Maria C's story
Throughout life we make a small collection of "dates to remember" ... those we never forget even if you're very forgetful like me ... one of them is August 25th, 2010 ...it is the day my oldest daughter Maria was diagnosed with acute lymphoblastic leukemia ....
August means holidays .... in those days we were totally oblivious to what was going to happen to our lives ... Maria was seven and a half ... she is the eldest of my three children, she has always had an insatiable curiosity and inexhaustible activity ... why in the world in recent weeks, she had spent the day lying on the couch, why when you proposed a trip she said she was tired, we went to the pool and she would just lie on the towel, she´d begin playing and after two steps say she was tired. Also after two weeks on the beaches of Cadiz her brother and sister had a beautiful tan but Maria continued with that white winter paleness. All these questions added up until one day we abruptly found an answer that clarified everythjing ...
Seven days earlier, August 19th Maria awoke with a sudden high fever of 39 .... as any mother I mechanically gave her a dose of paracetamol and without concern I went on with the thousand and one tasks the mother of a large family takes care of every day ... the fever persisted past mid morning .... she must have tonsillitis, or an ear infection or similar I thought ...In the clinic in our home town they said it was a virus and that in a couple of days the fever should have disappeared ... it was not so and in the second visit to the clinic the diagnosis was the same VIRUS ... but for some reason (every mother's sixth sense) I decided not to go to the clinic the next time but rather the ER at the Children’s hospital Niño Jesús in Madrid ... where it all started ...
The doctor who attended felt her abdomen and noticed she had a swollen liver ... they did blood tests and what was my surprise that the first doctor that came to see us was presented to Dr. Hernandez, an oncologist (?), With the results of the blood tests in her hand ... and bad news ... she suspected that Maria did not have a simple virus at all but something in the blood and we were admitted into hospital so a spinal tap could be done the next day ... total disbelief.
At that time I didn’t realize what this meant .. we were admitted to the oncology ward, the first slap in the face of many more to come ... in the morning they did the puncture and in less than an hour we were called to the doctor’s office ... Dr. Hernandez again ... and again ... bad news.... it would be the first time I heard the words “Maria has Leukemia “... ...I can’t remember most of what she said to us ... just ... it was impossible to stop crying ... I remember the Doctor squeezed my hand and said “not in front of Maria” and so I didn’t cry in front of her.
The first few days are a whirlwind of events ... everything is new ... you cannot draw on previous experiences because, I insist, that what you live every moment is far from what was your life until then ¨ ¨ ... I think that it is of no help at all to dwell on thoughts and questions such as: Why is this happening? Why my child? You have to take in the situation and the sooner the better ... it is time to put on your “camouflage suit” and fight!
When they tell you that the treatment takes two years it seems like an eternity ... so when I talk about this topic I always say that this is like a marathon. Every parent, relative, friend etc ... will live this situation in a different way ...there will be the “agonizer” that sees everything black, which makes a big deal out of any minimal complication, which will cry every time they come to visit you at the hospital .... the “guardian angel” that is always available to lend a hand with the family logistics, and the “positive one” that whenever you see them they will smile and give you a big hug you and they know how to turn the most difficult situation into a positive one (an art) ... My advice, avoid the first, they are toxic, it is the last thing you and your family need. Let yourself be helped by the second one and load up with positive energy from the third one , you will need it.
As I said before, this is a marathon race... in my case I decided to consciously or maybe it’s a survival instinct I am still not sure ... to live day by day ... that is, approach each day and think of no more than the next 24 hours. Each day is a different challenge ... my daily thought was: what cards are we playing with today? and depending on which I got that’s how we dealt with each day... this procedure helped me a lot.... but I insist that this is just one more way to experience the illness of a child ... it is just as valid as a mother who is able to make an Excel spreadsheet with all the data of the disease, or which are able to recite the results of the last 10 blood tests, or has researched online all the information or long term side effect ... everyone has to find what helps them more.
The first weeks at the hospital were emotionally the most intense .... also accepting that your child has cancer, you have to reorganize your family from top to bottom ... and more when you have more children as was my case, the other siblings deserve attention ... so it is important to accept help by the people around you, by those “guardian angels” I mentioned before. You also need to take a break if someone you trust offers to stay in the hospital one afternoon accept the offer, I refused at first but you need to clear your head and get some fresh air, I did eventually. I knew something was not well when I agreed to take a walk and I was surprised to see the street full of healthy kids!
Maria talks up a storm ... I don’t know who she takes after ... so those first 4 weeks that she was isolated, I recall as mentally exhausting, she had thousands of questions that I often did not have answers to ... but between the two we established a routine that now I remember fondly ... I proposed given her inexhaustible desire to communicate and express herself, to keep a diary ... every day before going to sleep ... she wrote a few lines which helped her. Not long ago she asked me to read it together ... and oh boy! in addition to what she did every day, she wrote her fears which were many, her desire to leave the hospital to do a thousand things, her feelings ... well I think it was quite helpful for her ... and when we read it together and we laughed and we hugged each other close.
This disease is a roller coaster ... there are days that are up (when everything goes reasonably well) and others down, when you have the dreaded complications ... the worst time was when she suffered from septicemia Maria was on day +35 of her treatment ... we had were told Maria would probably not survive, they were hard days, we saw her connected to tubes and wires everywhere , it is an image I will never forget ... I won’t forget the wonderful professionals that took care of her the intensive care unit, I can never thank them enough for their good work and humanity ... in those very difficult days I was accompanied by those close to me, friends and family I very much appreciated their visits, and constant encouragement and prayers, without them and Faith we would have been completely defenseless against so much pain and uncertainty, against all odds Maria came through, her recovery was slow, until her kidneys, lungs, heart, regained functionality... but time heals everything and today the only proof that this occurred is the shocking report from the ICU, she has fully recovered.
The other complications that appeared were drug intolerances and some infections, one caused by a very aggressive bacteria that entered her port-a-cath, fortunately there was a solution for all of them that while lengthening our stay in the hospital they were overcome.
It's been two and a half years since diagnosis, Maria is fully recovered, we have check ups every three months. Looking back I feel closer to the saying ”you don’t now strong you are until being strong is your only option” it is real as life itself ... this disease that no doubt leaves a mark on both the child and that of our people around them, and you have to fight every day to make that footprint as positive and enriching as possible, I think you can do this, you just have to try and make an effort.
I would like to thank the entire team of oncology at Hospital Niño Jesús, such a professional and wonderful team that treat hundreds of children, every year. Thanks to Dr. Hernandez, Dr. Ruano, Dr.Lassaletta, residents, nurses ... without them the recovery of Maria would not have been the same....... what’s more so positive was their influence that she dreams of becoming a child oncologist and working on their team... ... Stockholm syndrome? ... well maybe, but as a mother it makes me think that something must have been done correctly to have taken them as references ...
My last words are for
1) the hospital moms. They are the best gift in all this madness! By sharing our children’s illness with them we have built unbreakable bonds.
2) All the associations that help kids with cancer and are present in the hospital, especially the foundation of Aladina that from the moment we set foot in the hospital they took our hand and kept beside us all the time.
Childhood cancer can be overcome, this is just one of thousands of cases each year .I hope that you, mother or father who are now in this struggle may soon tell your own story of survival, until that day comes remember that your child will see this disease through your eyes ... so do not lose your smile in front of them, nor the opportunity to continue educating them, the disease offers many opportunities to learn values and fighting spirit, capacity for suffering, to be brave because only one that has been scared and overcome it can be considered brave ... to learn empathy for other patients, to see the glass half full etc ... make the best of it !