It can be said that until December 31, 2017, we were an average Polish family, leading a fairly happy life in exile in England. In the morning we had no idea how difficult the road we were about to walk would be. That day changed us and our fate forever.
We flew to Poland for New Year’s Eve party. It was supposed to be great fun for us parents. Our 6-year-old son Nikodem was also excited because he was going to spend that night with his long-unseen Grandma. In the early afternoon he suddenly felt ill. Dizziness, nausea, vomiting and vision disturbances. I remember that at that moment we did not allow ourselves to think that it could be something serious, but after consulting a doctor we knew, we decided to go to the Clinical Center in Gdańsk for tests.
CT. Initially, the young doctor who took care of us said that there was nothing disturbing in the head and referred us for an eye examination. During this examination, a nurse came into the office and asked me to come with her. I had a very bad feeling already at that point. She took me to the same doctor, who this time said sadly that something very disturbing had been found in Nikodem’s head. I was out of breath and leaned against the wall.
On the same New Year’s Eve evening, we learned that Nikodem had medulloblastoma, a malignant tumor of the cerebellum, and that an operation and long-term oncological treatment would be necessary. When the fireworks flashed outside the window, we were drowning in tears.
The next day we were transported by ambulance to Warsaw, where treatment was to begin at the Children’s Health Institute. From the first two weeks after the diagnosis, I remember only great despair and the desire to wake up from the “bad dream”. Two days before his sixth birthday, Nikodem underwent surgery. After histopathological examination of the tumor sample, it turned out that it is one of the rarest and most malignant subtypes of medulloblastoma. We found out that no child with this diagnosis in Poland has been cured so far. In addition, MRIs showed metastases throughout the spinal cord.
The prognosis was hopeless. From the side of the doctors there were statements such as: “his life is short” or “take the child to see dolphins”. These are probably some of the worst words a parent can hear about their child, but at that stage we were so much “bombarded” with bad news that somehow they stopped being depressing and started motivating us to act. With the start of the ineffective conventional protocol, we started intensive research on our own.
Meetings with specialists in various types of alternative medications. About 3 weeks after the diagnosis, we implemented a supplement protocol prepared by Anna, Nikodem’s mother. I’ve found similar cases to ours and talked to parents all over the world. I wrote e-mails to the world’s most famous pediatric neuro-oncologists such as Dr. Amar Gajjar, Dr. Mark Kieran, Dr. Irene Slavc, Dr. Massimo Zollo and Dr. Stefaan van Gool. Amazingly, I got answers. Some conversations were very detailed and lasted for weeks. It was then that I first came across dendritic cell therapy.
We explored all possible directions, including a visit to the visionary. It took place day before the MRI, which was scheduled for February 15. I remember being very skeptical about the meeting. At the end of it, we asked about the result of tomorrow’s MRI. The lady replied: “Tomorrow you will be a good day!”
No cóż, dzień rzeczywiście był wspaniały.
BRAK ŚLADÓW CHOROBY
Our joy cannot be expressed in words. After more than 45 days of the worst darkness in our lives and a constant influx of heartbreaking information, it turned out that the sun came out for us from behind the clouds, that it may not be the end and that, despite everything, we may be able to cure our beloved Son. At the same time, we realized that this was still the beginning of our fight. Knowing our difficult diagnosis and fear of recurrence, which affected so many children with this diagnosis, we decided to break the Polish protocol in consultation with the leading physician.
The standard of medulloblastoma treatment in Poland includes postoperative chemotherapy, photon radiotherapy and maintenance chemotherapy and lasts about 1.5 years. We discontinued the conventional protocol in the middle of initial chemo approximately 2 months after starting treatment. Together with the doctors, we decided that irradiation is necessary in such a difficult diagnosis and we decided to speed it up. In order to minimize the side effects of irradiation, we decided on proton therapy in Germany, which is much more precise than photon treatment as standard in Poland and thus saves some body organs from damage.
The effectiveness of treatment, but also the minimization of side effects was our priority. Of course, the most important thing was to save our child’s life, but at all costs we wanted to protect this small, innocent body from any possible complications. Therefore, after several weeks of e-mail conversation with Dr. Van Gool, we became more interested in the dendritic cell therapy carried out in the clinic in Cologne. The idea of ”reversing” the immune system so that it recognizes and fights cancer cells in the body, and the virtually no side effects of the treatment, were the factors that were extremely compelling to us.
After the end of radiotherapy in Germany, we returned to the Children’s Health Center for consultations regarding further treatment with our leading oncologist. A long-term protocol of maintenance chemotherapy was already prepared for us. But instead of going along with it we made a radical and brave decision to completely abandon conventional treatment and go for dendritic cell therapy to the IOZK clinic in Cologne.
Several years have passed since this difficult decision. To our immeasurable joy, Nikodem enjoys good health, trains martial arts and attends singing lessons. He loves playing with the dog. He is a good, smart, young man and a diligent student. Filled with humility and gratefulness, we enjoy each new day with a smile and we are the happiest parents in the world.
Under this link, you will find a Facebook fan page dedicated to Nikodem, through which we have received spiritual and financial support from many people over the years:
We believe that dendritic cell immunotherapy and a broader concept of personalized approach will revolutionize cancer treatment in the coming years, and in the near future, dendritic cell vaccines will become an integral part of standard treatment protocols. Over the past few years, we have facilitated direct consultations with doctors from Germany for many patients from UK and other European countries. We assist in gathering documentation and support the organization of trips to Germany. We share knowledge about supplementation and innovative, scientifically proven methods of cancer treatment.