Vaccin against Sebastiaan's brain tumor

> ENGLISH version

(Nederlandse versie: scroll naar beneden)

(Wersja polska: przewiń na dół)

Dear family, friends, colleagues and anyone that want to help,

I am Sebastiaan (49), married and a proud father of 5 children (14, 11, 6, 4 and 3 years old) and in April this year (2022) my life and life of my family changed drastically. After an epileptic insult, I was diagnosed with Glioblastoma, the deadliest form of brain cancer. Despite, there are long-term survivors (10, 15, 20 or even more years), which gives hope. This tumor likes to grow back, and we know that standard treatment is definitely not enough to stop it from growing.

A successful operation in May removed the tumor completely. In the Summertime, I underwent 6 weeks of daily radiotherapy combined with chemotherapy. Until the end of this year I have every month one week of further chemotherapy. After that, treatment stops. This is because there is no officially proven treatment available anywhere. The doctors tell me I need to wait and see when the tumor returns.

I have a loving wife and 5 children; I cannot and do not want to wait! I want to grow old with her. So many things we want to do still. I want to see my small kids growing up and help them making the best choices in life. I want to see them leave the nest and become even more beautiful persons making this world a better place. I still have so much drive to make great things happen at work; I have a job that I love. I want to be there for others for so much longer and help people who need help. I am here to stay.

I found a clinic in Germany that can make a personalized vaccine for me that helps my body to detect and fight the cancer. Expensive (65.000EUR), but very promising!

I kindly ask you for all your support: making a donation to fund this treatment and sharing my story. We do not have this money. I was raised not to ask for money but to work for it, so it is not easy to ask for your contribution to fund my further treatment. Please help me. I appreciate any donation to extend my life. My beautiful life.

Thank you, Sebastiaan

(If you are interested in my full story in ENGLISH, please scroll further down)

_________________________________________________________________________

> NEDERLANDSE versie

Beste familie, vrienden, collega's en iedereen die wil helpen,

Ik ben Sebastiaan (49), getrouwd en trotse vader van 5 kinderen (14, 11, 6, 4 en 3 jaar) en in april dit jaar (2022) is mijn leven en dat van mijn gezin drastisch veranderd. Na een epileptische aanval kreeg ik de diagnose glioblastoom, de dodelijkste vorm van hersenkanker. Desondanks zijn er lang-overlevenden (10, 15, 20 of zelfs meer jaren), wat hoop geeft. Deze tumor groeit graag terug en we weten dat de standaardbehandeling zeker niet voldoende is om de groei te stoppen.

Een succesvolle operatie in mei verwijderde de tumor volledig. In de zomer onderging ik 6 weken dagelijkse radiotherapie gecombineerd met chemotherapie. Tot het einde van dit jaar heb ik nog elke maand een week verdere chemotherapie. Daarna stopt de behandeling. Dit komt omdat er nergens een officieel bewezen behandeling beschikbaar is. De dokters zeggen dat ik maar moet afwachten wanneer de tumor terugkeert.

Ik heb een liefhebbende vrouw en 5 kinderen; Ik kan en wil niet wachten! Ik wil oud worden met haar. Zoveel dingen die we nog willen doen. Ik wil mijn kleine kinderen zien opgroeien en hen helpen de beste keuzes in het leven te maken. Ik wil ze het nest zien verlaten en nog mooiere personen zien worden die deze wereld een betere plek maken. Ik heb nog zoveel energie om op het werk met mijn team geweldige dingen te bereiken. Ik heb de mooiste baan die er is. Ik wil er nog zoveel langer voor anderen kunnen zijn en mensen helpen die hulp nodig hebben. Ik wil blijven!

Ik heb een kliniek in Duitsland gevonden die een gepersonaliseerd vaccin voor mij kan maken dat mijn lichaam helpt de kanker op te sporen en te bestrijden. Wel erg duur (65.000EUR), maar veelbelovend!

Ik vraag je vriendelijk om jouw steun: een donatie doen om deze behandeling te financieren en mijn verhaal delen. Wij hebben dit geld niet. Omdat ik geleerd heb op altijd op eigen benen te staan, vind ik het best moeilijk jou om een bijdrage te vragen om mijn verdere behandeling te financieren. Help me alsjeblieft. Ik waardeer elke donatie om mijn leven te verlengen. Mijn mooie leven.

