Again (update from Luca)

Unfortunately, Luca is not stable anymore. After four months of “normality”, the disease is back with a vengeance. He was taken off the LA trial, and after an intense weekend of email traffic among oncologists from four countries, we brought Luca to Hospital Sant Joan de Deu in Barcelona which offers the treatment developed by New York Memorial Sloan Kettering for which we did the fundraising two years ago.

Time is running out; Luca is not well; so we need your prayers, good wishes more than ever.

P.S. We will try to keep you posted. We may also need to start a new fundraiser as we are now operating on a very tight budget (your contributions already took us to Michigan, Los Angeles, and now Barcelona, enabling us to give him the best treatment available. We are, and will always be, eternally grateful for that.)

http://lucacan.com/again/

hospital-sant-joan-de-deu

New update from Luca

Luca has had a great two months. For the first time in a very long time he has been completely free from pain and difficult side-effects. The team at Childrens’ Hospital Los Angeles sent us back home for Christmas and New Year’s. Even though he liked Los Angeles a lot, Luca had been missing home, his toys and friends, so he was very happy to be back. He was doing so well that we did not hesitate to send him back to school. The doctors in Lund were amazed; our friends here were amazed. It was as if he had never been sick.

Then it was time again for a short trip to LA for scans and check-up. We had some of the tests done in Sweden, but were not informed of the results. In any case, what mattered most was the full body scan (MIBG) he was going to have at CHLA.

Unfortunately, the results were disappointing for both his doctors and us – even more so considering how well he was doing. The tumours were all there; in fact, a new one was discovered, though his doctor in LA believes it may have been there all along, just not visible on the first set of scans. There was no way of making any exact comparisons; the tests he had two months ago were deficient due to technical problems. We knew that the tumours were not growing, at least not as fast as before, but we found out that they were not shrinking either. In other words, Lorlatinib was doing what chemo did over the summer, i.e. keeping the disease in check, stable. So far at least, it was not curative.

Now we are back in Lund. Luca is still doing fine, and back to his normal life. We are still “cautiously optimistic”, though perhaps more on the cautious side of the equation. We knew even before the trial began that the problem with drugs that target ALK mutation is “resistance”; the tumours adapt to them and stop responding. Lorlatinib was specifically developed to overcome this problem but as we wrote earlier, there is so much we don’t know about it. And we learned that the response of the children who are on the trial is “mixed” so far (a very short period of time to be scientifically meaningful to be sure), with some developing resistance after just a few weeks.

While we keep hoping and praying that these good days will last, we decided to raise the alarm level to yellow and to have a plan B. If the worse were to happen, we won’t have much time to act. Needless to say, we will not stop fighting until our hero, our little ninja stops fighting. His doctors in Sweden have already made it clear that there is nothing more that they can do for him here, other than palliative treatment. However, we have been in touch with Hospital Sant Joan de Déu in Barcelona, which has started a trial with the new type of immunotherapy that was once recommended for him at Sloan Kettering, New York. They have accepted to treat him if we were to find out that he starts progressing on the current treatment. The costs of treatment in Europe are much more reasonable than in the US, but we have already used a big chunk of our funding in Michigan and Los Angeles. In case there is an unfortunate turn of events, we may need to relaunch the fundraiser and try to take him to Barcelona.

Until then, we have nothing to do but to continue hoping that the miracle lasts. And as always, we need your prayers, good will and energy. They brought us so far; we are sure they will take us further.

http://lucacan.com/still-ok/

WhatsApp Image 2018-01-19 at 17.03.46

A London Story

There is no perfection only life”

― Milan Kundera, The Unbearable Lightness of Being

It was 1994. I had found myself in London, not entirely as a result of a conscious choice. I had applied to several universities upon graduation, all of them in the U.S., except one, the LSE. I had a very good grade point average, and would have probably managed to get the British Council scholarship to go to Britain, but I was so obsessed with U.S. that I have chosen to apply for another scholarship, that of Turkish Education Foundation (TEV), which was also funding studies in the U.S. I remember the official at the British Council who almost begged me to apply as she thought I had a good chance – as I couldn’t apply to both scholarships at the same time. But i didn’t listen to her. That was probably one of the worst decisions of my life. I got rejected by all universities in the U.S., and accepted by the LSE! The foundation allowed me to go there of course, but the money I got was less, and I had to repay it upon completion of my studies. The British Council scholarship? Well, there was no paying back! So I did my masters at the LSE, but paid 10.000 pounds back, over the course of five years, which made my life miserable in many ways.. But that’s another story.

