Kiana was born in May 2010. A full 10-points girl! Dark thick hair and eyes like two brown buttons. Mom and dad’s much-expected first-born.
Soon Kiana, however, became very tearful and it was nearly impossible to calm her down. Everyday life with a constantly crying baby was hard. Mom talked about this at the maternity clinic and was directed to a physical therapist who could offer caretaking tips for babies who cried a lot. However, soon Kiana’s eyes started to move restlessly and Kiana was urgently sent to the Oulu University Hospital. In August 2010, when Kiana was a three-month old, she was diagnosed with a malignant brain tumor.
It felt like the world was collapsing! The everyday life with a baby was changed into a life in the hospital. The amount of worry about Kiana was big, and at first it felt like the worrying invaded our minds. Kiana was examined and they came to the conclusion that the tumor could not be operated on. We were not given much hope in the beginning. The tumor had originated in the optic nerve. Therefore Kiana has a deficiency in seeing and her vision is likely to degenerate as the disease proceeds. The medication was started immediately and with its help the tumor has stayed under control.
In April 2012, we had gone through the treatment plan that was planned for one year and eight months and the treatments ended. At this point, we felt like ‘now we can continue living as a normal family.’ Kiana’s little sister was born around that time, in May 2012. The central vein catheter on Kiana was removed in June. Kiana was able to go to sauna, a summer holiday and swim in the lake for the first time in her life.
Kiana went to a control check in August 2012. In this very first control they found that the tumor had grown and spread. The new treatments were started immediately. For the first six months Kiana was treated with medicine with no response and the tumor just continued growing. The disappointment was huge and again our family felt overwhelmed by the sorrow. The following treatment plan worked well and the tumors have decreased and stayed in control. This treatment is still ongoing.
Kiana got the nasogastric tube in September 2010. On spring 2011 the tube was removed and replaced by a PEC button that continued to ensure Kiana received nutrients. The button was in use for almost two years. On fall 2012 Kiana started the Picnic-treatment in order to wean her from the PEC button. Now the use of PEC button has happily ended. Kiana is able to eat by herself normally.
Kiana’s little sister is a healthy girl who goes to daycare few times a week. Kiana is allowed to stay with mom at home but her everyday life is restricted in order to prevent the infections. Dad goes to work. We visit the hospital every two weeks and the blood samples are taken at home according to the plan. The control checks follow every three months. The weeks and days before the magnetic imaging are hard; thoughts are flying in different directions and feelings keep changing. That is because one never knows what kind of news the image will tell, and we have previous experience of both good and bad news.
The next magnetic imaging is in March 2015.