Zorka was born in September 2004 as a perfectly healthy baby. The first couple of years of her life were spent without illnesses. She got over some minor colds, ate well, grew as expected.... until she became 3 and a half years old.
That is when she became irritable and had stomach-aches repeatedly. We went to our pediatrician a number of times who always reassured me: there is nothing wrong, maybe the beginning of a virus infection.. I was ridiculed as an overreacting mother who doesn't believe a doctor. But the pain didn't stop, quite the contrary, it became bigger and bigger, until on April 30 , 2008 she was sent home from the nursery. She just kept crying all afternoon, holding her belly around her bellybutton. That day I purposely waited until the local doctor's surgery closed and took her to the county hospital, hoping for a more thorough examination there. That is what happened, but despite the X-ray and ultrasound examinations the doctors couldn't see anything. Of course, they couldn't see anything, because something was covering everything inside. Something enormous. Finally a surgeon touched her stomach and said the word, that terrible word: tumour. In the middle of the night we were transported by an ambulance to Budapest to the surgery of Szent Janos Hospital. Nothing happened there, as examinations were necessary first, but it turned May 1 in the meantime- a Bank Holiday in Hungary, and the beginning of a 4-day long weekend- so we had to wait 4 days for any examinations to be carried out. On May 5 these were completed. During the 4 days in between Zorka was crying non-stop. While other kids were enjoying the spring weather at a funfair- typically held everywhere in Hungary on May 1- eating candy floss, running up and down with a balloon, and generally having fun.... Instead of this she just cried on and on, and kept repeating: " I can't take it, I can't bear it". Nothing seemed to help, the painkiller only gave a short hour of relief.
We were transmitted to another Pediatrics Hospital where she had CT, port insertion, biopsy- both with thick and thin needles-, bone marrow biopsy, you name it, she had them all.
We got terrible results. Diagnosis : Neuroblastoma. The tumour became 15cm big and completely filled the abdominal cavity and pressed all her inner organs. Inoperable. Transposal to bone marrow and lymph. Chance of survival 20%. Next step: oncology. The first chemotherapy started on May 14 2008. Then once again, a Bank Holiday: Pentecost, so we had to wait, wait... The pain became greater and greater. She just went on crying and saying: " I really can't take it anymore". But she did.
According to protocol in Hungary we started with 11 sessions of chemotherapy. One session meant 3-5 days of treatment. The first 7 sessions went down reasonably well, but after the last 4 there were terrible side effects. The nights she spent crying due to the unbearable pain. Now the pain wasn't caused by the tumour, but by intestinal inflammation-one of the side effects. I can't find the words to explain the feeling when I just had to sit there and wait for her pain to ease.. But she survived.
After a week pause the next step was stem-cell transplantation on December 3 2008. We moved into the hospital on November 25, in a half-steril, tiny "cell", a little room. Of course we had to be very cautious about the sterile environment, we couldn't leave the room, we weren't allowed to open the window, etc.. It was incredibly difficult. One visitor came only: Santa! Considering the circumstances, Zorka took to the treatment quite well, her bone marrow functions became optimal so we could leave the hospital on December 18. We had to be just as cautious at home, we wore a mask, I had to sterilize continuously, as the most insignificant bacteria could have caused a fatal problem. She had to have a special diet for 100 days.
We started going to to pre-radiotherapy examinations. The actual radiotherapy started at the end of March 2009. She had 22 sessions. Every day we had to drive to Budapest and get there before 9am so we didn't have to wait too much. Her whole stomach was treated, consequently she lost even the little appetite she had, therefore her blood test results became increasingly bad. But she still survived.
Next, between July 2009- January 2010 she had treatment in capsules, which is the "mildest" treatment of them all. Yet again, awful side effects followed. But she still lives on.
Zorka's strength, optimism and willpower is astonishing. Her kindness, openness fills people with amazement. All the pain she went through hasn't weakened her, it made her stronger. She is full of energy and love of life. She is a little hero, along with other ill children.
The fight is still to continue....
Thanks to her willpower and endurance, we could spend 10 months without treatment. Of course during this period we still continuously used various kinds of supplemental and alternative therapies. Zorka drank a special water, ate special food which were developed for tumor patients and there were also medicinal products, herbs and herb-teas in her day-to-day life. We also tried to get more time by using natural therapies as well. Whatever people suggested, we tried everything. Clinical results therefore were not bad at all, but not entirely comforting either, since there were still living parts in the inoperable tumor mass. Therefore a half-year medication treatment started again on 30 November 2010. In the beginning my dear Hero endured it well, but in March she got chicken-pox unfortunately. The medication treatment was thus extended until the pocks disappeared completely.
On 9 May 2011 we finished the medications. We went to a control examination. The tumor marker results were amazing (NSE: 20). On 11 May we had to go to an MR examination. We were not worried, since an isotope examination in April showed that there are no metastases either in her body or in her bone-marrow and also we saw 2 days ago that the tumor marker was decreasing. It was thus shocking to read on 24 May, when I get the result that "there is a possibility of bone-marrow metastasis". A series of examinations started, PET CT, blood-test, ultrasound on 26 May and after that on 8 June a so called octreoscan, which is a certain kind of isotope examination.
We are scheduled for a bone-marrow biopsy on 15 June. It's a very painful examination. It is done in narcosis, but after the procedure, the pain lasts very long, because it involves drilling holes into the bones, that's how they get a sample from the bone-marrow.
So what else could we have done, we waited. We were informed about the date of this biopsy on 10 June. On that day I took Zorka to her friends, whose mere presence made her happy always. We went to a pizzeria, everyone was there whom she loved, her little girlfriends, their parents, everyone who is important to her. I knew we are facing a big fight, but I wouldn't thought it would be this big. She got ill right there in the pizzeria, she threw up. Immediately I rushed her home. The next day she ate, but her body couldn't take it. On the 11th she couldn't eat or drink anymore. I told Zorka we need to go to the hospital for infusion or she will dehydrate. She started crying "I don't want to!" Painfully though but she could drink 3 decilitres of water during the whole day. She watched Harry Potter all day, she couldn't leave the bed, but bit-by-bit, with teary eyes, she swallowed that small amount of water. She asked for some food several times... "I'm hungry like a wolf"... but even if she took a tiny bite of anything, she couldn't eat it.
"and so now, I'm between life and death again, just like 3 years ago... back then I could gather my strength and struggle on with a smile all along on my face... I'll be strong again this time and show what I'm capable of! I have to set an example for so many people and I have so much to do still. I'd like to go to school, I'm the only light for my mum! I'll do everything for my recovery. I'll lock my teeth and endure the pain, suffer the nausea, the treatments, everything that's still ahead of me, because I want to LIVE!!" - Zorka
...and she struggles and struggles minute after minute but she never forgets to smile. In her beautiful, innocent eyes I see strength, endurance and the miracle of life.
That's how we struggle on...
