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Paciente Sara 1

Sara with a big smile and feeling happy

"Hello, I am the father of a survivor and I would like to tell her story. Sara was born with congenital M5 Acute Myeloid Leukaemia, on the 29th of August 2009 (she is now about to be one). At first we didn't notice anything unusual about her, except that she had a sort of a small wart in her anus and there was an almost imperceptible little bluish mark on her groin, which we thought was a little vein. After Sara's first few weeks, both the small lump in the anus and the bluish mark on the groin started to grow until, when she was more or less one month old, 3 more bluish marks appeared on her tummy and so we rushed her to hospital. After spending a whole day there and being visited by all the emergency doctors, we finally came across one who realized the importance of the situation and admitted us into hospital (not letting us know yet what she had). A week after Sara had been admitted into the baby unit, and having been visited daily by an endless number of doctors (at one time I counted up to 10 doctors in the room), the Head of the Oncology Unit came and gave us the news. I still remember that day, I was standing and I had to sit down, I turned white, felt dizzy, with my legs up in the air... Once the problem had been accepted (it was after several days), the doctors, in the hospital's day oncology surgery, decided to wait as long as possible before starting chemotherapy treatment. The wait was due to the fact that Sara's myeloid leukaemia treatment would be very hard and, considering how immature her organs were, that was going to be the best for her.

After three weeks, the doctors said they couldn't wait any longer since Sara's blood levels were quite irregular and her body was covered in lumps (the first ones, which were on her groin and in the anus, were already the size of a walnut), so a central catheter was placed and chemotherapy was started. Three days after starting treatment, the lumps on her body disappeared. After completing the first cycle, she didn't have too many problems, only the usual ones: some mucositis and a drop in her immune system, haemoglobin and platelets. Three weeks rest and the second cycle began. That was when Sara started to feel worse (vomiting, sores, etc...), a prelude to what was coming. 2 or 3 days after completing treatment, and due to the effects of the chemo, Sara had paralysis of the intestine (necrotizing enterocolitis). This meant that there was no movement in her intestine and nothing went from the stomach downwards, which meant that she vomited everything she ate, including her saliva and gastric acid. Caused by enterocolitis, her abdomen began to swell to the point of being more than twice the normal size, thereby causing a pressure on her lungs and heart (she was unable to breathe normally). It was decided that she had to be admitted in the ICU where she was sedated, reassured and given pain killers. A few days later we were summoned (the worst fright of my life) and told that she had to be operated on to cut the necrotic section of intestine and we were informed that if the child survived the operation, she would only do so with a colostomy bag. The operation lasted a very short time; I still remember the look of amazement on the surgeon's face when he told me that no part of her was necrotic and that it was just a generalized inflammation of the intestine, therefore they were not able to do much except drain some of the loose fluid from the abdomen to stop the pressure. She was intubated and connected to the artificial respirator and that was how she spent 34 extremely critical days: sleeping and with the doctors telling us, almost daily, that she was dying. In the ICU, she had various complications (pneumonia associated with the artificial respiration, a collapsed lung, pneumothorax...). On approximately day 30, she did her first poo and further bad news: instead of stools, it was all blood. Again we were told to say our goodbyes to her, that her intestine walls were damaged, nevertheless, after her third poo, all became normal: the bleeding stopped and she was slowly taken off assisted respiration (they tried three times before being able to disintubate her). All progress was due to improvement in her immune system.

At last we were sent to oncology floor (which we had never wanted to go to and yet now it felt so good to be there...). Sara went through a bad batch for a few weeks due to abstinence syndrome caused by the drugs she had been given in the ICU. After all this, she was given a puncture (the doctors were quite worried because it was a long time since Sara had had chemo treatment); however, at the end of it all, she was clear. We were told that she was considered to be in complete remission, that she was to have two further consolidation cycles (slightly weaker) and she would then be ready for a transplant. The truth of the matter is that we were really happy because we were going to be able to continue our fight against leukaemia. We were finally given a date for the transplant in the "La Fe Hospital" in Valencia as it wasn't possible to have one in Alicante. We were admitted to hospital where they performed an apheresis because it was to be an autologous transplant.

Three weeks later we went home. That was 3 months ago, now we are home, with day hospital visits and, so far, the test results are good. Let's hope they will continue to be so because, as a fighter, she deserves it! The message I would like to give is: one must fight to the end, even when you are given very little hope. Best wishes and keep your spirits up!!!"

Paciente Sara 2

Sara with her sister

Help people like Sara by becoming a member of the cure for leukaemia and haematological malignacies, HERE.  You will help us to continue our research so that one day these diseases will be 100% curable.  With only a little you can do so much. Thank you!

Find out more about bone marrow donation, HERE

Webpage updated 06/21/2018 00:33:44