Living with cancer: What I have learnt, what I will never learn

This piece, originally published in Ahval, was widely read and received a lot of positive feedback from people who had to struggle with cancer, either themselves or via their loved ones. So I am reproducing it here as the audience of my personal blog is different from that of my professional writings. Two clarifications:

  1. An oncologist follower kindly warned me that Point 3 could be misconstrued as implying that genetic factors do not play any role in cancer. Of course it does, in many types of cancer (breast, prostate, leukemia, to name but a few). I was referring specifically to childhood cancers and in particular to neuroblastoma in that paragraph, and the likelihood that the disease is transmitted by the mother or father of the child. We have been informed that the only “statistically insignificant” hereditary factor in neuroblastoma is the incidence of childhood cancer in the parents’ family.
  2. Luca is being followed closely by top oncologists in several countries as it is a very peculiar and rare case (I don’t want to name them as I have not sought their consent), including such institutions and associations as NANT (New Approaches to Neuroblastoma Therapy – http://www.nant.org/) and SIOPEN (International Collaboration for Neuroblastoma Research – http://siopen.org/wp/). The information I provide in the article are based on the knowledge we acquired over the years and our own experiences.

**

18 March 2018, Barcelona

I -we- have been living with cancer for almost four years now. In fact, it would be more accurate to say we have been ‘trying to live’, as our life is quite different from yours. I am not even sure if it is close to what we usually call ‘living’.

Our life has been a roller coaster since my son, who will turn five this Sunday, was diagnosed with neuroblastoma when he was 11 months old.

Sometimes the ride is slow, almost ‘normal’; then suddenly it accelerates, reaches the top; you think you have gotten over it, you walk on air. Then the car starts to go down full speed… Making you feel inside out. It feels you are not going down, you are literally falling.

You keep on falling and falling. You long for a stop, an end to this turbulence. It never happens. The control mechanism has broken down; the person in charge of the ride does everything she possibly can, calls others for help, but the open car does not stop. It torments you – both the victim in its claws and those who love the victim more than anything else.

Some of you may already know the story of my son. Not that we wanted to share it publicly (you will understand why). It was private; private for him, private for us. But the cancer relapsed after a long and agonizing treatment process and the only alternative that seemed promising was available in a hospital in New York. We could not have afforded to take him to New York through our own means, hence we were obliged to launch a fundraising campaign. We shared our story with everyone. True, we have not been able to raise the amount to take him there, but we were surrounded with an unexpected, seamless flood of love. Luca (without being aware of it) has turned into a modest icon that managed to overcome the polarisation in Turkey and to bring thousands of anonymous people living in different parts of the world together. And the money we raised did help him to live two more years.

The moment our story was heard, relatives of many neuroblastoma patients from Turkey reached out to me, asked for help, tried to learn more about new treatments available abroad. So on the occasion of his birthday, I have decided to share with you the little that we have learnt in the past four years with the hope that it might help those who struggle with this deadly disease.

First: Never believe in what you read on the internet or hear from others. Each and every cancer case is unique. Interpret official statistics in the same way. For example, a child who has neuroblastoma at stage four has a 50 percent chance of disease-free survival. But each time there is a relapse, the percentage drops. Yet, as any statistics expert would tell you, even if this possibility drops down to 10 percent, your child could be the one to survive among those 10 patients. Or a newly tested drug might alter the odds.

Second: Never trust anyone other than your own doctor for your child’s treatment. A good pediatric oncologist would be familiar with new treatments and consult her colleagues about your child’s condition anyway. But the reverse is also true. An oncologist who respects her profession would never comment on your child’s case based on the test results you send via e-mail. Almost all advanced treatments are available in Turkey – as long as you have the financial means. But there is still no cure for neuroblastoma; if your oncologist tells you that there is a type of treatment which would fully cure your child without consulting anyone, immediately ask advice from another expert (not by sending an e-mail, but by taking your child to the expert).

