This is an initiative set up to help our son, brother and friend Joeri in his fight against a deadly form of childhood cancer; Ewing's sarcoma.
Joeri Gielen from Purmerend (The Netherlands) was diagnosed with Ewing's sarcoma in 2018 at the age of 27. Ewing's sarcoma is a very rare and malignant kind of bone cancer which mainly occurs between the ages of 5 and 30. Treatment options are very limited and the 5-year survival rate in metastases is poor with only 15-30%. At diagnosis, the medical team put Joeri under pressure to quickly start chemotherapy. By hindsight, the tumor in the calf had already been there for roughly two years and in our opinion wasn’t aggressive or fast-growing. This made Joeri doubt whether starting chemotherapy was the right choice. Why wake up a sleeping dragon? At that time, Joeri unfortunately did not have the knowledge and insights he now has and, after much doubt, he started chemotherapy, radiation and surgery.
Until now, the chemo works and it helps to irradiate the tumors, but because the immune system has been weakened by the chemo, the cancer returns increasingly aggressive. Recently 6 new tumors have appeared and Joeri had no choice but to start a 3rd chemotherapy. According to the oncologists, the treatment is life-extending without much chance of being cured. Joeri has spent a lot of time reading studies and conducted research into complementary treatments / remedies in the past year. He has spent thousands of euro’s in savings on supplements, medicines, Chinese herbs, vitamin C infusions and hyperthermia, but none of it has helped enough; the disease keeps coming back.
Joeri has now turned his attention to Germany, where there are promising therapy options. What he needs is a therapy that reactivates his immune system so that it can deal with cancer by itself. He has found a therapy which is still in its infancy but has shown a lot of potency: Virotherapy. Virotherapy is a treatment that uses biotechnology to convert viruses into therapeutic agents by reprogramming viruses to treat disease.
Joeri is currently in contact with some Germany doctors who offer this treatment and is still weighing the options against each other. But the essence of the treatment offered is the same; an oncolytic virus. Unfortunately, these treatments abroad are not reimbursed by the Dutch health insurer and the costs can amount to € 100,000 or more. It is only a matter of time until the current chemo loses its effectiveness and the disease takes over the rest of Joeri's body. Realizing that time is running out and Joeri is still fit enough to try something else, we are hoping to start a virotherapy treatment in the short term. Joeri desperately needs your help in this and hopes that you will support him!
Over the past year, Joeri has done his utmost to ensure that his own disease process runs smoothly and has a lot of contact with other fellow patients (parents of children and young adults) from all over the world. In his ambitions for the future, Joeri envisions to eventually be able to help other patients who are in a likewise situation by assisting them in the disease process and spreading knowledge.
You may find more information about Joeri and the virotherapy-treatment through Joeri's website here, where he will regularly post updates about his treatment. You can also leave a donation at our GoFundMe page.
Many thanks and love,
- Family and Friends