Hello, my name is Jeremiah Jones, I am 19 years old, and my life changed drastically in October 2023, during my senior year of High School. “You have bone cancer in your back and spine, that has metastasized to your chest,” is what I was told by doctors at 18 years old. This was discovered after seeking medical attention for the sudden onset of debilitating pain in my back, numbness/tingling in my legs, and difficulty walking. In that moment I became a ‘Pediatric Oncology Patient’, but that is not now, nor will it ever be all that I am. So, yes, while I do have Stage 4, Mesenchymal Chondrosarcoma, a cancer that only affects 0.00006% or approximately 215 Americans at any given point in a year, I am and plan to continue being more than a Pediatric Oncology Patient. I am a warrior in life, a warrior against this bone cancer, and I am proud to also be able to say I am a “Patriot” as a Heritage High School graduate as of June 2024. I accomplished that goal despite spending my last year of high school battling cancer with surgeries, chemo, radiation, being wheelchair bound, doing hospital-homebound education, Occupational Therapy (OT)/Physical Therapy (PT) rehabilitation, and learning to walk again after becoming paralyzed.

I am from Augusta, Georgia originally, and I had just moved to Brentwood, California in the summer of 2023, with plans to graduate from Heritage High School, and start my college degree studying Computer Science at Los Medanos College. I’m not sure what the future holds right now, but I am certain I will keep fighting the Stage 4 Mesenchymal Chondrosarcoma diagnosis that was given to me after a very long process of imaging, biopsies, surgeries, labs, and seeing numerous specialists including spinal surgeons and oncologist. It took some time for the Oncologists to fully determine the type of bone cancer, and develop a treatment plan. “Why was it such a difficult diagnosis for the doctors to nail down?” you may ask. The answer is that Mesenchymal Chondrosarcoma is an extremely rare, aggressive, fast moving, bone cancer that originates in cartilage cells. It can affect long bones like femur, tibia, humorous, or bones such as the spine, ribs, and jaw. Mine started in my spine, and has spread to include growths in and around bones/tissues in my chest, jaw, and hip as well. Don’t worry, I will give you more medical specific background below for those who like the whole story, but first, I wanted to introduce myself, give a synopsis, THANK YOU FOR READING MY CANCER JOURNEY STORY thus far, THANK YOU FOR SHARING MY CANCER JOURNEY STORY by sharing this GoFundMe Page on your social media accounts, and explain why I am turning to this crowd funding option of a GoFundMe page.

Why crowd funding with GoFundMe?

The short version reason of why I am turning to crowd funding is that I was just informed by my Oncologist in February 2025, that I will be on Chemotherapy for the rest of my life due to relapse and new lesions. This is my prognosis because the cancer has returned/recurred to places it previously was surgically removed from, and has spread to new areas despite the chemo I was on for 14 cycles. Also, because there are no standard of care treatment options for this specific histological subtype of Mesenchymal Chondrosarcoma. There are no clinical trial options for me. They are going to give me treatment similar to another bone cancer called “Ewing Sarcoma,” with the overall intent of delaying disease progression, and prolonging life, since as of this moment, the disease remains incurable. Any donations will help myself and my family defray costs associated with the treatment. The longer version reason, is that this new treatment plan I will begin at the end of March 2025 involves chemo pills, IV chemo, palliative radiation, hospital stays, recovery time, potential additional surgeries, additional occupational/physical rehabilitation, and costs of living that insurance doesn’t always cover. By God’s grace, the fact that I survived what I have so far, is nothing short of a miracle. I want to continue fighting for every second of life I can. The fact is, that a lot of my mental, emotional, and physical energy will be focused on this endeavor of continuing to fight for every second of life God blesses me with. Simultaneously, I also want to do more, inspire others, bring awareness to the plight of pediatric cancer, bring awareness to bone cancers, bring awareness to Mesenchymal Chondrosarcoma, and ultimately make a difference in this life I have left. Crowd funding donations will help with everything I described above and possibly even more ideas and plans that haven’t occurred to me yet. I hope, wish, and pray I can continue fighting this cancer without continued worry and concerns for where the money will come from, and without all of the additional financial burden falling on my amazing parents/family. I know that if everyone who reads my story donates whatever amount they can afford, and/or shares my story to people who will do the same, it will make a huge impact on my life and cancer journey. I also know that sharing my story and journey will bring about the awareness I seek to provide the world about this extremely rare cancer, and I truly hope it motivates and inspires others to keep fighting.

