Interview with Ariadna, a leukaemia former patient
Ariadna is 21 years old and she lives in Sant Cugat del Vallès (Barcelona). In May 2009, she was diagnosed with acute lymphoblastic leukaemia and, since then, she hasn't stop fighting.
We wanted to speak with her about her experience and her plans for the future.
- What crossed your mind when you heard about leukaemia?
Ariadna: Like everyone, at first you do not believe what they are telling you. It is true that, in my case, I knew something was not working well in my body because I was not feeling well (bruises, tiredness, paleness, less appetite, lose of weight...), but logically, you never imagine a diagnosis like this, and even less so when you are 18 and you have your life ahead of you. The three first days were the worst. I had to get used to my new situation and I had to learn about my disease. Leukaemia is a familiar word, but not many people really know what it is. Finally, once I prepared myself mentally, I only wanted to fight to get out of it as soon as possible and with the fewest complications.
Ariadna, in the Camp Nou two months before diagnosed.
- What was your treatment like?
Ariadna: Once they named my disease (acute linfoblastic leukaemia – ALL), I had a cycle of chemo that would help them to categorize it as ALL standard or ALL high risk, according to the evaluation on the 14th day. The lumbar puncture on the 14th day showed that my marrow was affected by more than 10%, so according to protocol, my leukaemia became a high risk ALL. Since that moment, they started looking for a donor. I had another chemo cycle (induction) and the consequent lumbar puncture a month later that surprisingly showed a full remission both in the marrow and peripheral blood.
Although my marrow was clean after the first induction session, they continued with the process and I had three more cycles of consolidation. After them, theoretically, I had to receive a transplant in the Hospital Clínic of Barcelona. At the beginning of August 2009, my brother Oriol who was 9 was tested for compatibility. He is my only brother and although he behaved bravely when he tested his blood typing he was not compatible (nothing strange as the siblings' option is only a possibility in 25% of the cases).
The search through REDMO started and, in the meantime, as a donor did not appear, I had 3 more cycles of consolidation. Once these cycles were over and as I was waiting for the donor I started the maintenance chemotherapy. From January to June 2010 I was taking oral mercaptopurine (daily), intravenous methotrexate (one shot a week) and I went to the day clinic once a month for Vincristine and L-ASA (if I remember correctly) and the intrathecal.
During the treatment
One day around April 2010, I went to the Mutua Hospital in Terrassa to visit the nurses and doctors who had been very nice to me and my doctor said he wanted to talk to me. They had found a donor and I would have a bone marrow transplant around June. He was a 32 year-old North American guy and he was 100% compatible with me, as a twin, they said. At that moment, I felt happiness as I had the donor, but at the same time, a big sadness because I was feeling great with the treatment and I had been in full remission since July 2009 and I didn't want to go back to hospital.
Once I prepared myself mentally, I started preparing for the transplant. I did all the tests and when the doctor at the Hospital Clinic was going to tell me the exact day, I was informed that the donor had "disappeared". This was a really hard blow. I first suffered the anguish of looking for a donor; then I prepared myself mentally so that the chemo was working and I maybe would not need a transplant; after, they told me I had a donor and, after all that, he had disappeared.
When you become a donor you must have it clear that you cannot change your mind if the donation is not to a friend or a family member... you became a universal donor. It is very hard when they say you have a donor, a solution, and then, drastically they take it away.
During the treatment.
In the end I went on with my maintenance. From June 2010 to June 2011 I have been taking mercaptopurine daily and methotrexate weekly. The last lumbar puncture was June once I finished with the chemo and, since then, I visit my haemotologist every 3 months for some routine tests to see how is everything going.
Ariadna, at present.
- How is this waiting period? What do you think about?
Ariadna: I do not think my HLA is difficult to find, but the range of donors and therefore, of possibilities is not that big. In Spain there are a lot of possible HLA combinations, probably due to all the people that have been to this country. If it is difficult to be compatible with any of your family members, it is even more difficult to find someone outside your family, as there are a lot of possible combinations. To me, at the beginning, it was incredible that a person with my same HLA so far away from me could exist. I also must say that I work best with words and my knowledge about genetics is minimal. Waiting is very hard. In my case, the transplant has never been an urgency (luckily, let's cross our fingers so that it never is), but there are many cases where it is a matter of life or death in a short term.
- What would it mean for you if one day your doctor calls you and tells you: "there is a donor for you"?
Ariadna: To be honest with you, for me, right now, it would be a real bugger (sorry about the expression, but it is the one that describes it most) as my blood tests are fine, I have been in full remission since summer 2009 and, more importantly, I feel very good. Maybe in my case I am cured with the chemotherapy... I have always been a very optimistic person and, when they told me that the donor I had was not there anymore, I thought "maybe he was not for me; maybe in my situation the transplant is not needed".
It is inevitable waking up everyday thinking about any aspects of the disease, and always the fear of ... what if it appears again? But it is very hard living with that anguish, so it is better living in hope.
Ariadna, together with Bianca and Lucía, two ex-patients of leukaemia who have both received a bone marrow transplant from a non-related donor, at an event of the Foundation.
- What would you say to a person who is thinking about registering as a donor?
Ariadna: I would tell them not to think about it and just do it. You never think that it can happen to you or to your loved ones, even less when you are young, but the truth is that this disease is random.
At the beginning, the words BONE MARROW DONATION command respect, but if you informed yourself, you really realize it is not such complicated as it is believed. You can save a life, a person who will be grateful to you forever and who will depend on you to continue living.
- What do you ask for the future? What are your plans nowadays? Have your values and dreams changed since you were diagnosed?
Ariadna: I really do not ask too much. In my case, to continue as in recent months, to enjoy a healthy life with my loved ones, to continue studying, and to travel if possible, etc.
After a diagnosis like this, there is always a mental change. You value more some things, for instance, being able to live every day, and you do not give much importance to issues that might have been significant before but are now small and not serious nuisances.
In the future, related to the disease and bearing everyone in mind, I would like to continue collaborating with the José Carreras Foundation and other entities to attract more bone marrow donors, to teach from experience about the disease to patients and family members, to raise people awareness of the importance of becoming a donor, etc.
Find out more patient's testimonies HERE