Vilja Linnea’s story

I’m happy I got to be here even for 20 years.

Vilja Linnea Alve

This is what Vilja told us on her last night. Vilja lived with cancer for four years. The story of Vilja
Linnea’s Sarcomafund begins with Vilja’s story.

Vilja Linnean tarina

Olen onnellinen, kun sain olla täällä edes 20 vuotta.

Näin Vilja totesi viimeisenä iltanaan. Vilja ehti elää syövän kanssa neljä vuotta.
Vilja Linnean Sarkoomarahaston tarina alkoi Viljan tarinasta.

Everything started at the end of 2017. Vilja was feeling constantly tired without good reason. She went to the doctor multiple times – they took blood tests, listened to her lungs and heart. From a medical point of view everything seemed to be fine. The doctors suspected that the reason for the tiredness was school stress.

During the summer of 2018 Vilja started feeling pain in her left leg, just below the knee. The pain always got worse towards the evening. A physiatrics specialist diagnosed her at the end of July with muscle tightness, cause by her hobbies. The treatment was physiotherapy. As the pains continues, the specialist surmised that Vilja’s hobbies of trampolining and pole dancing were the reason for her pain. To be safe, the doctor ordered an x-ray to be taken. Once the x-ray results came back, Vilja received an urgent referral to the Töölö hospital. The cause: a tumor in the bone.

At the Töölö hospital Vilja was admitted quickly for further testing. Her tibia was biopsied and different medical imaging was taken. Waiting for the test results was torture and we as a family were fearing the worst. Finally, at the end of September 2018 we received the diagnosis: high grade osteosarcoma (bone cancer). At this point, the tumor had already grown quite big.

The doctors, nor us parents, had suspected cancer before Vilja’s leg was imaged. However, the tiredness was clearly the first symptom of the cancer. During the next few years, tiredness was always the first indication of new tumors. Minna Laitinen, the orthopedist at the Töölö hospital, confirmed that leg pain that gets worse towards the evening is a clear indicator of osteosarcoma.

At the beginning of October 2018 Vilja started chemotherapy treatments in accordance with the EURAMOS protocol. The oncologist at the HUS Cancer Center, stated that these treatments were the toughest chemotherapy treatments available at the Cancer Center. Orthopedists at the Töölö hospital removed the tumor in Vilja’s leg and put in a prosthetic that reached from the femur to the tibia. The operation went well. However, being in active chemotherapy treatments and having a cast from her thigh to her ankle for months was an exhausting combination for Vilja. Vilja had to learn to walk again during the spring of 2019. The chemotherapy treatments at the Cancer Center were completed in June 2019. When leaving the Cancer Center at the end of the treatments, Vilja’s only wish was that she would never have to return there.

When leaving the Cancer Center at the end of the treatments, Vilja’s only wish was that she would never have to return there.

Summer 2019 was wonderful. We had a newfound trust in the future, even though the fear of relapse or the cancer spreading into her lungs was constantly present. We went on walks, picked berries, and foraged for mushrooms. Vilja went to see Ed Sheeran in concert with her sister and best friend. She slowly regained her strength – not to where it was before, but to a level that she could live her life again.

In August 2019 Vilja restarted her studies at the Ressu high school. She had had to drop out of school in the fall of 2018 due to the intense treatments. She made new friends at Ressu and Vilja finally felt like she had her life back.

In May 2020 everything came crashing down again. Two tumors were found in Vilja’s lungs during a control imaging. The cancer had metastasized. The information came only two days before her 18th birthday. Telling Vilja about the tumors was impossibly heartbreaking. Thankfully HUS operated quickly this time and Vilja was scheduled for a lung operation in June. Because of the covid pandemic, Vilja had to be alone at the hospital. Not even family members were allowed to go see her. Cell phones were vital for communication.

Vilja spent the summer of 2020 recuperating from the surgery. The surgeon who had operated on Vilja, had noted on the medical report that there was a small change in the lower quadrant of the right lung, close to the pleura. This made us very worried, but the surgeon assured us that there was no reason for concern.

