One year ago today we were told Cruz had leukaemia. I will never forget standing in the emergency room at the hospital trying to understand what the doctor was saying. All I knew was that leukaemia was cancer and how could our gorgeous little 16 month old boy have cancer. By that time he was in so much pain he couldn’t walk, his blood count was critically low and he had pneumonia. Treatment started the very next day. Throughout that first month in hospital I lost track of the number of chemo drugs with names I couldn’t pronounce, blood transfusions and anaesthetics he went through. Our little boy who 2 weeks earlier had been running around carefree was now so sick.
We finally left hospital, but not for long. We continue to be in and out for admissions and appointments. Neutrophils, transfusions and emergency department have become part of our world now.
He started walking again, then lost all of his hair. The drugs made him sick, steroids made him angry and the ongoing sleepless nights have tested us almost as much as the disease has. We have held our boy in the operating theatre as he goes to sleep, and after 27 times it still hasn’t gotten easier. We have seen him look so sick we could hardly bare it. And tried to explain why he has a port and why he shouldn’t pull out the nasogastric tube again! We have watched our little man bravely sit still as they do yet another finger prick – even telling the nurses which type of band aid to use. He knows what every doctor’s instrument is used for and reminds them if they forget to take his temperature or listen to his heart. We have entered a new world were our bathroom cupboard is filled with chemo drugs, hospital visits are common and the seriousness of every cough and sniffle depends on the results of his most recent blood counts.
We have cried a lot. From worry, sadness, frustration and knowing that the treatment we are giving him sometimes seems worse than the disease. We have spent countless hours in the oncology centre with other parents and kids, some on the same journey, some on different paths - but knowing that any of us would trade places with our children in a heartbeat, if only we could take it all away for them. I have felt mad that my gorgeous little boy is going through this, and guilty for the time not spent with his sister, and upset at the freedom that is taken away from our family.
But kids have a remarkable way of making you see the positive in things and we have also had some amazing times over the last year. I have never been so acutely aware of how precious life is and how special every moment we spend with our families are. I have been stunned at Cruz’s resilience and the way he fights back from every challenge. I have been overwhelmed by the support and kindness of the people around us. We have found friends in the most unlikely places and have strengthened our best friendships even more.
The end of the first year of treatment feels like a milestone. We're finally making trips to the park and cafes and the footy again. His cheeky smile is coming back and his "happy dance" is contagious. He is a joy to be around and really does deserve the name he's given himself - "Super Cruz".
We still have another 2 ½ years of treatment to go, but all going well we’ll be having one hell of a party in November 2018 when this can all become a distant memory.
Thank you to all the people who have been on and are continuing to come on this roller-coaster with us. And for anyone fighting this hideous disease and to those supporting others as they fight, let’s look forward to a day when no family ever hears the words “your child has cancer”. September is Childhood Cancer Awareness month, if you can donate money, your time, or blood please do.
Published with permission from Kelly Kajewski, mother of Cruz (2yrs) and Lucy (3yrs)