English

English

 

 Zalan has been suffering from retinoblastoma since 1st of August, 2013. It is a really aggressive  malignant growth in both of the eyes. He has partly lost his eyesight for his right eye. During this time, Zalan has spent 66 days in the hospital. He has been under 37 anesthetic experiences, 28 surgeries and 40 blood tests. We have already driven almost 20000 kms for various treatments. Unfortunately, we have not seen the end of this battle yet.
Please, help us to win this battle. Bank account number: HU32 1091 8001 0000 0031 2222 0000
Swift(Bic): BACXHUHB
The bank account is related to Eniko Pinter. Please, note “donation” in the given box.
 I am now writing about a little boy, who is very-very ill. This little boy is my child, he was born on 9th May 2013. in Győr, so he is not even 3 months old. And he is very ill. He has got bilateral multiplex retinblastoma. This means that his two beautiful dark blue eyes, sparkling like stars have got more tumors. Now (02.08.2013) there are two RB nodules in his left eye near the optic nerve, 3 in his right eyes, the biggest one at the place of the clear sight, so this eye will never work correctly. The clear sight for this eye is forever over. But it can be healed! I have already been suspicious for weeks that something is wrong with the baby. I saw sometimes that if he stares into the distance, his right eye “swims” outside. When he was in the arms of somebody he was only calm when somebody kept him in the left arm, and from the birth if he was on the changing table, he looked from the very first moment on the right.
Never on the left. Later when he started to turn over, he turned always to the right, never to the left. Today we already know why. But get back to…. I noticed as I wrote before that he develops not the way the other three did. When I said this to my husband, who has been an ambulance nurse for 11 years, he said strabismus can disappear with the years passing, and turning to the right is because he likes the football scarf on the wall. (both my husband and elder son are fans for a certain football team). Afterwards it is easy to be clever but I should not leave things that way. My mother-in-law said I talk it into myself, the nursery lady said he has nothing wrong, but if it is comforting for me I should show him to the doctor.
We got an appointment at the eye-specialist for 12thAugust. On Thursday when I was cooking I put him into the cot, so that I can see him. When I reached for the rice I saw his right eye lighting white. I knew there is a trouble with him, I ran with him to the hospital at once. And my greatest fear came true. I felt, as my husband had the same problem 28 years ago. When our first child was born I tried to find out if this disease is transmissible or not. The nursery and an eye-specialist reassured me it is not transmissible. I was after this not suspicious, I was eased. But when I saw the white reflex in his eyes I knew I cannot wait any more time. I took the children and I rushed to the hospital. From now on the events were running. Expansion of the pupil, and then came the diagnosis.
Ultrasound scan, prescription to Budapest, eye-clinic in the Maria street to Dr. Erika Maka , arranging the journey, as the other day we had to go. We had to arrive on the other day until half past seven with an empty stomach because of the narcosis, which is not an easy thing with a baby who is sucking… We got there by an ambulance (great thanks for the OMSZ and Zoltán Fogarasi ambulance officer, who arranged the ambulance for us) and we were put on very kindly. We got pyjama) pink and long sleeved in 38 grades) and he got 4 times every ten minutes some eye drops so that his pupil wide enough is. Then we got into the operation room. The most difficult seconds of my life were the ones when I had to give my little baby to a stranger.

I felt butterflies in my stomach, which pushed even my ribs. My heart was as gripped by a hand. My husband started to cry because of being not able to do anything. Time was going very slow, after ten minutes I got back my little baby. He was crying a bit, sometimes more. This was understandable because it was already 11 o’clock and he ate at about 4 in the morning last time. But because of the narcosis it was still not possible. When he fell asleep he had to be taken to ultra sound scan. My husband took him there, as I was not able to do. I have not slept and eaten literally for two days. At the end of this I could give him milk, so he calmed down. And then I had to go to the doctor.