Here's some additional information about my diagnosis of Mesenchymal Chondrosarcoma and my Cancer Battle Journey thus far:

After my diagnosis in October 2023, I had to have spinal surgery on October 26th, to remove masses on my spine. They also biopsied additional masses in my chest and other soft tissues surrounding the bones. After the first spinal surgery, I lost feeling/movement in my legs, and was left paralyzed. In November 2023, I had another spinal surgery, “a fusion,” to place brackets/braces in my back and attempt to stabilize my spine. The spinal surgeons were hoping to take tension/pressure off of my spinal cord, and treat/reverse some of the paralysis. Despite the daunting 20% chance I was given to walk again, I am slowly finding my footing learning to walk using assistive devices with Occupational Therapy (OT) and Physical Therapy (PT) Rehabilitation. I am accomplishing this goal to walk again, against many odds, thanks to my amazing medical team, thanks to the support of my family/friends, and with sheer grit determination. It has been a long process to learn to walk again, I am not done working on it, and I am proud of how far I have come.

After the first surgery, biopsies of the masses in/around my chest and of the masses in/around my spine that were removed, were examined in a pathology lab. Doctors at UCSF reviewed the biopsy pathology report and diagnosed me with Mesenchymal Chondrosarcoma. Chemotherapy was and still is the best and only way to treat this cancer, with radiation for the more localized areas as well, so the treatment plan was for me to undergo Chemo and Radiation. In order to safely receive chemotherapy, and minimize peripheral damage, I had to get a right chest wall port (RCWP) implanted into my body. For those who are not familiar with Chemo ports, the port placement was another surgical, interventional radiology procedure, that I underwent to have the port placed under my skin in my chest. During the procedure they ran a venous catheter (tube) from the port in my chest, through larger and stronger blood vessels in my chest. These tubes empty just above my heart. This is so my heart can dispense any medications, chemotherapies, or interventions I receive intravenously through that port to my entire body, but also to limit damage to my peripheral vessels in my limbs where IVs are typically placed. Having an implanted RCWP can be extremely dangerous as it opens me up to the potential for clots and infections, especially when the port is accessed. My first Chemotherapy treatment regimen alternated between two combinations of drugs and was called VDC-IE (vincristine, doxorubicin, and cyclophosphamide *VDC* -and- ifosfamide and etoposide *IE*). In this regimen the VDC was given through my port over a 30 hour period at the beginning of each cycle of chemotherapy while I was inpatient in the hospital. At the end of those 2 days of VDC treatment, after verifying with lab bloodwork that I was not in eminent danger from the Chemo, I was able to go home. As with most chemotherapies it left me very sick with nausea/vomiting, fatigue, weakness, and an increased chance of infection with a lowered immune system. Three weeks later, during each cycle, I returned inpatient to the hospital to receive the IE part of the regimen for that cycle. IE was administered intravenously through my port over 5 days. Same as with VDC at the end of the 5 days of IE chemo, after verifying with lab bloodwork that I was not in eminent danger from the Chemo, I was able to go home until the next cycle began. As with most chemotherapies IE also left me very sick. The IE caused hair loss of all head/face/body hair, fatigue, weakness, nausea/vomiting, increased bruising/bleeding, and increased chance of infection from a lowered immune system. To put it plainly, the medical team was essentially poisoning the cancer with Chemo, which also poisoned my body to an extent and my job was to survive it. Each medication regimen in each cycle left me feeling awful, and about the time I started feeling less awful, it was time to start the next cycle. These VDC-IE cycles occurred 14 times per the treatment protocol they had designed for me. I had a PET scan in July 2024 and October 2024 and no new masses were detected. We all were breathing a cautious and brief sigh of relief.

Let me tell you, fighting cancer with surgeries, chemo, radiation, OT/PT rehabilitation, recovery, side effects, and all of the more minor (by comparison) treatments/procedures is not for the faint of heart, mind, body, or spirit. My medical team did a lot, helping me through everything, but I absolutely could not have made it this far without my family. My family has been paramount and immeasurably supportive, walking beside me on my cancer journey. They were there every step of the way. They were there when the medical team was finished for the day. They were there for my times when I was able to go home between treatments and between cycles. They were there for any and every need or want I had. I will never adequately be able to describe the appreciation I have for them, nor adequately describe everything they mean to me. I love them, and I fought, not just for myself, not just to bring awareness, but I fought for more time with my family. As they have been with me thus far, I know they will continue to be with me as the next leg of my journey begins. I will continue fighting for myself, and for more time with them.

In November 2024, I started feeling pain in my chest and hips. At first, I didn’t think anything of it, and dismissed it as the aches and pains associated with my battle I had fought thus far. I was suffering from low blood sugar in January 2025, which can accompany chemo and radiation due to numerous factors. My medical team decided to push back my January 2025 PET scan to February 2025 because of the low blood sugar. During this period of time, in addition to the chest and hip pain, my jaw began also hurting and bleeding. Chemo and radiation can cause ulceration and bleeding in soft mucus membrane tissues like the mouth. This can occur both during active cycles, and for months after. Again, I associated it with side-effects of my cancer journey thus far, after all, my July 2024 and October 2024 PET scans showed no new lesions. Remember above where I said this was an “aggressive and fast moving cancer,” that part of the description comes more into focus now. During rehab in February 2025, where I was focusing on regaining some independence and continuing to work on walking, the nurses and rehab therapists noticed a potential knot in my mouth. The PET scan occurred in February 2025 as planned, and the Oncologists biopsied the growth in my mouth/jaw. Both tests confirmed our worst fears, not only had my Mesenchymal Chondrosarcoma recurred on my spine and chest, but it had also progressed and spread. I now have Mesenchymal Chondrosarcoma in 4 areas they can visualize on my PET scan. The cancer recurred in my spine (bone and soft tissue around lumbar region), and my chest (left chest wall mass). It also progressed to my hip, and my jaw (destructive right mandibular lesion). I don’t know if there are adequate words to describe all of the feelings and emotions that come with getting news like that.

After the scans and biopsies, in February 2025, I met with my Oncologist, and that is when I got the news I would be on Chemotherapy, and potentially palliative radiation to my jaw, for the rest of my life. That is when the Oncologists informed myself and my parents, “this was not a good situation given the relapse. There are no standard of care treatment options for this specific histological subtype of Mesenchymal Chondrosarcoma. There are no clinical trial options. Hence at this time treatment options include (similar to treatments of Ewing Sarcoma) Cytoxan and Topotecan or Irinotecan and Temozolomide with the overall intent of delaying disease progression, and prolonging life, since as of this moment, the disease remains incurable.” The Oncologist went on to discuss side-effects, potentials for concerns given my, “prior intensified chemotherapy regimen and given the volume of disease involving bones, I would also recommend using growth factor support.” He also discussed that since the worsening right jaw pain is causing difficulty with eating, “If the pain continues to worsen, palliative radiation to the site could be considered.” And we discussed the new developing right shoulder pain and the differential diagnosis of whether it could be new metastases vs. deferred pain from right jaw vs. other possibilities. My new treatment starts at end of this month, March 2025. We have all decided to follow the Oncologists recommendations to have the next treatment plan be Irinotecan and Temozolomide with growth factor support, and a plan to return to clinic in 2 to 3 months after next PET scan. Some of the Chemotherapy will be tablets I can take at home, and some with be intravenous Chemotherapy. I will update more as this next leg of my Cancer Battle Journey Story continues to unfold.

I was in high school when all of this happened. I was worried about continuing my journey of becoming a good human and young man who made myself, my family, and my God proud of me as I impacted positive change in the world. My biggest concerns were the steps I needed to complete to reach that goal, like studying, learning, growing, graduating high school, and planning for college. I never imagined in October 2023, that by the end of the month I would be worrying that I would never take actual physical steps of walking again. No one ever thinks something like cancer as a teenager can happen to them. No one ever thinks that after a hard 1.5 year battle with cancer that you will get news like I got in February 2025. As with everything in life, when something unexpected/unplanned happens, all we can do is keep fighting towards our new goals of survival, while continuing to work on our original goals when we can. I did graduate from high school and have enrolled in college despite battling cancer for the last 1.5 years. I managed to combine my new Cancer Journey Goals with my Life Goals. I was paralyzed, I was bed bound, I had to learn to walk again, I had surgeries, I had numerous cycles of chemo/radiation, I had numerous hospital stays, I had to regain as much independence as possible in rehabilitation occupational and physical therapy, and I vow to you, to continue working towards all of my goals both new and old, with the donation you so kindly bestow upon me.

Finally, as part of one of my new goals to spread awareness about Mesenchymal Chondrosarcoma, let me answer a question some of you may have had reading my story…

What do I mean by “extremely rare cancer?”

Well, only 2-10% of Chondrosarcomas are Mesenchymal. Chondrosarcomas only account for 10-15% of all primary malignant bone tumors. Primary malignant bone tumors, or bone sarcomas, account for less than 0.2% of all cancers. The rough estimated value of 2-10% of 10-15% of 0.2% equals to Mesenchymal Chondrosarcoma being 0.00006% of all cancers diagnosed in the US. I have a cancer that is registered with the National Organization of Rare Disorders, also known as NORD, and you can find a full report about it here, https://rarediseases.org/rare-diseases/mesenchymal-chondrosarcoma/ . To be listed in the National Organization for Rare Disorders (NORD) Rare Disease Database, a disease must, according to the National Institutes of Health, affect fewer than 200,000 people in the United States. There are approximately 340.1 million people in the United states. That means to be rare enough for NORD, it needs to affect less than 0.06% of Americans. My cancer, Mesenchymal Chondrosarcoma, only affects 0.00006%, so around 215 Americans out of the 340.1 million Americans have this cancer each year, thus earning it the title of “extremely rare.” THIS is why there are no standard of care treatment options for this specific histological subtype of Mesenchymal Chondrosarcoma, and this is part of what drives me to spread awareness for this type of cancer.