It was a sunny spring in May 2013. Nature was slowly coming out of hibernation. Summer was on its way. Three year old Jerry, bouncy little boy was very much looking forward to the summer and warm weather – soon he could go swimming.
In the middle of May, Jerry started to feel unwell. During the day he was feeling almost normal, in the evening he would feel feverish, ill, and had pains in his joints. His condition got so much worse, we were admitted to a paediatric ward after visiting the A&E. In the paediatric ward we underwent tests and scans and were kept under observation but as nothing showed up in the results, we were discharged.
“Come back if something changes.”
A few weeks later, we’re in the same situation again and get to the hospital that night. Again we’re admitted to the paediatric ward, more tests but still no explanation as to the symptoms.
“Go home, if he starts to feel unwell, come back.”
A week went by, and as the evening progressed, the pain in the joints got worse. The paediatric ward in the middle of the night – what is this, no scans or tests are giving us any answers? A full body scan reveals abnormalities in several joints. Next up is a bone marrow biopsy.
Painful hours, we’re waiting for the procedure to be over and the results to be confirmed. We’re invited in to the doctor’s office to hear the results. There are two doctors and a nurse, all very serious. This is going to be bad news, we can tell. We’re asked to sit down, we’re holding each other by the hand.
The doctor tells us that Jerry has leukaemia, low risk level ALL. The world goes black and it feels like there’s no air to breathe. This cannot be true, has there been a mix up, is he going to die, is this a nightmare? Surely a small healthy child, who’s cleaner than clean, cannot have leukaemia, isn’t that supposed to be an old people’s disease?
Medication and a four week long isolation period started immediately. I took time off work so I could look after Jerry. The hospital became my second home. During the days I looked after Jerry and in the evenings I went home to look after Saku. Ursula was working, came back in the evenings and spent her nights in the hospital. After several weeks we understood that this deadly serious disease is something you can be cured of. The battle has started, full steam ahead until the end.
In August the isolation period is over and we can go home. It’s wonderful to be home, but how are we going to manage? We’re panicking a little; will we know how to look after him?
The days start to slowly fall into a routine. No going shopping together. No bringing your brother to practise. No friends. Disinfect everything, keep hand sanitiser handy, avoid people with a cold or a cough, don’t touch the buttons in the elevator, etc. We’re living in a bubble.
The medication is working and the treatment is progressing according to plan. Small setbacks come up along the way, badly attached central venous catheter (cvc) and a couple of isolation periods due to a fever.
In August 2014 it’s been a year. Hurrah, cvc is being removed, intravenous medication is finished and from now on the medication will be taken orally. As soon as the stitches are removed, we can go swimming, lucky it’s still warm out. Now he can play like any other child, wrestle with his brother, climb, ride a bike, oh the joy!
It’s been 18 months of steady rhythm; every second week a blood sample in the health centre, every second week the hospital and a check up. In December 2015 we finished the treatment and the last sample was taken.