Kids with cancer encourage each other

 

By Marcsi Benkö

I was in kindergarten when I got my diagnosis. I didn’t even really understand what cancer was, so it didn’t scare me. But sadly, I was in a lot of pain, which the doctors had a hard time easing. As the days went by, I kept hearing words that I didn’t understand: CT, MRI, chemotherapy, radiation, cystomanometry – they all sounded like strange and scary things. I didn’t understand what was happening to me, why I was being poked with needles or put into strange machines, and it made me more and more anxious.

Feeling alone in the strange world of hospital…

 I spent a lot of time in the hospital, and no one could tell me for sure when I’d get to go home, when the pain would stop, or when I could finally go back to my friends in kindergarten. Everyone around me was kind, but no one could really explain what to expect. I was pricked with needles every day, held down, and I didn’t trust anyone. The nurses and doctors wanted to help, but it was hard to believe them. I felt like I was alone in a strange world where everyone else understood what was happening to me better than I did.

...but other kids in the ward helped

Then I met some kids who had already gone through treatments that I still had ahead of me. They told me things no one else had said before. For example, that the MRI scan doesn’t hurt, but the machine is very noisy, and you must lie still for a long time. Or, that the CT scan is like lying in a tunnel, and I didn’t need to be scared because it was over quickly. Now, I often sleep through the whole thing and don’t even wake up when they give me the contrast material. My hospital friends helped me understand what would happen, and I became much calmer.

The Recovering Together Association comes into being

After my treatment, in 2016, my doctor, my mom, and a small group of caring people started an organization called Érintettek Egyesület. This means something like: “Recovering Together Association” in Hungarian. The members include adults who recovered, parents, professionals like doctors, nurses, psychologists, and chaplains.

Us kids who went through treatments help as volunteers, too. We share our ideas and take part in events we organize. Sometimes we help kids currently in treatment by face-painting, glitter tattoos, or just encouraging words.

Unfortunately, even after my treatments, I had a lot of health problems related to my illness. I had to go through even stranger and more uncomfortable tests, things my mom had never even heard of.

How could I help other kids? – The idea of video messages is born

That’s how the idea came about. If it helped me to hear other kids talk about what they went through, maybe I could help others too. What if we kids made videos for each other? My mom wrote to a lot of hospitals to get permission for filming, which took the longest – more than a year. A very kind documentary filmmaker named János Hollós offered to make the films for free.

My friend Berci for example explains radiation therapy, and my friend Kriszti talks about MRI and CT scans. We were treated together. In Hungary, we had chemo in a big ward with 7 beds. Our parents couldn’t stay with us at night, so the older kids took care of the younger ones and called the nurses if there was a problem. Sadly, I lost some of those friends who watched over me. I even wore their clothes for a long time because they gave me their nicest things. We spent so much time together, even going on vacation together.

But back to the videos

The filming was exciting. Kriszti talked about the MRI scan, saying that the machine is a little loud, but it doesn’t hurt. All you have to do is stay still, and if you close your eyes, you can imagine you’re in another world. I did that too, and it made things a lot easier. Kriszti has recovered, and if she’s not sleeping or at school, she spends her time in the stables with the horses. She has won many show jumping competitions.

Berci and I played chess together, we even went to the Winners' Cup in Moscow. Berci talked about radiation therapy. He’s been through a lot, too, but he was always smiling and brave. His video is also really important because you have to go for radiation many times, and it sounds scary at first. But Berci explained that even though it’s strange and a bit of a hassle and you have to be disciplined, there’s nothing to be afraid of because it doesn’t hurt.

Volunteers helped us make the videos, and we’re very grateful for that. During filming, there was always someone to help us, whether with technical things or just making it easier to talk about what we went through. I hope we can help as many kids as possible to not be so afraid of these tests and treatments. After all, we kids know best how hard it is to go through this, and if we can’t avoid it, at least we can be prepared and not have to go through this hard journey alone.

You can watch the videos (in Hungarian) here!

Photos provided by Érintettek Association for publication by SPAGN;  Uli Deck