 

Up to this point there was a hope, perhaps it is no the same, perhaps the doctors diagnosed something wrong, but not. We had to face the relentless truth. Retinoblastoma. We could get eased as my husband also could grow up with one eye (his other eye was removed, when he was 2,5 years old.) But my son has tumors in both eyes, altogether 5. The doctor drew up the plan. On Monday we go to the hospital for children in the Tűzoltó street,, Tuesday MRI, and then chemotherapy. She does not know what and how much he has to get, this will be decided by the oncologist. It depends on the fact if there are any transmissions in the brain. This is a very aggressive and quick tumor. So we started the race with the time for his life. Now we are at home for the weekend to think the things over. I gathered a lot of information. For example that it is a very rare disease, yearly 4-5 children get it in Hungary so there is no professional protocol for its therapy, and the instruments are not developed for that. Now we are negotiating with the eye clinics in Essen and we try to get into connection with an eye specialist- oncologist from the Switzerland, to start the healing of our little son.

 

Till then he takes chemotherapy with all its suffers, to win time and stop growing the tumor. We need much patience, insistence, positive approach, and more money. The situation is more difficult, because my husband is a public cervant, and from his little money there is 50% off, first because he took guarantee for a friend’s credit and then we could not pay our own credit, so we live in a rented house with the four children, and we get 40-50 thousand Forints plus child care money and mother’s leave.

 

We need help! Yours too, my dear reader! If you can, please help! Not us but to our little son! He has to live, He has not lived yet! In the meantime my thoughts are wandering…. We even us? Why even him? It is the worst in the morning, we hope, it is only a nightmare and we get up and everything is all right. But we get up and we have the same situation. And there is this monster, with which this little baby has to struggle.

 

I sat today behind the house into the garden and I told him, look, there are the trees. This here is the tomato and that is the kohlrabi. I do not know, if he will be able to see when the leaves fall from the trees. Or if he is able see them when they get again green color. I do not know how we will manage all that. If he ever can see anything in the future. If he can grow up, when we are over all these things, can he dream about the time, when he could see. It is terrible even to write it down. But we do not know what we have to face!

Please help us to get into Germany and specialists to be able to save his little life and perhaps his sight!

Our bank account: Unicredit Bank 10918001-00000031-22220000

International bank Account: Iban: hu32 10918001-00000031-22220000

SWIFT or BIC code: BACXHUHB

Account holder: Enikő Pintér

PayPal: enikopinter35@freemail.hu

We also would appreciate: baby and children wear, articles for baby care, building material, fuel, and many shares.

Thank you for reading our little story, I promise, I will write about our way!

Thanks for everybody who stays with us, and support us psychically, and thanks for being with us to Dore and Viri. Thank you dear editor of this blog, I could not have done it on my own!

2 thoughts on “English

  1. Itt hozzaferhetsz a rakkal kapcsolatos eddigi kutatasaimhoz: https://www.facebook.com/SzilardsIndependentCancerResearch

    En nagy dozisu C vitamint adnak neki intravenasan. Nem tudom mit eszik, anyatejet vagy tapszert. Barmejiket is eszi, lecserelnem olyanra, amiben egyaltalan nincs semmilyen cukor vagy glukoz, ha van tisztan novenyi alternativ valtozat mindenkeppen arra. Az orvosok konnyen megolhetik a jol bevalt modszereikkel, az altalam javasoltaknak viszont nincs karos mellekhatasa. Meg egy figyelmeztetes, ha megfogadod a tanacsaim es a daganat zsugorodni kezd, az orvosok meg nkabb eroltetik majd a mutett, mert ugy kevesebb a kockazat. Akkor van ideje elmagyarazni nekik, hogy inkabb toltsek az idejuket az interneten utananezve mas lehetosegeknek a Google on (Ha nem tudjak hogyan barmejiket megtanitom fejenkent 10000$-ert keresot hasznalni). A gyulekezetunkben tavaj lett aldozata az egyik testverno a joszandeku, operaljuk ki most mert kissebb, aztan “kezeljuk” mergekkel, hogy jobban legyen eljarasuknak. Ha barmilyen tovabbi kerdesed van szivesen valaszolok.

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