Third: Don’t blame yourself for your child’s cancer. Including neuroblastoma, none of childhood cancers (apart from a few exceptions) have genetic causes. It usually emerges at the embryonic stage, when the baby’s cells are developing. Therefore it is sometimes identified even before the baby is born, thanks to new diagnostic tests. In the case of neuroblastoma, the only ‘statistically insignificant’ relevant genetic factor is having a children’s cancer case in the family. But, to reiterate, even this correlation is too small to be taken into account. In other words, your child having neuroblastoma – depending on what you believe in – is either the result of fate or simple coincidence.

Fourth: Children respond better to treatment than the adults. They are stronger; and most of them will not even be aware of their disease up to a certain age. Therefore as parents, you have a great responsibility. The first advice we have received when our son was diagnosed was ‘to treat him as normal as possible and to live an ordinary life’. Enjoy the little breaks when your child is fine; let your child go to school; don’t be over protective.

Fifth: Try not to lose your hope. Yes, neuroblastoma have the second highest death rate among childhood cancers. However, a lot of money and energy is spent all over the world to overcome this disease and it is quite likely that there will be a breakthrough in the next couple of years. To the best of our knowledge, there are at least 30-40 trials going on as I write these lines. These include conventional chemotherapies as well as new treatments (ALK therapies targeting genetic mutations; various types of immunotherapy that teach the body’s immune system to recognize cancerous cells; new methods of radiotherapy or stem cell transplantation; CAR T-Cell treatments based on the idea of removing white blood cells from the body, genetically engineering them so that they can recognize cancer cells and then injecting them back to the body are the first ones that come to my mind).

Here let me quickly address a question that has often been raised. No, modern medicine does not rule out organic treatments. It only demands that the effectiveness of those treatments to be clinically proven. Take the oft-mentioned case of a vaccine which ‘cures’ cancer in Cuba… This is to a large extent a myth. Yes, there is indeed a type of vaccine that is believed to be really effective, but it only works for lung cancers among adults and it is now being clinically tested in the United States. Large pharmaceutical companies would get the patents of such treatments, drugs whether they are developed in China or Cuba, and test them. Apart from that, oleander (zakkum), the herb X that only grows in the Caribbean, the extract of the tree Y, these are all myths produced to exploit desperate patients.

Do these help some patients? Probably. But this does not mean that ‘alternative medicine’ can be used for children or for all types of cancer, offering a cure so to speak. To the contrary, it is very likely that you will make things worse by resorting to such treatments as their long terms side effects will be largely unknown.

The bottomline, then, is not to lose faith in science. Modern medicine discovers everything that works and makes it available. For example, it is known that cannabis (marijuana) oil can be useful for treating neuroblastoma and some other types of cancer. Hence, its medical use is legally allowed in some countries and in some states of the United States. Even in countries it is banned, it is possible to find and use it, as doctors will most likely turn a blind eye to them.

Don’t get me wrong; when I say don’t lose your faith in science, I mean the researchers and clinical doctors who have dedicated their lives to finding a cure. We have have met several of these along the way. They do not benefit financially when they admit a patient to a clinical trial. In any case, these trials are often free of charge. This is not true for pharmaceutical companies driven by profit like all other capitalist organisations. But this means that they do want their drug to be effective as they can make a fortune out of this. This is why, for example, a large pharmaceutical company would not hesitate to get the patent of a drug even from those countries under a political embargo.

In a nutshell, if your child has neuroblastoma, your target should be to extend her life as much as you possibly can without ignoring long term side effects and reducing her quality of life. A few years is sufficient for a revolution to occur in the field of medicine.

Last word. To hope, not to lose faith in science, trying to live a normal life… As a parent who has been trying to coexist with this disease for the last four years, I am very well aware that these words are meaningless at most times. When your child crawls in pain, when she vomits those few bites she has hardly swallowed, when she asks you why she does not have hair like other children, when she melts away in front of your very eyes… Then nothing helps, nothing makes sense.

There is no way to grasp this if your child is not diagnosed with a similar disease. Do not judge those parents; but do not treat them differently either. And do not ever have pity for them. That is insulting to their and the little one’s heroic struggle. There are a thousand ways to support them. A brief text message you send them without expecting a reply or most of the time to just ‘be silent’. If they need you by their side – and they may not, do not get offended if this is the case – try to just sit silently by their side. Without saying a single word.

For there is nothing you could say to someone whose most precious has been hovering between life and death.

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