Dankjewel, Sebastiaan

(Als je geïnteresseerd bent in mijn hele verhaal (ENGELS), scroll dan naar beneden)

_________________________________________________________________________

> Wersja POLSKA:

Droga Rodzino, Przyjaciele, Koledzy i każdy, kto chce pomóc.

Nazywam się Sebastiaan (49), mam żonę i jestem dumnym ojcem 5 dzieci (14, 11, 6, 4 i 3 lata). Życie moje i mojej rodziny drastycznie zmieniło się w kwietniu tego roku (2022), kiedy po ataku padaczkowym zdiagnozowano u mnie glejaka wielopostaciowego, najbardziej śmiertelną formę raka mózgu. Pomimo tego, że statystyczne prognozy są mało pomyślne, istnieją osoby, które żyją długo z tą chorobą (10, 15, 20 lat lub nawet dłużej), co daje nadzieję. Ten guz ma tendencje do odrastania i wiemy, że standardowe leczenie nie wystarczy, aby powstrzymać jego powrót.

W maju przeszedłem operację, dzięki której udało się całkowicie usunąć guza. Latem byłem poddany 6-tygodniowej, codziennej radioterapii połączonej z chemioterapią. Do końca 2022 roku jestem w drugiej fazie leczenia – chemii podtrzymującej, podawanej w cyklach comiesięcznych. Następnie leczenie sie kończy. Wynika to z faktu, że nigdzie nie ma oficjalnie udowodnionej formy leczenia. Lekarze mówią mi, żeby cokolwiek zrobić muszę poczekać aż guz odrośnie.

Mam kochającą żonę i 5 dzieci. Nie mogę i nie chcę czekać! Chcę widzieć, jak moje małe dzieci dorastają, pomagać im w dokonywaniu najlepszych wyborów życiowych. Chcę zobaczyć, jak opuszczają gniazdo rodzinne i stają się jeszcze piękniejszymi ludźmi, czyniąc ten świat lepszym miejscem. Chcę zestarzeć się z moją żoną. Jest jeszcze tak wiele rzeczy, które chcemy wspólnie zrobić. Mam pracę, którą kocham i wciąż tyle zapału na wdrażanie nowych pomysłów. Tak bardzo chcę zostać tutaj dłużej i pomagać innym, którzy potrzebują mojej pomocy. Jestem tutaj, aby zostać.

Znaleźliśmy klinikę w Niemczech, która jest w stanie przygotować dla mnie spersonalizowaną szczepionkę, mogącą pomóc mojemu organizmowi wykryć i zwalczyć nowotwór. Leczenie jest bardzo obiecujące, ale i drogie (65.000 EUR)! Zatem zwracam sie do Was z prośbą o wpłaty pieniędzy na sfinansowanie leczenia i o pomoc w dzieleniu się moją historią. Nie zostałem wychowany, by prosić o pieniądze, ale by na nie pracować - tym bardziej nie jest mi łatwo prosić o datki, jakkolwiek małe czy duże, by zapłacić za leczenie, które może uratować mi życie.

Uprzejmie proszę o pomoc. Doceniam każdą darowiznę, która da mi szansę na przedłużenie mojego życia. Mojego pięknego życia.

Dziękuję,

Sebastiaan.

(Jeśli jesteś zainteresowany poznaniem całej mojej historii (WERSJA ANGIELSKA), proszę przewiń dalej na dół)

_________________________________________________________________________

> MY FULL STORY in ENGLISH

In April 2022, I had an epileptic insult at work, scaring the hell out of my boss, who was with me in the room for an easy Monday meeting. It was the first (and for now: the last) insult I ever had. When I woke up on my office floor, the ambulance personnel asked me if I knew who I was and where I was. Of course, I knew: Sebastiaan and I am in my office having a meeting with my boss. They took me in the ambulance (another ‘first time ever' for me) to the hospital, where it started to hit me that I had an epileptic attack. My wife arrived, and I felt completely normal, with no pain or strange things in my body. The Neurologist explained that I had to do an ECG scan and an MRI scan to find out what happened in my head.

When I met with the Neurologist for the results of that scan, I started the conversation that it could not be epilepsy and that I probably fainted because I did not eat enough that April morning. “Well, I don’t have good news; we found a tumor” he interrupted. I will never forget how I felt after those words. Like I was weightless, unable to think of anything to say to that. He showed me on the screen that the tumor was about 1.5 cm and positioned on the right side of my head, almost attached to the skull. The good news was that the tumor was positioned favorably for an operation. I was scheduled for a complete upper-body CT scan right after the meeting to find any other (related) tumors. I walked through the hospital and called my wife, who burst into tears. I called my mom, who was shocked too. After the CT scan, I biked home, wondering what would unfold in the coming period.

The CT scan showed ‘all clear’, except for a minor deviation on my thyroid. That was good news, but waiting for the doctor to give you information is nerve-wracking! Of course, the news ran around at work, and many colleagues were shocked by the news of what happened. It was amazing to receive so much sympathy from my colleagues. From text messages to phone calls, postal cards, presents and prayers until today all this support humbles me.

It became clear brain surgery was due to remove my tumor. That happened on 18th May 2022. The operation went very well. Afterwards the kind surgeon told me: “I cut it out, and I cut generously”, meaning that he made sure all tumor tissue was fully resected. The favorable location of my tumor on the right temporal lobe enabled it. I felt no pain; in fact, I felt very well. The MRI showed the entire tumor was removed: good news! But the big question was, what kind of tumor this was. The surgeon said to expect the worst. After 3 days in the hospital, they allowed me to go home. And I was so happy to see my kids again.

The tumor was indeed the worst of its kind: a malignant Glioblastoma tumor. The roller coaster continued. I had to start the standard care treatment (Stupp), meaning that I had to go to radiotherapy 6 weeks in a row, every working day and start chemotherapy at the same time. That cycle ended in late July 2022, and 4 weeks later, I started the second phase of the treatment with a daily (5) higher dose of chemotherapy with pauses of 3 weeks. I am currently in the third cycle of that chemotherapy and just finished the 5th and last day of chemo, so I am off for the next 3 weeks.

So how am I doing? I think I am doing great. During the whole treatment, I tried to live my life as I always had: taking care of my family and going to work. On days I did not feel very well, I took it easy and worked from home at a reduced speed. All the time, I felt, and still feel, so confident that I will be one of those long-term survivors of this horrible disease. I believe that aside from medical treatment, a strong, positive spirit will also contribute.

My wife, the love of my life, has done a lot of reading about this disease and in the many visits we had with doctors, she could baffle them with smart, unexpected, specialistic questions. Some doctors felt uncomfortable. Other doctors were delighted to be challenged and get the outside perspective. Integrative Medicine doctor, the only one in the country, was a good example of that. Integrative Medicine (IM) includes a more holistic view of medicine and treatments; diet, lifestyle, and peace of mind. We were blessed to have found her. She is helping us to make the right and safe choices at the right time of the treatment. Additionally, a naturopathic integrative specialist from the US advised us on diet and supplements for this type of tumor. I started to follow a strict low-carb diet with many supplements that enhance the treatment.

Now, what does my future look like? I believe everything is going to be all right. But I cannot ignore the severity of this disease. There is no cure. Although the tumor was removed, the cancer (stem cells) is likely still there. However, modern MRI scanners cannot detect it because it spreads on a molecular level and, as the Neurologist says: "we need to wait until it starts growing again and only then we may, or may not, be able to do something".

I don’t accept that. We cannot wait for it to come back and do nothing.

So, by recommendation, we found a high-tech medical clinic in Germany, who firstly did a further (read: more comprehensive) analysis of the tumor tissue. The outcome was positive. The doctor surprised us not only with the expected message (we hoped for), that they had excellent data to develop a personalized vaccine against my cancer, but also she gave additional findings. For instance, my cancer could not have been given genetically to me by my parents, nor could I pass it on to my children. The vaccine option she presented is ground-breaking and in the trial phase. And this is why any health insurance does not cover the costs of this vaccine. The vaccine will enable my body to detect and fight the cancer (immunotherapy). This clinic now has more than 10 years of experience making vaccines; the results are very promising and will soon be published to science. And, it is the only option if we don’t want to sit and wait for worse to happen. And I don’t want that.

I want to grow old with my beautiful wife. So many things we want to do still. I want to see my small kids growing up and help them making the best choices in life. I want to see them leave the nest and become even more beautiful persons making this world a better place. I still have so much drive to make great things happen at work; I have a job that I love. I want to be there for others for so much longer and help people who need help. I want to watch the next people landing on the Moon and on Mars. I am here to stay.

The vaccine and additional costs (traveling to Germany and blood analysis) are around 65.000 EUR. This treatment involves traveling to the clinic in south Germany to have the (14) injections. We do not have this money. I was raised not to ask for money but to work for it, so it is not easy to ask for your contribution to fund my further treatment. Please help me. I appreciate any donation to extend my life. My beautiful life.

Thank you.

Sebastiaan Bolt