In the current issue of the magazine WIR of the German child cancer foundation tells Sabine Kuenzel about how children cope with the diagnose eye cancer – by the example of Buba Gataric, now 27 years los, diagnosed with a unilateral retinoblastoma and Julia Fischer, now 5 years old, diagnosed with a bilateral retinoblastoma.
With an eye prosthesis, but without velvet gloves
How children cope with eye cancer in life
Retinoblastoma. Only one word. A word that most people wouldn’t know or would’ve ever heard of. And still it triggers ideas. Sinister, not good ones. And those, who are told about it by a doctor, will probably not forget that moment. The parents of the nowadays five year old Julia Fischer from an area called Rheinland probably feel that way. The family of Buba Gataric, a young woman, now 27 years old, from Heidelberg probably feel so too. Retinoblastom is cancer, the most common type of cancer in the eye of children. A malignant tumor in the retina. Since the tumor can only grow based on immature retinal cells, the tumor only occurs until the age of 5. That’s what it’s described like in medical books. Julia and Buba- both came to world with the tumor. WIR wants to share their story.
„I have always wanted her“
It was a pregnancy without complications. Just like the birth of Julia. “Everything was easy”, Charlotte Fischer* remembers, Julia’s mum. She laughs and is all smiles while talking to WIR, just like it was only yesterday. She and her husband Sebastian already had two healthy girls back then, one nine and one was eight at the time, and they all really looked forward to Julia. That actually says it all, but Charlotte Fischer formulates it in a way only a mum possibly could: “There is one other that wants to join us. I knew that there was this child. I have always wanted it.” In August 2006, Julia is born in a hospital in Rheinland. As we’ve said: Everything easy, the joy is immense. Three girls in the house, it’s perfect. Six weeks later the family goes on their very first trip together. The baby is on board. No problems whatsoever.
To understand Julia’s story, it is important to know what type of child she is: a smiling, happy, strong baby. A child that gives so much love and joy, that’s what Charlotte Fischer says about her daughter. Of which worth these characteristics later will be – she and her husband wouldn’t know by now. Not even, when friends of the family discovered during a summer holiday in 2007 that “their daughter was cross-eyed” and “advise a doctor’s visit”.
Small children being cross- eyed –quite common, nothing really unusual. But of course Julia’s parents take her to a doctor in Düsseldorf upon return from their trip. It’s the 13h of August in 2007. A date, which is engraved into the parents‘memories. Julia is one year old. And after her examination there only is the short sentence: “There is something.“ They refer the family to the Clinic in Essen, since they were specialists, says the doctor:”There you will see.”
The parents fight to be heard on this very first day. Charlotte Fischer remembers the first time in Essen, without exactly knowing what’s wrong, only with that bad feeling. And the fear:”There was this escalator. And then the announcement: Vision therapy and tumor department.” Which mum would ever want to even think of this, or enter this department carrying their own child? When Charlotte Fischer talks about it, she imitates the voice and the announcement – and the listener can only guess how deep this memory is engraved. Just like the brochure that they got. In big letters there is Retinoblastoma written on it. Right next to it the picture of a child with white pupils. Oh no, she thinks, these are just like the pictures I take of Julia.
At one stroke, a whole life changes.
Julia gets examined. Carefully. Three doctors test her. The white pupil, that’s known from Julia’s baby pictures suddenly make sense: The pupil doesn’t react to light. Then, finally, the doctor names the diagnosis : “Retinoblastoma. Malignant Tumor in the retina. In both eyes.“ Every sentence like a punch. Charlotte Fischer : I screamed, I cried. Her husband, she says, stayed pretty calm. Totally calm. Two poles that complement one another. She says: Our life changed right there. That was for sure.”
Mit einem Schlag ändert sich das ganze Leben
The diagnosis cancer – yes, that changes the lifes of people and their families, entails experiences that not every person concerned can or wants to talk about. “My mum cannot talk about it. She shuts it down completely.“, says 27-year-old Buba Gataric, management assistant in advertising from Heidelberg, born 1984 in Jugoslawia at the time, about her mum. Buba Gataric was born with a unilateral retinoblastoma. She had just turned 2 when doctors in a clinic in Belgrade diagnose cancer. For her mum a shock. She is a single mother. And there she is with her small, sick child. She had never heard of eye cancer in children before. Finds hold in her family and siblings. And energy. Energy for Buba. The child’s eye is removed in an hourly lasting operation. In the cavity there is an eye prosthesis. The color is green-brown, because Buba has beautiful green-brown eyes. Nothing more to tell, says the young woman- and laughs.
She can’t remember a life without the eye prosthesis. She had been way too small. She can, however, remember the small trips going from the small town in Bosnia to Belgrade. And a picture that’s stuck in her memory and that she has in her heart. It’s a nice picture. “I see the plush toys which the super nice nurses always gave to me. I had to look for plush toys in different directions, so they could see the colors of my eye. This way the doctors can create the eye prosthesis. Was there pain, fear of the doctors or examinations, calls after the mum? “No,” says Buba Gataric, “I can neither talk about pain nor fear.” That’s probably a good thing. She seems relaxed and self-confident, happy with herself.
