„Mum, why am I sick?” – asks 6 years old Nikola and looks down at her cut tummy. „You had a bug. The doctor had to cut it out and stitch your tummy back” – mum responds. Over the last 4 years she has learnt how to reply to all her daughter’s questions. “Mum, do all the kids leave for angels?”“No, not all of them.” When children don’t come back to hospital mum tells Nikola that they got better. “Mum, my hair is gone. But don’t worry mum, it doesn’t matter. What matters is my tummy.”
When Nikola was 2.5 years old she started to complain about pain in her stomach. The pain was unbearable especially at nights. “We started to search for the reason. No remedies would help. There were times when we were seeing the doctor every other day”. “She’d been eating too much sweets” – we heard. We were explained that such pains are normal for small children and that it could have been gripes. No one has even thought to run a USG examination. Finally, after 2 months of searching for the pain reason Nikola was referred to the USG examination, where the doctor immediately spotted a tumor. It was massive, 10x8x6cm, and it embraced left adrenal gland.
“At that moment in time we were unaware what it meant. I remember we were supposed to show up in hospital on Sunday. When I put two and two together I already knew it was cancer.” Malignant neuroblastoma of stage IV with metastases to bones and medulla. 15% chance of survival. CT, MRI, biopsy, myelogram, EEG, X-rays, catheters, injections, pills…everyday tears and scream of a helpless child. Her horror was horrendous, almost tangible. “This picture is so solid in my mind that I will never get rid of it.
Within those 2 months when we were searching for help, cancer rushed, took over bones and medulla.” Chemotherapy was supposed to stop it. After 8 cycles of chemo there were other procedures such as surgery, autograft, radiation and sustainable chemotherapy. The treatment was finished by December 2011. “After 8 months we heard – recurrence”. The chemo pills were so big that Nikola could hardly swallow them. It didn’t work. Cancer spreaded. Other sorts of chemo were applied with no result. Cancer was still in the bones and medulla.
“Just before Christmas Eve the doctor told us there was no more hope. They gave Nikola a month. The advised my husband to take some days off to spend the last moments daughter. We were hunting for help. We didn’t want to wait for Nikola’s death. Was there really nothing to be done? – we wondered. Cancer was stealing our only child. We landed in one of the Warsaw hospitals. Much bigger than the previous one. That was where we really got scared, there were so many sick children. By fear in the eyes one could tell who was new to the ward. We have already been fighting for few years now but we met those who lost the fight after several months. Every time when I come back from Warsaw I am sick. I can’t stop crying. I don’t understand why kids have to suffer that much.”
- „Angel of God, my guardian dear” – Nikola prays every day. After this prayer she prays in her own words. She knees by the bed and begs God for health. She asks for other things too. She asks to be able to go to school. But in first place she always begs for being healthy.
We have heard about the anti-GD2 treatment before. Parents were talking about this treatment in the hospital. When we found out that children with similar condition as Nikola are treated with success thanks to antibodies, we wrote the German clinic. After a month we got accepted for the anti-GD2 therapy. The therapy is still unavailable in Poland. It would be much more convenient but at the moment we don’t know when or if at all it will be introduced. Cancer leaves us no time to wait and wonder. To go to Germany as soon as possible and to give Nikola the last drop of hope we are collecting money for the treatment by ourselves (150 thousand Euro).
Child’s sickness is parents’ nightmare. Sometimes, when doctors are helpless, parents lose their strength. But as soon as hope appears, they will do whatever needs to be done, even if they had to move heaven and earth. And if the heaven at all exists, it exists here – in good people’s hearts. Each person who joins Nikola’s life battle will ease her parents’ daily routine. Daily routine of living in the world of pain caused to their daughter by cancer.
