Dror Barak, was diagnosed with Ewing Sarcoma of the skull, when he was 4.5 years old, on July, 2019.
Hadas and Itay Barak, Dror’s parents, are sharing their sons’s journey through the disease, treatments and challenges.
This interview is part of MyChildCancer’s mission to extract hidden life-saving information
and make it easily accessible to other parents all over the world.
Because knowledge saves lives.
Hadas, Mom of Dror Barak, 6.5 years old today, and Itay, Dror’s dad.
What were the early symptoms?
Headache that lasted about two weeks, maybe a little more than that.
Every day it came back, mostly in the morning and in the afternoon
This was accompanied by very great fatigue.
When we got to the emergency room, we also noticed a bump in the same spot
This was also the first time we noticed he had a head tilt.
They were debating what to do, but quickly they decided to do send us to do a CT.
In the CT, they immediately saw a large tumor.
The senior doctors arrived, Chief of neurological department arrived, and they said they are hospitalizing us right away, and that he will be operated in this hospitalization.
Their hypothesis was that it was a benign tumor, putting high pressure on the brain and it was obvious that a surgery is necessary.
We received the answer almost three weeks after the surgery.
What did you first do after the diagnosis?
It was clear that chemotherapy was being started, according to Ewing Sarcoma’s protocol, which is what was identified in the biopsy.
Before the chemotherapy, a port was transplanted.
We also did, according to their recommendation, something experimental, which can help preserve fertility, biopsy from the testicle was taken, and a bone marrow biopsy to check that there is no bone marrow involvement. We did all of the tests at Schneider Hospital because at Rambam there is no ethical approval to do fertility preservation.
At this point, the diagnosis of cancer, of the Ewing Sarcoma type, we turned through you, through My Child’s Cancer, to Dr. Wexler (from Sloan Kettering) who actually recommended the same treatment offered here in Israel.
In fact, we also approached him because we understood from the doctors here that they had not actually seen a case of Ewing Sarcoma in the skull, and we wanted to contact someone who had seen such cases and Dr. Wexler, saw, how many? I think 10 cases.
What were the protocol and treatments your child received?
It was a cycle of, once every two weeks. Alternately, five days of hospitalization and two days of hospitalization. For 14 treatments.
In the middle were the radiations, the protons radiation. In Vienna, Austria.
I think the familiar option, was New Jersey, USA. This is what we thought, for which we flew to do the radiations.
However, whoever is in charge of the institute in New Jersey also has an institute in Vienna.
and it was recommended to us here to go to Vienna, I think that it was technically possible there, for them. When we made some inquiries, we did not see lots of difference, even some advantage because it is close to Israel, shorter flights, and we did not hear anything bad, I think, about Vienna, ahhhh ..
Professionally, we understood that there is no difference from the point of view of Rambam Hospital, this was their recommendation. We have not seen, in this sense any difference.
Yes, when we went to the radiologist at Rambam, she said that for her, regular radiation could also be done at Rambam. The doctors actually, or the staff in the oncology dept., yes, their recommendation was to go for protons. We also understood that this is usually what is done today with children.
There, too, we continued the chemotherapy at the same time, and then we went back to a continuation of seven more rounds.
The person who was responsible for Dror, the person who was responsible for the actual radiation was Dr. Carola, who is also known in Israel, in the oncology department. They prepare some kind of mask around the head to set the organ during the radiations. What intensity of radiation he will
get and how much, and there is a complete…, I think, even before starting the radiation, there is MRI, they do CT, they do all the tests from the start.
Hadas- All screenings and tests were made under general anesthesia, which, the difficulty, is mainly the fasting before, for a few good hours, and there are other children besides him, so it is not that he is always first, there are smaller children, and sometimes the device goes out of order, so it is a bit delayed
Most of the time, almost, 90 and something percent, everything went smoothly, but there were a few cases where it was a bit delayed or even postponed, I think, once we did not get there, it is an hour drive from Vienna, one hour one way, one hour return, another hour, at screenings. Yes, mainly also because of the anesthesia.
