It’s been just over a year since we were hit with the most heart-wrenching news of our lives: our precious little Ada, who was only 2.5 years old at the time, was diagnosed with acute myeloid leukemia (AML).
We are facing another family crisis, the second one in a short period. Just the year before, I became ill and had a stroke after treatment from a chiropractor, a traume agains the neck causing Carotid artery dissection. Thankfully, I am fortunate to only have a few late effects left, mainly some fatigue and some sensitivity to noise. But that’s a tale for another day.
I want to share Ada’s story, both because it is a way to process the experiences and because it may be helpful or relatable to others in similar situations.
It all began on a cold Saturday in the middle of January last year. Ada, an energetic little girl, had a high fever, loss of appetite, and seemed weak – very unlike her. This was completely out of character for her, as she usually has a good appetite. After a couple of days of persistent high fever, we went to the doctor. The tests showed signs of infection, but not the location of the infection. We went home with a course of antibiotics in the hope that it would help. Unfortunately, Ada was still unwell, coughing a lot, and was far too pale.
A few days later, on a Friday evening, I felt a little calmer as she seemed slightly better. So I went on a team-building trip to Vibrandsøy, while Jeanette, my wife, stayed home with Ada and our two oldest children, Nora (then 12) and Viljar (8). A friend of Jeanette’s came to visit for sushi, but throughout the evening Ada got much worse. Jeanette decided to go to the emergency room.
At the emergency room, they quickly discovered that the spots on Ada’s chest did not disappear when pressed. A new CRP test showed sky-high values. They understood that this could be serious, so Ada and Jeanette were quickly sent to the children’s ward at the hospital for an X-ray and more tests.
A short time later, the doctors entered the room and informed Jeanette that they suspected she had leukemia – blood cancer. Jeanette was left speechless and overwhelmed by the unexpected diagnosis. I was too, when I got the message out on Vibrandsøy, feeling trapped on the isolated island with no means of leaving in the middle of the night. I spent the whole night trying to get a boat back to the mainland. The thought even crossed my mind to swim across the cold waters, but I knew it would be reckless given the weather conditions and distance.
Jeanette, who’s a midwife and is used to emergency situations, was still completely paralyzed. The doctors rushed Ada to Haukeland university hospital that same night by ambulance. Jeanette left in a rush, forgetting her jacket and with only 8% battery on her phone. At home, the sushi was still sitting on the living room table – and I had to figure out how to get off this deserted island in the middle of the night.
When I finally made it to the mainland, the family car was still at the hospital, with Jeanette holding the keys. I had to call my dad early in the morning to ask him to take me home so I could change into fresh clothes. I packed a bag, found the spare key and drove to Bergen as quickly as the law allowed. Meanwhile, the doctors at Haukeland had diagnosed her with acute myelogenous leukemia (AML), one of the most aggressive forms of blood cancer. Treatment had to begin with chemotherapy that very evening.
Ada was given anesthesia to receive the initial dose. The process took longer than anticipated, and concerns grew. She had to be placed on a respirator for the entire weekend. I recall how surreal everything seemed. What were only a few days felt like one never-ending, endlessly long day. We were constantly worried that the outcome would not be positive.
Over the next few months became a marathon of hospital stays, with chemotherapy treatments, side effects, infections and uncertainty. As a result, our family of five rarely had the opportunity to be together. My parents moved into our house and took care of Nora and Viljar during the weekdays. Then Jeanette’s parents came to Bergen on weekends with the children, allowing us some time together.
Ada had no immune system, so even a simple cold could be life-threatening. We spent some time at the Barnekreftforeningen (Children’s Cancer Association’s) apartment in Bergen, when the siblings were with us on the weekends, which proved to be extremely valuable. The apartment was very close to the hospital, and we could stay there for free. We could use the washing machine to wash clothes, which was a great help for doing laundry.
After some time, Jeanette and I decided to split up to be there for the siblings as well. She remained in Bergen with Ada, while I went home for a few days, and then we switched. During this period, it was as if the days blended together. We slept very little, were constantly on alert, and did our best to take care of ourselves and each other.
After seven weeks, Ada was allowed to go home for the first time. The joy was immense when she slept in her own bed and saw her own room. She was permitted a few days at home between each course of treatment, but she often became very ill from infections and had to be admitted again in the middle of the night. I have lost track of how many times we have rushed to the emergency room.
We decided early on to be open about the disease – both to school, kindergarten, family, friends and on social media. We did not want Nora and Viljar to feel like that this was a big secret, and we wanted to avoid rumors and misunderstandings. I am grateful for all the support we received in return. Many people offered to cook, help around the house, run errands, babysit or simply be a listening ear. Thank you <3
Despite all the pain, the doctors assured us that the vast majority of children recover. The hope that Ada would be cancer-free within two months turned out to be too optimistic. After the third round of chemotherapy we were told that the latest bone marrow test showed that she was still not in remission. The days and weeks seemed to pass slowly, but fortunately, after the fifth chemotherapy treatment, she responded well.
At the end of June, the final chemotherapy treatment was finished, and in August she was finally able to go home permanently. Then came the long-awaited news: Ada is cancer-free! We are incredibly relieved, but it is hard to shake off the constant fear of the cancer returning. You can’t just switch off that fear after so many months of being on high alert.
Now, one year after it all began, we are attempting to return to our normal routine. Ada is gradually returning to kindergarten, I have resumed work and we are learning to relax little by little. We now value everyday life more than we did before – it is the simple, small things that are important. A peaceful dinner together, all five of us, siblings joking and laughing in the living room, a night in our own bed. All of these things have suddenly become even more precious.
At the same time, we know that life will not necessarily be the same as before. The experiences of a year like this leave a lasting mark, but perhaps they can also bring us closer together and remind us of what really matters in life: each other.
Thank you for reading our story. This is a small glimpse into our struggle, the emotional rollercoaster rides, and the support we have received. We hope that if anyone else is in a similar situation, our experience can show that there is hope, and that there is a way through all the pain. It is about sticking together, asking for help when you need it, and most importantly, not giving up on the belief that it can all work out in the end.
If you find yourself in something similar, and need someone to talk to, please reach out to me!