The Story That Beats JMML Disease Arin’s Effort Becomes Book

About the ‘Story Arin Book, The Story of Hope’, prepared by Bilim Sıhhat News Agency (BSHA) ‘The story of Arin’s extended family, who tightly embraces her’, Anne Action Şen


Story Arin The Story of Hope

Bilim Sıhhat News Agency (BSHA) made an interview with Anne Aksiyon Şen Yazıcı about the ‘Story of Arin Book, The Story of Hope’, which was prepared by ‘His extended family, who held tightly to Story Arin’. There are more than 100 narrators in the book, which tells the story of Öykü Arin, three and a half years ago, that her effort with JMML reached a happy ending with a great spirit of solidarity, with her lovers, supporters and donors, who know and don’t know. Stating that the book will serve as a guide and raise awareness in the public about dealing with the disease, Movement Yazıcı said, “This book has a valuable feature. As Öykü’s family, we were more visible on television, but we did the campaign together as a much larger group. In the book, that group became visible. We also wrote this book together. We use the hashtags “The Story of Hope and We Wrote Together” on social media.

Öykü Arin contributed to the Book of Hope with the articles of many names such as physicians, health professionals, health managers, craftsmen, politicians, representatives of foundations, associations, unions and chambers.

‘Story Arin’s Book Hope’s Story’, in which the Campaign Become Hope for Öykü Arin was written, was published by NotaBene Publications and met with the readers. There are many people who participated in the campaign during the donor search process in the book, in which the efforts of Story Arin and her huge family, who struggle with JMML disease, are told. The ‘Story of Hope’ is told in this book, which includes doctors, therapists, health managers, craftsmen, union representatives, municipal leaders, authors, representatives of associations and chambers. And the book, with all its narrators, gives hope to other ‘Stories’. In the book, which includes the stories written for the story and the data matrix of the music composed, the story calls out to the readers with the photographs it made during the period of effort with illness.

BSHA: The story of Öykü and your struggle with the disease as parents, your story has been shared with the public in television news, programs, newspapers, social media and many other mass media channels. Now, Story Arin’s effort has been published in a book. Story Arin Book Would the Book of Hope’s Story have a different effect on raising awareness about the disease?

E.Ş.Y: The book often tells much more than what it looks like from the outside. What happened inside, what we experienced. And there is something valuable about this book. We were more visible on television as Öykü’s family, but we did the campaign together as a much larger group. That’s why we wrote the book together. We used the hashtags Story of Hope and We Wrote Together on social media. Because we actually wrote the Story of Hope together. Besides, I explained how we experienced what happened in this process from inside, how we encountered difficulties and how we overcame them. In addition, our family, friends, relatives who witnessed the campaign process, our friends with whom we organized the campaign together, told the Story of Hope from where they saw it. In this sense, the awareness it will create will be more effective.

BSHA: As a mother, your awareness of the disease, which you mentioned in the book, especially your follow-up of leukocyte costs is very impressive. “During the chaos and uncertainty, I didn’t show any desire for the clichés of ‘the pessimistic mother’ and chose to go beyond my doubts despite those who advised to be relaxed…” Your statements are actually a message to all parents. With your awareness, you followed the possibility of your daughter getting sick. What advice would you give to parents?

E.Ş.Y: I’m just a very detail and detail person. Like many mothers. I am very meticulous. When there is a problem with my children, I am very meticulous in terms of understanding whether it is caused by another problem and being a follower. I am a curious person. Since I always looked at blood analyzes before the first diagnosis was made, I sensed that there was something strange in the blood analysis. That’s why I went into this business. While the cost of leukocytes in children can normally be around 16 thousand, even when I took Öykü for blood analysis when she was healthy and without any disease, her leukocyte values ​​did not fall below 18 thousand. It wasn’t too high like typical leukemia. I sensed something odd. I continued my research. I had medical friends who supported me in this regard. Pediatric Emergency Department Leader at Ege University Hospital, Dr. Movement Ulassaz, Dr. in Pediatric Emergency. Ali Yurtseven. Dr. Action Ulassaz, I am a physician, while I am wandering from hospital to hospital; He said, ‘No diagnosis has been made at the moment, but something is certain and don’t let it go’. This has been a great support for me. As a matter of fact, you are walking against a very large current. Even if your child is not sick, you take them for inspection. As for the recommendation; I can only describe my own experience. Everyone’s life is unique. It’s not my goal to give someone advice. I Whether people have children or not, if they see a photo of themselves in my or our experience, it means that we have a bond.