„Why me“
But difficulties and questions – they appeared in puberty. It’s stupid, she sometimes angrily said and asked: “Why me?”. The question, that probably every cancer patient asks him or herself at some point. Buba Gataric now notices that there is something unlike the other children about her. She says: “Children are honest.” She doesn’t say more. But she goes on the offensive. There’s something that her mum gave her in life: Strength. So she tries to say it straight away. Buba Gataric: “Yes, I wear an eye prosthesis. This sentence makes people look puzzled. And she always one other thing, which is that she “doesn‘t want any pity”. She took on her fate, since she “couldn’t change anything about it”. But she is still looking for like-minded people. That becomes clear to her when she meets another girl in her village close to Heidelberg who also had retinoblastoma. “I would have wanted to ask her. I would have liked to tell her my story. I would have liked to exchange experiences with her.” But the girl blocks, doesn’t want it.
Buba Gataric has her friends, her sports mates in her handball club, but she has no one to share her fate with or who really understands her. But she’s alright with that. WIR wanted to know from her if she can describe only being able to see with one eye, to live with it – she must miss it. She replies relaxed: “For me everything was normal. I played handball for twelve years. Never really cared about the eye.” The tough practice in handball fits in her life. Her mum never touched her with velvet gloves. It makes one strong. The 27 year old smiles a bit when she think of her upbringing: “I don’t know if I would allow my child all that.”
Chemo or Radiation therapy?
Can a child of 5 years be strong enough- for those adversities life has to offer? The small Julia Fischer is. When she woke up on the 20th of August 2007 – only one week after the cancer diagnosis – after a two hour lasting operation – her eye had been removed. A dark cavity remains. The child doesn’t cry or complain. It endures. In the week between diagnosis and operation things are crazy in the house of family Fischer. It is a big strain on everyone- including the sisters. In his home office Sebastian Fischer reads a lot of literature, calls experts from all over the world. “I wanted to know everything, understand everything, every detail,” he says. That’s what he owes his daughter. This feeling puts him upright. For six weeks. He seeks out information for 24 hours a day, until he is completely exhausted. “And then my tears were running too.” In the middle of the night, he couldn’t stop it, he calmly tells us. Crying for hours. “It wasn’t just the disease that I tried to understand in every detail. This was about my child and my child’s life that I fought for. The conversation becomes silent.
Sebastian Fischer, studied biology and law, becomes an expert, with whom the doctors of his child can nearly talk on an equal footing. His wife remembers that a doctor once told her: “Ask your husband.” The doctors did not give any specific therapy proposals, the parents have to decide themselves: What will happen to their child, which therapy Julia should get. Chemotherapy? Radiation therapy? Which are the risks? Who helps us decide? And what is about the tumor in the second eye? Will we remove that too and take away our child’s eyesight? Unreal, these decisions parents have to take from time to time.
„Your child guides you“
But the two of them find a way for their child. Not alone due to help of many friends and discussing with them until late at night for one week straight. In between there are crises, terrible crises, especially for Charlotte Fischer, who doesn’t know how her small daughter will endure this fate. A friend of her, who has an ill child herself, tells her these touching words: “Your child guides you.” Which first sounds supernal, proves right in the following weeks and months. Julia endures her fate: Her first eye prosthesis, the radiation therapy, with which the tumor of the other eye is being destroyed. That was the decision of Charlotte and Sebastian Fischer. “At some point“, says the mum, „Julia will ask us, then we want to explain her in full detail why we decided this way.“ In these bad times, however, there is one good message. The optical nerve of the operated eye is not metastasized, the doctors tell their parents. And they are happy, gain hope again.
But it still is a long way, since there still ist he radiation of the other eye. Charlotte Fischer tries to understand how “gamma rays go from one temple to the other and destroy the tumor”. For weeks mum and child live in the clinic. 50 kilometers far away, back home his husband tries to get by with their bigger daughters. In thoughts always in Essen. A parallel world is what Charlotte Fischer calls the meeting point for the small, young cancer patients. Somewhere, anywhere in this Uni- Clinic there are small children – with bald heads, some fearful, exhausted, some calm, other in misery – waiting with their parents to be called from the doctor. Charlotte Fischer reminds the time, which is now 4 years ago: “I often felt completely helpless. Sometimes this fear comes back – comes in waves.” Her life, she says, got richer, but is not as easygoing any longer. Mother and daughter go back to this parallel world on a regular basis. Clinic Essen, escalator, tumor department. Every three months. For check-ups. Always on a tuesday. And they are all there – these little cancer patients. On a corridor, waiting on chairs back to back, more or less patiently. The parents – pull themselves together, somehow; the children pull the rocking horse, the only toy on this long corridor. Aside from a few old books. What remains a psychic burden for Charlotte Fischer, nearly is a “feast” for Julia.
Since she always carries a basket full of her games. Julia loves these games. The mum knows that they do not only help in this very moment, they also help the child to be able to remember a good picture out of bed times once she is a young woman. Just like Buba Gataric, the young management assistant in advertising from Heidelberg, remembers the plush toys in the clinic in Belgrade. People need pictures, beautiful pictures. “They can help,” Charlotte Fisher says confident, “to bow down in front of one’s own fate.” That sounds beautiful. Hopeful. Optimistic.
01.10.2010 | Leading Spirits