Two years ago, our daughter Guusje is in hospital. My wife Yvonne and I are sitting beside her bed. A friendly doctor walks into the room. She tells us that she wants to talk about the CT-scan made earlier that day. Together we walk to another room, and take a seat. Three doctors are sitting in front of us. One of them tells us they have seen a tumour in the left lung of our daughter, and spots in her right lung.
And then there was silence, deadly silence.
Lightning struck. I hear cancer. I think death.
It is as if I find myself in a very bad movie. The doctor tells us that Guusje will probably remain hospitalised for a very long time. He decided to book a room for us at the Ronald McDonald House. This is a place where parents can spend the night, when their child is in hospital. He did that with the best of intentions, but my thought is: “Who are you to make that kind of a decision for us?” I hadn’t realized yet, that our lives didn’t belong to us anymore.
We had to stay in the hospital for a long time. Everybody kept on telling us that we needed rest. But a procession of caregivers passed by her bed: nurses, more than 60 nurses, oncologists, paediatricians, surgeons, radiotherapists, physiotherapists, psychologists, and that wasn’t even the end of it. Each day, when we woke up, we didn’t know what was going to happen next. We were lived.
When our daughter was in hospital three things were important to her.
First, going to school every morning, even though it was just for an hour. Then she could show everyone how smart she was.
Second. Painting for half an hour, on Tuesdays. She loved showing her creativity and was always proud of her work.
And third. The rabbits from the children’s farm. They visited the hospital every Thursday afternoon. Guusje loved to pet them.
However, I remember that these three things were often cancelled. Not because of life-threatening situations, but because of the planning of the scans and the examinations.
Guusje could not participate in the activities she found important. They were not important enough for the hospital but they were extremely important for her. Why? Those activities gave her the feeling, that her life still belonged to her.
Just like every other child that is diagnosed with cancer in the Netherlands, Guusje also received the Beads of Courage. There are a lot of different beads and they all represent a different treatment, experience, or milestone. Like a yellow bead for an x-ray or a scan, a green/orange bead for chemotherapy, a green bead for a very bad day, and a pink one for a very good day. They are all put on a string in chronological order. These beads helped our daughter to talk about her disease. The string with beads symbolized her courage and what she was going through in her young life.
We had been in the hospital for seven weeks in a row, and during those seven weeks the string with beads was growing fast. Then, one day, her oncologist entered te room and said: ‘I have a present for your tenth Birthday, Guusje. I want you to go home for a week. My present for your Birthday.' A week at home. A week without sixty nurses. A week in which Guusje could decide to paint whenever she wanted to.
We prepared ourselves for going home. But Guusje wasn’t really comfortable about the idea of going home. She felt that that we, as her parents, were not able to give her injections, or deal with the feeding tube. Guusje wanted her favourite nurse to stay with her at home that week. She didn’t understand that this was impossible.
Two of the nurses noticed Guusje’s uncomfortable feeling. They started to train my wife and me in giving injections and how the feeding tube works. After a few days of training these nurses and Guusje decided together that we were qualified enough. My wife and I received a diploma from them. We passed our test and graduated.
Patients, like our daughter Guusje, have to adapt to the organisation of the hospital. You, as professional caregivers, have the ability to give the feeling to patients that they are in control, simply by giving them a choice. It’s in your hands.
This feeling of having choices, of making decisions, of being in control is important. Your work is about human lives. Medical interventions are carried out on people. And their lives belong to them.
And Guusje? She had an internal bleeding seven months after her diagnosis, which filled her belly with blood. She was in a very poor condition. I had to tell her that we loved her so much that we could let her go. We were sitting around her bed: her mother, her father, her brothers, her sisters and her favourite nurse. We had to wait for hours and just when nobody expected it, she chose her moment. Her life belonged to her.
Watch this TEDx Talk on YouTube via
Watch this TEDx Talk on YouTube via