Unique stories
Anna and her magic eye – A mother talks about her daughter’s RB disease.
“Hey, watch out with that stick! Otherwise you’ll break my healthy eye and then I won’t SEE ANYTHING”, it yells loudly across the kindergarten playground.
A sentence that makes all adults in the vicinity pause for a moment.
Because the originator of the phrase is Anna, 3 years old and a #rbsurvivor in hashtags.
Everyone in her nursery knows her story, knows the risks and always pays a little more attention to Anna.
As surprising and difficult as her path was, she is impetuous and carefree today.
Because she doesn’t see that she is different.
Anna is a fairy with a magic eye and thinks she is beautiful.
“Because mom, I like pink. Everyone has blue and brown eyes. That’s why I don’t want a prosthesis.”
This nature and her irrepressible energy are what have driven us over the last few months.
Everything happened very quickly after the diagnosis
Our daughter was diagnosed with unilateral retinoblastoma in July 2019, shortly after her third birthday.
And like all parents of affected children, I will never forget the moment when it became clear what was happening to her, what was in store for us and, above all, what was in store for her.
One moment I was still sitting in the waiting room for a check-up and going through the next appointments in my head, the next moment we were speeding towards the ophthalmologist, who transferred us to the Virchow Clinic in Berlin within a few hours.
Needless to say, the appointments we had thought through beforehand never took place.
It quickly became clear that only enucleation could help her, as the tumor had already taken up a large part of her left eye.
And so there were less than three weeks between the diagnosis and her first operation.
When time gets tough
In retrospect, it was a short time, but at the time it dragged on like chewing gum.
After Anna’s first MRI, it was not clear whether the optic nerve was already affected and whether chemotherapy would be necessary beforehand.
The doctors in Berlin were unsure and consulted with the doctors in Essen.
It was a process that took time, but it gave us a good feeling.
We didn’t have to question any diagnoses because the doctors did it for us and got another opinion.
This was a carefree time for Anna, as she was still able to go to nursery school.
Even though
we and the doctors were ready to start every day – regardless of the treatment.
Elli also moved in with us during this time.
She was quickly christened Lilly due to a namesake in the family and was now Anna’s best friend and companion, as they both had the same thing.
After a few days, everyone agreed that the chemotherapy was not necessary and that surgery could be performed immediately.
With this decision, we finally had the feeling that we could do something.
Finally something was happening, finally “this thing” was coming out of our daughter. Because our initial ignorance on the subject also fueled our fears. Would the tumor grow faster while we were waiting? What if it has spread? Questions that the doctors in Berlin always answered patiently (and with “no”).
New people, new places
Off to the clinic
For Anna, this time of waiting and the many examinations was unfamiliar but exciting.
She got to know new people, took the doctors to her heart and was always with us.
So there was hardly any reason for her to worry and so she and Lilly went to the operating theater quite quickly. After a few hours, both were treated – one for real, the other in play.
My biggest worry was complications.
But: everything went well, as planned.
Could there still be complications later?
No, there had never been anything like that before…
We were discharged after two days.
Now it was time to wait again.
Something I have cursed ever since.
This time we waited for the pathology results.
Does Anna need preventative chemotherapy?
This powerlessness in between and the new situation was strange for the family.
Anna didn’t really understand what was happening to her.
The operation was hardly a turning point for her because, as we learned early on, she could no longer see much in her left eye.
But how were we supposed to explain chemo and all its side effects to her?
Her older sister understood it better, but understandably couldn’t understand it the way adults might.
“What about Anna? She has cancer, but it’ll be gone soon,” she told a familiar mom in the playground.
Now it was suddenly us who had to build people up.
And we ourselves didn’t know what would happen next.
Between relief and big worries in a few days
On 26.8.
we finally got the call: no more chemo.
This news noticeably lifted a huge weight off our shoulders.
One that doubled in weight a few days later.
Within a few hours, Anna’s operated eye swelled up.
The inflammation was enthroned on her face like a golf ball, and at the same time it was also affecting her mood.
We got to know the emergency room at night, but nobody could really explain it.
Rest and antibiotics were the instructions.
But that didn’t help.
We were back a few hours later because we were told to raise the alarm if she had a fever.
We did and were admitted as inpatients.
The cause?
No one could explain it, because the doctors said it had never happened before.
So while a team of ophthalmologists, oncologists, infectiologists and orthopaedists were looking for a solution, we were with Anna.
She was closely monitored and given a sophisticated antibiotic treatment, which quickly made the inflammation disappear.
That was good, because Anna was soon fit and wild again.
But nobody could answer where the inflammation came from and, above all, whether it could come back.
After two weeks, we were discharged with oral medication.
Finally a sigh of relief?
Almost, because after another two weeks the inflammation came back despite the medication and also caused the previously healthy eye to swell up.
The safe way with a lot of time … and above all imagination
Our safest option now was another operation. The plastic seal was to be removed and replaced with an implant made from the patient’s own tissue.
The doctors hoped that this would finally provide certainty, as it was not clear why the
inflammation kept coming back.
After a few days of inpatient treatment, Anna was finally operated on.
Once again she was taken into the operating room with Lilly, and once again they both came out of the surgery with the same treatment.
Hopefully for the last time this time.
We spent a total of four weeks in hospital.
A damn long time, whether for parents or small children.
Again, it was Anna’s light-heartedness and imagination that got us through this time and her second operation together.
She was soon appointed assistant doctor by the doctors on the ward, and as lengthy and unfamiliar as the entire treatment was for everyone, it never took away Anna’s confidence.
She didn’t like many of the examinations and it took her a while to bravely cope with the frequent blood tests to clarify inflammation levels and the like, but she always had great trust in the people around her.
So much so that shortly after her long-awaited discharge, she shouted in rage during discussions about tidying up at home:
“Mum, I’m moving in with Dr. M. I never have to tidy up with him.”
But I wouldn’t be so sure about that.