In April 2013, Elin from Helsinki was suffering from suddenly occurred stomach ache that would not dissipate. Her parents took her to the Emergency Clinic in the Children's Hospital. “Maybe appendicitis”, her father Staffan Nystedt thought.
It was soon found out that the 6-year-old preschooler had Wilms' tumour, a malignant tumour of the kidney , which had taken over one of her kidneys. Pre-treatment before kidney removal was initiated immediately. The destination was the paediatric oncology unit, ward 10, at the Children's Hospital.
“My life stopped as if I had hit a brick wall. My work documents literally dropped out of my hands, when I stayed at home to take care of Elin. Fortunately, my colleagues picked up where I had left off,” says the mother of the little patient Johanna Nystedt, thinking back.
Johanna happens to be the head of the department of the Blood Service's Advanced Cell Therapy Centre. As doctor of cell biology and docent of cell therapy, in her work she develops cell therapies for cancer, for example. Ignorance is bliss, they say.
“I was perhaps able to better explain thing to Elin, the relatives and friends, but, on the other hand, I understood the gravity of the situation only too well.”
Namely, the operation showed that the cell type of the tumour was extremely malignant. That is why Elin was reassigned to a significantly heavier and longer-lasting treatment chart than originally planned. Fortunately the cancer had not spread though.
The cancer treatment periods – 16 in total – that seemed to last forever began right after the operation. Elin spent four days at the hospital every three weeks in cytostatic treatments. In between the treatments, she had to have regular blood and laboratory tests made and blood transfusions given.
“Staying at the hospital was horrible, because I always felt so sick there. Luckily my mom or dad could be there with me,” Elin says.
Blood transfusion for strength
Blood products play a very important role in the treatment of children's cancers. Blood transfusions are used for strengthening the small bodies to cope with the heavy cancer treatments, because they prevent the body's own blood cell production. That is because, in addition to cancer cells, cytostatics destroy also the body's own good cells.
“I had not really realised how important blood products are as supporting treatment for cancer therapy before I was there at the children's cancer ward. They are strongly present in the ward's everyday operations,” Johanna points out.
“Quite a number of voluntary blood donors are needed to support the cancer treatments for children. According to my count, Elin's treatments alone required at least 120 donors, and many others need much more blood products than that.”
Elin was mostly given platelets or thrombocytes, but also some red cells. Her treatments required a total of about 50 bags of blood products. Platelet preparations in particular require large numbers of donors. Furthermore, they remain viable for five days only.
“I have been thinking that blood donors must be quite nice people,” Elin ponders.
Elin and Johanna spent one year in isolation. Elin continued her schooling at home and sometimes at the hospital as well. She could not get any infections and food restrictions limited her life. Not that she had that much of an appetite either.
“When the older brother Anton got a bad cough, we moved to our summer cottage for three weeks. Elin met her friends through Skype or on the yard, but she was not allowed to touch them. What saved Elin's appetite were the cooking programmes on television that inspired us to bake and savour on what we had created,” Johanna recounts.
The same old Elin came back
Fortunately, children get used to new situation quickly. Elin's daily routine included the children's programmes on television, school matters, and taking care of her gerbils Sune and Bosse, with gloved hands, naturally. And, of course, baking. Laskiaispullat, sweet buns for Shrovetide, became one of Elin's favourites.
After slightly more than a year after the treatments began, in spring 2014, Elin got a clean bill of health. No minimal residual disease was discovered, and the heavy treatments had not caused any major injuries.
The family's everyday life changed immediately. Elin started school at the Swedish-speaking lower-stage class in Kulosaari in autumn 2014. Friends visit her almost on a daily basis and she takes piano classes once a week.
“I am finally the same Elin I was before, just a little bigger,” Elin says, summing up the situation.
For Johanna, it felt great to return to work after Elin had recovered from her illness. Having followed the fight of children and their families against cancer from so close, Johanna's motivation for her work as developer of cell therapies is higher than ever.
“The first thing I wanted to do when I returned to work was to go and give a hug to every donor at the Blood Service's Kivihaka blood donation centre,” Johanna adds.
The everyday life at the Nystedt family has returned to normal. They will not stress over minor matters. There are no food restrictions anymore, and they can go to shops whenever they feel like it.
Some time ago Elin passed an important milestone, one year without any signs of the recurrence of the cancer. The control visits will still continue every three months.
Elin's favourite subject at school is art, and perhaps mathematics as well. The walls in her room are covered with self-made art works. She now has three gerbils. The only reminder of Elin's illness is the bookcase, the frames of which are decorated with stickers given upon her visits to the hospital. There are quite many of those.
Text: Minna Kalajoki / Mediafocus
Photos: Johanna Nystedt and Jari Härkönen
Published in 2016