My name is Sandra, and I´m the mother of a survivor, María, who could celebrate her seventh birthday last 13 May thanks to research.
When María was four years old, she was a strong, happy and playful kid, just as many others, just like your own kids. However, the 29th of September she was diagnosed with leukemia. Her oncologist was the one who gave us the news, in a little room at Saint Luisa´s Gallery, at the Niño Jesús Hospital. He told us there were two types of leukemia, lymphoblastic and myeloblastic (or myeloid). This last one was the worse, but we had to wait for the results of the puncture to know which type she had. He continued telling us different things, but after all the explanations the only question we asked was if Maria was going to be cured. He told us he couldn´t assure anything, that it depended on different factors and then he started talking about percentages. When the visit finished we could only ask ourselves why, why our daughter, why María, WHY.
The next day the oncologist confirmed that the leukemia was myeloblastic, but that there were still some results pending, that could take some days or even some weeks. From that moment on, her only hope was to have a strong chemotherapy treatment, at least four cycles. He told us that this situation was a war that started that day. We started to moan sadly for the type of leukemia, but that was only the beginning of the bad news still to come.
María, during her treatment
During the first cycle we discovered that Maria was not good receptor for standard chemotherapy. The blasts, "the bad bugs" as Maria called them, did not diminish. Her oncologist, while she was low on defense, and isolated in room 14 of Santa Luisa hall, put her another chemotherapy cycle. There were some kind of blue things, and they told Maria, "Look, the smurfs' chemotherapy".
The days came and went, and the results we were waiting for arrived. One of the tests was positive. Maria had the FLT3 gen duplicated in tandem. This were very bad news. This meant that her leukemia could only be cured with a bone marrow transplant. Therefore, they did some tests to us, her parents, and to her little brother, who was only two years old. Any of us was compatible. More bad news again. So we ad to put her in the Fundacion Josep Carreras database for the search of bone marrow donors.
After some days of her second cycle, Maria started to feel very bad. She was indeed very bad. On Wednesday 4 november 2009, her oncologist told us that if she continued like that he would take her to the Intensive Care Unit. Being without defense the leukemia was getting more complicated, and Maria continued to be worse and worse. If she was not feeling better in 12 hours, he told us to await the worse.
He was coming to our room every ten minutes for some hours. He tried a lot of things, fitting her with catheters; he even put a nurse only for her. Although our pain was incredible, we were worried about him, because everytime he entered the room he seemed to be also feeling worse about our situation. And meanwhile, Maria was losing her life in that bed in Santa Luisa.
However, suddenly, like in the Films, her dear onclologyst entered the room and said: "!She is starting to recover¡". The following hours were full of nerves, but finally Maria started to react and in the end the oncologist told us: "This girl really wants to live".
María, at her room in the hospital
The days and weeks were coming and going, as well as the chemotherapy cycles and the small frightening moments. The 6th of January 2010 they told us that there were 2 or 3 marrows that could be useful, but after some tests they told us that there was no possibility, that they were rejected, so we were the same than at the beginning. Worse, because without a compatible marrow, there was no possibility of healing.
María was running out of time: the chemotherapy treatment had finished and we were still without marrow. Then, again, her oncologist told us there was a research project that had a new therapy, in phase of experimentation that consisted in doing the transplant from the father or the mother. It was called "haematopoietic transplant from an haploidentic donor". He told us about NK cells, and many other things that we did not understand, although we said yes.
In any case, they stated very clearly that she had very few posibilitéis, that FLT3 is a serious matter; that altough all the research, there was nothing clear for the momento. In fact, another oncologist told us that most probably it wouldn´t work. And Maria´s oncologist told him: "We have to do it, and we have to do it INMEDIATLY".
We were clinging to that last chance and with our hopes in Maria´s oncologist, that have proved during these months that if there was anything he could try, he was going to do it.
On Tuesday, 16th March 2010 they did the transplant. After some weeks, after making another puncture, they informed us that the gene duplicity was broken. It is impossible to write or say how we felt when they told us that the test was negative: the transplant had worked. It had done what it was supposed to do.
María, during her stay at the hospital, received different visits: Cantajuegos, Real Madrid´s soccer placer Kaká and Carmen Lomana
During all this time Maria nearly became an adult, because hospitals are made for adults. She turned 5 years old on the most difficult day from her short life. However, on Christmas 2011 she had the best of the gifts: going back to school, and above all, her brother Paris came back home. Slowly she was recovering more and more, and on her sixth birthday se went to bed at 23.30 !and said she was not tired¡
As many of you that areReddingthis testimony, we never believed that we could have to suffer this experience, and above all with our daughter. We had always seen cancer as something far away, "that happened to others". When we go to the hospital for checkings, we discover in the faces of the parents of other kids the fear and insecurity that we had for many months.
Maria and Antonio, her oncologist
When we get up every day and watch Maria, we feel that it has been a miracle, and then anything matters, the hardness of the illness, nor quitting the job, having economic difficulties...collateral damage that Maria settles back with barely a smile.
This is the story of Maria´s illness, and with this story we want to say to all the other families with this problem that they must never lose their hope, as well as to give them our inconditional support.
Sandra, Maria´s mum.
If you want more information about the donation of bone marrow to help people like Maria (and many other patients) to have the opportunity of a cure, click HERE. Remember that the donation of bone marrow is altruistic, anonymous, and universal. If you register as a bone marrow donor, you could be making a donation to a person from anywhere in the world. If you want more information, write to [email protected] or call us on our free phone number (in Spain) 900 32 33 34.
You could also become a member of the José Carreras Foundation. With a little amount you could help us to continue our research.