’s last relapse, he was enjoying doing mixed martial arts and had started taking golf lessons. He really enjoys playing video games with his friends and is happy to be able to go to school again. I can’t forget to mention our beloved chocolate labrador Mr. Coconut who Buddy adores and has been a great support and source of healing for him and all of us!
What inspired you to create an MIB Agents Family Fund in honor of Buddy? How do you manage to find the time and motivation to fundraise while going through treatment, which can be both physically and emotionally draining?
I have to credit my sister Kate who spearheaded and managed the fundraiser and my brother-in-law John for inspiring us all with his incredible Marathon des Sables race through the Sahara Desert. I have always admired the work of MIB Agents so we wanted the money raised to be directed toward research and programs. My husband has also coordinated a corporate walk with his company to raise additional funds next month. My daughter’s volleyball team is also coordinating a fundraising event which will happen this quarter. We hope to continue to come up with ways to raise more funds! We desperately need and want a cure!
What message or advice would you like to offer to others who are facing similar challenges?
Don’t ever give up hope! It’s easy to give up when you’re faced with such adversity and challenges but you have to stay strong and fight the good fight as they say. We have encountered so many critically challenging moments on this journey but you have to keep pushing forward and try to stay ahead and find a way to outsmart this disease. It’s also vital to advocate for yourself or your child. Also, think outside the box and get second or third opinions. Use all the resources at your disposal–MIB Agents has been a fantastic resource, particularly the OsteoBites podcast. Also, keep in mind that everyone’s cancer is unique to them and try not to compare too much. I truly feel that functional precision medicine and AI is going to be critical for osteosarcoma and cancers in general so I’m hopeful and feel like we are on the brink of transforming osteosarcoma treatment for patients who truly deserve better. We can make it better and we must.
