Julia Ramos organizza questa raccolta fondi
Creata 4 giorni fa
Medicina, malattie e guarigione
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. Due to being a very rare tumor we contacted different clinics that do radiotherapy but we were told these radiotherapies would be too hard on Lucas as a person and wouldn’t change much to the tumor. After contacting about 6 different places, we finally found a treatment in Germany, what we think is our best hope, especially after finding another case of this tumor who is receiving this treatment and is doing well so far.
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 euro, according to the doctor Arno Thaller, Lucas needs around 8-10 doses for his tumor to either shrink or disappear, each dose being administered every 2-3 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.
We will be soon opening an IG page with more information about Lucas in case you want to follow up and learn how the money you are helping us with is being used.
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, ideas, ideals, 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 was connected 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 and stated he was going to reduce his gluten and dairy intake, he also 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.
He was still feeling indifferent and 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. From there on he had more tests, his brother Jeremias was, is, and is still contacting clinics, hospitals, private practice, and doing the most research possible.
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 not be able to feel the same person I fell in love with again, 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. He is still recovering now at Santa Maria della Misericordia Hospital in Udine (AOUUD).
The next step was to get the results from the biopsy, one week went by, the right half of Lucas’ body was and still is paralyzed, his lip has fallen and his eyesight is blurry, he speaks but has a slow speech. Two weeks went by, Jeremias already had everything ready to transfer to a clinic to start radiotherapy at Centro Nazionale di Adroterapia (CNAO) at Pavia, or we will take him to Trento or Padova.
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, but we were told . His tumor is stage 4, but slowly growing, which is the only ‘positive’ aspect, but is already more than 5cm in width and not stopping.
This broke my heart, literally, I was unconsolable for about a week, 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 and with help of my friends some research.
But back to what Jeremias had planned, he had a Plan A, B, and C, which after sending the biopsy they all collapsed. He had to now build a plan D, E and F, which he did, D and E fell apart as well, and F is a paleative cure, this means, to slow down his death.
Mid August Lucas’ brother found a patient with the same tumor as Lucas, pretty close to his age, and his wife works in neuroscience, so we were determined to speak to them and find out what treatment they were doing.
We have decided to proceed with the same treatment as they have, 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 euro, according to the doctor Arno Thaller, Lucas needs around 8-10 doses for his tumor to either shrink or disappear, each dose being administered every 2-3 weeks.
Our plan is to have him in San Severino Marche (MC) and start him on radiation and temozolomide (TMZ), as well as physical therapy, then as he progresses and has more control of his movements, is able to sit down for a few hours of travel and is able to eat solids, we want to start taking him ASAP to Germany for the OV therapy.
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.