I did not have a place to stay in London. There was no room left at the dormitories, just a temporary place my father found through some friends. My first evening in London was horrible. The guy my father arranged came up with an excuse in the last minute and took me to another place, some kind of a shared flat with a number of “party boys”. It was quite crazy – partying, drugs, sex, everything. I didn’t blink my eyes that night (there were no pillows or bed linens, not to mention the “hardcore” noises next door). I ran away the following day. My resourceful father made a few phone calls and arranged another place, but this time I was lucky. An old couple from Turkey, with their own textile atelier, and they were treating me like I was their grandson. It felt good; I was feeling lonely anyway, and needed that kind of warmth. In the meantime, I was going to the LSE accommodation office twice a day and literally harassing the accommodation assistant who happened to be a Turkish woman. She was famous for not letting any students from Turkey without a roof on top of their head, but she was about to quit her job, and couldn’t find a place for me despite trying really hard. She had also started feeling sorry for me – this poor, naive guy, who was using any manipulation technique possible to make her feel bad.. Finally one morning, she mumbled something along the lines of “well, a friend of mine was thinking of renting a room in her flat, but she has not made up her mind yet; maybe I should send you to her, as a fait accompli. Who knows, she might say yes if she likes you.” There I was the next day, 69 Oakeshott Court near Euston Station (yes, I still remember the address), with a bouquet of flowers in one hand, a box of cookies in another, looking miserable and needy. The accommodation assistant was right.. and doubly so. Tijen, the owner of the flat, had not seriously considered the idea of renting the room, but she pitied me and said yes!

I was the happiest person on earth. Very nice flat, extremely central location, good price.. and a sweet landowner. Like a big sister. Well.. Appearances could be deceiving. When we started living together, I realized how difficult Tijen was, as a person. She had come to London 20 years ago, to do her masters, got involved in left-wing politics, lost her citizenship after the 1980 coup and couldn’t go back to Turkey until for a long time. She had also married a guy from the same political circle, but run away from him. As she wanted to avoid him, she was staying away from the Turkish-speaking community in London. She had even changed her name – actually, Tijen was her real name, but sometimes people were calling home and asking for “Nergis”, which was, I thought at that time, her code name in the organization. She was extremely private, sceptical and hypochondriac. I ended up asking for her permission for everything, even to use the kitchen, addressing her in the plural. Everything was so formal, and I was feeling quite uncomfortable, definitely not at “home”. During that period, she was particularly depressed because she was sueing the college she was teaching at, charging them with racism and sexism. Some days she was like a nightmare – aggressive, depressed. And frankly, knowing how conspiratorial she could be, I didn’t believe that the charges were correct.

In the meantime, I continued to see the LSE accommodation assistant, from time to time, and there was always talk of someone by the name of “Can” – a very common male name in Turkey. Can was a friend of Tijen’s, from the same political circle. I also found out that the accommodation assistant met Can through Tijen. Bascially I was thinking Can was her boyfriend, because they were living together. One day, the phone rang; I picked up, a woman asked for Nergis, I gave the usual answer – not home. She replied “could you please tell her Can called?”. So Can was a woman. I said, ah ok, she is the accommodation assistant’s flatmate. Until I realized, six months later when I visited them, that there was only one bedroom and one bed in the flat. I was naive after all!

As days went by, my relationship with Tijen started to improve. I was still addressing her in the plural but she was now seeing me like her nephew whose name was also Umut. Then I became her student. Informally of course. She started to talk to me about identity politics, a term I heard for the first time, and about gender and feminism. She taught me that a man could never have a woman’s point of view, put himself in her shoes so to speak. “Have you ever heard footsteps”, she asked me one day, “going back home alone, late in the night and got scared?”, scared of being followed, of being “raped”? I didn’t have an answer. She was also telling me that language is not innocent. Her doctoral dissertation was on discrimination anyway (she was writing it with Nira Yuval-Davis). I, on the other hand, still thought she was blowing things out of proportions sometimes.

Until the day, well, she won her court case! The college offered to settle and gave her a handsome compensation for the charge of sexism (denying allegations of racism). She knew that she could not survive there anymore, so she took the money and quit her job. And she started to spend her days at home, attending a painting class in the evenings.

….

