Unique stories

Anny and Arian – Our luck was perfect.

Arian saw the light of day on 06.03.2022.
We could hardly believe our luck.
A beautiful son, finally the four of us.
Our happiness was perfect – and still is, just under slightly different circumstances.

Shortly after the birth, we noticed that Arian was squinting.
However, the midwives and also the pediatrician at the U2 assured us that the little babies first have to arrive and that it is completely normal for babies to squint.

But somehow my gut feeling always told me that something was wrong.
I can’t describe it, but it was just my mommy instinct.
Nevertheless, you trust the doctors and midwives, so I pushed my worries aside and just enjoyed my happiness.

Arriving home, intoxicated by our happiness at finally being four.
Mila is a proud big sister and everything seemed perfect, but my husband often noticed a bright glow in her pupil.
I just said to him “Oh, that’s probably because he’s still so small and his eyes still need time” – that’s how it was explained to me at the maternity clinic.

On 20.04.22 was then the regular U3 at the pediatrician.
Arian was fine, healthy and perfectly developed – until the Brückner test.
The pupil showed hardly any reaction and we were referred to the ophthalmologist and from then on my mommy instinct that something was wrong caught up with me again.

On Thursday, 05.05.22 we had our appointment with the ophthalmologist.
He had his eyes checked and his pupils were dilated: suspected cataracts!
However, the doctor behaved strangely and even made us an appointment in person in another room for a further examination at the Asklepios Klinik Heidberg.
We got the appointment relatively quickly.
We were supposed to be at the Asklepios Clinic on Monday, 09.05.22.

But there was still a whole weekend in between. My husband googled “white glow pupil” at home and we did the flash test. Panic, fear and worry overwhelmed us. All the websites pointed to a diagnosis of retinoblastoma. We didn’t want to believe it and hoped for something else. I took countless flash photos and hoped it was just a coincidence, but each time his pupil lit up white. It was terrible!

Arian was diagnosed with cancer when he was 9 weeks old.
Arian was diagnosed with retinoblastoma at the Asklepios Klinik Heidberg.
The world stood still for me.
The doctor did an ultrasound on his diseased eye and said “Your son has a tumor and it is unusually large for his age. You have to go to the university hospital in Essen.” I will never forget that sentence.
I broke down, cried and no longer understood the world.
It’s all just a bad dream.

My husband and I left the clinic and from one second to the next our lives were no longer what they used to be. We didn’t get an appointment at Essen University Hospital until a week later. This uncertainty, not knowing whether there was a cure and what exactly was going on, ate me up inside.

The week passed like years. We felt so empty inside and didn’t know what to do. And yes, we also talked about what would happen if our little son didn’t make it. I talked a lot with my best friend and my mom that week. It helped me a lot to exchange ideas and just talk. I would have liked to have had contact with other parents who understood, helped, encouraged and talked to me. My husband, on the other hand, closed himself off completely and wouldn’t let anyone get close to him.

On Monday, 16.05.22, I finally went to Essen University Hospital.
Here we had one examination after another.
Our feelings, fears and worries ran high.
Then on Tuesday came the shock: our little Arian has cancer in both eyes!
The left eye is so badly affected that he has already lost almost all his sight.
On the right eye, there were 2 small tumors that could be lasered or treated with cryotherapy and did not impair his vision.

After long discussions with the wonderful doctors at the university hospital and also after the MRI findings, we decided to have his left eye removed. The operation took place in the same week, on Friday. The week was very demanding for us: Conversations, tears, examinations, anger, hope, fear and despair. Nevertheless, we are grateful that our little son can lead a completely normal life without major restrictions and that he is cured. However, the ENU was followed by further agonizing days, as the question of whether he would still need chemotherapy remained unanswered for the first time.

But then on 27.05.22 came the redemptive phone call.
No infiltrations of the choroid or optic nerve had been discovered.
So he doesn’t need chemotherapy.
We could hardly believe our luck and finally, after such a long time, tears of joy followed.
Our son had to go through such a terrible thing, luckily he was spared that.

Even though we have already achieved a lot, we still have a long way to go.
Our son has lost his eye and is still fighting cancer in the other eye.
Constant examinations, prostheses have to be fitted and doctors’ appointments are coming up.
I often ask myself whether I can manage it all, but then I have to remind myself that I have no other choice.
I have to!

Even though a few weeks have now passed since the diagnosis, I’ll be honest, I haven’t and don’t want to process it at the moment.
I have an incredible amount to do and I’m grateful for that.
Because I’m afraid of the moment when I really start to realize it and my body forces me to deal with this incredibly hard blow.

I share my story and my family life openly and honestly on Instagram to encourage other parents.
I want to find and get to know other parents with the same diagnosis or other strokes of fate so that we can build each other up and support each other.

Anny and Arian – Our luck was perfect.

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