I think that people who came through life without having become parents or not having felt parenthood, are not aware of the depth and the extension of human feelings, which constitute the real essence of life.

For all that I am going to say I have had no recourse from any bibliography. It is a statement of the soul. A common soul, that of my husband and myself, also that of the parents of Theodora and of Christos, that of the parents of Michael and Steve and of so many other parents we encountered along the way.

The final stage

Having to give a definition as to what the Final Stage is, I would specify that period of time which begins following the last relapse until the last moment.

The time period between the diagnosis and the relapse

A certain period of time has lapsed since the diagnosis. The parent has pulled himself together, all the bits and pieces of a broken heart and, as far as this is possible, has restarted the course of life and family. With all the strength at his disposal, he focuses all actions and interests on one and only point: this specific child. He is being informed of the sickness and  of what he is expected to do, he follows the doctor’s advice faithfully, reads everything pertaining to this matter that he may come across and  tends to believe that he has become the healer of ”that and only sickness”.

Subconsciously he has already engaged himself in a phase of ”preparation” to meet the final stage, without his knowing it or his accepting it. If all turns out well, this preparation, which will precede, will intensify the feeling of victory and relief.

If however, things do not turn out as expected, such preparation will prove even more substantial. Where a subsequent relapse seems the last limit of endurance, the distressed parent ascertains with surprise that he can still endure, that he is still there to be confronted with, because somewhere in the back of his mind he has been prepared for such an outcome and he expected it.

The relapse

The time of the relapse contains less surprise than insupportable death pain.

The parent’s attention is not at this time conveyed in efforts to learn, to ask, to pull his shattered self together.

He is now aware of everything he could amass to learn about the ”illness”, the ”relapse”, the ”possibilities”. Hope is reluctant to follow him anymore. He is now face to face with the truth. He himself, the possibilities and all doors closed. The events, the medical examinations, the tomographies break him to pieces. Belief in a better outcome, which hitherto was his living breath of air, has now abandoned him.

He has to relocate his attitude towards the enemy. The enemy is in the advance, the battle, however, has to be continued. A change of tactic is required. The moment is crucial. He either:

*   Conforms  and cooperates with the doctors or he reacts and considers them responsible for the relapse

*   He sometimes visits the various medical centers overseas

*    He often runs to religion and visits one monastery after the other

*   He also turns to and seeks other methods of therapies and remedies

*   But there are also those who leave the battle and simply expect the inevitable

Though nature does not provide everybody with the same potential, the same amount of knowledge, or give the same opportunities, it expects from everybody the same capabilities, when it allows everybody to face the same problem and to feel the same pain.

After the relapse

The presence of our child, after the conscious acceptance that this will be ”temporary” becomes particularly valuable. It suddenly assumes overwhelming proportions and, as long as the parent lives in the company of his child, he feels so overflowing of his presence, as no parent of a healthy child would ever feel.

Within this very short lapse of time, the parent will concentrate the events, feelings and experiences of a whole lifetime. Every moment is special, every hour is of importance.

These are the moments, these are the hours,  which are to become our remembrance to fill our lives ever after and to keep our child alive in the inner self for ever.

Our children, being transformed within this period of time into little ”Gods” in our hands, enrich our life with feelings unknown to us up to this moment. Joys to be experienced at this stage of our life, which I would characterize as a ”waiting” stage, are unique.

At this period of time we sip insatiably the presence of our children, we make every moment worth living, we stand abreast, we assist.

Our existence on earth has acquired a decisive element, a clear destination and meaning.

We stop the lapse of time. Because at this stage we can now prolong the days, extend the hours, live now only in the present, leaving the dim future lingering thereafter, whenever it comes.

Medical and paramedical personnel

All medical and paramedical personnel ought at this time to have a distinctive presence instead of disappearing, considering that their assistance in offering any therapy is of no avail. They should forget to act only from a sheer professional aspect and should stand by with kindness, clarity, politeness, earnestness, patience and respect opposite the psychological tumult of the parental soul. The child is still here. During the doctors’ morning visit, no change  should make itself perceptible.

The final stage child does not need doctors with sheer professionalism and rigid behaviour. A doctor of this delineation could become a microbiologist, a dentist, an obstetrician or whatever else.

Here we are dealing with a child leaving us. In such a case the contact of parent and the child with the doctor is on an everyday basis. Here a relationship of dependability is being built. The doctor’s presence will play a catalytic part in the final stage quality of life.

The doctor’s presence will assume a place of dominance in the life of the whole family.

At this stage the parent has a complete need of assertion that he has done whatever was correct and precise. The future life of the parent and the family as a whole, will depend greatly on the doctor’s stance and the assurances he extends.

The oncologists, hematologists and pediatricians should follow special courses in psychology,  most of all they ought to possess inborn humane traits.

Pain

Pain is the most basic element in defining this period of time. If the child is in pain, everything the parent endeavors to build comes to pieces. The distressed parent has by now learnt to accept everything, even the approaching end. But he is incapable of sustaining his child’s being in pain. All forces, gathered with so much effort so far, are abandoning him. Allow me to refer particularly to the issue of pain in stressing the point that science and the medical staff have not as yet focused their interest thereon as much as they ought to, and the cases of children suffering pain are of a quite large number. It is, at the very least, unacceptable in our times to let children suffer pain. The science of the 21st century owes these children at least such a relief.

Siblings

Siblings, amidst an avalanche of events, remain bystanders of the evolving situation around them, sometimes in silence, sometimes reacting and creating problems, in order to attract our attention, since there is no other way to achieve it.

