Unique stories
Being strong means getting up again and again – Mara’s story
Mara has a bilateral retinoblastoma – a malignant tumor in both eyes.
This was diagnosed by the pediatrician at the age of 4 months during the U4 examination.
Claudia Lerner, Mara’s mother, gave a moving interview to the KinderAugenKrebsStiftung.
We thank her very much for this.
KAKS: Dear Lerner family, what exactly does your daughter have and when and how did you find out about it?
The Lerner family: Until then, we were completely unaware of this disease, even the pediatrician had only read about it in the literature, but he did the right thing straight away.
We are still incredibly grateful to him to this day.
After several examinations in various clinics, the diagnosis was clear and a world collapsed for us…
KAKS: What was it like during Mara’s treatment?
How did you manage it all as a family?
The Lerner family: suddenly everything changes and nothing is as it was before.
All plans for the future, all dreams are suddenly blown away.
Nothing seems to make sense anymore and everything else becomes unimportant…
And again and again the question: Why Mara?
One of the doctors said to us aptly: You were just unlucky!
But at some point you pick yourself up and start fighting again.
Precisely because we saw and felt how Mara coped with it all, fought for herself and never gave up.
The right eye, in which the tumor was already very advanced, was removed immediately and Mara now has a glass eye there.
In order to save the left eye, chemotherapy was started after various examinations.
However, this was stopped after three of six blocks as new tumors had formed.
This was followed by radiation therapy – 5 weeks daily under anaesthetic, as an inpatient at Essen University Hospital.
This therapy seemed to have worked well at first.
However, at the second check-up, the doctors recognized a recurrence.
Once again, it pulled the rug out from under our feet, as we were actually sure that we had beaten the cancer after the radiotherapy.
At that moment, we had to deal with the thought that it was possible to lose the second eye as well.
The doctors in Essen then suggested intra-arterial chemotherapy (IAC).
Here, the chemotherapy drug melphalan is administered directly into the eye through a catheter.
This therapy was our last chance to save Mara’s sight.
The operation was successfully performed in September 2014.
As there was bleeding and fluid build-up, we drove the 600 km to Essen for weekly check-ups.
After weeks of anxiety, things slowly started to improve again.
The tumor has been quiet since then and recently the bleeding and fluid retention have also completely subsided.
That certainly wasn’t easy for us as a family, but it brought us even closer together.
If one of us ran out of strength, the other could pick him up.
Mara herself showed us again and again how strong she is and was able to infect us with it.
Supporting and encouraging each other was hugely important.
We have our family and friends to thank for the fact that we have always managed to pick ourselves up.
It’s incredible and impressive how much support we’ve received, and continue to receive.
Many encouraging conversations, visits during our time in Essen, phone calls, letters and hugs have ultimately strengthened us time and time again.
And we would like to thank you from the bottom of our hearts.
We couldn’t have done it without you!
We also owe a lot to Thomas’ employer and colleagues, who have always made it possible for the three of us to travel to Essen and still can.
This was not a matter of course for us.
KAKS: What experiences have you had during this time?
What would you like to say to parents who have just been diagnosed?
What has helped you the most?
The Lerner family: As simple as it may sound, but despite all the complications, a touch of optimism and hope should never be lost.
It also helped us to look fear in the eye and imagine what it would be like if Mara went blind.
At first this is a terrible thought, but then we realized that we would also learn to deal with it.
It was also impressive to meet and talk to the KinderAugenKrebsStiftung’s “encourager” Martin Park at the retinoblastoma meeting, who told us what he has achieved in his life despite his blindness.
The discussions and support from the KinderAugenKrebsStiftung and the contact with other affected parents we met during our time in Essen also helped us.
These were wonderful experiences for us because, as we all know, “shared suffering is half the suffering”.
We are now also convinced that homeopathy can support conventional medicine.
We have had very good experiences with it and continue to benefit from it.
KAKS: How is Mara, how are you, today?
The Lerner family: We now define the words “problem” and “worry” differently.
We’ve also become very careful about saying “…why should this happen to me or to us…” because we’ve realized that a stroke of fate like this can really affect anyone.
Family and friends are more important than ever and it was good for us to be honest about it in public.
We’ve now found some peace and quiet.
The peace and quiet is incredibly nice, but at the same time it also gives us a lot to think about.
We realize that we still need to process and come to terms with the past.
Hopefully the planned family cure will help us do this.
Mara is now 18 months old and an absolute ray of sunshine who knows exactly what she wants.
She has been receiving early encouragement from the local school for the visually impaired for almost a year now, which she really enjoys.
We observe her progress day by day and get great tips on how to train Mara’s vision.
She is developing in line with her age, but needs a little more time and security in certain situations.
In conclusion, we find one sentence very fitting for the past time and hope that it will also motivate other families to never give up: