It is so hard to come to terms when your beloved baby's life begins with unspeakable pain and suffering. It's so painful to see the endless syringes, drips, and chemicals poured into the veins of a few months old boy. I know this sight by heart, as this is what the life in the oncology ward is like. The ward in which one’s thoughts are often preoccupied with death. Mikołaj and I spent 1.5 years there. Almost his whole life…
Mikołaj is now in remission, but the thought of his illness coming back deprives me of sleep at night. If cancer relapses there will be no rescue. A New York clinic offers a specialist vaccine against cancer that minimises the chances of cancer relapse. Unfortunately, its cost is mind-blowing!
I would have never suspected, that the first symptoms would lead us to the oncology ward. At first, leukemia was suspected… A few days later - relief - cancer was ruled out when antibiotics started working. Doctors even considered discharging Mikołaj from hospital. Only a couple of final checks of his head and stomach… standard procedure. Suddenly, I found myself in the doctor’s room being told about cancer again. Only this time, there were no suspicions. It was certain. It was not leukemia, but a different type of cancer…
Neuroblastoma - malignant infant cancer. In Mikolaj's abdomen there was a grapefruit size lump - 5 x 3.5 inch!
We were referred to the oncologist. In my hand I held a document which confirmed the worst and I was crying. The early diagnosis only led to fear and tears. The lump could not be operated - it surrounded important organs, an artery and vena cava. Mikołaj would not survive the surgery. The only option was to reduce the lump with chemotherapy.
Mikołaj was 8 months when he took the first cycle of chemotherapy. Every day he coped with it progressively worse - he swelled and his body was covered with red spots. He was pale sitting on a huge hospital bed. He took less and less interest in his favourite toys, the last taste of childhood in the sad hospital reality around him. After the second cycle of chemotherapy we received his histopathology results. The cancer was stronger than we initially thought.
We also received positive MYNC gene test results. Such strong gene mutation means that neuroblastoma is very nasty and aggressive.
After the eighth cycle of chemotherapy Mikołaj was taken to the operating theatre. Fortunately, the surgeons managed to remove the lump entirely! Mikołaj then was given megachemioteraphy, autologous stem cell transplant and radiotherapy. Due to the very aggressive nature of his cancer, he also received anti-GD2 immunotherapy in Greifswald, Germany. A therapy which unfortunately is very costly and not subsidised by the national health service. Mikolaj’s treatment cost over 1.2m Polish zlotys and only thanks to 46,000 kind people from all over Poland, who rushed to help us, we were able to collect the full amount.
The anti-cancer vaccination in the New York clinic will stimulate Mikolaj’s body to produce antibodies until the end of his life. It will reduce the risk of cancer relapse, therefore as a mother, I have to do everything to collect money for it. The vaccine is most effective within the first 100 days after the end of immunotherapy. Mikolaj’s immunotherapy finished on 4 April, therefore we have very little time left.
2 June was Mikolaj’s second birthday. My biggest dream is not to worry about his next birthdays… Please, help us.
Zaneta, Mikolaj’s Mum