Biljana Stupar is the mother of Tara Petričević, a girl who has been diagnosed with acute myeloid leukemia in 2011, when she was only 16. After a fierce fight with the severe illness, bone marrow transplant, and treatment in Germany, in the end she lost the battle despite everything. Tara daydreamed about Hollywood, and the entire time while she was trying to get better her eyes were looking at the stars, to which she gravitated towards, and maybe reached in the end.
On the way to Biljana’s building, we saw a girl running towards us. She was playing hide and seek with her friends, and quickly disappeared. The street was resonating with her laughter for a long time. That’s how our story about Tara began – with a picture of a happy girl fading away too quickly, and the forever question if you’d ever meet again.
How did you find out Tara had leukaemia?
At the beginning of November 2010, Tara felt exhaustion, her throat was sore, and we thought it was a viral infection. We took her to a pediatrician immediately, who gave her antibiotics. After that, she got a high fever. It was necessary to do a complete blood count, which soon showed that certain features were very low. A biochemical component showed that there was something happening in her organism, and that day we ended up in the hospital in Tiršova. We were admitted by a haematologist, and she asked us to come back every other day in order to keep track of the blood count. The components were increasing and decreasing, but they never reached the normal range. After six weeks, it was protocol to perform a bone marrow puncture.
By then you’d already seen the flaws of our healthcare system?
In 2011 in Belgrade, bone marrow puncture was, and as I hear still is performed, without anaesthesia. It is inhumane to do that to children and adults at the haematology department in Belgrade. Also, it is important to mention that bone marrow puncture is not done only once, but from the moment the diagnosis is established, it needs to be performed at least seven or eight times during the treatment, if everything is normal. They justify it by saying that the intervention doesn’t last long and that’s why they don’t give anaesthesia. They do the procedure by inserting a 30cm long needle into the sternum or the hipbone, and extracting it from there. They perform this intervention in the medical room, children scream in pain because it hurts a lot. I work in a laboratory for the examination of whether or not tissue is a match for transplants of bone marrow, heart, kidneys, and liver, I know that the number of children suffering from leukaemia is increasing, and everybody has the puncture done in this way to this day.
How did they tell you that Tara had leukaemia?
The doctor told me in a hallway, where everyone is walking by (parents, children, cleaners), the results of the bone marrow puncture. You’re standing up, and you’re being told in the hallway something that was your worst fear. They told me that she had acute myeloid leukaemia, which usually occurs to older people. At that point, Tara was 16 years and 2 months old. When they tell you the diagnosis, it’s logical that they give you time to tell your child that they’ll be in hospital for a while, to explain the situation. However, they didn’t allow that, they just told me to go home and pick up my things, and that they were taking her to be hospitalised.
What does the department at Tiršova where Tara was hospitalised look like?
First you come to a door with an intercom. When you go in, 13 so called “boxes” are in front of you, which look very inhumane. Glass rooms and one glass suite, that was the so-called isolation. Each of those “boxes” has one bed, one chair, a small TV, and a nightstand. Everything is in glass, nobody has privacy, neither parent nor child. Babies, and 5-6-year-old children are lying in close proximity, all one next to another, separated only with glass. You as a parent sleep on the chair. Of course, you can go home, but I didn’t leave my child for a single day. For all the patients in there, there is only one bathroom, one shower, and two toilets. It is important to know that those children have an extremely low count of leucocytes; one breath of yours can be their tipping point. I bought Tara a potty so that she wouldn’t leave her “box”. I washed her hair with a bucket and a carafe that I’d brought from home. We were there for 6 months. Since Tara was also treated in Germany, I am free to say that equipping the Department where those children are is neither expensive nor something unreachable.
Did you want to take Tara to Germany straight away?
I asked the doctor to give me only 12 hours to get in touch with Germany, because I didn’t trust our healthcare, and this was my child’s life that I didn’t want to leave up to fate. I claim that medicine used for our market are not of the same quality as the ones in the West. This was why I wanted to take her to Germany straight away, not knowing even how much it would cost. I asked the doctors only to postpone her treatment until morning, until I reached the Germans. The doctor agreed. However, in the morning, the head nurse of haematology (I have nothing bad to say about the nurses in Tiršova, they are very devoted to their job) was calling for us: “Petričević, Petričević, you’re going home”. I was elated; I thought they had diagnosed her wrong. However, the discharge form still said: “acute myeloid leukaemia”. They were letting us leave with that diagnosis! The nurse told me that the Chief of Department, professor Dragana Janjić (who is still the Chief of Haematology in Tiršova), signed the discharge form. I rushed to see her and ask what it was about, and she replied: “Your child is sick, but you asked to go to Germany.” I explained to her that I was just asking for time to check if I would be able to organise something like that. She told me, in the hallway, in front of everyone: “You don’t have any faith in us, and you think that we will treat your child. Your daughter is severely ill, but you clearly don’t want us to treat her.” I explained that I just wanted what was best for my child, and that it wasn’t my intention to insult anyone. She replied: “That is not my concern. You don’t trust us, and we are not in need of another serious case like your daughter.” I begged her to change her mind. I knew I had no other option.
