Dear doctor,

I have a lot of things to tell you. I will make  the effort to bring you into line with me so that we can both see through my eyes, the eyes of a parent, what it is that a parent expects from her child's physician. It is an attempt to establish cooperation and mutual respect between the physician and the parent, and to achieve the optimum result.

Many thoughts ran through my mind before I wrote this letter:

-  Experiences, not only my personal ones, but also those of so many other parents.

-  The necessity for good cooperation amongst us and the possibility of rendering it  more efficient.

-  Understanding, and the way that both parents and doctors can express it

-  Truth, and how much can be expressed without creating any problems

-  Opposite viewpoints and to what extent they overlap

-  Human weaknesses and to what extent these can be surpassed.

-  First of all, allow me to say a few words about us, the parents, who constitute the Parents' Associations all over the world, who we are and what our wishes and expectations are.

We are not anybody special or particular. We are ordinary people, facing everyday life and,until yesterday, we considered the presence of our children an undisputable fact.

And suddenly, clouds darken our blue skies. As simply as that. One day; one morning. The whole of our life and everything that we were trying to build and establish up to that moment is turned upside down within a single moment, without warning, without reason or any cause. We are suddenly confronted with an unbelievable fact: our child suffers from cancer !

Resentment is succeeded by anger and anger by scruples - a chain of sentiments to be endured by all parents under these circumstances. For how long will resentment, anger and scruples prevail? This depends on many factors. These factors are ourselves, our character and age, our education and culture, our surroundings, our friends and above all, our doctors. But we must endure, and so we do.

All of a sudden, from one moment to the next, irrespective of the level of education of any of us, we have to learn what, in fact, cancer means  when a child is affected, which  medical institutions cope with it, the therapeutic options that exist in Greece and abroad, of what chemotherapy consists and what the side effects are, what it means for the patient to have low white blood cells and blood platelets, what the therapy protocols mean and a large number of other things.

In contrast to you, dear doctor, who chose and prepared yourself to become a doctor and the physician of my child, I, personally, was neither asked nor have I ever chosen or ever intended to step into your office for consultation under these circumstances.

The endeavors intended for our children

First and foremost, we are concerned to have doctors with a sound professional training and specialization in this field to look after our children, because, prior to securing  quality of life, we are concerned with life itself for our children. We request that the State establish measures for a continuous post-graduate training for doctors, but also of an evaluation of their capability. We also request specialization studies in the field of oncology, the registration of cancer cases in children, the treatment protocols, the final outcome etc.

The life and death of our child is our main concern and obligation, and, therefore, we believe that it lies within our responsibilities and rights to address any action which concerns and is directed at the child's life, to whatever authority and in whatever direction. 

Prompt diagnosis means prevention of cancer

Allow me to refer first of all to the general pediatric practitioner, as I consider him to be the first and basic factor which may lead to the final cure of our children, because it is from him that we expect a prompt diagnosis, or at least the prompt referral to hospital.

At this point, I wish to mention my personal experience, because I still believe that if my daughter's pediatrician had listened attentively and had looked into my concerns and investigated the matter, if he had been properly informed, if some public factor had obliged him to present himself in hospitals now and then, if he had come across a similar case in his career, then possibly the diagnosis might have been made in due time and maybe, Alexandra would be here with us today. Symptoms were more than obvious (as was ascertained afterwards) and yet he still did not understand precisely what the matter was and, what is more, he stopped us from going to hospital.

Mention of this specific case is not being made just to reopen old wounds. 

I wish that these cases constituted the minority, but - alas - it is not so. Children's lives are lost because their pediatrician is not in a position to understand the cause promptly and because he refuses to listen to the anxieties of the parents, rejecting them before examining them.

The mother's instinct should be followed. It will lead you the correct way. Listen attentively to what she has to say. Changes in the child's behavior lead the mothers to you and you, in turn, should look into the matter and weigh up the anxieties.

The whole responsibility for a prompt diagnosis lies with the general pediatric practitioner. The pediatrician must have the required knowledge and experience in order to gain time: time to start treatment promptly and consequently to have the best possible result. We have been told that pediatricians, while practicing for their special areas, visit and practice in all the departments of children's hospitals, except in the oncology wards, because there is no such special area. But, since there is no such special area, how come there is a department in hospitals? Since, then, there is a department and children with neoplasia are hospitalized there, that means that a pediatrician will not have the opportunity to encounter such a sick child and, therefore, he will not have dealt with a child suffering from cancer during the whole period of his practice, the only chance of his coming across a case of cancer is in the hospital's out-patient department, where, however, the special oncologist pediatrician will be called. The result, therefore, is a child with cancer visiting his practice and the doctor, not having acquired previous pertinent experience and knowledge, often cannot make a prompt diagnosis.

