The Sharpest Pain

By João de Almeida (Grandfather and Godfather)
The sharpest pain experienced by human beings is, without doubt, the loss of a loved one; and above all, the loss of a little child. That is the way we have experienced the loss of our granddaughter. A child so long waited for, so dear to all, and during her short life so capable of mobilising great waves of affection and solidarity, as she struggled bravely against a malignant tumour.

It so happened that - for reasons still hard for us to fathom - all that great current of hope, supported by the power of prayer, that time and time again seemed to overcome a series of cruel obstacles and setbacks, was in the end frustrated. And yet this wonderful little creature, so early on in her short life, showed indomitable strength, and power of personality - all the attributes we honor and value in our fellow human beings.

At this very time when our emotions still seemed torn between the pain of loss, and the sweet memory of those final glances we exchanged with our brave little girl, a powerful idea began to take shape. Why not create an initiative, in memoriam, to benefit other children suffering from the same disease as our dear little Stella? These children, whose circumstances might otherwise prevent them from receiving proper treatment, would have the chance to enjoy healthy lives.

And so we began to look at this whole experience from quite a different perspective. The earthly life of Stella Demarco, although so painfully short, might be seen as an important mission. We could now see her as an angel, who stayed with us briefly for a very definite purpose. Her mission was to open our hearts to love, to bring loving kindness for the human race.

And so it was that we came to justify to ourselves how such great pain could be transformed into the highest of sentiments. All with the purpose of bringing life to those who suffer like her. It was she who, as an angel carrying the divine light, would help to light the path for other sufferers. For all those children whose lives seemed ready to slip from God's hand; and for those suffering family members who might be tempted to lose hope when faced with a coming tragedy.

It is our deepest wish that this initiative, which we see as an example of solidarity toward less fortunate children, should benefit from the full support of all people of sincere heart. And we, the grandparents who have shed so many tears for our darling granddaughter, will have the comfort of knowing that we have done justice to her memory.

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"I've been working with children in pediatrics units for 15 years. I see each child as a challenge because each has a different relationship with the nurses and doctors. Most of them cry during the procedures, but then start laughing and sending kisses to the nurses - that's so rewarding. With adults, reactions are quite different to those of a child because they are more aware of what is going on with their treatment, and may understand the risks involved."

"We try to focus our care on the parents too, because they tend to suffer much more with the implications of the diagnosis. Often they feel quite helpless. That's when we specialized nurses or doctors come into our own: we're here to create a reliable professional relationship with the children, but we also try to make parents feel calmer about the whole situation."

"That's exactly what happened with Luís Roberto and Patricia Demarco. Right from the start he was closely involved as a father; he learned how to trust us, and this was very important. He showed us he believed we were doing well and trying everything we could to save little Stella. She was a very sweet, lovely and kind girl: She used to light up the place. To tell you the truth, most children can do this. Yet she always stood out as special. She was a wonderful girl."

"Working with children just like her was the reason I've always wanted to specialize in this area. Now I'm trained as a pediatric nurse to help me deal with the big responsibilities and pressure we must face during all treatments. But part of our job is to try and make these treatments less hard to endure, and less distressing. When you live in a world such as ours, we find that parents such as Luís Roberto and Patricia become very close to us. They understand we're struggling to minimize trauma or suffering. "

"To my mind we should be educating people about the importance of the early diagnostics not just in the city, but also in rural locations, especially in isolated areas, and of course among the less fortunate sectors of the population. There are new methods of testing that deliver the results quicker, meaning more children have the chance of a cure. And that reduces the suffering for everybody."

—Valeria (Nurse who looked after Stella during her treatment)

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"I believe that parental love is the main reason why some children become stronger during medical treatment. For others, the development of disease may be slower or less aggressive, even if, sadly, the final outcome cannot be changed. That's exactly what happened for Stella, thanks to the love she received from Luís Roberto and Patricia Demarco. Whenever she came into the hospital with her father she was happy. And this happiness was contagious - it spread among all the nursing staff and made us work with greater dedication and attention. Thanks to all the support that Stella received from her parents and wider family, she was extremely easy to care for and to treat. This loving support contributed directly to the way she responded to treatment."

"All the team was saddened by the final outcome, and we recognize the importance of all the love and care shown by Stella's parents and wider family."

"When I was searching for a profession, I realized working with children in hospitals would suit me. When I graduated, I started working at the Einstein Hospital and then I went to 'Instituto da Criança' (Institute for Children). Since then I've been learning just how important it is for every children to receive the support and love of parents, just as we saw in Stella and Luís Roberto's case."

"This is one important way that everyone in the care team can get more comfortable when working with children and families, and to give the best we can in any circumstance. I mean, you have to make them feel comfortable and adapt yourself to them in order to do a really great job."

—Rodrigo (Nurse who looked after Stella during her treatment)