The rest of the year, Tijen survived on social security money and the compensation she got from her former college, and continued painting. I was, in the meantime, struggling with the masters. It was not an easy year. One morning, I found a two-sentence letter from my then girlfriend who said she could not take it any more. I tried to call her; she told me she didn’t have a concrete reason. She had just decided that she didn’t love me any more. I was feeling down, didn’t want to be alone, so jumped on the next plane to Istanbul. My father picked me up from the airport and told me that they have separated with my mother, that he has moved to a new flat. They had kept me uninformed since I was abroad, far away! Two days later, my grandmother (my mother’s mother whom I loved very much) died, suddenly! All in four days – a break-up, a divorce and a death! It surely was not the best week of my life.. When I got back to London, Tijen was my greatest source of support. She was the older sister I never had. She introduced me to Nira Yuval-Davis, to her classmates, and I started to socialize with them. I had never liked the people at the LSE anyway who were all too competitive for my taste, so Tijen’s friends were a life-saver. In the end, that flat, which did not feel like home at first, “became” a home – my refuge, my safe haven. Chatting with Tijen abla (that’s how I was calling her now, sister Tijen), having tea with milk the English way together was my favourite passtime. We were still disagreeing on many issues, but I was learning a lot from her, from our disagreements. Possibly with the influence of my parents’ breakup, I started to see her as my family, in fact the only family I had. I even thought that she physically resembled my mother in some old pictures.

I went back to Turkey after I finished my masters. I did not think I was going to miss London that much, but apparently the London “bug” was inside me, and I felt that I could never do a PhD if I stayed in Turkey. So I enrolled in a PhD programme in Istanbul to dodge the military service – like so many others in Turkey do – and in the meantime struck a deal with Nira, to do a second PhD at Greenwich (where she was working back then), under her supervisio. Soon, realizing that I did not want to specialize on gender, I switched to Portsmouth University where there was a group working on nationalism and met Spyros in 1997. These are side stories.

Obviously, this time there were no dramas about accommodation and I directly went to Tijen’s place. Tijen, this time, was complaining about having pains, but we (mostly Can and myself), knowing her hypochondria, were not taking her that seriously. She must be making up something, we thought. And yet we were wrong again. When she finally managed to get an appointment from the doctor – the ridiculously inefficient NHS in the U.K. had taken months to give her an appointment – it was discovered that she had ovary cancer! That is something mostly curable of course, but in her case, because of late diagnosis, the cancer had reached an advanced stage and the tumor was as big as an orange. Still, she was lucky. One of the most famous oncologists of the world, in London, accepted her to his trial programme for a new drug cocktail, and within 3 months, the tumor shrunk miraculously! I was back to Istanbul, but was commuting to London, staying either with Tijen or Can (she and the accommodation assistant had broken up). A year later, Tijen’s pain got back; there was metasthasis to the bones. Before starting chemotherapy, she finished her PhD and became a “doctor”. She also came to Istanbul to see her father. We met in Taksim Square; she wanted to meet my mother (after so many years of speaking over the phone), and we were there with Can’s mother, Mucella, and my then girlfriend. She had her head shaved, in preparation for the treatment. She looked all right, but there was something.. Something difficult to describe. It was as if she knew this was her last time in Istanbul. Still, we made a promise to meet me two months later. It was june, I was going to London in August.

I couldnt make it.. The treatment didn’t work. Tijen died ten days before I went to London. It was sudden, I didn’t know, we didn’t know. Otherwise I could have changed my ticket.

I did make it to the memorial at Greenwich University though. Can who, besides being a social worker, was into shooting documentaries, had prepared a documentary based on the pictures and footage she had of Tijen (https://www.youtube.com/watch?v=uaxTom38JAU). Some friends had composed songs for her; which were also used in the documentary and played alive at the memorial. We cried.. a lot. I think I had never cried so much in public in my life – not even at my father’s funeral (that was to change from 2014 onwards). Then we shared Tijen’s belongings, stuff. I took the cd she liked most and the first painting she did after joining the painting classes. Then we gathered some money and had Ashgate publish her thesis.

The story ends here.. or actually it never ends. The accommodation assistant got married and had a son. Can became my best friend on the face of this earth. We have always believed we had to take care of each other, that that was Tijen’s last will – or so we believed. It has been more than 23 years now, since we first met, and I still stay with her in Camden Town every time I go to London, which is at least three times a year. Sometimes for no reason. Just because I feel good in her company. Camden is my new refuge now, the only place I would go to if I am too depressed. And vice versa. I helped her through her career; she did not even have a bachelor’s degree when we met.. In two years, she will have a PhD in urban geography at King’s College, London! She still works as a forensic social worker. Oh and, there is a reason why Luca’s middle name is CAN.

And no, I never learned to be afraid of footsteps in the dark. Or, more properly, to feel how a woman would feel when she heard those footsteps. I did learn that I could never really understand a woman’s perspective, the way she perceives reality.

Kundera was right after all.. “there is no perfection only life”..

24273605_10155849637898168_779531924530474040_o

(From left to right, yours truly, Tijen, Can)