You live close to the Mother and Child Healthcare Institute; why didn’t you take Tara there?
Because we took Tara’s blood count results first to professor Dragan Mićić, exactly at the Mother and Child Healthcare Institute. He has great knowledge, but very bad approach. When we brought him the results, he looked over them and told Tara: “Girl, you seem to have a very severe illness, which is fatal.” My Tara jumped up and started crying. I told him that that was uncalled for and that he couldn’t say something like that in front of an unprepared child.
What did the German doctors say?
I knew that Tiršova had discharged us, and that I couldn’t go to the Institute. I contacted Dr Nadežda Basara immediately. She is a Serbian doctor who used to work in Germany. She was moving then, and she was in no position to admit Tara, but she promised that we would keep in touch if I needed anything. She told me that the treatment they intended to give her at Tiršova was good, and that it was by protocol. I begged the Chief to readmit my child, and in the end she gave in. However, she gave her the worst room, the so-called “box number 13”. Treatment which was given to Tara was supposed to last for five days non-stop. When it started, her mouth and tongue began to swell up. She was having an allergic reaction, clearly to a cytostatic component. The problem with Tiršova is that they have a different specialist on call each night. So, that night, a haematologist wasn’t on call, but a gastroenterologist. He decided to stop her treatment. Tomorrow morning, Dr Lazić, haematologist, put Tara in ICU, because she had to receive the cytostatics in full. She spent the entire night there. I sat in a chair just outside the ICU and waited. On the third day, I told Tara what she was suffering from. Her first thought was that she was going to lose her hair, and that was a terrifying revelation for her.
How long were you at the hospital after the treatment?
Since the treatment aggressively destroys bone marrow cells, there is a significant drop in the leukocyte and thrombocyte count. And in that state, after the treatment was over, they discharged the child to go home and recover. It was the end of January, winter. Even though I work in Healthcare, and I know the risks, they didn’t even occur to me, I was just happy to go home. Then we brought Tara, with zero leukocytes, into the lift where they ride with dirty laundry, and patients from the operating room, with just a mask over her face, and took her home. That night, around 10PM, she got a 40°C fever, and we brought her back to hospital immediately. They ordered a blood culture immediately, and put her on antibiotics. That was when the agony started. It lasted for 40 days, and I don’t know how Tara made it. She got horrible sepsis, her CRP was 442. They told us then that we should find thrombocyte donors. Tara is a very rare blood type, AB, and it was extremely hard to find matching donors. That doesn’t exist in Germany. You as a patient do not ask for anything in that situation. They provide it all.
Tara got through that situation too?
She woke up one morning and said that she couldn’t see, that everything was red. They told us it was necessary to consult an ophthalmologist. They called a doctor from the Ophthalmology Clinic in Pasterova, and she said that she needed to send her for an emergency check-up in that clinic, because Tiršova doesn’t have the necessary apparatus for ophthalmological examination. This was in February, it was snowing outside. My child had sepsis, high CRP level, she was fighting for her life for days. Doctors from Tiršova tell me: “Just walk your child to the Pasterova clinic.” My brother and I took Tara, put her in a wheelchair, and entered that lift where they put dirty laundry. We got to the eye clinic, which is in horrible shape: endless stairs, no lift, people waiting for their examinations everywhere, coughing, sneezing. We literally carried her in the wheelchair to the examination room where they established that the low thrombocyte level caused bleeding in her fundus.
What other kind of problems did you have to face during the treatment in Belgrade?
