Perhaps the Hardest thing to create parents: to have A child in love. Because anything else would be only cruelty. Rachel and her family have experienced it. You have accompanied Talina palliative care – in the family circle.
Little Royal girl – this is the name Talina Liëlle mean Arwen. And small the child was, in fact, Already during the pregnancy, it became clear that not everything went according to plan. The parents were prepared for the fact that the child would live after birth, probably only briefly.
10. April 2013, a little earlier than planned, the Baby arrived to the world – with 41 inches of size and only 1.6 kilos of weight. But: Talina lived, breathed independently and able to drink. After three weeks, the preterm birth Department, with only 1.8 kilos, the parents, the child home, where the big brother Amaël waited eagerly to his sister.
The baptism, on 20. In July 2013, was at the same time, the wedding of the parents. Talina was beautiful, if also so small and petite that her brother was in the doll for a walk to the car. And the remained in the next weeks and months: The girl developed the potion is extremely slow and very little, but, with a few allergies, and normal – just small. Of course, the parents were concerned, and also the children’s doctor, a longtime family friend, was looking for reasons for the unusual development.
Small but mighty
Talina self-never disappointed – on the contrary: All of the charmed you with her Laugh, played happily with Amaël and made with an energetic "Mi!" all right, if something belonged to her. Or should belong… With close to 60 cm, she began to run, assisted the mother with the cooking, or signed. With all his accurate order had to have. And as the little brother, Timeó, joined the family, schöppelte also Talina loving your stuffed Bunny "Lappi".
Something is not right
Increasingly, Rachel was Worried. Not only because Talina was so small. Which, as it was called, allergic inflammation of lips and mouth spread increasingly all over the face. Rachel was afraid often, the people would hold for a Raven mother, the handle, your child will miss. "So a Bauchgefühl" it was, as already during the pregnancy, she says. And as this feeling increased after the move to Germany, door to door with Rachel’s parents, please contact Rachel once more, the children’s doctor. A appointment because of the flu, it would have to be, this Friday, 24. June. But it was more, much more.
The beginning of a nightmare
After abdominal palpation and blood test Talina was transferred as an emergency to the children’s hospital. Rachel drove himself – and made, again, a gut feeling, that your parents brought the father to hospital. As an assistant searched the enlarged liver with ultrasound, himself realized, the medically-trained mother, in the belly of Talina any amount of tumors proliferate. Since it didn’t help (even if it was love meant to be), that the contracted doctor removed before Entering the examination room the name plate on the "Onkologie" confessed would have.
You will die!
Both parents were clear that they would lose the child to the cancer, even if they talked until three months later. Over the weekend, Talina was once home, and then were removed as the first attacked of teeth, because of the risk of ignition. On Wednesday, the Port was placed, by the Friday of the Chemo.
Although the tumors were barely shrunk, advised the Doctors in October for surgery: The right kidney was, together with the Tumor removed. Because in the case of the OP, the vein was cut, which the abdomen, with blood supplied, had to be fetched from a vascular surgeon from the evening to sew the tiny vein. And the surgery succeeded.
Talina is not giving up
Barely back from the hospital, behaves Talina as always. Teases her brothers, grabs everything, which is kind of Pink and can’t get enough of the stories about Tinkerbell, her favorite heroine. Only the scar heals poorly. And the Chemo, which starts two weeks later, again, seems not to have been successful. The Doctors are on to bigger gun, even if the parents would say, sweetheart no. But after consulting with the pediatrician, and Rachel’s father, they decided, together with the Doctors: A last attempt should be daring.
Only: Talina, who responded beforehand violently to the Chemo, suffered terribly: blood poisoning, pneumonia, fever … Rachel wants to cancel, the Doctors want to complete the cycle.
With a heavy heart, planning the family Christmas in the hospital, including decoration and fine food, also for the caregivers. Then the Surprise: On 24.12.2016 Talina allowed to return home, you simply must return in the evening to go to the hospital. And the 26.12. may take the parents back home. Actually, you should stay a few days at home, but it is not always you have to go back to the clinic.
"Both of my three legs schmerzen"
28. December screamed Talina in pain – something that was previously never happened. Again and again she said that both of her three legs ached, but the pain came from the area of the kidney belt. "Constipation!", a case of emergency, claimed doctor, but Rachel disagreed, she knew from the diaper change, that could not be.
In the early Morning, after hours of pain, was a CT, but not completely, because the child could not lie still. And because the Doctors and nurses are not so as to resist what they saw on the screens, they left the room. Some wept. The tumors were back. More than ever before. Greater than previously.
Rachel stayed over new year at Talina. On 2.1. took over Damien, and Rachel drove back to the other children. On the 3.1. wanted to discuss with the physician the need for further action, but Rachel had already prepared in the morning, a message, for relatives and friends: let’s have a break! And confronted the two Doctors before they could say that they see no possible treatment, with this message:
"We get Talina home!"
And then they organized together: What we need in order to Talina can spend their last time in the circle of your Love? How long will it take? The Doctors don’t want to, of course,. At some point it was called then: "They expect more in few weeks …"
Talinas camp was pitched in the living room, and Rachel and Damien learned, pain relievers, etc. to administer. The ambulatory care service came each afternoon for a few hours, so that Rachel could intensively take care of the other two children. A Monitor watched Talina at night so the parents could get some sleep. The family moved even close: grandparents, godparents, uncle and aunt – they all came over, played with Talina, if you had power, or were just there. The Doctors helped in the Background, but also time.
"On-the-fly, Talina, on-the-fly!"
For the last few hours of Talina let Rachel speak:
"Like in the last 20 hours we all sat at Talina and talked, laughed, and told us memories and experiences that connect us with Talina. We were, once again, her whole life pass by. It was so touching and intense, sad and funny at the same time. It was just so soothing and brought us together even closer.
Then, punctually at half three, our pediatrician arrived, it was not long and we noticed that Talina breathed suddenly very different, and your complete body and specially the face is totally relaxed. After the confirmation of the Doctor and the woman from the children’s nurse, it was clear that Talina would now be your wing span. Daddy stopped and caressed her legs, I sat at her head and drove the skin gently over your bald head. They became quieter and quieter, until it finally opened to three in front three again very briefly her eyes and looked around, and then with my accompanying words ,on-the-Fly Talina, on-the-fly!' slept.
The doctor checked the pulse and said it officially. We cried together, but had to realize in spite of all the sadness, the relief outweighed. We lit the candle, which for that Moment was ready.
My first thought after that is going to accompany me my whole life, and describes the Situation, and it was exactly in this Moment, the best: Talina must, you must!"
What remains
Talina is in the whole house alive. Rachel and Damien have been a bit of a Worry because the younger brother has only a few memories of Talina and also this will fade over time. Nevertheless, are you sure Talina lives in all of them. Because of the short time of your life has all that came in contact with, changed and enriched. She has brought family and friends closer together, and Rahel taught to listen to your gut feeling.
Nevertheless, you will be happy that there is soon also an outward sign, at least, will remember for the next 20 years of your Tinkerbell: a beautiful grave stone, by an artist specifically for Talina designed. He will replace the simple wooden cross that currently stands on the grave, the family members visit on a regular basis. In addition to the shrub with lovely flowers – of course in Pink.
This article first appeared in the "Wissensbuch" of the support Association for children with rare diseases
The Foundation for children with rare diseases is a non-profit Association from Switzerland, which supports families affected by a rare disease. In addition, the Association of Events in which the Affected parties can replace the organized. You can find more information here.
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