Tumour which wants to steal the soul
Leczenie siatkówczaka u Dr Abramsona w USA
Ends at: 23 August 2016
Oluś, którego walka ze złośliwym nowotworem oka poruszyła tysiące serc, dzięki Waszemu wsparciu pod koniec sierpnia wyjechał na leczenie w Stanach Zjednoczonych, do najlepszego specjalisty w leczeniu siatkówczaka na świecie.
Tam usłyszał bardzo dobrą wiadomość!
Rodzice niezwykle denerwowali się, co wykaże przeprowadzona 2 tygodnie później kontrola. Rezultat wrześniowego badania był jednak spełnieniem ich snów – okazało się, że dr Abramson jest zadowolony z rezultatu po użyciu lasera po ostatniej kontroli. Nie przewidywał, aby oczko Olka w przyszłości potrzebowało chemioterapii.
Olek razem z rodzicami wrócił do Polski.
Lekarze stwierdzili, że chłopiec powinien zacząć okularki, żeby chronić zarówno chore, jak i zdrowe oczko. Obawiano się, jak chłopiec na nie zareaguje, ale na szczęście był zachwycony.
W listopadzie Oluś razem z rodzicami wrócił do Stanów Zjednoczonych, na badania kontrolne dna oka. Niestety okazało się, że pojawiła się niewielka zmiana i dr Abramson zdecydował o wszczepieniu Olkowi radioaktywnej płytki. Zabieg na szczęście odbył się bez komplikacji.
Olek regenerowal się po zabiegu. 13 grudnia dotarła do nas kolejna wspaniała wiadomość:
Olek was only a dozen or so months old when he was attacked by the deadly tumour, grasped from safe arms of his parents and thrown on the ring of oncological hell. Since two years his second home is hospital where instead of cheerful childhood he’s in desperate challenge for saving his sight, health and life. The struggle, in which accessible methods are running out, in which rescue is on the other side of the ocean. So little time, so much to collect but giving up will only mean one thing – failure. And for that to happen we cannot allow.
The eye is the mirror of the soul. Sparkling, trusting, curious of the world – such are children’s eyes. Olek’s eyes have colour of the sky, they are so pure, so innocent. In eyes one can see emotions, they are the mirror of what we think, feel and how we perceive the world. And that very mirror retinoblastoma wants to break, it an eye malignant neoplasm (tumour of the eye) which takes the sight, shuts children in the darkness, can even lead to metastases into brain, bone marrow, bones and then he could lose not only his eyes, not only the mirror of his soul but also the soul itself – because retinoblastoma is a malignant neoplasm that can even cause death.
It all begins with one photo on December 2014. Mom and Olek are coming back to Poland for Christmas Eve. To his dad, who is to join them soon, she sends pictures of his son every day. On one of those pictures Olek’s eye is white. It conjures up terror all the more because the son rubs the eye which starts to suppurate. Olek’s grandma looks for the answers on the internet. She immediately suspects, touched by a bad feeling, that it might be the cancer. Three months before that the boy’s cousin went down with that sickness. Olek was taken to ophthalmologist straight away.
We mustn’t belive in what we read about health on the internet – thinks the family. It’s an unfounded fear, we will laugh at that yet. Unfortunately, visiting the ophthalmologist is the moment that kills the normality, in which previous life had come to an end irretrievably, in which the fight starts. Retinoblastoma, intraocular eye malignant neoplasm, is occurring only at children below five years old, like it is choosing the most vulnerable, those who cannot protect themselves. Every year in Poland about 20 children are going down with that sickness. On December 2014 we find out that Olek is one of those children.
From that visit I remember almost nothing – says the boy’s mom. When I heard the diagnosis, I fainted. I didn’t belive, I didn’t want to believe. Those first weeks of life after the diagnosis were insane.
Right after the examination the boy is taken to Cracow. When the doctors hear about his case, they take him in without a line. It’s 23th of December when they confirm the diagnosis. They send Olek to “Centrum Zdrowia Dziecka” (Center of Child’s Health) in Warsaw. The parents are driving with their son through encompassed by Christmas Eve rush Warsaw. That drive through city alone takes a couple of hours. It all is like a dream, like the worst nightmare.
