Interview with Susana, an ex-leukaemia patient
Susana is 38 and lives in Zaragoza. In July 1991, when she was just about to turn 18, she was diagnosed with Acute Myeloid Leukemia. Following Chemotherapy treatment she underwent an autologous stem cell transplant in Hospital Clinic Barcelona. Despite thinking that she wouldn't be able to have children due to the chemotherapy and high level radiotherapy she had undergone, today she is the natural mother of three children, Olivia, Juanito and Maria.
Susana, with her family in 2010.
1. What was your personal situation prior to being diagnosed with Leukemia? What were your plans? What symptoms led to the diagnosis? How did you take it?
I was diagnosed with Leukaemia in August of 1991. At that time I had just finished my school exams and I had been accepted at university to do Business Studies.
Also at that time I loved doing athletics. Twice I had been runner-up to the Spanish champion in the 300 metres and the 300 metres hurdles and champion of Spain for the 800 metres while running for teams in San Sebastián. I had been told that I stood a very good chance of being able to participate in the 1992 Barcelona Olympics.
I had been holidaying at the beach and in the mountains when I started to feel ill. Fluctuating between a high fever one day, and a slight temperature another day. I also had a lot of bruises and above all I was feeling very tired. So my parents decided we should return to Zaragoza early from the holiday. They gave me various blood tests and then sent me home. A few hours later they called my parents to give them the results. It was very difficult for them.
My parents told me the hospital had called and that I would have to go into hospital as I had severe anaemia and that I would have to stay there for some time. They chose to hide the actual diagnosis from me. I think deep down I knew what was happening but to have heard the word Luekemia would have scared me. I was taking it in little by little and dealing with it and the truth is I was positive. I think within myself I always thought I was going to come through this.
The support from my family was the most important thing. They were always at my side and always there with a smile on their faces. My friends didn't miss a day visiting me in the hospital. I also mustn't leave out the medical teams in Zaragoza and Barcelona, who were incredible, treating me with such warmth and dedication.
2. And the transplant? Tell us about the proceedure.
In January 1992 (olympic year in Barcelona) I was told in the hospital Miguel Serrat in Zaragoza, that my bone marrow was in complete remission thanks to the chemotherapy I had been given and that I was now ready for a transplant.
I was admitted to the isolation unit financed by the Josep Carreras Foundation in Hospital Clinic in Barcelona and there I underwent all the tests to prepare me for the transplant.
In my case it was a transplant using my own bone marrow. A litre and a half of bone marrow was extracted from my iliac crests during surgery under a general anesthetic. Afterwards they treated these cells and then transplanted them back into my body. Before this could be done I had to have four one hour sessions of radiotherapy and two nights of chemotherapy. Then when my defenses were at zero they gave me the transplant.
The radio and chemotherapy were very hard but on the other hand I was very happy because I knew that it was the transplant that was going to save my life.
3. One of the worst moments must have been when you were informed that the treatment for Leukaemia could make you infertile. How did you deal with that situation?
The night before they extracted the bone marrow to be used in the transplant, I was in the waiting room of the hospital and I got talking to another patient that was also there to undergo a transplant. She asked me if I had had my eggs frozen because I was going to be left sterile.
At that moment all the happiness I had felt because I was about to have the transplant faded away. I was very sad to find out in this way. Neither my parents or the medical team had had the time to explain it to me.
That night I didn't get a minutes sleep and I went into the operation very worked up, so much so that it was a struggle for them to anaesthetise me.
The following day I told my parents about it and then the doctors. They explained to me that medicine is not an exact science and that they couldn't say what might happen. It was a bad time for my parents too, I was so young and they didn't know what to tell me, although they always gave me hope.
4. Did anybody explain to you the possibilities you would have for becoming pregnant following your recovery from Leukaemia?
After the transplant, when a few years had passed and I was about to get married, I asked the Haematologist if I would be able to have children. She told me that it would be very unlikely because the radiotherapy and chemotherapy I had been given was the maximum that a human body can withstand.
The gynaecologist that was assigned to transplant patients told me that I could put my name on a waiting list for egg donors and it would be possible to have children using an egg donated from another woman. I took note and put my name on the list and then I waited for them to call but without much conviction that I would go through with it.
After having Leukaemia I went 10 years without menstruating but after that I naturally started having my periods again.
5. Did you have to resort to using a form of IVF or did you become pregnant naturally? How did you feel when you knew you were expecting a baby?
I married a wonderful man who, when I told him we wouldn't be able to have children, had told me not to worry. That we could enjoy our nieces and nephews and that he loved me just the way I was.
We went on our honeymoon and when I returned I went two months without having a period, but I thought that this was just down to the fact that they were irregular due to the Leukaemia. My sister bought me a pregnancy test, which made me cross as I had explained to her that I couldn't have children. However, she finally convinced me to use it. I did the test and it was positive. I had become pregnant, naturally!
Susana, two years ago, with Olivia and Juanito
I was so excited. I was in my parents' house when I found out and the first thing I did was to call my husband to give him the news. We were all so happy, we just couldn't believe it.
6. Did you have to take any special precautions during the pregnancy because you were an ex-Leukaemia patient?
As soon as I knew I was pregnant I called Doctor Rovira in Haematology and Doctor Duran in Gynaeocology at Hospital Clinic in Barcelona and they both told me that it could be a completely normal pregnancy.
And fortunately it was. I have to say that I did have some fears because of the treatments I had been given, but at the same time I was also thinking that if God had wanted me to have a child, I knew it was going to be a beautiful child. And so it was. Olivia was born, then Juanito and two years ago, Maria. They are three amazing, healthy children.
7. Now that you have three precious children, what would you say to any women that are currently going through the same diagnosis?
Take heart! It has been nineteen years since they diagnosed me with Leukemia and medicine has advanced considerably since then.
At the beginning you may feel as though your world is falling apart, but with the strength that I'm sure you have, and above all the support of your family and prayer you will recover from this illness.
As the doctors told me, medicine is not an exact science. For many years I was convinced that I wasn't going to have any children, but I was still very excited to have come out ahead and have another opportunity to enjoy life.
Fortunately, there have been many advances to help you conceive a child. It is also possible to adopt an abandoned child and to make them very happy. And if not, there is always your family and the person that you have by your side.
Above all, I want to give you loads of encouragement and to tell you not to break down. You are in the best hands and I have no doubt that they will cure you.
With all my love, an ex-Leukaemia patient that was once just like you.