Like, really, it sounds super complex, also the combination with the chemotherapy and everything, but somehow, it was not that there were small glitches or things that put us under stress and that, but by large, it works.
Can you describe how you dealt with the side effects?
Maybe a little fatigue, maybe a little changes in appetite, but not something drastic, most of the time he seemed to feel good.
Of course, in the hospital during treatment he receives the anti-nausea medicine by infusion, where he really feels good.
At home, occasionally, there were maybe a few, right after treatment and that is it.
Do not think there was almost no treatment that was not followed by fever. Then hospitalized for a few days.
What were the main crossroads you encountered?
I think for me, the discovery of the tumor, on the day at the ER, it was a total shock, really.
There was a desire to understand that what we do, since we have no ability to help, it all depends on the doctors; we wanted to understand that the treatment he receives is the best treatment he can receive, no matter where he is.
Mainly, we tried to concentrate each time on the current stage, and also and of course there were questions that are also preoccupied with the future and what to do in the next stage, but it’s hard to think ahead too all the time.
To be with a child who lies on the… in bed and gets all these drugs for so many days, it is hard to endure so also there is the shell of the hospital, of the service girls, family, and friends who came to visit, which is a little distracting.
It was very helpful. I think that this side is, there were days that Dror was happy to go
To the hospital to meet the girls there, the service girls.
Itay: I remember the first time I came with Dror for the first treatment, and then two girls came in, I said – “What do they want now? Leave me, what? Let Dror get the treatment, we will go home for a day or two.”
At that moment, I remember it to this day; I did not understand at all what they want. However, already that day, Dror connected there with someone, who continued with us almost to the end.
They just sit and pass the time. It can be a conversation about nothing, it can be a pizza night, it can be some game, balloons, a board game, it does not matter, the main thing is that there is some interaction between them and it is also for us, and it is also for those who are with the child, it’s very important.
Hadas– it really helps a lot for parents with young children, even with older children they are ahhhh … they interact, but with young children, it is dramatic.
In Vienna for example, which is an amazing class for children, the games that they have are something else, but in the end, there is no one there. I mean if, it is just who is with the child, and there, relatively, we were Hadas, the children, grandparents, other grandparents and me, everyone came to visit there in the hospital, it’s also something unusual.
The Role of the Family:
Luckily for us, family, grandparents, were with us and helped. I do not know, really, because there were other children, I do not know how it would have been conducted differently.
How is your child today?
He feels good; the tests show he is clean. He Has check-ups every 3 months, MRI and CT. Until recently it was PET CT, now it has moved to be a chest CT. Simply because this is where metastases usually appear, to minimize radiation, lowered the PET CT to chest CT, between lockdowns, he was in compulsory kindergarten, here in the kibbutz and going up to first grade.
There are drugs he was given, a drug he has been given that is said to have a heart-related danger (risk exists, but it’s not big), a danger that he might have a heart attack, so there is a cardiology follow-up.
As the years go by the chances are slim but still know it is something that could happen, something that is probably damaging the tissue of the heart.
The whole area, where he underwent the radiations, the size of a palm behind the head (in the back), did not grow hair. Yes, because of the radiations.
At first we were told that it would be, that shaggy hair would grow, now, it is not yet growing at all.
Take it gradually, step by step. At each stage, it is better to focus on the ‘here and now’ than overthink possible future ‘what if’s’. On the other hand, yes, ask as many questions as you can, whoever seems relevant and can help. In addition, other parents, also Second Opinion, and accept any help from anyone who offers help.
The social side is very important. From one hand, you are in an awful place – the hospital, and on the other hand, you are surrounded with people coming, and it is kind of a little distracting, and I can say that about us for sure. However, I also saw it around me, what is the difference between a family being there, solely alone, in some remote room in the ward. Compared to a family that constantly people come in and go out. I do not think Dror remembers any moment from that period, in a bad way.