Vilja started her second year of high school in August 2020. In September we received more bad news: there were new tumors on both the right and left side of her lungs. The small change that the surgeon had noted on the medical report was now a tumor, several centimeters in size. We had been under the impression that the only curative form of treatment was surgery. However, despite our wishes the doctors did not write a referral for an operation. Vilja started another round of chemotherapy. Three months in chemo ended in progression – the tumors had grown during the treatments. Radiation is usually ineffective against osteosarcoma, but Vilja still started radiation therapy. After radiation, Vilja started Cabometyx, a drug which does not cure but slows the cancer down. The combination of radiation and Cabometyx calmed the cancer down enough and Vilja finally received a referral for surgery. The operation had to be done in two parts, because the tumors were on both sides of her lungs. The operations were done in August and November 2021, more than a year after the change in her lungs was noted for the first time.

“How much longer will I live?”

At the post-operation check-up at the beginning of December 2021, Vilja was declared healthy. However, only a few weeks later, on Christmas, Vilja started having trouble breathing. We took her to the emergency room in Meilahti on Christmas Day. Vilja had developed a high fewer and continued to have difficulties breathing. She went through numerous testing, received antibiotics and her lungs were drained of fluid several times.

7 January 2022 was the date when oncologist told Vilja that nothing more could be done. Vilja’s question “How much longer will I live?” remained unanswered. She managed to get Vilja on a drug called Tsivarga. A study had been conducted abroad, in which Tsivarga had slowed down the progression of osteosarcoma slightly. This drug had never been used for osteosarcoma in Finland before, so it required special approval.

For Vilja, the effect of the drug was incredibly good. While she had been basically bed-ridden at the beginning of January, she was able to go to school for a few hours and meet with her friends only a week after starting the drug. Even though Vilja was feeling better, the side effects of the drug were rough – she had frequent stomach aches, lost weight and the skin on her hands and feet broke so badly that she had trouble walking at times. And the most painful side effect for Vilja personally was losing her hair for a third time.

Spring 2022 Vilja lived one goal at a time. The first goal was to make it to the matriculation examinations. Vilja had completed some of her exams in the fall of 2021 in between lung operations and she did another three exams in the spring. A huge thank you to Ressu for helping and supporting Vilja in her studies!

A huge thank you to Ressu for helping and supporting Vilja in her studies!

The second goal was to make it to her high school graduation party. 4 June 2022 Vilja received her high school diploma from Ressu and even got a scholarship. We celebrated at home with family and friends. We had commissioned a custom-made party dress for Vilja. She was so beautiful on her graduation day. Smiled. Looked happy. During her last days Vilja told us that she was so proud of herself for graduating and being admitted to study chemistry at the University of Helsinki.

Summer 2022 was important. We knew it would be our last summer with Vilja. We spent a lot of time together as a family, went on small excursions and just enjoyed each other’s company. In July oncologist Riikka Nevala told us that based on the CT scans, the drug was no longer working. Vilja started deteriorating at the end of July. She had trouble breathing again. We tried getting help from the Cancer Center, but it was desperately difficult. Vilja was bounced from place to place. No one seemed to take responsibility for her care and did not want to or did not dare to tell us how little time she had left.

We spent a lot of time together as a family, went on small excursions and just enjoyed each other’s company.

Friday 12 August 2022 Vilja started hospice. This came as a complete surprise to us, because Vilja had been told the previous day that she would receive new treatment instructions on said Friday. We wanted Vilja to die at home, but despite being clients at Terhokoti since January, they were unable to provide palliative care at home. So, we went to Terhokoti. Vilja died 14 August 2022 at the age of 20. 

Vilja was a brave, smart, empathic, passionate, and funny young woman. Even though living with constant uncertainty was very mentally draining, Vilja tried to live as normal a life as possible and do things that were important to her. She enjoyed nature, went on long walks in the woods, took pictures and drew flowers and mushrooms she had captured with her camera. Vilja loved animals and her bunny Eba and five guinea pigs were very important to her. Her childhood friend Mona as well as Anna and Milli whom she met at the German School and Fanny from Ressu were very dear people in Vilja’s life. Vilja loved reading and romantic fantasy was her absolute favorite genre.

Vilja’s third goal, starting her studies at the University of Helsinki, never came true. After her studies, Vilja would have wanted to focus on either drug development, to develop drugs for incurable diseases, or alternatively to find solutions to environmental issues through research. Vilja wanted to make the world a better place – and this wish is one we aim to fulfill for Vilja through the Sarcomafund.