Niklas was born in February 2010 on a beautiful frosty winter night.
Since his birth, he was extremely allergic to everything, and the symptoms showed both in his gut, skin and respiration. The series of illnesses started on his first Christmas, which led to a tonsil operation in the fall of 2011. After the surgery Niklas’ condition started to gradually worsen. He had continuously a bit of fever and he stopped eating and drinking. On Thursday on October 6th Niklas’ life changed instantly. We noticed that on the left side of his tummy he had a hard lump – like a tennis ball.
We left for the emergency room of the Kainuu Central Hospital where the situation suddenly changed into a fight for life. After the samples were taken, Niklas lost consciousness and then we were in a hurry. When examining Niklas, the doctors found a bleeding tumor in his belly and the situation was extremely critical. The doctors were assessing whether they would do an emergency surgery at the hospital in Kainuu. However, luckily, we were transferred in an ambulance to the Oulu University Hospital to the emergency pediatrics unit. There, we met the chief in pediatric hematology who directly told us that Niklas would not necessarily make it to the morning.
Fortunately, Niklas had enough strength to fight, and next day they were able to examine him for the first time under anesthesia. On the same Friday night the doctors burnt the veins leading to the tumor in order to stop the bleeding. This helped so that Niklas was able to fight over the weekend. During the next week, the doctors tried to take a biopsy of the tumor but did not succeed. On Tuesday, they decided to seek to remove the whole tumor. The hours were long when we waited to see whether we would get our child back. Thankfully, the operation was successful. A 750g tumor was removed from Niklas’ tummy. Along with the tumor, he lost part of his intestine and the left kidney.
Afterwards, Niklas spent two weeks at the emergency unit, mostly under anesthesia. During those weeks we received the diagnosis, which was a stage 4 neuroblastoma – a disease with an extremely bad prognosis. Actually, they refused to give us the prognosis. The disease had spread into the bones and bone marrow.
Niklas was transferred to the pediatrics hematology unit immediately after his condition allowed it. At the same time he started the 70-day neuroblastoma treatment, including eight cytostatic treatments. Niklas did not eat anything by himself so pretty quickly after his transfer to the unit he got the NG tube. After the New Year, it was changed into a mic-key button. The cytostatic caused lots of side effects; nausea, burned mucous membranes, loss of appetite and severe infections. Almost every cytostatic treatment had to be postponed because Niklas was suffering from an infection caused by the previous treatment. Niklas spent the first three months in total isolation. He was allowed outside only if his condition allowed it. Around New Years, he was able to explore the corridors for the first time. Throughout the cytostatic treatment Niklas was in the hospital. He did not visit home until in February 2012, after spending five months in the hospital.
After the cytostatic, it was time for the examinations. Niklas received such good results that the doctors were able to start planning the huge treatment: the stem cell transplantation. They did not succeed in collecting enough cells in Oulu so in May Niklas visited Children’s Hospital in Helsinki for a bone marrow harvest. Luckily, they managed to get enough cells in order to start the big treatment. In the end of June 2012 Niklas received a huge amount of cytostatic and the functioning of his bone marrow ceased. In the beginning of July, the stem cells were transferred back. The transplantation went well but after that bacteria was found in Niklas’ other central vein catheter, which is why this very important catheter had to be removed. Fortunately, Niklas began to recover in the end of July and in the beginning of August Niklas was allowed to return back home. In September, Niklas still received radiation in the area in his tummy where the main tumor had been. In October, they removed his mic-key button. After this Niklas still went through a six-month isotretinoin prescription. In March 2013 we received relieving news from the end examination: neuroblastoma was not found anywhere. After few weeks the central vein catheter was removed. Niklas spent the rest of the summer in isolation till the end of July 2013. In September, he started at daycare.
Now, Niklas is four years and 10 months old and full of life. He likes to play, do men’s stuff, swimming, cross-country skiing and music school. Still, he continues to find things that he did not know existed. However, life is flowing almost normally again.