Nasza mała Hania urodziła się w czerwcu 2014 r. Od początku była zdrowym i bardzo grzecznym dzieckiem. Potrafiła leżeć po 2-3 godziny bez płaczu, czekając tylko na okazję aż ktoś do niej podejdzie żeby obdarzyć go swoim słodkim uśmiechem.

Podczas wizyty okulistycznej w sylwestra 2014 r. potwierdziły się nasze najgorsze obawy, że Hania ma nowotwór złośliwy oka, zwany potocznie siatkówczakiem. Szok i niedowierzanie. Ledwo co się dowiedzieliśmy że nasza starsza córka choruje na Leśniowskiego-Crohna, a teraz młodsza ma raka. Szybko wzięliśmy się w garść i dzięki wielkiej pomocy znajomej okulistki pomimo trwania długiego weekendu dostaliśmy się 5 stycznia na oddział onkologii Centrum Zdrowia Dziecka w Warszawie. Po pierwszych badaniach potwierdzających obecność guza o wielkości 1,5cm tuż za prawym okiem, zaczęto kurację chemią ogólną.

Hania przeszła 6 cykli dwudniowych chemioterapii wg schematu JOE. Pod koniec kwietnia lekarze poinformowali nas ze guz jest w regresji. Byliśmy niezmiernie szczęśliwi bo to potwierdzało słuszność naszej decyzji o kontynuowaniu leczenia w Warszawie. Mimo że lekarze nie dawali nam dużych nadziei na dłuższe utrzymywanie się tego stanu, gdyż jak to ujęli "siatkówczak" jest wyjątkowo złośliwym nowotworem, to i tak w głębi serca, nawet na przekór zdrowemu rozsądkowi, wierzyliśmy w to że wznowa nie nastąpi. Płonne to były nadzieję, gdyż już w połowie lipca, ponad 2 miesiące od zakończenia chemioterapii, podczas badania okulistycznego dna oka lekarz przekazał nam złą nowinę. Chemia nie przyniosła rezultatów, jedynie na chwilę uśpiła guza, ale ten wraca i wydaje się być jeszcze silniejszy.

W sierpniu podczas rutynowego badania dna oka, poprzedzającego kolejny zabieg podania melphalanu, okazało się że guz nadal jest aktywny a wokół niego powstało wiele nowych. Lekarz zastował terapię laserową w celu usunięcia malutkich guzów i zalecił podanie melhpalanu wraz z karboplatyną. Niestety do podania leków nie doszło, gdyż podczas samego zabiegu nastąpiły komplikacje (prawdopodobny wstrząs anafilaktyczny) w postaci spadku saturacji, skurczu oskrzeli i naczyń krwionośnych. Hania wylądowała na Odziale intensywnej terapii...

Podczas ostatniego badania okulistycznego, które miało miejsce pod koniec października, lekarz poinformował nas że nie ma sensu dalej truć małego organizmu naszego dziecka, gdyż i tak przyjęła już zbyt dużo chemii jak na swój wiek i wagę. Kolejnym etapem w razie wznowy ma być usunięcie oczka Hani.

Our little daughter, Hania was born in June 2014. Since the beginning she has been healthy and very calm baby. She could lay in her bed 2 – 3 hours without any cry and wait for an opportunity to bestow somebody with her sweet smile.

At the end of 2014 we noticed that Hania more often squints and at an angle her right eye seems to be glassy (it is called cat flash). But the one who realized us that it could be very serious disease was our brother-in-law. During the Christmas he took some photos of Hania using flashlight. In every picture Hania has a white reflection at he right eye. He told us that he had read the story about the boy who had the same problem with pictures and finally occurred that it was a tumor. Unfortunately our brother-in-law was right. We haven’t heard about retinoblastoma until that day.

The ophthalmologic visit was on the New Year’s Eve 2014 and the doctor confirmed our worst fears – the diagnosis was eye cancer called retinoblastoma. We were shocked – only two weeks earlier we had been informed that our older daughter is suffering form Leśniowski-Crohn disease. We were crushed… But we had to pull ourselves together – for our kids. There were no time for crying. Thanks to great help from friendly oculist, on the 5th of January 2015, despite it was long weekend in Poland, we were on the oncology department of Child’s Health Center in Warsaw. The 1,5 cm tumor was confirmed just behind Hania’s right eye. The overall chemotherapy was started immediately.

After first two weeks of chemotherapy Hania’s arms and legs were black and blue everywhere from the stitches and venflon’s stabilizing trials. The treatment seemed to be long the decision about implementation of central venous catheter was made. At the end of January 2015, Hania had her vascular access port implanted, just before the second dose of chemotherapy.

Hania had six cycles of chemotherapy according to JOE schema. Every cycle lasted two days. At the end of April 2015 we were informed about tumor’s regression. We were extremely happy because it confirmed rightness of our decision that Hania’s treatment would be continued at Child’s Health Centre. Despite the fact that doctors didn’t give us hope that the regression would persist, we believed that recurrence wouldn’t take place. Our hopes were against nous as the doctors pointed that retinoblastoma is particularly malicious tumor. But we believed. Our hopes were vain – in mid-July, nearly two months after treatment was over, during the fundus examination, we were given the bad news. Chemotherapy wasn’t succeed, the tumor was only aslept for a while. It came back and it was more malicious…

The doctors made the decision that Hania would be treated with a newest and the most effective method, but also innovative. Exertions of the direct application of the high concentrated melphalan involves the precise application of chemo through the femoral artery directly to the ophthalmic artery which is very slight, tight and is an offshoot of cerebral arteries. Hania was third child in Polad who passed this serious three-hour exertions. Again we were hopeful because we had read about salutary effects of this method abroad.

In August 2015 during routine fundus examination, which preluded second dose of melphalan, it turned out to that the tumor is still active. Moreover around the first tumor arose lot of new, smaller tumors. The doctor used the laser therapy in order to remove those little tumors. He also recommended application of melphalan with carboplatin. Unfortunately drugs weren’t given due to complications during surgery (probably anaphylaxis): decrease the saturation appear, bronchospasm and vasoconstrictor. Next days Hania spent on the intensive care department.
Because of complications and the potential risk of another trial of intra-arterial drugs application this method was abandoned by doctors and the decision of using systemic chemotherapy was made. This time chemo was harder because it was five day long ICE scheme. Hania passed through three cycles of ICE chemo.

During the ophthalmological examination at the end of October 2015 the doctor told us that continuing poisoning Hania’s little organism is pointless. He said that Hania took too much chemo as for her age and weight. The next step in case of recurrence would be eyeball removal.

We do not want to let this happen! We spent a lot of time analyzing all possibilities, we got contacts to clinics in Essen and Siena, but flight the US, to dr David Abramson seems to be the sur-fire and giving the best results solution. The efficacy of the dr Abramson’s treatment is about 98%. He has already helped Adaś Afryka, Kubuś Szczepański, Kacper Siewniak, Jaś Karwowski and Ksawery Sadzik is on his way to full recovery.

The only obstacle is the price of the treatment. The estimate is unimaginably high – we received estimation for treatment in two hospitals in New York and it exceeds 300 000 $. The proper estimation and the action plan we will be given after the first examination in New York which will be conducted by dr D. Abramson . Still we need a half of this amount to go there.