A brave boy

Kruden started Primary school in February of this year, and he was one excited boy. Having turned five in November, he had been hanging out for school to start. The first week went well, he was enjoying the new environment, getting to know his new teachers and making new friends. He came home on the Friday of his first week worn out and very tired! His mother Haley remembered “People had told me that school really tires them out, so it was totally expected and we naturally put his excessive fatigue down to that.”

However, a week later Haley was concerned that Kruden was still very tired, and sleeping a lot more than usual. He had also been complaining of tummy pain, which didn’t seem to have a logical cause.

Their first visit to the GP resulted in a “its viral and will blow over” diagnosis. With a mother’s intuition Haley was not convinced as Kruden did not seem to improve. So two days later she took him back to the GP and requested blood tests to be done. Later that evening the Johnson family received a call that the blood test results had been received and that they needed to immediately head to Starship Children’s Hospital.

The doctors were waiting for the family upon arrival, and they delivered the bombshell news every parent dreads… Kruden had Leukaemia. The rest of the night was spent in a surreal whirlwind of activity – endless blood tests, putting in an intravenous line, X-rays and scans - all the while being given continuous explanations by medical staff who were efficient but also incredibly understanding and kind.

Haley remembers it as being such an incredibly difficult and very emotional time. Trying to digest and cope with what was happening, and the feeling of not having any control over anything. All the while staying composed for Kruden’s sake.

The next morning the diagnosis was confirmed, Kruden had Acute Lymphoblastic Leukaemia (ALL) and they were about to embark on an anticipated 3 ½ year-long treatment journey.

This would include approximately 12 months of intensive chemotherapy, steroid treatments, lumbar punctures, and blood tests.

They were told that during this time Kruden‘s immune system would be so suppressed that he wouldn’t be able to attend school, and his little 2 year old sister Bohdi would have to leave her day-care centre and change to home-based childcare, due to the high risk of bringing infections and illness home. In addition, Haley would be unable to work for approximately 12 months due to Kruden’s illness and treatment, leaving the family with an additional (and significant) financial worry.

Taking all of this in and trying to deal with it in a short time frame was an immensely stressful time for the Johnson family which, like most young families, already have a busy full life and routine.

This out of the blue and totally unexpected sudden change in direction had a massive impact on every aspect of their lives.

The Johnson family have been so fortunate with amazing friends and family supporting them through this journey. They have jumped in to keep the wheels turning, including looking after Bodhi, and giving Haley and her husband a much needed break whenever possible.

Kruden has been surprisingly accepting of the situation throughout this massive upheaval of his world and comfort zone, and is taking it all in his stride. He is so proud to already have accumulated more than 100 Beads of Courage, and he loves showing everyone while explaining what they all mean.

The Beads of Courage® programme provides sick children with a colourful visual reminder of their treatment journey, recognising their strength and courage. Each bead represents something that happens along the way, for example yellow is for an overnight hospital stay, and white is for a day of chemotherapy. The first bead each child in New Zealand receives is a very special and unique hand-carved pounamu bead from Nga i Tahu Pounamu. On average, a child diagnosed with Acute Lymphoblastic Leukaemia would receive many hundreds of Beads of Courage throughout their treatment journey.

Even after Kruden’s treatment has finished, he will continue to have significant ongoing effects on his bone and muscle development. There may also be a potential impact on his learning ability, which will require lots of support with ongoing monitoring and input. Kruden and his family have a long journey ahead of them, but fortunately they now know that the prognosis for his Acute Lymphoblastic Leukaemia is 95% curable.

The impact on the Johnson family can never be fully understood unless we ourselves have walked in their shoes, however anyone with children can certainly empathise with what a life changing experience this would be. As Haley and her husband have Partners Life Trauma Cover, we have been able to reduce some of their financial pressure, by paying the free Child’s Trauma Cover Benefit of $50,000, while also waiving all premiums for six months and paying a Public Hospital Cash Benefit under Kruden’s Private Medical Cover.