Such an illness, which my child had, demands a thousand examinations, check-ups with different specialists. She would always go to these examinations via lift everybody used. Again, these children have an extremely low leukocyte count. Also, you can never get your anamnesis. My Tara would be examined every day by a different resident. While she was in Germany, Dr Basara examined her every day, and she was always familiar with all the details of her state of health, what the findings on her lungs were showing, etc. At any moment, you can get whichever finding you want. In Serbia, you’re not allowed to. Tiršova has rounds every morning and doctors in white coats and shoes walk into the room of a child with zero leukocytes. Completely insane conditions. The cleaner cleans the entire department with one rag. I asked her not to clean our room very soon, and did so myself every day. My child’s treatments made her throw up, she wasn’t eating, and they should have given her medicine against nausea. That’s completely normal. Only when I told them that she was severely nauseated did they give her the medicine, and she stopped throwing up. You have to ask for everything, but what if you’re not a healthcare worker, then how do you know what to look for? Also, when Tara was supposed to have her central venous catheter removed, we came to the hospital at 7AM, waited until 6PM (she hadn’t eaten anything then), only to have them say in the evening that they had forgotten about us completely, and that we should come back in the morning.
What happened to Tara after she was no longer in critical condition?
By some miracle, she recovered from sepsis. A bone marrow puncture also showed that she was in remission. I was in touch with Dr Basara the whole time. I wanted to send her blood sample to Germany. Dr Janjić refused to give them to me. Then my ex husband arrived to ask for them with a friend of his, who was the head of a pharmaceutical company at the time. Starting from then, Tara got the suite, and became their favourite, and they let us have the blood samples. I sent them to Germany, England, the Netherlands, because those countries perform the so-called fish method, a chromosome analysis which isn’t performed here. The analyses of the chromosome anomalies from the laboratories in Germany, England, and the Netherlands were incongruent with the ones from Serbia. In the meantime, Tara started with her second treatment, they let her go home again with low leukocyte count, and went back into the hospital that same night with a fever again. That would repeat after every treatment. They would let us home, we would come back the same night. Then, Serbian doctors said that Tara should undergo a bone marrow transplant. Based on an Agreement signed back during Tito’s time, our children go to Italy for the transplant. Test tubes with the child’s blood aren’t sent over there legally, but the parents who take their children there need to smuggle them in their suitcases, and wait for the so-called typing to be done. I knew then that my child would not go to Italy.
That was when you definitely made the decision to continue Tara’s treatment in Germany?
Yes, but I had no idea where we would find that money. Bone marrow transplant costs €200,000. When I refused to get her bone marrow transplanted in Italy, professor Janjić asked me “if I were crazy and if I even knew how much money I’d need for that intervention.” At the time, my salary way significantly smaller, I was on a leave of absence. It is important to mention that even today a law is in force which states that if you or your child is suffering from a malignant disease you have a right to only take 4 months off per year. After the remission, Tara fell ill again in November. Doctor Nada Krsteski called me and said: “Your child is sick again, what are you going to do now?” They were appalled that I wanted to proceed with my child’s treatment someplace else.
How did you manage to find that money?
We all came together, my brother, my best friend, Tara’s godfather, Tara’s father. My ex-husband worked at Dunav insurance then. He had his ways of coping with her diagnoses. He ran away from it, hiding it from everybody. I told him then: “Go to your boss and ask her for at least some money, so we’d at least have something.” Tomorrow morning, Dunav insurance put in €201,000 for Tara’s treatment.
What did you encounter when you went with Tara to Flensburg?
Flensburg hospital was no perfect hospital, we didn’t see any luxury there, but it was a normal hospital where everything operates as it should, and where everything serves the patient. Doctors and others who visit the patients must have overshoes, masks, protective suits… A thousand times would the doctor go to her office, and she would change a thousand times when she went back in Tara’s room. Erythrocytes are waiting for the patient, there is no looking for thrombocytes. They have everything, everyone is kind and professional. When we asked for anaesthesia for the puncture, they asked us in shock: “What do you mean without anaesthesia?” When her treatment was over, based on the experience from Belgrade, I asked the doctor if we should go home, and she said: “What do you mean home, the child has zero leukocytes. She’s not leaving until they’re at a normal level.” In that time, Tara was on antibiotics, antiviral medication, antimycotics. The treatment in Germany was much stronger and aggressive, but my daughter wasn’t even aware that she was receiving it because she had an appetite and wasn’t throwing up.
When was the bone marrow transplant performed?
After it was discovered that she was not in remission, we started looking for a donor. We found him very soon, after only a month. The donor was German, who sent her a letter of support afterwards. Tara was also the first patient who had her bone marrow transplant in Flansburg, because the transplant centre had recently been opened. Doctor Basara brought a colleague from Leipzig to help her, who later became the Chief of the transplant centre in Berlin. He spent each moment with Tara, I have no idea when that man even slept. Tara had a horrible reaction after the transplant, she got an incredibly high fever, she was bleeding everywhere. He threw out all the nurses and only let me stay. He gave her thrombocytes, erythrocytes, plasma, we were trying to bring down her fever. He stabilised Tara only after 4AM. He didn’t leave her side. After 12 days, she was feeling a lot better and we left the hospital with excellent results.