Pediatric Oncologist

My dear doctor, as of today, the diagnosis concerning my child having been made, you will have a permanent place in my life and in my thoughts and your name will often be referred to in my home. We have become acquainted under circumstances so very pressing and unpleasant. However, we are meant to proceed to a relationship based on a common endeavor and cause. My wish is to proceed with all our strength, each of us from a different position and with a different role, in order to succeed in our common purpose - the best medical care possible and final cure, the assurance of quality of life during the time of therapy and the appropriate integration of the child in its social surroundings.

Before proceeding to an analysis of all the things I expect from you, I will ask for your understanding and I will try to make you see why I ask for so many things. I have huge expectations from you, because your job, your profession, deals with the life and death of my child. There is no way back, there is no room for amendments, asking to be excused because of an excessive workload cannot be accepted, mentioning that not enough attention has been given or it has escaped the doctor's notice and therefore, a mistake has been made, cannot be accepted. Our children do not come back. Children are not accounting books to be corrected later on, they are not a lesson with mistakes in the classroom, which can be corrected the following day, they are not a wrong purchase, which can be revoked.

My wishes concerning you

As long as my child is under your care, I am very much interested in and concerned for your well-being in general, both as a doctor and a person. It really is my sincerest wish that you be happy at home and that you enjoy complete personal and family peace and stability. In this way, you will be able to develop all your capabilities and sensitiveness and dedicate all the attention needed to the field of your professional career, the successful course of which is directly connected with the biological and psychological healing of my child and its natural integration in the social surroundings.

If need be, you may bring home - your home - my "case" but not my "problem". Every time a child is lost, I really wish that you will not suffer, but that you will increase your efforts to improve your knowledge to acquire better results. So that your mind may remain open and clear, you must protect yourself  from the pressure of your work and failures.

Meeting for the first time

When we first meet, do not be abrupt, do not expect me to easily accept everything you have to say to me. You should not put me off with an austere, cold and brusque briefing, leaving out any hope. At that moment, you are the fellow person, perhaps you are a parent, please be polite and patient, please respect the tempest that has suddenly befallen my life. From now on we will, unfortunately, meet frequently and daily, so you can tell me what is required. Please, allow time for me to weigh up and recover my strength, to find weapons and defences, to stay upright at my child's side.

You yourself may have seen many parents in this same situation and the briefing of new parents may have become a routine matter for you, but, please, do not forget that it is the first day for me, the first briefing for me and that it concerns the life and the death of my child.

Allow me room to stand, because suddenly my own life acquires a particular value, since now I am obliged to live, for I have to offer my assistance to my child.

Dear doctor, please consider that until yesterday I did not know you, I did not even know what a neoplastic disease meant for children. Until yesterday I did not even know that cancer also affects children.

My mind perceived the "abominable" disease and the unavoidable and awful end of life associated with it. Mostly through television channels and newspapers, people learn to mistrust public hospitals. At the time I was being informed, as a first step and for the first time, my mind went back to everything that I ever had come across concerning negligence and errors on the part of doctors, delays, camp beds filling the corridors, miracles happening abroad and many other things, all of which make me feel insecure and mistrustful towards you and the public hospitals represented by you.

I find myself in a whirlwind, which, if it does not calm down, will not allow me to understand the changes it has brought to my life and let me concentrate and tidy up the ruins left behind.

What I expect from you

My wish is first and foremost that you may set aside any selfish sentiments and that in a spirit of goodwill, you may cooperate and unite forces with your colleagues and attain the best possible results for my child. My wish is that your colleagues be your cooperators and not your rivals. I wish that you may all hold frequent conferences concerning the therapy protocols and their outcomes. If your views do not coincide, you should, please, consult other doctors in Greece or abroad and check your doubts and fears. Please send the specialized  centres a few tests which may prompt queries, and seek a second opinion.

Do on your own initiative whatever the State does not compel you to do. Always be in a state of continuous awareness, revise your knowledge, update the therapy methods, try to steadily improve the nursing conditions, be permanently at the centre of medical development in your field.

