The diagnosis of acute lymphatic leukaemia turned the world of the student Amber Visser upside down. Now that the initial treatment is behind her, she wants to draw attention to her illness since anyone on campus could potentially be her saviour.
“Something as simple as watching my dog play in the garden can make me intensely happy.” Up until two months ago, Amber Visser (20) had thoroughly enjoyed student life, like her fellow students. Of course, the double degree programme she started this year took up a lot of her time. She danced away these frustrations at the Erasmus Dance Society. Everything changed on that fateful afternoon in March. She went from a life of studying, dancing and friends to a 16 m² room in the Erasmus MC. “It’s as if the ground drops out from under you; you know immediately that everything’s going to change.”
I was asked to go to hospital the next day. I knew then that something was terribly wrong.
It all still seemed so harmless last August. The “swollen” glands in her neck were “unpleasant”, but they were expected to disappear of their own accord. Although her glands were just as swollen one month later, this was still no reason to panic. “Alongside my studies, I worked part-time as a nail technician. The doctor thought I was allergic to one of the substances I used at work.” However, the subsequent tests were inconclusive. A new round of tests in February, this time oriented towards cancer, did not provide any explanations for the swollen glands. “The night we received the news I went out for a meal with my family to celebrate, but it still didn’t feel quite right.”
Because the voice in her head wouldn’t go away, Amber decided to undergo one final round of tests. “The doctor had warned me that they would probably be inconclusive, but I still had an uneasy feeling about it. Her swollen glands were becoming more pronounced, so there had to be something.” Her gut feeling turned out to be correct. The acrylic nails were not to blame. “I was meant to receive the results at the end of March, but I was already asked by phone on 7 March to go to hospital the next day. I knew then that something was terribly wrong. Unfortunately, she turned out to be right.”
After she had received the bad news, it took a few hours for the news to sink in. “It didn’t really register. The doctor told me that it was going to be a difficult time and that I was really going to have to put up a fight, but I was mostly relieved at first. All the uncertainty had finally come to an end; I finally knew what was wrong. However, it was only the start of even greater uncertainty.” Because the illness (see inset) had to be treated as quickly as possible, her world was turned completely upside down during the hours that followed. “The doctor phoned me that afternoon. I had to be at the hospital at 9 a.m. the next day. It was still uncertain whether I’d be able to return home that day. However, when a nurse gave me a bracelet with my name on it that morning, I knew how things stood. I started treatment immediately.”
Because chemotherapy had affected her immune system so much that she had to remain in quarantine, the prospect of not being able to return home that day eventually turned into over four weeks in a sealed room of less than 16 square metres in the Erasmus MC. “All my visitors had to go through a kind of chamber where they had to wash their hands before they could enter my room. I couldn’t leave my room. I couldn’t do much more than cycle on an indoor home trainer, make phone calls and watch films.”
Acute lymphatic leukaemia
Acute lymphatic leukaemia (ALL) is a form of leukaemia (cancer of the white blood cells) whereby the body produces an over-abundance of malignant and immature white blood cells (lymphoblasts). Because the bone marrow of ALL patients continually produces lymphoblasts, the body can’t produce enough normal cells (blood platelets, red and white corpuscles). The illness thus spreads to other organs. ALL is most prevalent in children aged 0-14.
It was a huge blow of course, but I actually always remained positive. There’s not much point in being miserable.
On the sofa in her parental home in Krimpen aan de Lek, Amber calmly tells her story, surprisingly often with a smile on her face. She has been at home for more than two weeks now and is anxiously waiting to find out if she responded to the initial phase of treatment. “It was especially strange to breathe in fresh air again. And to walk. I had lost all the strength in my muscles. Apart from that, I’m fine. I’m sick of course, but I don’t feel sick. That really helps.” The smile helped her to get through the difficult weeks. “It was of course a huge blow, and it was very difficult in the beginning. However, I actually always remained positive. There’s not much point in being miserable. All the visits and get well cards also helped a lot.”
Her mother, who had been proudly listening to her daughter from the start of the interview, started to laugh when the subject turned to visits. “It was always really hard to go back home without your child. Then, at some point, you find yourself on a rollercoaster. However, Amber’s positivity really pulled us through. Her family and friends chatted among themselves to cheer her up, but it was actually always Amber who cheered us up. We thought this was quite exceptional.” Amber does not see it that way. “I think that’s quite normal. Sure, it’s a pain that my hair has fallen out and that I can’t study for a while. But I just want to enjoy the small things in life and not feel down all the time.”
Even if I respond well to treatment, I’ll have to undergo a stem cell transplant
Instead of moping about, Amber prefers to help herself and fellow patients by raising awareness of the illness. Not only so that more people will know exactly what kind of illness they have, but particularly since anyone could save her life (see inset). “Even if I respond well to treatment, I’ll have to undergo a stem cell transplant. Good donors are very hard to find, but the more people donate, the greater the likelihood of a match and therefore recovery.” This is why she’s trying to draw as much attention to her illness as possible. It only takes five minutes. They send you a box with a cotton bud to swab your mouth. Send the box back and that’s it.” She would prefer to personally encourage her fellow students to become a donor. “With a stall on campus. I’m now discussing this possibility with Matchis (the Dutch centre for stem cell donors, eds.). Then I’ll ask the university for permission.”
There’s not much I can do at this point other than wait and see if and how I responded to treatment. “It’s strange, though. Before March I was completely focused on studying and dancing. Now I suddenly find myself at home with all the time in the world. That’s sometimes difficult, but I’m trying to make the best of things by raising awareness of the illness and looking for donors. One of these days I’ll stick all the get well cards I received in hospital in a book. I now have the time for it.”
It is difficult to predict the likelihood of a full recovery. “Because it’s acute leukaemia, the illness can suddenly flare up. However, the doctors said that 75 per cent of people my age recover.” Amber doesn’t want to contemplate any doom scenarios however, since she is completely focused on getting back to her studies. “I actually became ill at a bad time, since I had almost completed a statistics module. That won’t be a good start.”
Matchis, the Dutch centre for stem cell donors, recruits stem cell donors for patients with leukaemia and other major blood disorders. If no suitable stem cell donor can be found within the family (which is the case for 70% of patients), Matchis will carry out a worldwide search for a suitable donor. Anyone aged 18-50 (who satisfies a number of criteria) can sign up on the website. Matchis is also often present at (student) events to draw attention to the plight of patients and to recruit donors on site.