Carlos' story 

 

   My son Carlos was 4 when he was diagnosed with Burkitt's lymphoma. Now (2013) he is 25 and is completely healthy, he lives a completely normal life, he goes out with his friends has a girlfriend, works, practices sports and enjoys life!

 

I have decided to tell our story because I believe that since so many years ago have passed since he was sick and he is so healthy now it would be helpful to other parents who are now going through this process it may give them hope and optimism.

 

A few days before he was diagnosed my son had a blood test done in preparation for a minor operation. When he was discharged the doctor told me he had a bit of anaemia and that we should ask our paediatrician for an iron prescription. It turned out that the anaemia was caused by a very aggressive non-Hodgkin lymphoma (Burkitt), he had a mass in his abdomen that was doubling in size every day, oppressed his only kidney and his bone marrow was also affected, it was in stage 4.

 

The diagnosis was a devastating impact, we could not believe it, when we entered the oncology floor of the “Hospital 12 de Octubre” (Madrid) that night, I thought the nurse had taken us to the wrong floor, we should be on the surgical floor, even though the doctors had told us that it was a tumour, it was hard to assimilate that the "tumor" was cancer. What word was so hard to associate with a child!

 

We have another daughter, Sara, who was 7 years old then. Thanks to her grandparents our home continued to operate, they made sure she was taken care of with loving care, at her school the same occurred.  Fortunately, her teacher knew first-hand how this situation affects siblings since she had two children and one had had leukaemia as a baby and had been cured 8 years earlier.

 

The following days were very difficult and confusing, the fear, the flood of information you receive along with the uncertainty, we began to move in that slippery slope that is the "survival rates", which in Carlos ‘case was 50% . When I told the doctor that was very little, he told me that it was little or a lot depending on which side he was on. At first I was surprised but it helped me to understand that he was right, that whatever the percentage, it was better to concentrate on each day positively believe that the treatment would be successful.

 

Chemotherapy treatment was six months, in which we left the hospital about 4 days a month. He had pneumonia at the beginning and at the end of chemotherapy and very severe mucositis which made it impossible to eat and even talk at times, the typical fevers and an intestinal obstruction that led him to the operating room at the end of the cycles, but despite all this he made it, which is what is Most important!

 

I can never thank everyone enough; all the staff of the Hospital 12 de Octubre, the nurses, doctors, auxiliaries, kitchen staff, volunteers and everyone there for their good work, for his sensitivity and the patience and care with which they treat children and parents, sometimes we were a bit overwhelmed by the situation we had at the time.

 

The close coexistence with other parents was one of the main supporters, the relationship of love and understanding so intimate that was established in the hospital every day making them our "other family". Among us all the atmosphere was generally very positive. In fact my son remembers many good times, although he remembers how painful the lumbar punctures were at the beginning and end of each cycle because 21 years ago they were very painful. Although it is true that children see much more than we think. Many years later one day, Carlos told me: “Mom, do you remember when I was sick? You thought I slept, but I sometimes saw you crying.”  You need to release tension at some point while at the hospital and I did it when I thought he was asleep, the rest of the time we played, we laughed, we made plans ... everything to keep us busy. I never thought that he was aware of these emotional "breaks" that I took from time to time.

 

In total we were in the hospital about 7 months, at the time I was wondered what happens next, what kind of life do children live once they are cured? Can they live a normal life? What did the future hold, would he have limitations, how long would the check-ups go on for, would he be able to take part in sports…? Some of the concerns were medical but others were more practical aspects. I especially would have liked to speak to a parent that had been through this to tell me what happens “after”. Fortunately, I have seen for myself that everything goes back to normal. At first there are very frequent check-ups, then they become less frequent and finally one day you get the all clear. Yes, ten years after finishing treatment, Carlos got the “all clear” from the oncologist team!

 

It is true that if I could choose, I would not have had this experience, but it is clearly not a choice. I think that this experience helps us to see life differently and to upgrade our priorities. As time passes you may find yourself upset or worried about things that are not important, you might stop enjoying one thing due to another thing that is not worth it, thanks to what we have experienced, we can stop, take a brief look back and re-adjust the present situation. Five years after my son’s illness, I had breast cancer and I can assure you that with those two experiences I have learned; to live better, to enjoy everything that life offers to the fullest and to be extremely grateful to be here!

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