The story of Verča

In the fall of 2004, when I started first grade, my left eyelid swelled up, "thanks" to which my life changed forever.

Because of my eye, my mother and I visited the eye doctor at the clinic, who didn't know what to do with me and sent us to the children's hospital. After unsuccessful attempts with the compresses, the doctor sent us for X-rays and internal medicine and then it was on.

I still remember my mother picking me up at school and the teacher saying to me, "Verunka, pack your things, your mother is waiting for you downstairs, you are going to the hospital." I don't remember much from that time, it was quite a few years ago too. I was diagnosed with Acute Myeloblastic Leukaemia and ended up in the clinic of paediatric oncology and haematology in Brno. I know from my mom that I got the central line right away and within a few days they started chemotherapy.

Apparently the blasts ("purple hairs" as we used to call them) started forming behind my eyes and so in late January/February 2005 I had surgery to take samples from behind my eyes to see if they were still forming. No one admitted it at the time (and I don't blame anyone, I think there are, were and will be more important things) but apparently they damaged something at the time that helped lift my left eyelid and that's why I can't lift it anymore. However, thanks to this we found out that the cells are not malignant. But just to be sure, I still had radiation (which probably took its toll on my eyelid too) and other related tests. After a challenging series of lumbals, things finally started to get better, although I did have complications, this time in the form of some sort of parvovirus (which seemed to have killed off the rest of my immune system). We were finally able to go on a well-deserved vacation and enjoy the summer. I started school again in September, this time in second grade. But it wasn't a successful start this time either.

In the autumn, a follow-up bone marrow sample was taken and unfortunately a relapse was detected. And basically, it started all over again. Immediately, further treatment was started and at the same time I was included in the Bone Marrow Donor Registry. My good fortune was that a donor was found really quickly and I underwent a bone marrow transplant on March 1, 2006 in Motol, Prague. The transplant was successful, but there were a number of minor or major complications. It started with AIHOU (autoimmune disease of red blood cells), followed by epileptic seizures, fungal pneumonia or aseptic meningitis etc. But despite all this and despite my not-so-well-functioning immune system, I'm still here and enjoying life. Yes, I have "certain" limitations. I'm often tired, almost always breathless (not to mention coughing), my immune system needs to be "recharged" and not to mention my eye makes me squint (so if I ever bump into you, please don't be mad at me 😅).

There have been, there are and there will be problems, but the important thing is not to look for reasons why it cannot be done, but to go for your goal. And it will work.

Verča