On February 24th we took Eetu to the local health centre because he had problems with swallowing and issues with his balance. We got sent to TYKS (Turku University Hospital) because our doctor couldn’t find an explanation for his symptoms. We spent the day in TYKS going from one doctor to another, from ward to ward. That evening a doctor told us that we would be staying in the infectious diseases ward overnight as Eetu was scheduled for an MRI scan the following day, followed by a closer inspection on his throat.
On February 26th Eetu woke up feeling phlegm-y and generally very unwell. The nurses had to suction mucus out of Eetu’s mouth as he was unable to swallow. Thankfully the nurses stayed with us in Eetu’s room until we got called in for the next round of tests.
Eetu was first taken in for an endoscopy, after which we were quickly told that everything was ok. Next a doctor came in to tell us that in Eetu’s MRI scan had revealed a tumour in a tricky spot. I completely fell apart. One of the nurses gave me a hug and told me Eetu was in for another round of scans, and that these would take at least a couple of hours.
As we waited to be called in to Eetu, we kept wondering WHY our son? You obviously wouldn’t wish these kind of news on anyone. Irreplaceable help was given to us by friends who were great listeners. One family of friends had been through the same thing and we knew we could pick up the phone any time and talk to them. Ask about things that were on our minds.
After scans and tests we were able to go and see Eetu in the intensive care unit where our little man was hooked up to a whole lot of tubes with new ones being connected. Team of doctors arrived and the only thing we took away from the conversation was that Eetu’s condition was critical. That evening someone mentioned the word “ventilator”, that’s how bad things were.
About a week later they took a biopsy of the tumour and at the same time Eetu underwent a tracheotomy. The tumour was inoperable due to its location. The doctors devised a treatment plan which included various drugs and radiation therapy. The following months were spent in TYKS (Turku University Hospital). Dad and I decided to spent alternate nights at the hospital to ensure everyone would get enough rest and that life for Eetu’s big brother would carry on as “normal” as possible.
After many setbacks and infections Eetu’s radiation therapy was finally concluded by the beginning of May. At last we got to go home from the hospital. Eetu had difficulty eating and drinking, so for a while we were relying on the nasogastric tube at home. We were also given a wheelchair to help with moving around.
Eetu’s physical condition remained poor, mainly because he had practically remained stationary in hospital for two months, so he needed help with everything. His muscles were out of practice and not used to moving or sopprting his weight. Little by little his arms started to gain strength, then his neck and now he is able to walk almost unaided.
Eetu has remained super positive throughout and is always keeping everyone else’s spirits up with his funny remarks. He gets through even the more unpleasant procedures with his superturtles-attitude.
We have told Eetu and his big brother that Eetu has a bad owie in his head, an owie that cannot be kissed better. We’ve never used the word “cancer” in front of the boys as they wouldn’t understand what it means and that would only add to the uncertainty they’re feeling.
We have told the doctors that we are not “interested” in prognosis, we can HANDLE this! From the days in the ICU, we’ve told the doctors that we will go against all odds and prognosis. They’re only odds and every tumour is different. As long as Eetu is doing good, the rest of us are doing good.
We get so much joy and peer support from the events organised by Sylva. Eetu can meet and play with other children. Without these moments of joy, these events where the children can just be and play like healthy children, the people who find the energy to always be positive and supporting, without them we couldn’t go anywhere because of the risk of infection and we would have to spend all of our time at home.
“We try and we get up if we fall. The gloves don’t come off, we won’t give up... Keep looking forward, keep smiling, I’ll gain strength from adversity... Keep looking forward, keep smiling, bring it on, I can take it, I won’t give up...” – Elastinen *
*Translation by Minna Mäkinen