Accept the possibility of your being mistaken, admit your possible error in time and don't be selfish, but take corrective action immediately.

Please help me with your behavior to be acquainted with you, to know you, to evaluate your personality and feel secure leaving my child's destiny in your hands. Please, be accessible, friendly and modest so that I may feel at ease and ask you again and again about something I did not understand or  do not want to understand.

My wish is to be treated equally. Whoever I happen to be, a minister or a worker, I am entitled to and wish my child to have equal opportunities to recover and have the same attention.

Please be kind enough to understand my insecurities, to accept my doubts and not be annoyed  when I want to have a second opinion about my child's condition and prospects. If I have been told of a colleague in your field in Greece or abroad, who I think can be of help, do not consider it humiliating - let me ask for his opinion. If I consider that it is to my child's advantage to be taken care of in another hospital, be it either the one next door or in another country, please hand me my child's file and let me go. I can use my discretion to choose my child's doctor and I have the right to do so. If, somewhere, there is a better prospect, an additional hope, you, dear doctor, ought to inform me and assist me in chasing it up. It is fundamental for me, extremely fundamental, to rest assured that I did everything possible for the sake of my child.

Please, think thoroughly before talking to me and be sure about what you have to say. Tell me about your "ascertainments". Your fears and anxieties should be investigated, discussed with your own self and with your cooperators.

Please, it is my wish that I should be listened to attentively. I want to trust my parent's intuition and to have my remarks with regard to my child taken seriously, because they may lead you to useful conclusions for the course of the disease.

Please, talk to me patiently, plainly and clearly, in accordance with my perception and capabilities. Each one of us parents is a unique individual with different capabilities, intellect and education.

Since you are a member of a team, my wish is that you operate as a team and that you discuss your doubts within the team and not with me. My wish is to hear a justified view from you, the result of cooperation amongst you all.

Your professional training is of most importance to me, but this alone is not enough for me. My wish is that, through your friendly and pleasant behavior and your assurances, you may be able to convince the child itself to feel secure and to accept the fact that all the painful treatment and medical tests are temporary and should be carried out for its own good.

Please, pay attention to the child during the final stage, and the child's family. Continue to strive till the last moment. My wish is that you may remember that everything you say is of particular importance both for the parent and the child listening to you. Before starting to talk, think carefully about what you going to say. Pressure on the family is terrific and balances are particularly fragile.

Please, keep in touch with the children who have been healed, be interested in the course of their health, discuss with them their anxieties and fears and answer their questions.

Please do understand that you are a professional, caring for health and I am a parent striving for my child. We are engaged in the same fight but in different roles. My wish is that you respect the autonomy of the Parents' Associations, that you may always be in touch, cooperating with them, for the development of a real coalition to the advantage of all children.

Epilogue

My family and myself have been deprived of the presence of our Alexandra for 18 years. Circumstances have obliged us to live these 18 years without her. Now, after such a long time, we have realized that even those six years she was with us were enough to fill us with experiences and memories for a whole life. The two years we fought to keep her with us, were transformed into the most significant part of our life. For two years, we travelled from hope to disappointment and from heaven to earth. We filled our  hands and hearts, we offered our worship and enriched our life with sentiments never before felt and utterly moving. We were given the opportunity to stay by the side of this child, who, like all the other children of "Floga" developed unbelievable powers, surpassing human nature and teaching all of us who happened to be next to her, what is the meaning of love, strength, self-respect, decency and courage.

A glimpse of life, so brief, yet so intense, a glimpse so tiny, yet so sturdy. A glimpse of an existence never having faltered in our home, because the doors of our souls have been kept wide open, as our embracing arms offered hospitality, with room for all those children fighting their battle, the same battle with the same passion and the same decency.

Dear Doctor,

At this precise period of our life, and regardless of whether we were able to keep our children with us or not, your presence is of foremost significance and most decisive. In all the years to come, you will have a place in our mind and in our everyday life, having found yourself involved in our child's journey and having been related to our child's destiny.

Let these memories be good !

Let us be proud of the presence of our child in our lives and let us remember dearly your passage in our child's life!

Let us be allowed to mourn the passing away of our child, without scruples and doubts for our decisions. Extend to our soul peace and assurance and you will have our love and respect.

It depends on you.

Maria Trifonidis

President of Floga