It’s the day of Christmas Eve when Olek is accepted to the oncological ward. Instead of Santa Claus there are children who have bald heads, who surround the new patient, being amazed that he still has his hair. Instead of smell of the gingerbread and the Christmas tree there is the smell of death and fear of the child’s life because that is how the oncological ward smells like, place on the border of life and death. Instead of the magic of Christmas Eve there is despair, instead of Christmas wishes there are tears.
On 31st of December Olek received the first chemo. Together with parents he watches the fireworks from the hospital window. He receives the second chemo on Grandma’s and Grandpa’s Day. The next one on Valentine’s Day. His hair are growing thin, he is as pale as a wall but strong.
50:50 – those are the chances estimated by doctors that the eye can be saved. Please be prepared for the worst. The tumour isn’t promising – they shake their heads. The risk of recurrence is high. However, the next examinations show that the tumour is shrinking. Olek finishes 6 cycles of chemo in April. It’s finally good, the periods of time between particular examinations are getting smaller. Slowly, the normality is returning, it seems that it will stay like this forever. Olek is growing up, just like his grandpa he wants to become a railwayman, he loves trains. Toys, clothes, stickers – all with trains on it. One can get on a train and leave at any moment, leaving everything behind you. Everything but cancer.
In October it turns out that the tumour is back. The illusion of half-year peace, hope that we managed to beat the tumour shatters like a soap bubble. The despair and every-day reality on the oncological ward returns. Olek gets the qualification for a chemo given to artery straight into the eye. After couple of weeks it seems that the treatment is working. Next two doses are given to the boy on 21st of December, the vision of the next Christmas Eve at the oncological ward is in front of him. Instead of Christmas wishes the family has only one wish spoken in the burst of tears – for Olek to beat the tumour, to save his life, health and eye.
The wish does not come true, this year in February there is the second recurrence. The life passes from chemo to chemo, from examination to examination. Once again it is fine for a while, for a couple of weeks we live with hope that it is the end. In June there is the third recurrence. In July the fourth one. The scenario is always the same – information about the recurrence, malphalan, regression, relief and hope. At the fourth recurrence something fissures in the boy’s mom. The fight for son’s life lasts the second year, the second year in permanent fear and stress, the second year full of despair. These are the emotions like at war which are mentally destroying the entire family. Why is the treatment not working?! – yells the mother to doctors in tears. They cannot answer, the decision about the removal of the eye is on him.
And then, like a light in a tunnel, the decision about admittance to clinic in the United States has come. The parents know that there is a world-wide known hospital in which distinguished ophthalmologist dr Abramson is treating from retinoblastoma with success, to whom children from around the world are coming and that is from Poland too. They know that the treatment is astronomically expensive but incredibly effective too. To the doctor there are coming children who were considered as hopeless cases in other countries or to which after giving them the chemo somewhere else complication occurred. In every country there are different ingredients, in different doses – chemo alone is not everything, other elements of the treatment decide about that too. This New York hospital is practicing this treatment with success for 20 years and has saved thousands of children. In Poland, although Olek has great care, he had the fourth recurrence, there is removal of the eye in front of him, partial blindness and disability for his entire life. In the hospital in the United States the chance to save Olek’s eye, his sight and life equals 98%. It’s almost a guarantee that the boy will recover and will be able to enjoy his childhood and the beauty of the world around him. The statistics don’t lie – the choice is simple.
The amount for the treatment seems to be huge. But freeing the child from 2-years lasting oncological nightmare is priceless. Olek is only 3 years old. He’s as vibrant as a sparkle but without us it will dissipate. He doesn’t realize that for him to have a chance his parents have to plead for help, tell the world about him. That his life depends on whether the world will want to make winning against sickness happen. And that instead of sleeping his parents dream of being able to tell Olek how you helped to save him.