We became a cancer child family very quickly, we still are one and we are living in this “world of ours” with other families in the same situation. Sebastian Sulo Olavi got ill 18 months ago with T-cell Non-Hodgkin’s Lymphoma. We decided to stick together, win and get through the difficult times together.
The disease took us by surprise. We took Sebastian to see the doctor on a Thursday in May because we suspected he may have asthma or possibly because we felt something near his thyroid we thought it might be something wrong with that. Because of his tiredness Sebastian was referred to an ultrasound on his thyroid for the following week. The referring doctor wasn’t too concerned about the brave and talkative boy. During the weekend however, Sebastian’s condition worsened, he had difficulty breathing.
On the Tuesday after the ultrasound the doctor looked uneasy when he said “The thyroid is ok, but there is a mass proturiding from under it. You need to get to TAYS (Tampere University Hospital) straight away”. At TAYS we were met by a paediatric cancer specialist. Sebastian underwent several tests and isolation to protect from infection was put into place straight away. They started to get us “settled in” at the children’s ward LO6. The whole situation felt absurd. It felt like we’d been dropped in there from outer space.
Sebastian walked into every examination on his own two feet. He was tired, but from the very beginning he agreed to submit to every test necessary. On the Wednesday during the examination Sebastian’s condition worsened. Sebastian was put on a ventilator in the intencive care unti and he was kept under general anaesthetic for a few days. Sebastian thought that the central venous catheter which they installed while he was under general anaesthetic, was the illness he had.
When Sebastian first came back home, he had been given a few hours’ “leave”, he was happy to be going back to the hospital. He was sore and felt he was safe in the hospital. A lot of this was due to the fact that he was always told what was being done and why, how long it would take and that it would help his recovery. However it was difficult to understand and accept when his hair started falling out, twice over.
We felt safe with the nursing staff from the very beginning. We are particularly grateful to Sebastian’s own team of carers who gave us a lot of support especially in the beginning. The doctors nevere tired of explaining or going through things with us over and over again. Even though we were afraid of the unpredictability of the cancer, we were confident from the start. We thought: this will turn out the way it turns out. This is out of our hands.
Thankfully the treatment response has been good from the beginning and the treatment has progressed according to plan.
Sebastian’s little sister, two and a half years old at the time, says now that she missed Sebastian during the time he was in the hospital. And it was no wonder: she was used to following her big brother around everywhere. She stopped going to the sauna and said she didn’t know how much longer she would continue this. At that time we had no idea when Sebastian’s CVC would be removed and we all could go to the sauna together.
A short while before we found out about Sebastian’s illness, we discovered I was pregnant. For a time it felt conlicting to carry a new life inside me while Sebastian was fighting for his life. On the other hand, expecting a baby distrated us from the cancer, but it also worked the other way around – because of his cancer, the pregnancy wasn’t on my mind as much as it would’ve normally been. The little sister was born on the same day Sebastian was at the hospital with his grandfather to receive the last of the chemotherapy to be administered via the catheter. We were now a cancer child family of five.
Sebastian is now six years old and is doing his best to live the normal life of a six year old. All this is affected by his existing medication, the maintenance phase which is dictating how to act and how to live. Sebastian’s condition isn’t the same as other children’s. For example, if we’re at a birthday party on one day, the following day Sebastian is too weak to attend pre school. His blood count is low, it’s being kept low with medication. This causes tiredness and makes it necessary to avoid any germs. His ban from the swimming pool is particularly hard for him to take. But his hair has grown back – I guess it will be a while before we’ll be going to the barber’s!
For a child, an illness soon becomes routine. Medical terminology and treatments have made their way into Sebastian’s and his sister’s play time. When he grows up, Sebastian want to be a doctor in a hospital.
We’ve gotten support and help from our family, work colleagues and care staff. Peer support has been particularly meaningful. Would we have recognised our own needs without this ordeal? Why does it take an ordeal like this before you stop? During this trying time we’ve become stronger, we’ve grown emotionally.
Will we ever be able to get rid of the fear? It’s so easily activated. As a mother, I’m often experiencing conflicting, overlapping emotions. My spouse asks me: yesterday you were trusting, what are you afraid of now? Thankfully the birth of our youngest child detached us from the hospital life in a positive way. She has brought exceptional joy to the whole family. A new life has felt good, and its arrival has done us the world of good in the midst of this serious illness.
The new baby sister has been very imporant to Sebastian. His focus has shifted from his illness to the baby. She hasn’t been a cause of jealousy but a source of joy for Sebastian. Sebastian and both of his sisters can now spend time at home, play together and lock horns and argue as normal children would.
In the midst of an illness, a good day is a good day. Seeing this and our joint decision to survive and great, safe care have brought us this far, to today.
We are grateful.