A child is apparently very healthy in the world - and suddenly gets sick. The doctors do not know what the boy has and try everything. Tobias fights and laughs. But he dies. Minutes of an early farewell.
We are happy about our Tobias Heinz.
God very grateful and happy are Johannes & Elisabeth Roller with Henriette and Charlotte.
On May 23, 2009, at 8:25 am, weighing 3250 grams, 50 centimeters long, Tobias Roller was born. At the initial examination he gets "Apgar 10", the best value that a baby can achieve.
Two days after delivery Elisabeth Roller and her third child leave the hospital. The family is complete now. God has always been with us, says the mother.
Tobias doesn't cry much, drinks at the breast, sleeps quietly. Years ago the girls just lay there as babies or they roared. He was different, he talks with his eyes, remembers the father.
The sisters, two and four years old, look at the baby, they like that it is small and has long eyelashes.
When Tobias is 14 days old, he gets a cough. He coughs and vomits, the pediatrician recognizes a bronchitis and prescribes antibiotics.
A child needs fresh air, says the mother, and places him on the balcony for a nap; that had always pleased the girls. Tobias does not want to sleep in the open air, he coughs and screams as if he is suffocating in the fresh air.
He vomits more than he ingests, he also vomits the antibiotics. When he vomits, he writhes in pain, but as soon as he gets his strength, he smiles.
The pediatrician sends him with blue light to the University Hospital of Tübingen, where they examine his urine, his stool, all his organs and his blood. They need a lot of blood and soon the doctors will not find any more veins. They keep biting into the baby body, and sometimes it takes 30 minutes to get enough blood. Tobias cries, his lungs whistle, and the parents hold his head and cry too.
When the doctors had done their job, Tobias smiled at them, remembers the father.
In the hospital he is infected with a germ. He is nine months old, has pneumonia, and his immune system is crazy. His medical records are sent around the world on the medical intranet, but the doctors only know what he does not have: not cystic fibrosis, not hepatitis, not the copper storage disease, no mitochondrial defect. The values do not fit, the doctors have to guess. Congenital immunodeficiency, they believe.
They recommend a bone marrow transplant. The father looks at his child, sees the tubes, hears how it battles for every breath, and knows it will not survive the procedure. He says no.
A friend advises the parents: Leave him in the clinic. If one is so sick, it has no value. At some point the call will come, and everyone will be redeemed. The friend himself had a sick child whom he left in the hospital when it was two months old. After six weeks the call came.
Everyone makes their own decision, and we are not allowed to judge. My friend is a good person, says the father, but we are thankful to God that we did not follow the friend's advice.
Tobias spends his first birthday at the University Hospital Munich. He can lie on his stomach and try to crawl, but he does not weigh five kilos. Parents divide life into layers. Day is the mother's turn, at night the father, the child should never be alone. His head and body are peppered with cannulas, his lungs whistle. He laughs at his father, like someone who is happy with the life he has.
The mother buys hospital cleaning products, disinfects her hands and the apartment with Sagrotan, because from now on it can not only be clean at home. She throws out the house plants. Every germ can kill Tobias. He now has a feeding tube and is allowed to go home.
Every morning, the mother prepares the porridge, which is full of calories and easy to digest. The mother is a good cook, but she does not know how the porridge she mixes for Tobias tastes. She puts cortisone, as well as several antibiotics and antimycotics into his porridge. 15 medicines approximately, at least. What exactly is it - who knows? The drugs relieve the disease, but they do not make you healthy.
The porridge comes in a pack, the pack to a motor, the engine to a hose and everything together in a backpack. The backpack stands in the living room like a peg in the pasture, which prevents the kid from running away. Tobias is the kid. His hose is six meters long. The engine pumps the porridge through the tube in Tobias' stomach. So he crawls through the living room.
If the curiosity is greater than six meters, someone must put the peg, and usually it makes Henriette, the big sister. Tobias is her doll and she is his doll mother.
The master bedroom is being rearranged.
It is still called the master bedroom, but it is no longer the room where the parents sleep. In the master bedroom, Tobias sleeps next to his father. Ten times, he gets up at night 20 times. When Tobias coughs, when he wrestles for air, when he turns and the hose kinks and the engine beeps to wake the father. The
Mother is sleeping with the girls.
