My name is Felicia Reggentin and I am 21 years old. I am a bubbly person who loves to keep 100 balls in the air at once. Throughout my entire life, I have been going back and forth to the hospital because I have a genetic disease called Fanconi anemia. This disease affects 1 in a million. It is therefore very rare. The reason they keep such a close eye on me is because the disease could develop into bone marrow failure, myelodysplastic syndrome (MDS), AML or solid cancer. And this is exactly what has happened to me, my disease has developed into MDS.
In the summer of 2025, I had just graduated and was now looking forward to traveling and enjoying life. I drove down to Greece and Macedonia with my family and relatives, but something didn't feel right. I felt much more tired during the day, I got bruises more easily and I was short of breath with the slightest activity. But as I am, I completely ignored this and dismissed it as "poor fitness, poor sleep or just tired". But my gut feeling said something completely different. It said that as soon as you get back to Sweden, you should probably go and get your levels checked. So that is exactly what I did.
After the visit to the hospital, I waited for the news and it was as I had suspected. My platelets were at 60, and they should actually be around 165-387. After this, everything went incredibly fast. I had to take additional tests already that same week, and it didn't take long before they concluded that something was wrong and that I would have to have a bone marrow biopsy just the week after. I was not excited... I am terrified of EVERYTHING that contains needles, syringes etc. So this gave me such stress, but what choice did I have? So the bone marrow biopsy was taken. Then came the result,
you have Fanconi anemia MDS which is a blood cancer and you will need to go through an allogeneic stem cell transplant.
I was in shock. I have always known somewhere that I would need to go through a stem cell transplant, as that is the only thing that can cure my Fanconi anemia. But it has always been so far away. Plus what is MDS? It is a word I have never ever heard. Do I have cancer? I had so many questions and thoughts.
After this news, my life changed from one day to the next. I was forced to stop working because I had no energy in my body due to my low levels. I was at the hospital several times a week for blood and platelet transfusions. I remember this period as very anxiety-filled and question-filled. Will I get to celebrate Christmas at home?
Or will I have to celebrate Christmas at the hospital? How does chemotherapy feel? Will I survive? I actually spent a lot of time on young cancer to check other people's stories, because it made me calmer. If others can handle this, then I can too, right?
Then all the tests before the transplant began. I had to go through a gastro- and colonoscopy, ECG, a thorough dental assessment, an ear-nose-throat assessment (where they, among other things, go down with a tube through the nose to check the vocal cords), a PICC line insertion (which is a small box that is operated into the skin) where you can later receive chemotherapy through, as well as take samples from. Unfortunately, my PICC line insertion did not go completely flawlessly because I had extreme pain several days later. In hindsight, it is suspected that it might have been on a nerve. But today it is my best friend because I have incredibly bad blood vessels in my arms. When I was going to take samples (which I did practically every week), I was often pricked 5-8 times just to take a few tubes. I remember that I used to be heeelt blue around my arms. It was terribly awful, I remember that I just lay and cried at the same time as they looked for blood vessels with the needle. Ugh.
A stem cell transplant is an extremely taxing treatment for the body. The doctors explained to me that one of the risks of the treatment is that I might never be able to get pregnant. So I was asked "do you want to retrieve your eggs?". I remember that I was completely stunned and thought "do I even want to have children?". I had never thought about children before. Going from never having had to think about whether I want to have children or not to "if you don't do this now, you will most likely never be able to get pregnant" was very difficult. Finally, I decided that I wanted to retrieve my eggs. But unfortunately, Malmö could not offer sedation without just painkillers, and as a person with an extreme fear of needles and pain, this was not possible at all. Unfortunately, I had to say no to this even though it really was something I wanted to do. Everything I had gone through in the last few months had drained me so much that I didn't have the energy for one more thing. So it had to be a no.
In all this, I tried to do as much as possible, because I knew that I would soon be lying in a small room for several weeks at the hospital. And not get/be able to do anything for several months after my SCT (stem cell transplant) because you become very infection-prone after an SCT. I went to a concert, I managed to celebrate Christmas at home, I went abroad for 1 week, but then it was time for admission in Lund in April for my SCT.
It started with a tough treatment of chemotherapy. I was very scared. Unfortunately, I have heard many horrible stories about how chemotherapy can affect a body and that didn't make it all easier. But now in hindsight, I would still say that it went smoother than I had thought. The nurses and doctors in Lund are absolutely wonderful! They have such incredible knowledge and helped me with everything. They were very quick to give more pain relief etc. which was so nice. The transplant also went well but was very scary. I got a fever, became nauseous and my heart also jumped very strangely, I almost thought it would stop... so we had to take an ECG but it showed normal. When I got my new stem cells, a nurse sat with me the whole time because the process requires extremely high security.
At the same time that I got my new stem cells, I was also blue-isolated. This means that the patient (me) is extra sensitive to all bacteria. Here I also started to feel the side effects of the chemotherapy. I started to feel sick, I had incredibly many problems with my stomach, and I got blisters all over my mouth which made me have problems eating. So at night I got an IV drip and during the day I had to rinse my mouth with pain relief before every meal. It was incredibly difficult. I also got muscle pain that often came in the evenings. Imagine you have a cramp in a muscle, but it feels like that in the WHOLE body at the same time and it doesn't go away. It is probably a decent comparison.
This went on for a few days before it got better. And then from one day to the next, I woke up without blisters in my mouth, without pain in my stomach and without cramps in my body. It was completely crazy. It almost felt like a dream.
But after all this came what I had perhaps feared most.... My hair started falling out. It felt incredibly strange to be able to pull off clumps after clumps without any resistance. But now in hindsight, I can actually say that it was not as difficult as I had thought it would be. I have hardly worn my wigs and I have felt very comfortable both as a blonde but also with as short hair as I have today.
Then from one day to the next, I was home, 7 days before my 21st birthday! Today I am still struggling to get back to everyday life, I have come a long way but there is still a lot left.
The energy I had before no longer exists and that is probably the hardest.
Not recognizing yourself or your body. I will hopefully start with very light rehabilitation soon which I am looking forward to.
Thank you so very much for reading everything I have written. Remember that you are stronger than you think!! If I can manage to go through something like this, then you can too!
Thanks to all the donors who have voluntarily signed up for the Tobias registry, I have a chance today to continue my life. Because without the Tobias registry, I would not have survived as it was the only way for me to get well. Hug Felicia Reggentin
