Ina

1991: the year that will remain unforgotten for me, my family and especially my parents…. I, Ina, now 38 years old, was 9 at the time. I went to elementary school and was probably an ordinary child like every girl of that age, I loved pink, everything that glitters and especially horses. My sister, who was 3 years younger, had severe astigmatism in both eyes and therefore had to go to the ophthalmologist regularly. So on this one spring day, my parents and I went to the ophthalmologist for our routine check-up, as we had done many times before.

But this time everything was different than usual.
My parents were suddenly very strange, talking about “some kind of shadow on the retina…must be examined immediately as an emergency at Essen University Hospital” and the ophthalmologist was suddenly no longer as cheerful and joking as usual.
He peppered me with strange questions: “Do you see any differently? Do you have pain when you see?”
I had to think, should I get glasses too?
I could always see through a curtain on the right, black dots every now and then…but that was normal…I’ve always had that!

The next day we drove straight to Essen to the university hospital, I felt the whole thing was a great adventure… But on that day the diagnosis was made that would shape all of our lives forever… “Unilateral retinoblastoma”, I remember it like yesterday, after a few examinations I was sitting at the painting table in the children’s eye ward, the doctors wanted to talk to my parents alone…Then the door of the examination room opened, I have never seen my parents so incredibly sad and desperate again in my life…They took me in their arms and explained to me that I had cancer and that my right eye would have to be removed. Until then, however, I still didn’t understand why my parents were so sad – I still had one eye!

I had my operation the following week and I remember it as a wonderful time! Mom was there for me all day, no school, I didn’t even have to do homework. I had other children to play with, even though they were all much younger than me, and I was allowed to watch TV in bed! I got presents and letters from my school friends and everything revolved around me! I didn’t hear about the fears and reproaches my parents had! I know that for a long time my parents kept asking themselves whether they had done the right thing back then…everything happened so quickly, less than a week after the diagnosis and enucleation. Should they have sought another opinion? Should the eye have been preserved and irradiated first? I fully support my parents’ decision, the eye had to come out! Immediately! And I’m not just saying that as a patient, but also as a mother and nurse!

The positive experiences I had in Essen made me want to become a nurse!
I wanted to pass on the good feeling I always had during this difficult time!
And so I still work in an intensive care unit in Aachen today and try to give people a positive outlook during what is perhaps the most difficult time in their lives.
I have had to experience for myself in recent years what the diagnosis of retinoblastoma does to you as a relative…the time after my enucleation went well, we went to the ophthalmologist every six months for check-ups, the children at elementary school accepted me as I was, they knew me.
I was treated with kid gloves by the teachers at first, but the grace period quickly changed when I moved to grammar school.
I went to an all-girls school, probably with the ulterior motive of not being teased by boys there.
But even at grammar school, I never had any problems with my appearance.
In puberty, I went through a phase where I found it difficult to like myself.
But who has it easy in puberty?
In all the photos of me, the glass eye was painted black with sharpie, I couldn’t stand this squinting in the photos.
I admit that I’m still not a big fan of self-portraits.
There were one or two comments in discos that weren’t nice, but mostly from girls.
I got my driver’s license like any other 18-year-old.
I received the odd rebuff from boys who claimed they couldn’t cope with my disability, superficial people, today I know what to make of that, but I can advise you, you don’t need people like that!

To all the young girls out there, I can only say: you look beautiful the way you are!
And anyone who doesn’t see that has no business being on your side!
I met my husband over the internet back then, he models and I just thought “a girl like me will never get him!” and what can I tell you?
We’ve been happily married for 10 years and my disability has never been a problem!
On the contrary, “everyone has one with two eyes, you’re different, you’re special!” .
And this is coming from a man who could have the most beautiful women in his industry, but he chose me… enchanted by a magic eye 😉

We now have 2 daughters (8 and 4 years old), although I had a human genetic examination at the time, it could never be ruled out 100% that my retinoblastoma was not hereditary!
So we had the first retinoscopy for our little girl on the day she was born.
Everything was fine, she is healthy, from now on we had to go to the university hospital in Essen every 3 months and have the retinoscopy performed under general anesthesia.
And what can I tell you?
It’s better to be a patient than a relative!
I cried and trembled so much at having to give up my little one and not knowing what would happen afterwards!
I wouldn’t wish this fear and powerlessness even on my worst enemy!
I have to admit, it’s easier to bear as an affected person.

After the examination, we decided to have these examinations carried out by my ophthalmologist in Aachen! He discovered the tumor in me back then and he will also discover it in my children, that was and still is my opinion. We have a tacit agreement that should he not be able to take a sufficient level of certainty, or should there be even the slightest suspicion, we will have the children examined again in Essen under general anesthesia. But our doctor knows what he is looking for and so far everything has been normal, I trust my lifesaver 100%. I can only advise all moms and dads, grandmas and grandpas, all relatives of small and large RB children, don’t worry, children are so much stronger than adults, all you can do in this hopeless situation is to be there for them, create their familiar environment if possible, treat them as you did before the illness! Then they will go their own way, realize their dreams and turn the head of a prince or princess with magic eyes, because anything is possible – even the impossible!

Ina
Encourager

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