One night, he gets up because the beeping of the engine woke him up. The night is almost over and he thinks he will not last much longer. And suddenly he feels something in his hand, something warm, something little. It's Tobias's hand caressing his hand. The father feels the power flowing back into him.
The engine pumps porridge 20 hours a day. When the family has dinner, Tobias sits in his chair and watches his family eating. He does not want to try. Everything he needs flows through the hose and makes him full.
He learns to speak. His first word is Dad, he speaks it in April, at eleven months. He is smarter than me, thinks the father. He is learning to walk. He bumps against the table leg and breaks his hand. He sits down to play on the floor and breaks his leg. The MRI shows that his bone structure is porous. No one knows what illness he has. Tobias coughs and thrives. At two and a half, he is supposed to learn how to eat, so the mother distributes treats in the flat so that Tobias finds them when he turns his rounds on the tube. He finds and tries and learns that food tastes good. From now on he can order as in the restaurant. Ice cream in the morning, chocolate at noon, cake in the evening, pork roast or pizza or popcorn in between.
He just has to go to the hose at night. In addition to the nasogastric tube he gets
a hickman, a permanent cannula, in his chest. The infusions he gets once a week at the hospital. Doctors wonder how well the child is developing. The nurses are in love with the long eyelashes and the long sentences. If they did not know that he was terminally ill, they would think he was in good health. Tobias is not allowed to go to the swimming pool. Not to the movies, not to the hustle and bustle, not to the sisters' theatrical performances. He is always at home. The mother says: Tobias, we both do not want to go to the pool. The father goes swimming with the girls alone. The mother takes him to the garden. Each child has here two square meters. Tobias is planting potatoes, strawberries, carrots, lettuce. He gets bored at home and watches when the sisters do their homework. One day, they play shopping, Tobias hands the father a note. "PAPA, PLEASE DO PAY". He is four and a half years old.
He is allowed to go to school, gets a satchel and a school bag. The school bag is emptied so he can keep it alone for the photo. He is the best student in his class and his writing is engraved.
Tobias is five and a half, when just around the corner, in Freiburg, a professor recognizes
what he suffers from. His disease is called STAT 1: a mutation that affects the immune system, cell growth and reproductive ability. Everything the doctors had assumed so far was wrong. The immune system of Tobias is not weak, but highly aggressive, and it tries to kill the organism.
Only 16 people in Europe have this disease, and none is older than 31. Only new stem cells can save their lives. The doctors are looking for a donor for Tobias.
He goes to first grade and does not miss a day. He is allowed outside, allowed to play football with the sisters hide and seek and football with Lasse, his school friend. He is allowed to ride a bicycle.
In the first summer holidays the family drives to the south of England. Tobias is allowed to swim in the sea for the first time in his life. He can not swim, but where it is shallow, he raves with the sisters. Back in Tübingen, a matching stem cell donor is waiting for Tobias. We can ignore the disease, say the doctors, we can give antibiotics and cortisone, and watch her kill him slowly but surely, at 14 or 20. Maybe then he has already met love or doubts about life and God , The other option would be to try to save Tobias with new stem cells.
The probability that he survives the procedure is 50 percent. He can get well or die, all or nothing - the decision now lies with the parents.
Tobias is strong and robust, the time is better than ever, the parents say yes. At the end of September 2016, the parents bring Tobias to the University Hospital Tübingen.
September 26 to October 3, treatment step 1: seven times chemo.
4th October, treatment step 2: irradiation.
October 5, treatment step 3: injection of donor cells.
Again, parents divide their lives in shifts. During day the mother is with Tobias, at night the father. He had just played football, now he needs morphine for the pain. Tufts of hair are lying on the pillow in the morning, the scalp, which repels the hair, itches. Father and son are playing hairdressing. The father cuts off more and more hair, last they play cut bald.
After two months, Tobias is released, celebrating Christmas and New Year's Eve at home. He is a lucky child. In January, the first crash follows. In March the second. Tobias lives in the hospital again. To stabilize the immune system, he gets high-dose cortisone. In no time, it swells the delicate body. His face swells, his stomach puffs, his hands tremble. The parents take the mirror out of the room, Tobias does not like to look at it. I look like an old man, he says, looking at his stomach.
