Ilona was diagnosed with an acute lymphoblastic leukemia in August 2013.
The cancer appeared completely unexpectedly (as it probably does to everyone) in a healthy child. We received the leukemia diagnosis after just a few days of pain, sickness, fever and quickly shifting blood values. It was like falling into a black hole, or like being thrown to sea in the eye of a storm without knowing when the storm would calm down and one would see the safe harbor. In the blink of an eye, our ordinary family life was radically changed: the “carefree” everyday life was filled with enormous fear for surviving the cancer, rough cytostatic treatments and their side effects, sickness, loss of appetite and sensitivity to infections. It felt unreal.
It was the beginning of a survival battle. We got help with our everyday life (cleaning, ready-made food, presence) from our siblings, grandparents and our closest friends. At first, Ilona reacted strongly to the cytostatic; the mucous membrane of her mouth was completely burned, presumably also in the digestive tract. Ilona was not able to eat anything for two and a half weeks, and the visits to bathroom were complete suffering. The pain was treated by morphine and the food was given by tube directly into her vein. We were trying to balance the terror: the treatments caused scary side effects but abstaining from the treatment would have been life threatening. Eventually, Ilona started to feel better, and she began to eat and speak again. Three months later the doctor suspected for a while that the leukemia had come back. The awful fear struck again, but luckily it was a false alarm. After that the treatments have proceeded pretty much according to the plan.
Family life with cancer became one step more normal when the strong cytostatic treatments ended in October, and Ilona was able to start daycare in a small group in November. The leukemia treatments will continue until the end of February 2016. Two and a half years is a long time to live a life with sensitivity to infections and it affects the whole family. The uncertainty is ever present and one just has to learn to cope with it. The immediate feelings that come to mind to us parents are probably tiredness and worry. The complete picture is probably difficult to grasp to someone who has not experienced everyday life in a family in which the child has cancer. The big brother has been a big brother with a capital B. He has been there with us, trying to lure Ilona to eat when she has lost her appetite, and spent time with Ilona, giving the parents a chance to take care of the home, or just breathe for a moment. Ilona feels safe and trusts strongly in her big brother, as well as us parents.
Ilona has taken her sickness with the immense optimism that a child has; the option that she would not get well is not in her thoughts. The braveness that she shows when going through the treatments and procedures, and her calmness to accept her own situation, have been a great lesson for us parents, too. The serious sickness has really taught us to stop in the moment and enjoy even the smallest reasons for joy. It has also taught us to encounter future challenges with hope and by trusting in the future.