The book met the reader for the first time at İzmir Close Bookstore. Movement Şen Yazıcı held book signing events with Öykü Arin last week in Istanbul and Antalya.

DEU Doctors Didn’t Give Up Despite Negative Results From Germany

BSHA: If the tests from Germany had been taken into account, the diagnosis could not have been made. However, the diagnosis was made thanks to the clinical follow-ups and medical skills of the physicians in the Dokuz Eylul University Hematology branch. As a matter of fact, this detail is a proof of the attention and skills of our doctors. What did you experience, when the doctors said that the result from Germany was wrong and how was the process after that for you?

E.Ş.Y: We realized how valuable the issue of proper medicine at every step is. As long as there are doctors who are very valuable and fulfill their mission, life becomes much easier. When we went to Dokuz Eylul University Hematology Department, the doctors quickly became suspicious and justified their suspicions based on the clinical findings. The blood and hair sample went to Germany as well. Although the result was negative there, our doctors contacted Germany based on clinical findings. And the response they received from the hospital in Germany was ‘if you, as a doctor, suspect such a diagnosis, you are right’. They said let’s do a test again and the test was done for the second time. At that time, the result of the disease we suspected was confirmed in Germany. Of course, this is a very severe process, on the one hand, you do not want such a diagnosis to be made, but on the other hand, you are meticulous about this issue, being aware of the fact that the faster a diagnosis can be made before something is delayed, the faster it can be treated. They were powerful processes emotionally as well.

BSHA: With the book, we are witnessing the struggle of a mother whose child has leukemia, even as if we are with you and we are experiencing the processes together. As a person working in the field of health, has your human experience contributed to the treatment and beautification processes? Would it have been more violent if it hadn’t? If we take into account that the treatment processes in the health system are slow, what would your answer be?

E.Ş.Y: I’m not actually a healthcare worker. I am a computer engineer. I am also a documentary filmmaker. As a Computer Engineer, I was working in the information process center of Ege University Hospital. Since I worked there on the hospital side, I became a member of the Health Workers Union. In this way, I had contact with many health workers. However, our paths crossed in some form, not only for this reason, but also because I am a documentary filmmaker and there are doctors in my circle of friends who are interested in cinema. I have friends who are doctors, health workers and health workers. Because of this, I had contact with all of them during the research process.

BSHA: Our favorite part of the book was the data matrix. Can you talk about the music? Who made music for Öykü Arin? Story What happened to Arin’s comments about the music? Which song does he like the most?

E.Ş.Y: Öykü Arin himself composed the music. Story Arin’s kindergarten teachers also made music at Yediiklim Early Learning Center, which is the nursery for Little Catfish. Story Look Bak is the name of the music. Supposedly for me, this music is like a wish tree, like a totem. In addition, Şükran Ali Mengirkaon made a music. Haluk Levent did not compose directly, but he sang a lot of music for the story. He threw it with a voice announcement and I played the story to Arin. It was very enjoyable. Shubadap said that they came to their own music and came out on the roof, which can be seen from the window of the transplant room in the hospital. We could see them through the window, but even opening a window was forbidden. Because the weather outside is risky. So we watched from the window. They called and played the song on the phone. Can Göktürk Story with Arin “Can there ever be a stone heart?” they composed their story.

“Institutionalizing the Story Arin Struggle is on Our Agenda”

BSHA: The story The Hope for Arin Campaign, the kitchen set, and the whole process is truly admirable. The spirit of solidarity is the support from all sides… The story Arin’s impeccable strength was also reflected in the campaign process. Is this dynamic still alive and can it be activated for other Story Arins?

E.Ş.Y: We ran the campaign for all Öykü’s. We also do our best when families in exemplary situations need it. There are often families reaching out to Çağdaş and me. We are trying to reinforce them. The majority of friends from the campaign team and the kitchen cluster. It’s still in the middle. We made the book together. In the following processes, we talk about institutionalizing this effort together.

BSHA: Do you have a plan to form an association?