The father makes videos. Tobias sits on the hospital bed, next to him the doctors and nurses and a bowl, because the stem cells are injected ice cold and produce strong nausea. Three times Tobias gets new stem cells. He may take blood from himself.
His face is a balloon, his eyes are only slits. The parents hardly recognize their child, it hurts them that it is disfigured, almost more than the knowledge of the disease. Tobias laughs at the camera.
The hospital room is under pressure, you can not open the windows, sterile oxygen flows through a shaft into his room. Tobias knows he can not break the line painted on the threshold. He stands in front of the line in the door frame and laughs when he sees the camera.
At the window he waits for rescue helicopters to bring emergency patients. He knows everything about helicopters and would like to fly once.
Daily one hour of school with a teacher with surgical mask, half math, half German. The father invites him to a Bible app on the phone, so he makes his reading passport. He is far more intelligent than the children in his class.
The doctors give him an anatomy book and he learns it by heart.
Von Herzenswünsche e.V., a relief organization for children with childbirth, gets a toy ICE for free.
He does not think about the disease, he thinks about which dishes he has an appetite for and how they could be prepared.
Poor knights: white bread, milk, eggs, sugar and cinnamon
Rich knights: brown bread, cream, eggs, ham and cheese
He writes the recipes in fine writing and gives them to the nurses.
Tobias celebrates his eighth birthday at the hospital. The doctors bring gifts, the sisters sing, he is the happiest patient in the hospital. "Thank you so much for the birthday, dear God," he whispers before falling asleep. He is doing well.
Subject: Daddy My Pot of Gold
Dear Dad I missed you a lot when you were in France. Greetings from your sunshine Tobi love you very much I'm glad that you're with me Tobi
In mid-July, all values break down, without a sign. The inflammatory value is more than 79,000 instead of 4, something the lab has not seen. The lung collapses and needs pure oxygen for 14 days.
The father does not want Tobias to know the truth. Tears are running down the path to the hospital, his shoulders are hanging, but he, with the door handle in his hand, pulls himself up and enters the room laughing. As soon as he leaves, he turns grey and sad
In Tübingen these days, several unusually clear rainbows appear, once a double, completely closed, bright inside. They look like bridges in the sky.
On the night of July 25, body function failure. His bed is pushed to the intensive care unit, the doctors are running. The cuddly toy he used to sleep with all his life should not be part of it, Tobias decides. Dad, I do not want anymore, he whispers, as the father leans toward him.
At midnight, the doctor says: Call your family, Tobias will die tonight.
At one o'clock they are standing by the bed, the mother, the father, the sisters. They cry. Tobias breathes, his eyes are closed, the machines beep.
One by one, the doctor turns off the devices that keep Tobias alive. The beeping stops. You only hear his tired breath and crying.
Tobias Roller stops breathing at half past one. The room is quiet. The family is standing by his bed and can not cry anymore.
The sisters wash their little brother, they take the shampoo they gave him and get their favorite towel, the sheep.
Tobias has been away for four months. He does not sit at the dining table, gives away any recipes, does not write e-mails and no longer paints pictures. When cleaning, the mother can omit the Sagrotan. The master bedroom is again master bedroom. The nights are quiet and long.
The girls are making advent calendars. They should have been for Tobias; Now they give each other a gift. The family goes to the pool, all together. In summer they want to go to the North Sea. Like a normal family, father, mother, two children.
Heartfelt wishes, the club that gave Tobias the toy ICE invited the family to the amusement park. We do that, said the mother, and Charlotte, softly and stunned, asked: Are you really going to come too?
The mother looks ahead. Father, mother, two children - life goes on and is beautiful. The girls begin to get used to the fact that they are now the center, they often come on their parents laps. Henriette looks like she's in class, said the teacher recently.
The father looks back. As often as possible, he is in the cemetery. The cemetery is located on the mountain, and in the valley flows soft and brown the Neckar. Down in his grave is Tobi, the grandfather, the great-grandparents, the great-aunt. And up in the sky he looks down on everything. And the father longs for it, do not be afraid, looking forward to being there soon.
Swabian Tagblatt, 29th July 2017:
God will wipe away all the tears from their eyes, and death will not be anymore.
Tobias Roller, May 23, 2009 to July 27, 2017.
In deep sadness
Johannes and Elisabeth Roller
Henriette and Charlotte