Child’s frightened eyes on the cancer ward is the worst sight in the world. We have looked at them for 7 years… For so many years he has fought for life and for so many years the cancer tries to take him. Jędrek has the second recurrence of neuroblastoma –deadly dangerous cancer which affects only children. On 8th August he has to start the second stage of treatment using antibodies… The treatment which works! Our son has a chance for life, probably it’s the only one and the last one… The chance that costs a lot. In Poland there is no help for him…
The smile still appears on his freckled face but his eyes reflect everything – the years of suffering which many adults would not survive…The nightmare started when he was 4 years old. He had a backache, a fever and he cried… We went to hospital for one hour examination. We came back home after 15 months… After 9 cycles of chemotherapy, surgery, megachemotherapy, autotransplant and radiotherapy. The day we found out that Jędrzej has a cancer divides our life in half. A parent should be brave; when your child is affected by so serious disease sometimes you lack power to shout and cry.
Neuroblastoma is a cancer which can be very malicious. It attacks rapidly. It kills a half of affected children. It gives metastases. And comes back very often… Together with every recurrence the chance for life is smaller. In Jędrzej’s case the cancer recurred after one year. We have almost forgotten about the oncological nightmare. When we found out about the cancer for the first time we felt unimaginable pain. However, the second time was much more worse… We have barely got our life right, life that was like a scattered house of cards and it collapsed once again.
The cancer took him another two years of life. We don’t want to remember those images but we cannot forget about them… Our son was so weak that he couldn’t stand up or eat, he just vomited and I remember the lock of hair on the pillow… Jędrek took the strongest chemotherapy, he underwent 3 surgeries and bone-marrow transplant. It was a very long, rough, life-and-death battle. We thought that we won the war. We were so wrong…
Jędrek came back home and went to school for the first time. A classroom, lessons and children – it was something new for him, he knew only a padded room. When he was in hospital his only friends were chess pieces. He fought many duels on a chessboard. He was a champion. However, the most important battle takes place beyond the chessboard and his opponent is vicious and tricky…
The end of 2016. It was a routine examination… It was similar to many previous ones and all of them were good. The tumour under the collarbone. Inoperable.
We were prepared for living on cancer ward once again, for another battle for immediate treatment. However, the doctors threw the hands up when they heard that Jędruś is after transplant and it was a second recurrence of neuroblastoma…We didn’t believe that it was the end for one moment. We will never give up! Then the answer came from Greifswald, a centre concerned with the treatment of children with high risk neuroblastoma. That’s the only place where Jędrek got the chance for life… Jędrek started the treatment using anti-GD2 antibodies. Then the next blow came and it was hard for us to accept that – metastases… The doctors decided to administrate the additional chemotherapy. The cost of treatment was enormous but thanks to your help we managed to raise it and pay for our child’s chance for life.
Since June 2017 to April 2018 the hospital in Greiswald was our second home. Jędrek underwent 8 cycles of antibodies. The treatment worked! His state stabilised. The genetic test proved that Jędrek has GD2 mutation and because of that the antibodies worked! The treatment has to be continued in UKGM Clinic in Giessen – there is a chance! In order to increase the effect of the treatment the combined therapy was planned: MIBG radioactive iodine therapy (he has already undergone that stage) and then the treatment by Dinutuximab Beta antibodies and Nivolumab antibodies. Jędruś has to undergo 6 or 8 cycles and each will last one month… On 8th-9th August we have to be in Clinic in Giessen. We must have money at least for the first cycle!
It is very unfair that the treatment that is commonly available in Europe is still not available for every child in Poland; that Jędrek’s life and life of other children depends on the money; that except for the fear of life, you worry how to raise that money. Will we have enough money for another cycle? Will we have money to fight?
Sometimes our hearts sink but the doctors have new solution all the time, they do not give up, so we do not give up too. We believe. Jędrek is in a good condition. He has a strength to fight and desire for life. He does not have dark thought in his childlike blitheness. He enjoys the life and we do it with him. We do not want anything more than his opportunity to live…
Please, save his life.
