Unique stories

“We’re not in port yet” – thoughts of a grandfather

When the news came, I was stunned.
Cancer.
Eye cancer.
My granddaughter.
Just over four months old!
Diagnosis: Retinoblastoma.
Retino-what??? As a student, I worked in a hospital on the side for a few semesters and picked up a lot there.
Since then, I’ve been going through life with a “dangerous” quarter of medical knowledge.
I’ve heard and read a lot about diseases, like everyone else, but I’d never heard the word retinoblastoma before that day.
Relatives, friends, acquaintances, colleagues, no one had ever heard the word – let alone the fact that these tumors only occur in small children, often develop dramatically quickly and are so difficult to detect.

How do you describe a moment when everything is suddenly different? Everyone probably has their own images for it. All feelings in distress, you could say here on the coast. Hasty surfing on the Internet set in, and with most of what my wife Martina and I found there, the fear for the future of little Isabel, the first child of my son Ole and his wife Scarlet, grew. Gloomy scenarios arose in our minds. Whether we wanted to or not, we imagined what the diagnosis could mean for Isabel. Ultimately, blindness or even death. For many days and weeks, this news pushed everything else into the background. No topic of conversation was more important to my wife and me. We often wondered what might be going on in the young parents’ minds, how we would feel in their role, what thoughts we would have about the future as Isabel’s parents. After all, grandparents are usually more spectators, helpers at best and not responsible parents. It was the powerlessness that was almost unbearable for us. And we asked ourselves the question that should never be asked in a situation like this: Why us, why Isabel? Our thoughts came up against walls. How do I behave as a father, father-in-law and grandfather? What words do I find? “It won’t be that bad? Don’t worry so much right away? It’ll be okay somehow?” None of this would help them, that was clear. What were they supposed to do with it? I decided to free myself from being held hostage by the diagnosis. Together, we quickly found a pragmatic way of dealing with the situation and the words we needed to do so. There was nothing to gloss over. One consolation was the early diagnosis. The Hamburg doctor, Dr. Nadine Hess from the Hess&Lingens practice, had looked so deeply into Isabel’s eyes during a routine examination that she discovered the small tumors. You should weigh them – “our guardian angel”, as Isabel’s parents say – in gold, and if we had that much, we certainly would. Dr. Hess has given Isabel an invaluable head start in the race against eye cancer, which in some children uses almost every day to continue its work of destruction. I would like to take this opportunity to thank her once again for this.

Realism and the courage to look to the future, whatever it may look like for Isabel, are the head tools that we are all still using today.
We have learned that these tools can also rekindle optimism and hope after the doom and gloom of the first few hours.
I experienced overwhelming proof of this at the RB meeting of the Children’s Eye Cancer Foundation in Düsseldorf.
Grandpa Eckhard was allowed to come along.
Suddenly I found myself as part of a community of destiny, as if I had been part of it forever.
I was surprised, inspired and, yes, comforted by the naturalness with which children who had lost part of their sight dealt with their
everyday lives and celebrated a happy get-together with each other and their parents and grandparents.
It still moves me.
Never before had I experienced such a large number of people approaching each other and spending time together with almost tangible empathy and great mutual respect.
I asked myself there whether it really always takes a bad shared experience for people to realize what is really important.
And how many unimportant things we often worry about.

The question “Why Isabel?”, as big as it was helpless at the beginning, still nags at me today.
But it has faded – and even more so after the meeting in Düsseldorf.
It was clear from the start that there was no answer to the question, but I would still have liked to have had one.
Now I don’t need one because I learned more in the first year of my granddaughter’s life than in many of my own.
She has long since become a “completely normal” grandchild again, like all the little ones I saw in Düsseldorf.
And they weren’t the only ones who helped me, the grandfather, who experienced everything from the second row.
They were also the ones who encouraged me, some of whom have been living with a visual impairment for many years.
I had long conversations with Thommy from Kiel.
After just a few minutes, he was like a good friend telling a “newbie” like me about his experiences.
About how it works to lead a completely normal life with only one eye.
Balm for someone who is still teetering a little between gratitude for and trepidation about what they have achieved.
It’s good to see that someone can be like Thommy as an adult despite this illness: thinking positively, with both feet firmly on the ground and at peace with everything.
Hello Thommy!
Thanks to the treatment options at Essen Hospital, which are probably unique in the world, and the huge amount of luck Isabel has had so far, she will in all likelihood keep one eye that is almost 100% healthy and one with limited vision.
Not all children have been as lucky as her.
But I also know that her journey is not over yet, even if we can now see land on the horizon.

“We did a great job on that trip,” I once said many years ago to my old skipper friend, with whom I often sailed on the Baltic Sea.
We had just passed Kiel Lighthouse on his sailing yacht.
His response to my positive conclusion came in six dry words: “We’re not in port yet.”
That doesn’t just apply to us today, to Isabel and her family.
So I wish everyone who is still on their way a happy journey.

“We’re not in port yet” – thoughts of a grandfather

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