IMMUNOTHERAPY AND ONC201 - THE LAST CHANCE TREATMENT
Ends at: 25 October 2018
W naszym życiu, w życiu Jasia dzieje się bardzo dużo. Najważniejsze jednak, że dzięki Waszej pomocy ta walka może nadal trwać!
Jesteśmy po Immunoterapii, Jasiek cały czas przyjmuje lek ONC201, rozpoczął też terapię Sirolimusem. To pierwszy polski pacjent z tą diagnozą na podstawie rekomendacji ze szwajcarskiej kliniki, który pod kontrolą lekarzy z Centrum Zdrowia Dziecka zaczyna nową terapię. Pierwszy na świecie jednocześnie z lekiem ONC201, który także jest w fazie badań klinicznych. Znów jesteśmy pod baczną obserwacją najlepszych specjalistów na świecie.
Co się zadzieje? Na to pytanie nikt nie zna odpowiedzi. Tą odpowiedź da nam rezonans 10 czerwca w Warszawie. Teoretycznie guz powinien mieć odcięty dostęp do pokarmu. Dotychczasowe badania we Francji pokazały, że lek z tej samej rodziny zatrzymał guza. To samo, ale w inny sposób robi ONC201. Czyli atakujemy go z dwóch stron. Plus naświetlania, które będą jeszcze co najmniej miesiąc, a nawet do 6 miesięcy od ich zakończenia, by zabijały chore komórki.
Czujemy się jak przed wyprawą w Himalaje na niezdobyty szczyt. Ale nie mamy wyjścia. Musimy pokonać tego smoka. Nasz rycerz w zbroi z naszych modlitw i dobrych myśli bierze swoją szablę i idzie!
Niestety, skończyły się środki na leczenie, dlatego ponownie prosimy Was o pomoc. ONC201 i Sirolimus nie są refundowane, musimy płacić za nie sami...
Dziękujemy, że pomogliście Jasiowi. Dzięki Wam jego walka o życie może trwać, a my możemy przecierać kolejne szlaki!
Aktualna zbiórka na leczenie Jasia trwa tutaj: KLIK
John is our 13 years old happy urchin, always ready for jokes, he is an amazing friend, a good student, the champion of the region in fencing. Until now he was biking like crazy, neighbors couldn´t beat him in basketball and he was spending nights playing games with friends. And after all that, woke up early in the morning to go to another fencing competition, to bring yet another medal. He is like you… he was like you… In May he became nauseous and dizzy. After few failed diagnoses, someone had an idea to perform MRI of his head. And there IT was!
Johns arch enemy that until now grew completely undetected in his brain stem. The tumor was huge, first measurements showed 5x5x3,5 cm, and it looked like a braid in between the areas of brain stem responsible for heartbeat and breathing. None of dozens of neurosurgeons We consulted all over the world did not take a risk to remove it. Diagnosis was of the worst kind. The tumor is inoperable. Polish protocol of treating those tumors introduces chemo- and radiotherapy, which very rarely prove effective, and if, the improvement is short termed. For our whole family this information was like a war signal! Days and nights we were looking for other parents, doctors…anyone who could really explain this whole thing a little bit more.
After a cycle of radiotherapy performed in Poland, we went to USA to consult one of the best neurologist in the world. It turned out that only he answered all our questions and he only agreed to provide John with treatment. We were anxious about the results of the MRI, even more because it was the first time John’s spine was scanned as well and that is where metastases prove to be the most common. We were praying for miracle! Luckily the MRI showed that results of radiotherapy John received in Poland exceeded any expectations we had. Spine was clean and the tumor in John’s brain shrank by 60-70 %! Professor was really surprised with the results and said: Listen, we have time, we have a chance to save John!!! Tumor of this kind may be very malignant, and it can double in size in just few days! But thanks to this amazing shrinkage we got the time for fight! Thanks to this, and with your help, we can fight something that was unbeatable just few years back! Then, the doctor said the word: immunotherapy. It is the newest method of fighting cancer, for which two scientists just got Noble prize. It is a big hope of modern medicine, something that in the future can help humanity to defeat the curse of allergies and cancer. But now it can help save John.
The best center of immunotherapy research in the world in Cologne in Germany. Scientist there are making a special vaccine from patients’ blood to stimulate his immune system to learn itself how to localize and eliminate cancer cells in the body. It turned out that John’s tumor is small enough that this method can be used on him. Before this option didn’t exist. The treatment will be topped up with a medicine that is still on clinical trials but in one year it might be sold in pharmacies as an anti-cancer drug, under the name ONC201. It is already taken by a lot of children, without side effects. Its role is to stop the tumor from spreading but it also proves to shrink it. The costs of this medicine for three months is around 12 000 PLN. For now, we assume he is going to take it for 9 months. When the doctors in Poland had nothing to offer and were counting how many months John has left to live, we didn’t surrender in fight for his life. We contacted around 50 expert doctors all around the world, regardless of sad looks and words of sympathy. After many months we got a chance to change the fate - last one and the only one in our life. And very expensive one. We must save John before it will be too late! We have no time to lose. In few days John is going to start 3-month immunotherapy cycle. Every three weeks he will have to spend one week in Cologne, where he will receive the vaccine along with other connected treatment methods.
On next Monday already we will have to pay 1st installment for the treatment - 90 000 PLN. On top of that there are costs of accommodation and communication. Unfortunately, despite earlier fundraising and help from different organizations we cannot cover all the costs of John’s treatment. Time is running and we must hit the tumor before it will gather it strengths to strike back. Every day is important since the tumor might be malignant and may start to grow again. Let’s not allow it! Time is the limit and we know that we cannot avoid this huge financial obstacle on our own. Only with Your help this is possible!! We believe that together we have the power!
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