Our family has the time before June 3rd 2014 and the time after that.
On June 3rd was the beginning of a journey that we will never forget. At the end of May, Niilo had had odd symptoms for over a week: he was teething but also his eyes, and eventually whole face, got swollen. We received allergy medication and antibiotics from the doctor but those did not help. Eventually, eating became so painful that we decided to visit also the dentist. That day was that particular June 3rd.
The dentist told us that basically all the teeth had come out of the jawbone, the gums were swollen and turned blue, and the biting had radically changed. We left to the Turku University Hospital immediately. There, after a visit at the dental clinic, we ended up to the pediatrics unit. X-rays, CT scans, magnetic imaging, blood samples at every corner and finally biopsies. A big kudos to the staff of the Turku University Hospital – they examined and took care of us.
Niilo’s father works at an island, located south from Nauvo. There was a thick fog on the sea and he was not able to leave the island until around the noon of Wednesday June 4th. The waiting was long both at the island and at the hospital. He made it to the hospital at the afternoon. Around the same time, grandmother came to pick up the big brother to take him to her home.
On Thursday June 5th we got the diagnosis. Niilo had a Burkitt's lymphoma/leukemia. The treatment would begin on the next day. The diagnosis was sad, although of course we were anticipating it beforehand. A mother’s instinct is frighteningly good… Again, a kudos for the staff for being able to explain everything to us adults, and for medicating Niilo who was in severe pain. Along with sadness, there rose a strong belief in beating the disease and defiance that ‘damn, we will survive this.’ The stress reaction was protecting us adults. After receiving the diagnosis, we were transferred to the pediatric hematology unit. That unit became our home for the next half year. With it came new great people and peer support.
Niilo’s treatment started on Friday June 6th and on Sunday the swelling was gone. Just like the doctor predicted, the poisons worked well. There were lots of poisons that Niilo received along the way; there were eight treatment periods within five months and the amount of poison was great in each one of them. In the midst of everything, there were many infections, fevers, mouth pains, magnetic images, stem cell harvesting, biopsies, blood samples… During the five months, we spent 114 days in the hospital. Mother and Niilo were together 24/7, and father traveled between the hospital and home as much as he could, basically every day. Father took care of the home, two dogs, everything that a farmhouse involves and the paper work of his own company. The big brother visited our relatives and when school started again, he lived with his father while his little brother continued staying at the hospital.
A Wii-game was the son’s best friend, and the knitting needles were mother’s. Hospital clowns saved many Tuesday afternoons and the nannies gave mother a chance to breathe every once in a while. The Skype preschool allowed meeting friends. We have experienced a lot; seen dozens of movies, battled through several fights about medicine, cried, laughed.
Niilo’s treatments ended on November 1st, 2014. After this, we still spent over a week in the hospital because of painful mucous membranes. We returned back home on November 12th and Niilo was able to fully concentrate on recovering and getting stronger. In December there were still the end-of-treatment examinations: magnetic imaging of the whole body, lungs’ X-ray and blood samples. Fortunately and happily, to our relief, everything was clean. The situation necessitated a pancake party. For Niilo these news were not such a big deal because he declared himself healthy already in November. Isolation to prevent infections is continuing for a few months. During this time we will meet only healthy people, we will not go into larger groups of people, and gather the strength for the coming summer, which we will live fully.
Niilo has been the world’s bravest, happiest and most optimistic patient. He is our hero. He has taken his role better than anyone else of us could have taken it. He has had strength to think positively from the beginning. Of course, from his point of view this also been unfair; the summer was ruined, he could not attend preschool normally, and so on. Unfair, no one denies that, but that attitude - once again it is witnessed that attitude is everything. Niilo’s positive manner of looking to the future is something that everyone can learn from. Niilo is dreaming of a career as an actor or a singer. This future Aku Hirviniemi and Robin is our walking sun. As his reward of bravery and heroism he has chosen a trip to Legoland.
The child’s illness affects the whole family and the close ones unavoidably. The big brother has had to forcefully grow up and detach himself from his mother but he has done that remarkably well. Us parents continue to ponder all that has happened; we are thankful that we are here and in the middle of all the tiredness we can only note that we are a pretty good team. The worry and fear will walk with us probably always – it is just better not to give those feelings any power.
We have a wondrous family.
There are odd things happening in the wondrous family.
And nice things.
There are very loving things happening in the odd family.
There is a happy ending in the wondrous family.
-Niilo, June 4th at the Turku University Hospital-