What did your life look like in Germany then?
It wasn’t even a life, but we thought it was. We were sitting like prisoners in an apartment 2,000km away from our home, and lived one day at a time. We spent 11 months there because we couldn’t go back to Belgrade. Tara lost a lot of weight, she was on an incredibly strict diet, she wasn’t allowed to eat almost anything. She loved gummy bears a lot, we would go into shops with the most beautiful sweets one could imagine. But, we were like soldiers because she wasn’t allowed to try anything. This is the reason why I don’t eat gummy bears to this day. I just can’t. We made a bold decision to go home in August. Doctor Basara put us in contact with Dr Olivera Marković, who was the Chief of Haematology at Bežanijska kosa, so we’d have somewhere to perform regular analyses. That fateful November came again. Tara was born on 15 November, and she was almost of legal age. Planning her birthday was keeping us alive. We had reached an agreement on everything, how many balloons there would be, who we’d invite, what kind of dress she’d wear. It was supposed to be her big comeback. At the beginning of November, she got a headache. We had a blood test and biochemistry done, and everything was perfect. All of a sudden, she started sleeping a lot, and Dr Basara, whom I was in contact with the entire time, suggested we perform a CAT scan. A neurosurgeon from Belgrade sent us urgently to Germany because they had found something on her brain. At first, the doctor thought it was fungus. After they performed a control CAT scan, they put her in Neurosurgery Department to do a biopsy. Results showed that Tara had “leukemia cells”, which occur in less than 2% of the cases of acute myeloid leukaemia. Tara was already sleeping a lot and barely moving.
How did Tara react when she found out that her illness was back?
I asked Dr Basara not to tell Tara. She promised she wouldn’t, and she even told her staff not to tell her anything. They sent her to radiation therapy, and she was receiving corticosteroids. However, on December 19, she told us to take Tara home. I didn’t make sense of any of it then. The doctor gave her donor lymphocytes, because Tara knew they were very important, and she wanted Tara to be at peace. We got home, and she became bed-ridden and immobile. She told us to buy the biggest Christmas tree and to put up pink decorations, and she asked for my hairdresser to come over and shorten her wig, so that she’d have a bob cut. That night, she fell in a coma. Even though I’d promised her not to take her to our hospitals, she was transferred to Bežanijska kosa, to Dr Marković. Despite the rule not to resuscitate chematooncological patients, she resuscitated Tara for over an hour. At one point she came over to me and said: “Come say goodbye to your child.”
When I went into the room where my child was lying, all I saw in front of me was a shell, and I realised that my Tara was gone. Later I heard somewhere that souls weigh only 21 gram, and I know that this is true…
The doctor told me later that she would write a discharge form, because “there is no dilemma around what happened.” However, according to our law, if death occurs after less than 24 hours spent at the hospital, an autopsy is mandatory. When I came back the next day to take the documents from the hospital, the lawyer said: “How do you think we can give you the documents without an autopsy?” I told him that my child’s anamnesis is well known, and that I would pay the fine. He replied: “You would definitely pay, but so would the hospital.” I begged them not to do the autopsy. They didn’t listen and they scheduled it for 10AM the following day. In all that chaos, I managed to reach Dragan Đilas, who was the mayor of Belgrade at the time. He was willing to help me, and he engaged the City Health Secretary to put on paper the official decision against the autopsy. My brother and I rushed to hand in the decision to the Institute of Pathology, and we arrived when they were bringing Tara out of the chapel. I gave them the paper at the last possible moment, and they said: “Take her back, we won’t be performing the autopsy.”
We talked about a lot of things, but I never asked you how Tara was dealing with all that? How was her life during these difficult times?
Tara was an incredible fighter. She had made her own fashion blog, and we would always go to photo sessions, even with her purple hands we slathered in foundation. At one point, she even competed and was chosen as one of 15 “best bloggers in Serbia”. She loved dressing like a lady, and she wanted to meet her own Chuck Bass. She wore hats, dresses, she was in love with romance.
I want to emphasise that I am not the only mother who went through this Golgotha. Every day many mothers in Serbia have to live through it. You live a life you think is normal and you hope for the best. Children fighting these severe illnesses do not cry, they endure pain and wait for the day when they would get better, but the conditions they are being treated in are truly horrifying. These things need to change. It needs to be the priority of this country.