E.Ş.Y: Although it is not clear yet, I can say yes.

BSHA: The most difficult part of the donor search process has been the study of the samples. It begins with a campaign to study samples after a search for donors. You mentioned the difficulty of actually reaching the Minister of Health, Fahrettin Koca. And the social media platform twitter has been influential here again. Minister Koca’s attention was drawn. At this point, can we get your thoughts on the value of social media?

E.Ş.Y: Health Minister Fahrettin Koca did not contact us directly, but Haluk Levent met with him about the study of samples on our behalf. So they had activated it on the night shift before. This too was insufficient. We had a social media campaign. Yes, at this point, the social media and signature campaign were really effective. And the samples were all studied. However, Story did not match Arin again. A semi-conforming transplant was performed. First, after me, it was tried from his father. It is a very effective social tool indeed. It also helped people to take action and raise awareness in a very effective way in the Be Hope for Öykü Campaign. Many people raised awareness about stem cell donation via social media, became donors and influenced others. Today, we still hear about our invitation on social media and hear from people who became donors and matched with someone.

BSHA: It’s a one-in-a-million disease, and there’s not one compatible donor out of thousands of donors… But there’s always hope, isn’t there?

E.Ş.Y: JMML is a one-in-a-million condition that can be treated with a bone marrow transplant in children. Therefore, we have never lost hope. Story Arin was cured.

BSHA: Page 57 of the book… The part that begins with the sentence “Everyone looks at all the children receiving chemotherapy treatment from such a distance that they all act like they are alike…”. As someone who has experienced this process, what are your suggestions about not providing any support for families, especially mothers, during the treatment process?

E.Ş.Y: In all these treatment processes, both the family and the child should receive a spiritual support.

“Sun, wind, leaves, sky, Story Arin and We Are Happy”

BSHA: The result of chimerism on June 18 is 95 percent… And then your moment of walking to the park on the one-hour outdoor leave… Like a movie theater with a happy ending…

EYS: We were in the transplant room for three and a half months. When the semi-compatible transplant from me did not work, semi-compatible transplant from the father was tried. We were so happy when we went out that we were enlightened again. We pursued the possibility of returning to our lives again, and we never lost our hope.

BSHA: What was the most memorable moment you spent in the hospital?

ARTICLE: The day of the bone marrow transplant was the day I can never forget. I can’t forget the day when the information that ‘he got the transplant, the platelets are rising’ after the transplant from the father came.

BSHA: Foreword and Story by Ercan Kesal Arin’s ‘Can there be a future without a past?’ That sentence brought this question to my mind. The story Arin learned, the awareness she experienced, the effort she gave with all her being is incredible. What was your approach to the preparation of this book? How was he involved in the process?

EYS: Story Arin was involved in the book process with the photographs she took at the hospital with her photographs. Story Arin’s therapist read this book. Removed what shouldn’t be. He checked the photos and the texts. He knows that Öykü is a book about his efforts in his life. He knows that his struggle with the disease is told by those who love him, that the photographs he made and the music made for him are included in the book. We’re taking it to signing days.

BSHA: We would like to read a letter by Öykü Arin as well… A call in which she tells about her feelings… Or an example of a voice recording with data matrix…

EYS: In the book, there are photos made by Öykü Arin herself. There is music made for it. There are stories. He does not have a letter, he went through this process as a child. As a child, he expressed himself with photographs. No Stone Heart? Part of it tells about it. It was a story he told when he was 4 years old.

BSHA:   In addition to the savior of parental donation, the effect of sibling donor is also important in the treatment of the disease. Friends October and Story How are Arin?

EYS: We did not consider the second child with a random proposal. He became a brother to Öykü. They are both very satisfied.

BSHA: Finally, how would you like to address the families who have just met with the same fate as you during the diagnosis process or who are looking for a donor? Are there individuals trying to reach you looking for you? You now have a mission in this bet, and the book refers to it. How can families who want to get support and information from you reach you?

EYS: At least one family reaches us every week. They state that they are faced with such a situation and that they are struggling with bone marrow transplant or precedent diseases. They ask about our experiences. We are also telling. My contemporary wife is more interested in these matters. We keep in touch with people who reach out to us for a stem cell donation campaign or other forms of help. We are doing our best. (BSHA-Science and Health News Agency)