at the announcement of the disease, parents “dazed, stunned, dumbfounded”

THE ESSENTIAL

• 500 children die of cancer each year in France.
• Cancer is the leading cause of death from disease in children over 1 year of age.
• The number of children diagnosed has never declined.

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“On May 9, 2018, we began, with our son Anatole, a long journey to the land of sick children. First, a motionless journey in the astonishment and distress of the discovery of his cancer. Then an initiatory journey in the services of pediatric oncology, a strange complex and formidable country. Travel also in the world of health, medicine and research. And very real and essential trip to the USA, a journey of hope to obtain access to treatment promising experimental stage. Today, this long journey continues in the land of patience and resilience, a long and winding journey, also dark, but oh so ardent.

We are an ordinary small family and live in Sweden with our two children, Anatole and her older sister. In May 2018, Anatole is almost 8 years old. He likes to play Lego, watch the Star Wars movies, let off steam in rugby. He loves to talk about his travels and dreams of being an engineer-technician-researcher-explorer. He also has his left hand which is shaking. We don’t imagine our life is going to be totally turned upside down when we take him for a medical check-up for what we think is muscle weakness.

“A bad dream”

The diagnosis is made: Anatole has a brain tumor in the thalamus called Diffuse Midline Glioma (DMG). An H3 K27M mutation makes the prognosis even more alarming since it classifies the tumor directly in WHO grade 4, the most aggressive. The patient survival rate is 10% at two years, 1% at five years. Figures that make you nauseous.

We are dazed, stunned, dumbfounded. This stupor is for us the first contact with our child’s cancer. We don’t believe it, it’s a bad dream, a very bad joke, a mistake. We have to wait for the moment when we have to inform those around us, hear the words come out of our own mouths to understand that the disease has now become our reality. That she has just entered our lives through the front door, and has no intention of getting out.

The following weeks, we live like automatons. All of this is beyond us. We basically rely on what doctors tell us. We submit our son to the care prescribed by the oncologists at Stockholm University Hospital, in whose hands we hand over our child’s life. We are clueless, overwhelmed but we try to swallow a whole bunch of words to try to understand what is happening to our son. We are fortunate to have an approachable and patient team who takes the time to explain to us, and sometimes, to explain everything to us again. She quickly recognized that there were few cases in Sweden and preferred to seek help from her international counterparts. We appreciate this humility. Since we are French, the Stockholm team gets in touch with Dr Jacques Grill from the Gustave Roussy Institute. He is working on a clinical trial for children with DIPG (similar to Invasive Brain Trunk Glioma). We feel confident. During the summer of 2018, until the end of the year, Anatole follows a first protocol jointly developed, combining proton therapy and chemotherapy. We let ourselves be guided, held by the hand, we rely entirely on science, convinced that the doctors are doing everything possible to save our child.

“The disease is visible”

Despite this, Anatole’s tumor progresses. Over the months, his condition deteriorated. He is put on corticosteroids for a while to stop the inflammation around the tumor. He needs to have a ventriculostomy to help the cerebrospinal fluid flow better. He was placed in an implantable chamber to avoid repeated injections in the arm. So many surgeries that are heartbreaking. The disease is now visible. Gradually affected by hemiparesis, Anatole loses in autonomy. The muscles work, but he can no longer control the left side of his body, he no longer uses it, he forgets it. He no longer moves his left hand or his arm, his left leg no longer carries him, he uses a wheelchair most of the time. He has half of his face frozen, he speaks less and less distinctly, he salivates all the time. He is tired and gets a lot of rest. He never complains.

It is completely legitimate to trust modern medicine, which is clear, crisp, precise and surgical. But when the operation is not possible? When the treatment does not bring any improvement? We look to other opinions, seek a second opinion from different doctors, explore other avenues, discover other approaches. We get information from associations, talk to other families, surf the Internet and social networks, watch documentaries, consult data, read, often in English, many articles and publications, the fruit of scientific research. Beyond statistics, words so hard to hear, prognosis so pessimistic, we are looking for something to hold back, a little hope hidden in all these learned words. We are aware that we have the opportunity and the time to do it, which unfortunately many parents do not have in the face of the rapidity of their child’s cancer. We understand that access to care is limited, unsuitable and subject to conditions. We feel very alone, faced with this mass of information, these stammering options, these micro-chances of survival. We move heaven and earth to find the best from anywhere else in the world. New therapies are in development. Options are possible, avenues exist. Rare cases of remission occur. We cling to this idea with all our might.

“The guilt of not knowing everything”

We listen to each other as parents, we follow our innermost beliefs, determined not to give up. We are told about courage. Rather, it is a survival instinct, on behalf of our son. This does not mean that we reject the protocols offered to us altogether, but we are looking at the issue from different angles. We are aware of a very sad reality. Oncology departments are not aware of all existing treatments or ongoing treatment trials, and the rarer the tumor, the more true it is. Doctors are trapped in their shackles, limited by hospital protocols and regulations that they cannot break. They are also focused on their area of ​​expertise and do not take the patient’s health as a whole. We discuss with them, we come with our lists of questions, we submit our proposals to them. We annoy them, disturb them, push them to their limits. Our reflections challenge them, they adhere to it or not, but we never feel judged. We are free to adapt our daily life according to our convictions. It’s about the life of our little one boy and the choice is ours. What a responsibility for us parents! What guilt of not knowing everything, knowing everything, mastering everything! “

More testimonials in the book Regards (edited by The Feathers of Ocris).

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