Maks vs. cancer
Terapia przeciwciałami GD-2
Ends at: 15 June 2015
Zakończyliśmy zbiórkę dla Maksa, ponieważ okazało się, że chłopiec ma szansę na leczenie w Krakowie. 2 lata temu, gdy zaczęły się do siepomaga zgłaszać pierwsze dzieci z neuroblastomą, które nie miały szans na leczenie w Polsce, zaczęła też działać grupa Neuroblastoma Polska. Poza promowaniem zbiórek w Polsce, dążyli do tego, żeby leczenie zostało wprowadzone w Polsce. Udało się - w marcu 2015 roku pierwsze dziecko z neuroblastomą rozpoczęło terapię w Krakowie. Jednak nie wszystkie dzieci mogą być leczone w Polsce i te, które mają odstępstwa od protokołu, muszą szukać pomocy za granicą. A odstępstwa mogą wystąpić na kilku etapach leczenia, więc kiedy jest zagrożenie, tak jak u Maksa, rodzice i tak muszą zbierać pieniądze, żeby w ostatniej chwili w przypadku dyskwalifikacji w Polsce, móc jechać do Włoch lub Niemiec.
Do 10 lipca nie było wiadomo, czy Maks będzie mógł być leczony w Polsce. Wyniki wyszły na szczęście dobrze, tylko jeden marker nowotworowy był podwyższony, jednak można było rozpocząć leczenie, które jest zaplanowane na 2 sierpnia 2015 roku. Wiemy już też, że Maksio otrzyma samo przeciwciało, bez zastrzyków z interleukiny. Zebrane środki zostaną przeznaczone na rehabilitację Maksa po zakończonym leczeniu przeciwciałami, a pozostałą kwotę rodzice chcieliby przekazać na pomoc innym dzieciom chorującym na neuroblastomę, żeby miały taką samą szansę na wyzdrowienie, jak Maks i żeby brak pieniędzy im tej szansy nie odebrał.
Dziękujemy wszystkim, którzy są i byli przy nas. To dzięki Wam moglibyśmy rozpocząć leczenie, gdyby Maks w Polsce otrzymał dyskwalifikację. To dzięki Waszym słowom wsparcia nie poddaliśmy się i cały czas wierzymy, że leczenie pozwoli pozbyć się nowotworu i zacząć w końcu normalnie żyć, poza szpitalnymi ścianami. Do końca życia będziemy odwdzięczać się za to wszystko, co otrzymaliiśmy, przkazując dobro dalej, do tych, którzy go potrzebują.
“Ewa, do you know it’s against the law?”, a friend phrased it bluntly. “What are you talking about?”, snapped back Maks’s mother. It was all about the bruises that came on and off. Maks looked as if somebody had given him black eyes. The ER doctor also thought that Maks was a beaten child. She insisted that the boy be undressed and looked for other bruises on the whole of his body. She found nothing, apart from the bruises under his eyes. “Beating was an absurd theory but come to think of it, if somebody had reported it to the police, we would have found out about the cancer earlier”, said the mother.
Maks turned one in October 2014. He’d been fighting persistent cough for some time. It came on for no reason and without cold or other illness symptoms. Then the bruises started appearing around the eyes. They had an unusual color – they were purple right away and instantly disappeared. The parents first assumed that he had hit himself when playing with a toy or sleeping. “It was awfully hard to hear accusations that we beat him.”, the mother confessed. “But we knew the truth, and it made us even more worried that something was not right, with those bruises coming on and off. His skin turned pale and he started to open the eyes very wide as if he was goggle-eyed. Morphology test came back very bad; the thyroid gland was OK – we had to look elsewhere.” “He has such beautiful eyes”, doctors said. “If doctors marveled at the beauty of his eyes, it might mean that they didn’t notice anything wrong and we are looking for something that doesn’t exist”, the mother wondered. Then they consulted with a doctor from Hajnówka, who noticed that there was something wrong with Maks’s eyes. He also diagnosed an enlarged liver. Later it turned out that the doctor had known by then that it was cancer, but didn’t mention anything to the parents and instead referred them for further tests in Białystok.
“We’re going to Białystok with Maks to the hematology department”, said Maks’s mom to her sister on the way there. “Hematology? But why? Ewa, don’t you know that it might be cancer related?”, she replied. “What are you talking about? It can’t be…” When the doctor came back to the office, Maks’s mom got up. “No, no. Please, sit down.”, said the doctor. “I knew by then that the news was not going to be good.” “Maks has cancer – neuroblastoma, stage 4. That’s the last stage of the disease. On top of that, it has N-myc mutation, which makes the prognosis bad…” “The words couldn’t sink in. And the doctor continued…” “The primary tumor is in the abdominal cavity. It has metastasized to the liver, brain, bones.” The treatment was implemented immediately. Maks was 12 months old. The doctors decided to treat him according to COJEC protocol: an operation, chemotherapy with bone marrow autologous transplant, radiotherapy, retinoids. Family life was split in half – the mother stayed with the son in hospital in Białystok, and the father lived with the daughter in Bielsk Podlaski. There was no other option. The war against cancer had to be declared.
After the first seven cycles of chemotherapy the tumor in the abdomen shrank by half, but kidneys were weak. Tumor extraction is planned for February 2015 followed by adequate post-op treatment. The doctors are doing their best, but they’ve already told parents that the last treatment phase is not available in Poland – in order to save Maks from the recurrence of cancer they would have to go abroad. In a medical statement signed by the case doctor we can read: “Antibodies preparation is not available in Poland, and the cost of such treatment within EU is very high, and unaffordable for the parents of our patient. Such treatment offers the possibility of full recovery.” Maks is facing a few months of treatment but we’ve already started raising money for antibodies as the sum is exorbitant and we’ll not be able to raise so much money at last moment. We’re trying to get the funding for a treatment regime in Italy, because we believe that cancer will respond to the treatment protocol and we’ll manage to go to a clinic in Italy, where the medical costs are lower (the basic quote is € 40 000). Should any complications rise up, forcing the treatment change, additional chemotherapy, then it might become impossible for Maks to be qualified for treatment in Italy, leaving us no choice but to seek treatment in Greifswald in Germany, where the most complicated cases are treated. The medical costs are four times higher there… What about treatment in Poland? We wish for Maks to be on the list and if it becomes possible for him to be treated in Poland, then we’ll not go abroad. But we can’t know if it becomes possible in the future and nobody can give us any guarantee or qualification referral.
For the time being we’re not thinking about it. We believe that everything is in God’s hands and the hands of those He directs – doctors, donors, the people whose hearts are open to help others. There are some moments of doubt, but we don’t let them to anchor us down. We must be strong for Maks – he’s so small but already has to fight for his life. We must stand by him, support him so that he can win this battle. Because of cancer we can possibly lose our son, but with the help of other people we can defeat the disease and rejoice over the fact that Maks is alive and with us.