Topias’ fight is permanently over now and our little courageous fighter has passed away. The rest of us will carry on fighting a different kind of fight, missing him forever, tolerating the sorrow brought on by loss all the while searching for fragments of hope that once was so we can start having new hope for the future.
When Topias was three months old, they discovered a type ATRT tumour behind his cerebellum. The prognosis wasn’t good, but we began a heavy course of treatments. Over the next 18 months he first underwent an operation to remove the tumour followed by two courses of chemotherapy, three autologous stem cell transplants and a six week course of stereotactic radiotherapy.
During the operation Topias suffered a stroke which meant him losing his ability to swallow. He also lost the hearing in his left ear. After the first course of chemotherapy Topias was admitted to the intensive care unit, but after that his treatment progressed better and recovery was fast. After his diagnosis we spent the first eight months in an isolation room in ward 10 of the Children’s Hospital due to his difficulty breathing and the intensive care he was receiving.
When we were finally able to come home from the hospital and Topias was able to look on as his brother was playing, his own development started to progress. The time spent in hospital as well as the taxing course of treatments had taken their toll, but even then Topias had proved to be a little man with great sense of humour, almost always in a good mood and full of patience.
Topias liked interacting with people, sought out contact and rewarded the attention he received with a happy, lopsided smile. He was always watching what other children were doing and took part whenever he could. Topias loved playing in the sand box and swordfighting with a shovel, a stick or a play sword. Everything his older brother did, was the best. After the treatments were finished, we were still in infection isolation, but the whole family was home. The weather that summer was good, so we were able to spend a lot of time outside and take part in outdoor activities relatively care-free. We were able to live almost like a normal family.
And then Topias’ disease came back. Topias moved into palliative care, now we were only hoping for a little more time with Topias rather than a lifetime. Topias was feeling quite well so we were trying to pull ourselves out of the depths of desperation and keep on going and living as normally as possible, even succeeding for a moment.
In the autumn of 2013 Topias’ condition began to worsen. Our active and happy boy turned into a tired, partially paralysed child who could only be comfortable lying down because he was in so much pain. Treating individual symptoms had us in the Children’s Hospital unreasonably often.
Due to an infection they were unable to do an MRI scan without which we were unable to get a decision on end of life care. Our hope for better moments together was fading by the day. When the scan was finally done in October, the end of life care began straight away. From there on in the doctors and nurses would visit us at home, we wouldn’t need to go to the hospital and they would not skimp on the pain medication. We didn’t want to guess how much time we had left.
Topias carried on for another two weeks. The strong pain medication was working, but it made him tired. Topias was awake for a couple of hours a day, we played with him while lying on the floor, making faces and singing to him. He rewarded our entertaining efforts with a happy smile even though he wasn’t really able to move his arms or his head. For his last few days Topias slept in our bed, one of us parents was with him all the time. We never would’ve guessed how fast the end came. On that night, just after midnight Topias’ breathing got weaker and then stopped. We told Topias how much we loved him, hoping he could still hear us even though he had felt our love for him on every day of his life.
Life before Topias’ death and life after that are not part of the same reality. We’ll always the people who lost their child, who had to witness his fight and his pain and who eventually had to give up all hope for tomorrow. They say the first year after the loss is the worst, but it feels like my husband and I can’t remember a thing about that first year.
Anniversaries, holidays and important dates were always difficult for us, but now that we are in the second year without Topias, those days feel even harder for us. Now that we realise we won’t wake up from this nightmare. And even though the day Topias died feels like yesterday to us, the world has gone on since then in giant leaps. We’re still constantly missing him. There are days that are easier, when it’s enough to look at his photo and wistfully stroke his cheek on the photo. But there are still the days when the tears in our eyes don’t seem to dry at all.
In the middle of our mourning, we’ve still held onto our routines. A little brother was born six weeks after Topias passed away. Day to day life and the passing of time are important. Especially in the beginning our loss was far too near for us to be completely swept away by mourning. Despite this “head on towards the sorrow” has been our motto. We felt that openness with those close to us, our friends and peer families has been important. Their support meant a great deal to us when Topias was still alive and continues to do so after his death.
You can never get over the death of your child but you have to learn to live with the loss. Peer support has played a key role in this. Going through Topias’ life and death, voicing your own feelings and hearing about others’ feelings has beenlifeline that time after time eases the tightness in our chests. Sorrow is moving aside to make room for the good things in our lives and at this moment in time we can say that happiness lives with us once again.
After everything Topias went through, it’s difficult to say whether or not it would’ve been better if the story had ended on that first summer when we were admitted to the ICU. I can’t ask him that anymore, so the ones of us missing him are left to think about it. It would’ve spared him a lot of suffering but we would’ve missed out on many important moment we’ll remember forever. We wouldn’t have gotten to know our lovely, sunny little boy. Thanks to the treatments we got some extra time to spend with Topias and to support and strengthen each other and our family. Topias and the loss of him are a part of our family. Topias is with us in our hearts and our memories as painful but dear images and feelings.
Thank you for being, Topias.