Matilda

In July 2012 the third child was born in our family; a much anticipated cute baby girl. Matilda grew up and developed. Her motor skills were good and from very early on she was good at getting around. Our joyful and lively little girl. 

When Matilda was nine-month-old, she cried a lot and did not sleep well. She woke many times during the night, moved her hips and seemed to be in pain. We visited the doctors few times but every time the doctor suspected that reason was teething or pain in her ears. At home we noticed that Matilda was constantly peeing a tiny bit which made us wonder why she does not let the pee just come. The doctor was suspecting a urinary tract infection. However, despite the antibiotics, Matilda just kept feeling worse and stopped sleeping altogether; she just cried endlessly. We held Matilda day and night, and we were completely exhausted as well. Eventually, Matilda was so sick that I as a mother felt like the child is dying in my arms. I took her again to the doctor and decided that I would not leave until I got an explanation for the crying. This time the doctor at the health center took us seriously and decided to consult a pediatrician immediately. The pediatrician again thought that there was no reason to worry and that the antibiotics would help soon. After seeing us again our doctor however thought that there were grounds for the further examinations and sent us to the Children’s Hospital where we went immediately.

At the Children’s Hospital, Matilda’s bladder was ultra-sounded.  We were told they discovered a structural abnormality that would, however, be easy to repair in a surgical operation. Because of the abnormal functioning of Matilda’s bladder, her kidneys were full of fluids and the other kidney had stopped functioning. The doctor set up a urinary catheter that helped Matilda’s state so much that, after a very long time, Matilda was finally able to fall asleep. 

The next morning we were waiting the surgeon to tell us the future plans after the operation but instead the surgeon told us that we would be transferred by an ambulance to the Kuopio University Hospital to further examinations because, after assessing the ultrasound pictures more specifically, they were not sure anymore whether it was a structural abnormality. Nothing else was told and we did not know to ask anything further…

The paramedics carried sleeping Matilda in through the doors of Kuopio University Hospital and I, the mother, followed them in this unfamiliar place holding back my tears. I will never forget the doorway that we passed at last because over the door it said: “Children’s blood and cancer diseases unit”. Reading that took me literally to the ground. 

Why are WE here? MATILDA cannot have cancer. They are wrong or this is just a bad dream and soon I will wake up…

But no, no one woke me up. Matilda was diagnosed with cancer, rhabdomyosarcoma, a malignant tumor in her bladder. The first days after the diagnosis we lived in a complete haze. We just remember that we cried for days, every now and then fell asleep while sitting and woke up wishing that we could fall back asleep. The reality was too heavy to bear. 

The weeks passed and we practically lived at the hospital. Matida went through rough cytostatic treatments that took her hair, appetite and made her sick and tired, but they also helped! The tumor got smaller and smaller. The parents mind clarified along with it. When the tumor was small enough, we travelled back to Helsinki to the Children’s Hospital to surgery. The operation was long and challenging, especially to the small patient whose whole pelvis had to be opened. Matilda was then a year and two months old and learned to walk a few months before. However, the operation went well and they were able to remove the tumor. 

What took much longer was the recovery. Matilda had to lie on her back for three weeks with her feet tightly tied together so that her pelvis would heal. Her arms were tied to the bed so that she was not able to remove all the tubes that were put in her. That was difficult time. Us parents and the older siblings sat next to Matilda and tried to entertain her every day. A week after the surgery things took a step backward when Matilda started to feel extreme pain and stopped eating. The doctors tried all kinds of pain relievers but nothing helped. Again, we stayed awake next to Matilda’s bed without knowing what to do and tried to soothe her in every possible way. It was the longest two weeks of our lives when we sat next to the sick child without being able to hold her. Finally, the reason for the pain was found to be a malfunctioning catheter that allowed the urine to end up in the kidneys. It was fixed and she started to feel better again. 

It is hard to describe the joy and happiness that followed when the bandages were eventually removed and we got Matilda back in our arms. After such a long period of lying still, Matilda’s muscles had disappeared and she did not know anymore how to move or even how to sit. Therefore, we started the learning from the beginning again, and quickly the skills were recuperated. 

After the surgery we still continued the cytostatic treatment in Kuopio for a half a year and the overall treatment took a year. The treatments ended in the summer of 2014. The same summer, Matilda turned two years old.

At the moment, there is a very lively two-and-a-half-year old girl at our home who has just had the six-month control check-up in which everything was well. Our family has grown with a fourth child. We have again a little baby girl (three-month-old). With Matilda we will visit the control check-ups for the next five years but right now we seek to live a life where we are happy about the small things around us because we are tremendously lucky for still having each other.