After a hard fight against his brain tumor, Lucas' body wasn't able to resist anymore and on December 19th he trascended into a better place. I'd like to think he is somewhere where he doesn't know what pain, sadness, heartbreak, or stress feels like, where he can see me, his children, his brother, his mom, and everyone he ever knew and be happy for us. In his life he always transmitted happiness, I am sure he is doing it in a higher level now, and I want to feel that when I think of him.
Thank you everyone who supported us at any point of our journey, we are eternally grateful, and we know we, along with you, did our best to give Lucas a chance of survival. There is still a long way to go in research about this horrible disease, and we are happy we were able to introduce a possible solution to future cases of this tumor, and hope our story may help others to pursue this kind of treatment.
We are still open to donations, since we never reached our goal we still need to pay for the funeral expenses, debt in the clinic where he stayed, things that were left unpaid in the pharmacy, and the last injection of the OV therapy. We are all going back to our lives and I am looking for a job to be able to help pay for everything too. Thank you again for your donations and for helping Lucas!! <3
Hi! My name is Julia Ramos, if you got to this page is because either my friend or family sent it to you, or I sent to you, either way since you are here I want to ask for your help to help me save Lucas Silvestro, whom I call my partner in life, future husband, future father of my child (hopefully). He was diagnosed with a terminal stage 4 tumor called Diffused Midline Glioma H3K27M, I’ll attached more about it here if you want to learn more about it. We are in Bonn, Germany at the moment, and Lucas is receiving an experimental therapy that could save his life.
Oncolytic Virotherapy has proved to offer patients long term survival, with a better quality of life, research has found patients who are still living 14 years after the therapy, going back to work, having children and enjoying their lives. However, because it is still an experimental therapy it is done through private practice, and each OV therapy dose administered costs €5,000.00 euro plus around €1,500.00 of supportive and preventive drugs. According to Doctor Arno Thaller, Lucas needs around 8-10 doses for his tumor to either shrink or disappear, each dose being administered every 3-4 weeks.
You can read more about Lucas’ story on the bottom, but I wanted to make it quick on top in case you don’t want to read much, but you are more than welcomed to read everything below, go through the links of the information provided about the tumor, treatment, Lucas’ biopsy results, pictures and more.
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My Story with Lucas
I met Lucas five years ago, it was a typical summer love like in the movies but I quickly fell in love, hard. I fell in love with his free spirit, his words, goals, and the plans he had for his future. I wanted to be a part of this too. We didn’t see each other for a year and a half after we met but destiny (my Italian teacher) offered me an internship at Lucas’ town, in one day everything was set, everything fell right where it had to, so on September 2017 I was going back to San Severino Marche (MC). He was as handsome as I had remembered, and our spark lighted right back up like if we had never left each others’ sides, from then on we tried to do everything together. Until March 2020 when the pandemic started, he was stranded in Spain and I was in USA, we couldn’t see each other for 11 months!
He finally came to USA and stayed for three months, since our plan was for him to move to USA, but he had to be back to Italy and settle some things before he left. He started having some dizziness and discomfort around March 2021 so he had a doctor’s appt and had some tests done. Tests came back, everything was normal, his cholesterol was normal but he could lower it a bit, but everything else was perfect, he was told by the doctor to have better health than many young people in his twenties, he is 43. Then he started feeling numbness in his right arm and feeling indifferent, so he decided to get a CAT scan on his birthday, May 3rd. Results came back and something looked blurry, the neurologist decided to run more tests, on May 25th he was confirmed to have a brain tumor. I got the first flight and got to Italy on the 29th.
After consulting recommended neurosurgeons, four out of five recommended to get a biopsy, however we were told he might not be the same person after it.
At this point I realized I might only have a few days left with the same person I fell in love with, but I love him, and I want was is best for him, because I want to spend the rest of my life with him no matter what, or who he becomes.
