Noora

Noora had been sick for a long time but nothing was found.

In September 2012, Noora went for magnetic imaging and it revealed a massive tumor around her fourth ventricle and the central canal of her spinal cord. 

The first feeling was that I knew but no one believed me, and then that turned into desperation: ‘Does my child die now?’ The shock that hit us was just terrible and there was a constant urge to cry. ‘Would it go away if I managed not to think about it?’ But of course things don’t work like that.

Noora went through surgery a week after the tumor was found and they were able to remove all of the tumor from her brain. 

We were told that the treatment for the tumor was surgery, and, in the beginning, there was supposed to be just a 6-8-week sick leave, and then back to ordinary life. Well, it did not go exactly like that… Under two weeks after the operation, they called from K10 that we should go to talk with the doctors. There, some doctor told us that Noora’s tumor had spread to her spine, and that would necessitate radiation therapy and cytostatic treatment. They explained an awful lot but we were both so in shock that we do not remember everything anymore. One thing we do remember is that the survival rate from this cancer was below 50%, and at that point dad lost his nerves momentarily. 

At the end of September, Noora got a central venous catheter and a treatment plan was created at the unit K10 of the Children’s Hospital. On October 8th Noora started radiation therapy, which lasted for eight weeks. Before the beginning of the therapy, Noora received a radiation sensitizer, which was a cytostatic called ‘topotecan.’ She lost her hair during the first two weeks. After the first week, Noora was anesthetized during every treatment. 

When you think of the amount of sleepless nights and the amount of tears that were poured after the kids had fallen asleep – you avoided going to bed until you were nearly unconscious… During the first examinations and after the doctors put the central vein catheter into Noora, it became very clear to us that Noora would not collaborate and we always had to fight with her. It was awful to be angry at her in a situation where we would have just wanted to protect her and take her away from all that was bad.

After the radiation therapy ended, I thought that we could survive anything, that nothing can be worse than this. During the cytostatic treatment, we took couple of steps backwards, but we survived of it all, even when she could not eat. :) Our strong-willed daughter challenged us every day but we also constantly proceeded. Of course, I was scared; sometimes I doubted it all but I had decided that we will survive this and that the place for grief is somewhere else. 

The cytostatic treatment started in January 2013 at the unit. The first period went well but one of the medicines caused an intestinal obstruction. Subsequently, Noora had to stay in the hospital for three weeks. The doctors had to re-assess the treatment plan. The new plan did not include this medicine and instead another medication was added.

At some point, we had to think about using a PEG tube (a tube that passes one’s stomach through the abdominal wall and allows giving food directly) because Noora was not able to really eat or drink anything and her weight was just decreasing. 

In April 2013, Noora received the last cytostatic and in May started the end-of-treatment examinations.

Throughout the treatment, Noora’s condition and values were being assessed and we visited every now and then at the unit in order to receive different kinds of blood products.

In August 2013, we tried starting school. However, it did not go well. Noora was not strong enough to return to school on a full-time basis until January of 2014.

From September 2013 Noora has also gone to neuropsychological rehabilitation, which continues to the present day.

Noora’s images are clean at the moment – there has been nothing anywhere. Nowadays, Noora’s examinations take place once every six months, which is also a good sign. The next imaging appointment is in May 2015.

Some things in school are causing difficulties but that is because Noora will go to rehabilitation until the fall of 2015. 

In addition to 10-year-old piano-playing Noora, our family consists of her 12-year-old basketball-playing big sister, 7-year-old soccer-playing first-grader little brother, and mom and dad.

Nowadays, both sister and brother are asking questions and telling how they felt when Noora was sick. We have discussions about the illness, death and everything that is involved with this. We sleep next to each other. I watch light and entertaining TV programs and sometimes I cry when I am at home alone. I do not think that I will ever get fully rid of my fears and those words: ‘What if…’ However, now we have survived as a family and we enjoy every day of each other and life ;)