Unique stories

Florian from Austria

Florian’s story actually began in the spring of 2001, when he was 1.5 years old and started to squint.
It was a slight squint.
We didn’t think it was anything special and were of the opinion that the lateral eye muscles were just too weak for straight vision.
Even 2 conjunctivitis did not make us suspicious.
The squinting got worse and worse and we went to the ophthalmologist.
As Florian was otherwise very lively and climbed around everywhere, even building towers, we weren’t the least bit worried.

At the ophthalmologist’s, we learned that he was already blind in one eye and that the other eye was already suffering from so-called visual impairment.
The doctor was unable to determine the cause of his blindness as he did not have the appropriate instruments.
We were referred to a hospital.
After a skull CD and a look at the retina of the eyes, a bilateral retinoblastoma was diagnosed.
We were then immediately transferred to Graz (at our own request!).
Further examinations were carried out there and the suspicion of RB was confirmed.
At this time, Florian had just turned 2 years old.

The therapy was discussed and was as follows: Enucleation of the left eye (which was already blind and in which there were 4 tumors, one of which was 1 cm. The retina was too ¾ detached so Florian couldn’t see anything in this eye) and the preservation of the right eye where there were only 2 tumors.It was a big shock for us that one eye was to be cut out. We wanted to try to preserve the left eye, as no metastases were detectable in the MRI, and decided in agreement with the doctors to start chemotherapy first and then, depending on the findings, to decide whether it should be enucleated after all or whether it could still be preserved. The chances of the left eye ever seeing anything again were very slim. Nobody knew how long it had already lost its sight.No matter – we wanted to try in any case.

After the first chemotherapy, the 1 cm tumor had shrunk to 6 mm! Chemotherapy was also used and the other tumors also began to shrink. Florian tolerated the chemotherapy very well.

When the time came to use the ruthenium applicator, it was the worst for us. Florian suffered from severe sensitivity to light and very severe pain. He was given Dipidolor. A strong opiate, without which it was not possible to have a reasonably acceptable daily routine. During the time the Ruthenium was being used, we were constantly on the oncology ward. Our eyes had to be dripped three times a day, which did not contribute to the general amusement of our child. It was terrible!After the ruthenium treatment, chemotherapy was given again and our child now looked more than just pitiful – a heap of misery.

During the time Florian was receiving chemo, he only played outside wearing a face mask!During the chemotherapy, we pretty much isolated ourselves from the outside world. There were no visits from friends and our families – grandpas and grannies – were rarely our guests. We only went for walks wearing face masks. We also avoided stores and restaurants. Our older child often lived with his grandparents, as he was still in kindergarten at the time and the risk of infection was too great for Florian.But now came the most difficult part of the whole thing: Now the right eye (the better eye) had to be picked off in order to be able to put the left eye, which had already gone blind, back into operation at all. (We were told that in small children the eye with poorer vision is automatically switched off by the brain and the child then only sees with the so-called better eye). That was now our task – the eye had to learn to see again.We applied for early vision support and after a few weeks we had organized an excellent early vision support for Florian.

After great initial difficulties, we managed to get his eye to see again with perseverance.
Florian is riding his bike again (with an occluded eye), climbing trees, skiing, walking on ice and so on.

To this day, we occlude the right eye for at least 4 hours and Florian can see quite well with it. So far, he has not needed glasses either.Then came the next shock: we had to go to human genetics, where we were told that our child has a genetic defect, but we do not. (This was found out by a blood test!). Not a single case of RB was known in our families either! Even our older child does not have a defect. We were also informed of all the necessary precautions.We still have to attend follow-up examinations and hope that Florian will remain free of recurrence. The fear that a recurrence will ruin everything we have achieved so far is still there. Also that my child’s genetic defect will lead to further cancers.The reason why our child still has both eyes today is that we are lucky and have an excellent team of doctors in Graz, and I would like to thank Prof. Urban (oncology) and Prof. Langmann (eye clinic) and their entire team of doctors, who really care about the well-being of sick children and do everything in their power to help those of us affected.

I hope that our story will encourage other sufferers and show that you are not alone with such an illness.

Florian from Austria

Back