The biopsy for a brain tumor located close to the spinal cord, in between the pons and the fourth ventricle section, most of the encefalic trunk to be more precise, is not an easy task, so it had to be done by what we could consider ‘the best’ in Italy.
I had to travel back to USA to get everything ready to move indefinitely to Italy, in the meanwhile Lucas and Jeremias were traveling from the Marche region to Friuli Venezia-Giulia for his biopsy with Doctor Miran Skrap.
Lucas went into surgery on July 9th, he had a big smile but was nervous, he told me he loved me with a firm look and I told him I loved him too. Jeremias was told everything had went well, but he wouldn’t wake up for a couple of days. Lucas woke up on the 11th, before what was expected, he’s a fighter, and he is very strong, but he had a confused look on his face, he was tired, but he told me that he was going to get therapy and be well, be with me.
On July 21st we got the results, Lucas’ tumor is called Diffused Midline Glioma H3K27M, it is usually a pediatric tumor with a median survival life of less than one year. His tumor is stage 4, is already more than 5cm in width and still growing. The right half of Lucas’ body was and still is paralyzed, his lip has fallen, his eyesight is blurry, and he barely speaks. We were told he would not make it to November.
This broke my heart, literally, I was unconsolable for weeks, I wanted to do some research, but everything I saw on internet would just break my heart even more, I felt useless and hopeless, I didn’t know who to turn to or what to do. However, to this point I have not even let myself think about a life without him, instead I have started therapy.
Lucas was in San Severino Marche (MC) for about a month and a half and there had one week of chemotherapy with temozolomide (TMZ), and started physical therapy.
On September 29th, we arrived to Bonn, Germany and the next day Lucas had an injection of OV Therapy. He was admitted as an intensive care patient at St. Johannes-Hospital (Ambulantes Operationszentrum (AOZ) des Gemeinschaftskrankenhauses Bonn).
We decided to proceed with Oncolytic Virotherapy, a new approach to fight an incurable condition. Oncolytic Virotherapy has proved to offer patients long term survival, with a better quality of life, research has found patients who are still living 14 years after the therapy, going back to work, having children and enjoying their lives. I want this for Lucas, his brother wants this for Lucas, we all want this for Lucas.
However, because it is still an experimental therapy it is done through private practice, and each OV therapy dose administered costs €5,000.00 euro plus around €1,500.00 of supportive and preventive drugs. According to Doctor Arno Thaller, Lucas needs around 8-10 doses for his tumor to either shrink or disappear, each dose being administered every 3-4 weeks.
On October 25th he received a second injection, this time a higher volume and more strains of virus. We were told his symptoms might be worse than with the first injection and might stay for longer, these symptoms include: fever, chills, fatigue, headaches, intracranial pressure, fluctuating blood pressure and pulse, and decrease in oxygen.
We are hopeful this therapy will give us at least a little bit of that Lucas that last gave me a look of love before his biopsy, that smile that he had when he got to see his children, his laugh while joking with his brothers, that warm hug for his mom, and endless hours of conversations with close friends, we want him to keep enjoying his life at full capacity, I want him to reach his dreams and I want to do it with him in every step of the way.
More about Lucas
Lucas is 43 years old, has two children and was going to start a new life with me in Phoenix, AZ. Lucas loves acting, he was a protagonist to the Italian Docufilm “San Francesco d’Assisi” in the series “Segnati da Dio” that can be found on Amazon Prime in Italy and some other countries. Lucas also participated in telenovelas in Argentina when he was younger and still loves theater and to participate as an extra in other small independent films. Lucas with his younger brother have owned several bars and restaurants in their Italian hometown, San Severino Marche. Lucas enjoys the most being with his children, especially helping them with their homework or teaching them new things, I think he is an amazing father. We loved traveling, getting together with friends, cooking, working out, and having hours long conversations.
*Funds collected not used for Lucas’ treatment will be donated to research organizations about this tumor, or will be donated for the treatment of other tumor victims.