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Aiden's lifesaving cancer treatment.
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$74,703 raised of $127.5K
515 donations
Aiden's cancer has not responded to the current FDA approved treatment and we are now at the point where his only hope is in cutting edge new treatments not yet approved in the US.
It's been a long year so far; here is how we got here, forgive us if we gets details mixed up.
Aiden was diagnosed in August 2022 with metastatic Osteosarcoma meaning it had already spread to his lungs. He began chemotherapy a week later. With osteosarcoma, the chemos are designated by the abbreviation MAP which stands for methotrexate, adriamycin (doxorubicin), and cisplatin. He went through his first cycle with success though it was difficult with the usual nausea, weakness, and lethargy. During his second cycle, he developed an allergic reaction to the methotrexate and that part of MAP was discontinued. He finished out the cycle with the other two chemos instead.
At this point he prepared for major surgery that would remove the portion of his leg with the tumor and connect the lower half with the upper half but turned around 180º –called Rotationplasty. This 12 hour surgery went well and Aiden was able to put weight on it within 6 weeks, getting a prosthetic around 2 months after surgery.
After surgery, they tried a different combination of chemos (etoposide and ifosfamide) which a later CT scan showed growth of lung nodules, which means it wasn't working. He had one more round of the AP in MAP and then taken off chemo completely. It was time for lung surgery.
In February and March of 2023, two successive thoracotomies removed 7 nodules from each lung. A CT scan shortly after the surgery in March showed 2 more small nodules. Three months later, there were 6 nodules in each lung and the 2 there 3 months prior had grown considerably. Aiden began to take cabozantinib, a tyrosine-kinase inhibitor that had a good track record with slowing down the growth of nodules.
His latest scan in September, showed many more nodules and the growth of a nodule right close to his heart. The oncologist recommended SBRT (targeted radiation) to try to slow down the growth of this nodule before it could make its way into his heart.
This gets us up to fairly current day.
For the most part cancer is treated by stunting the ability of the cancer to multiply with Chemo-therapy followed by removal (resection) of the tumor(s). Absent an actual immune response cancer will often come back.
Osteosarcma is a rare and particularly nasty childhood cancer that can hide, and adapt very well, in addition Osteosarcoma can nourish itself via multiple pathways.
At this point all available approved treatments have failed.
...which leaves us with experimental trials or treatments not yet approved in the US.
Medical Trials are a way that research groups can work toward getting certain treatments, devices or equipment FDA approved, and often the process can take years. Unfortunately Aiden does not have years.
Other countries are not subject for the FDA, pharmaceutical company processes, or long waits for trials. Some courageous doctors are willing to not wait on the FDA and will do things in other countries that while still a few years away from being approved in the US are approved in France or Spain or Mexico or where ever.
Aiden is currently ready to pursue two cutting edge types of cancer treatment.
"CAR-T" and "PULSED ELECTRIC FIELD ABLATION"
"CAR-Chimeric antigen receptor (CAR) T-cell therapy or “CAR-T” is a way to get immune cells called T cells (a type of white blood cell) to fight cancer by changing them in the lab so they can find and destroy cancer cells.
How CAR T-cell therapy works
The immune system recognizes foreign substances in the body by finding proteins called antigens on the surface of those cells. Immune cells called T cells have their own proteins called receptors that attach to foreign antigens and help trigger other parts of the immune system to destroy the foreign substance.
The relationship between antigens and immune receptors is like a lock and key. Just as a lock can only be opened with the right key, each foreign antigen has a unique immune receptor that is able to bind to it.
Cancer cells also have antigens, but if your immune cells don't have the right receptors, they can't attach to the antigens and help destroy the cancer cells.
With this treatment Aiden's T-cells are extracted, modified and replicated over 6 weeks, then given back to him, He will remain at the research university over the course of 4 weeks.
What is CAR-T
Pulsed Electric Field Ablation
Pulsed Electric Field (PEF) therapy is a novel approach to treat cancer by providing focal tumor ablation while sparing sensitive structures within the tumor micro-environment. Previous studies have demonstrated that PEF induces immunogenic cell death by activating inflammatory signaling pathways and stimulation of antigen presenting cells within the tumor micro-environment.
Pyroptosis and necroptosis belong to immunogenic cell death (ICD) that rely on the release of damage associated molecular patterns (DAMPs) to drive local immune responses.
Electrical pulse stimulation triggers the release of DAMPs, which acts as a “find me” signal, enhances tumor immunogenicity and subsequently induces antigen-presenting cells (APC) activation. These signals enhance the ability of APC to phagocytose, process, and present tumor-derived antigens to T cells, thereby facilitating the induction of tumor-specific adaptive immunity. So, the level of these DAMPs and cells increases after pulsed electric field.
High voltage electrical pulses cause changes in multiple intracellular signaling pathways to inhibit replication and proliferation of tumor cells, and also kill tumor cells through multiple modes of death by necrosis, pyroptosis, and necroptosis. Pulsed electric fields can contribute to immunogenic death, increase tumor immunogenicity, reverse the immune tolerance environment, and can promote activation and proliferation of cancer-specific cytotoxic T cells acting locally and systemically.
With PEF ablation + intra-tumoral immunotherapy he will have
• Two CT guided Pulsed Electric Field (PEF) ablations with full immunotherapy injection that will be administered directly into ablated lesion one to each lung approximately 3 weeks apart.
• PEF ablation is a minimally invasive treatment that uses electrical fields to destroy tumor cells. The procedure involves placing an electrode in the tumor and delivering short, intense bursts of electrical energy to the affected area. Immunotherapy injections aim to stimulate the immune system to attack and destroy cancer cells.
Effect of pulsed field ablation on solid tumor cells and microenvironment
These two treatments and the associated travel and hotel expenses combined will run $127,560.
In the unlikely event there are any funds raised in excess, the extra funds will go toward a new Prosthetic, and toward any further medical expenses. He will continue to need new prosthetics as he grows.
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All the details of the expense breakdowns are available to anyone interested.