We parents in our anguish, forget that all children have the same rights. We inflict on them, without our knowing it, fears, guilt, remorse, fatigue and misery. Their tender childhood years will always bear the marks of the era and the impact thereon, whether positive or negative, will be unavoidable. The best way to face the situation is to involve them in our ”problem”. But which parent can think and act rationally under the burden of so many feelings and events?

What we all should and can do at the very least, is, I believe, remember now and then to ask to be excused by our other children and request their understanding for our partial behavior, while at the same time providing the necessary explanations to relieve them of their remorse and fears.

At least that is what I tried to do a very few times of course, and I believe that today I have a son with no psychological problems, while establishing a strong and tight relationship with him.

Grandparents, uncles and aunts, close friends

Pain for 24 hours a day is just too much for us parents. However, the persons close to us suffer with us too and their assistance is valuable to us. Their being present at the threshold of our pain and lending us a shoulder for our tears make some of us – I wish I could say all of us – luckier than others.

Wider environment, neighbors, far relatives and friends

Communication with all these groups of persons may gather for the parents assertions and experiences concerning human nature, which few professional scholars may proclaim to possess.

Fears denude the wider human environment and the parent, and the child as well, are often compelled to face pity rather than love, curiosity than interest, mercilessness and indifference than assistance, sometimes even racism.

It is better for the wider environment to remain ”wide”. Any effort at conciliation will prove to be at least ”false” in my opinion, creating rather than solving problems for the parents and the child alike.

The School

It may be the case that psychologists recommend at this stage – depending on the condition of course, that the physical state of the child still allows it - a return to school.

The child must be free at least to follow its wishes, without intrusions.

The child is entitled to determine its life and do what it really wishes to do. If however, the child decides to follow classes at school, the parent is called to face additional problems regarding the smooth rehabilitation of the child at school and the problems of illnesses, low leukocytes etc.

Home Care

The child’s right to remain within its ”private quarters” during the final stage period is sacred. The child, if it so wishes, may at this stage have required all medical care at home. It would be ideal for a unit to exist constituting doctors, paramedical personnel and psychologists to visit and care for the child at home.

The parents will then be able to offer all their loving care to the child and enjoy moments of peace and serenity alone with their child, away from the hospital’s unease, which distract their attention.

Financial contentedness

The parent at this stage is not capable of working, while the child’s needs, as well as those of the family, are increasing.

His wish to provide every possible comfort and the best living conditions that exist to his child is impressively moving.

If there is no money at hand or other ways of providing a decent way of life to the child at this final stage, the parent undertakes an additional burden. When not in a position to meet the child’s requirements, he is brought face to face with sentiments of absolute distress.

The last days

The parents have now only one point of interest. Wars, fires, revolutions, all those events characterized by other people as ”news” do not reach his ears. His other children do not reach his ears. His other children do not persist in his thoughts, the remaining family has no need of him.

At this period of time, this child is here. He desperately endeavors to improve the living conditions. To alleviate pain from the child, if there is any, to make the child smile, to prolong lifetime.

He reacts by shouting, crying or staying mute. He has gone so far as to be capable of living by allowing only part of his head and mind to operate. His thoughts are full of what he wishes to do or is able to do. And he persists. Human nature has by now summoned all the defense mechanisms at its disposal because, in the end, one can endure to the extent one is required to endure.

The final moment

The last moment is the beginning of another, the aftermath of a struggle, which will  follow the parent till his own final moment.

The aftermath

The loss is ours, the grief is ours, the child is ours. Time has come for us to mourn as long as we wish to. Time has come for us to accept that we suffer. Now, after a long time, we have ”the time” to cry. The time has come for us to be free, free to mourn and grieve, to bleed, to dissolve the material part of ourselves of effort and pain.

The assistance extended to us by our close friends and relatives should bear the essence of our own requirements and not that of their personal beliefs as to what would be right or wrong for us.

We sometimes cry as much as we can. Sometimes we stay still, confined to our inner self and sometimes we engage in endless talk. The idea of a second life, the continuation of man’s spiritual nature, sustains us. Certain dreams, mixed with fantasies, between awakeness and sleep, provide us with a task.

From one moment to the next, we find ourselves with empty hands. The endless days and nights over the patient’s pillow are left vacant. We do not prepare dinner, we do not wash his clothes, we do not give medication on time and our mind does not have to cope any more with leukocytes and red blood cells for the day. Our continuous effort to find more time has no response, no result. Our everyday time has switched from being too short to being endless.  Our remaining children do not bother us. Our family is so distant.

Time

”Time” brought us nearer to the end, and the terminating hour.

Time snatched us from our own mother’s arms, made parents out of us, deprived us of our children and we now await for it to lay out our life in the future and heal our traumas.

Today, after many years

My son, my husband and myself, the family, friends, work at the parents association for children with cancer, shopping, summer holidays etc. – this is all very normal …

But also:

Moments of loneliness, meditation and remembrances. Moments when the key of the heart opens the door letting reminiscences overflow as a torrent into every corner of my life. Moments when I re-live everything I have most lovingly treasured and kept dearly in the depths of my soul and I emerge from there renewed and ready to go forth.

Today, 18 years after my Alexandra passed away, I consider myself lucky for having even for only six years filled my hands with this child and offered to her my adoration, this child, which brought to my life with so many never before experienced and deeply moving feelings, and taught us what braveness and dignity means.

Maria Trifonidis

Floga

Parent Association for Children with Cancer

Athens, Greece