“Getting a stem cell transplant means the world”

One of the patients who was saved with help from a voluntary stem cell donor is 21-year-old Rasmus Virolainen. Rasmus developed acute lymphoblastic leukaemia (ALL) at the age of 14 in 2018. Recovery has been a long journey, as Rasmus’ illness recurred twice.

He is currently doing well and living an active lifestyle free from leukaemia.

“Sometimes a little too active! Right now, I most enjoy being at home alone from time to time,” Rasmus laughs.

Over the past six years, however, his sense of humour was tested several times.

“Being ill was tough, both physically and mentally,” says Virolainen.

“The hospital was my sole living environment for many years. There were periods where I couldn’t really do anything except sleep. When I was feeling better, I watched TV shows on my laptop and played on a computer that was brought to my hospital room,” Rasmus recalls.

His illness also severely limited his social relationships. One or the other of Rasmus’ parents were at the hospital with him at all times, but his friendships were put on hold.

Help from hundreds of donors

Rasmus has received “all possible treatment” for his leukaemia. He initially received chemotherapy, which was supported by blood products – both red blood cell and platelet products.

The first phase of treatment lasted two-and-a-half years. After he finished his chemotherapy, the cancer was found to have recurred.

Rasmus was then treated with CAR-T cell therapy. Virolainen is one of the few paediatric patients treated with CAR-T cell therapy in Finland. CAR-T is a cancer immunotherapy treatment that activates the cells in the patient’s immune system to more effectively attack cancer cells.

Unfortunately, the cell therapy did not have the desired effect on Rasmus’ cancer, so in August 2021, he faced the final option for treatment, a stem cell transplant.

Fortunately, a suitable donor was found right away in Sweden.

“The donor was what is known as a perfect match, with a blood group and tissue type that matched mine,” says Rasmus.

“I spent my 18th birthday in hospital having the stem cell transplant,” he recalls.

The transplant itself was successful, but a long battle against the symptoms of Graft-versus-host disease began soon after. Rasmus had to stay in hospital for a continuous period of nine months. During that time, he underwent bowel surgery and was treated for symptoms caused by damage to his liver. For a long time, Rasmus subsisted on just intravenous nutrition and fluids. At times, his condition was so serious that there was no guarantee that he would survive.

Luckily, after many twists and turns, Rasmus’ situation was finally controlled and he gradually began to improve. He was discharged in the summer of 2022.

“We only realised the true extent of it all afterwards. And even though the cancer is gone, as a parent, you never stop worrying,” says Rasmus’ mother, Taru Tuominen.

Follow-ups and doctor’s appointments continue to be a part of daily life for the family. Leukaemia left its mark on Rasmus, who suffers with nerve damage, haemochromatosis, and osteoporosis. These will be treated regularly at the New Children’s Hospital before Rasmus is transferred to adult healthcare.

LeukemiaX3

Rasmus and Taru found their own way of dealing with their experience of leukaemia experience by establishing their own podcast called “LeukemiaX3” last autumn. The podcast was Taru’s idea, as Rasmus had initially talked about his leukaemia on his live streams.

“When I became ill, there weren’t any podcasts about leukaemia. If there had been, I would have definitely listened to them.”

In their podcast, the duo discuss the subject openly and honestly, but with a touch of humour. The podcast has provided peer support for people with the illness. Rasmus and Taru talk not only about the phases of leukaemia and the treatments for it, but also about joining the Stem Cell Registry and donating blood.

“Without a stem cell donor, I wouldn’t be here today! Receiving a transplant from an anonymous donor means the world. Blood donors are also important, and if I were able to donate, I definitely would,” says Rasmus.

This is easy to believe. Rasmus was joined on his leukaemia journey by a large number of volunteers. In total, he has received 98 bags of red blood cells and 226 bags of platelets during his treatment. This means that up to 1,000 blood donors contributed, as platelets from 4 donors are always needed to prepare one platelet product.

“Lots of people can donate blood or join the Stem Cell Registry. It’s impossible to understate how important it is.”