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Exceptional family shows extraordinary courage

Published Date: 10 July 2013 Categories: Patients, Leukaemia

Perhaps the most eager and accurate Xboxer to emerge from the Philippines, Janmikael Matunog and his family are now proud Australian residents with a resilience and courage that inspires all who have the privilege of meeting them.

On 27 July 2011, an 11 year-old Janmikael (Jan) with acute lymphocytic leukaemia (ALL), received a vital bone marrow transplant that was once thought to be impossible.

Jan and his parents, Joselito and Anna, and sisters Jannina (11) and Mickaella (9), had been living in Darwin when Jan was sent to Adelaide’s Women’s and Children’s Hospital for urgent treatment in October 2010.

Jan had previously been treated for his disease in the Philippines and had recovered well, but he relapsed just a week after he, his mother and sisters relocated to Darwin to join Joselito. The devoted father and husband had been in Australia for three years working as a chef and was in the process of seeking permanent residency.

So soon after their move to Darwin, Anna and Jan found themselves far away in Adelaide – Jan’s leukaemia was an acute form requiring immediate treatment – while Joselito stayed behind for work with his daughters.

When it became evident that Jan urgently needed a bone marrow transplant and no family donor was available, his Adelaide medical teams turned to the international bone marrow donor registry seeking a compatible match.

However, further testing was required and because the family were not yet Australian residents with access to Medicare cover, an upfront payment of $5000 was needed to cover associated costs. Potential donors had been identified, but the additional testing was essential in order to find the one most compatible.

When the Leukaemia Foundation became aware of Jan’s situation through his doctors, we sought the assistance of the Little Heroes Foundation and together the two organisations met the cost of the testing.

On 27 July 2011, with the family’s Australian residency finalised and access to Medicare then available, Jan was able to have a life-saving bone marrow (stem cell) transplant at Sydney’s Children’s Hospital.

The days following were hard. Some days were harder than others. However, this incredible family was determined to still find reasons to smile.

In the interview for this story 100 days after his transplant, Jan joked that he was  “turning into a girl” – the stem cells he received were from an American female donor.

Soon after Jan’s transplant, Anna said doctors were pleased with his early progress.

“After eight days, his cells started to grow,” said Anna. “The doctors said that was good news. For others, it can take two weeks. He now has 100% of his cells coming from the donor.”

Jan’s five weeks in isolation in Sydney were tough on both mother and son.

“It was hard being in one room while Jan had to be confined,” said Anna. “Sometimes we were both very grumpy.

“It’s not right to feel jealous, but I found it hard with other families who had others there to support them.”

Over the days and weeks, Anna was grateful for the support of Sydney’s Filipino community and a special Filipino doctor who provided her with home-cooked meals. The Leukaemia Foundation also activated a wide network of emotional support for the Matunogs, with our teams in Darwin, Adelaide and Sydney making and maintaining regular contact with each family member.

For Joselito, Jannina and Mickaella, the 11-plus months of separation from their mother and wife, brother and son, were not easy.

“I would get calls from Anna, crying, and it was so stressful too for Anna with the two girls in Darwin,” said Joselito. “At the time I told myself ‘don’t worry’, but sometimes I couldn't help myself. I tried to tell myself to count my blessings.”

Joselito worked split shifts in order to be available to get his daughters to and from school. The family didn't then own a car, so he would make use of public transport to ferry his daughters wherever they needed to go. On most days Joselito was up by 5.30am, then often didn't finish his second shift until 11pm.

It was an exhausting, but unavoidable, routine.

Anna and Jan were relocated to Adelaide on 7 October 2011, where Jan spent five more weeks in isolation in hospital before they moved into an apartment at Ronald MacDonald House close by, where a much-needed but temporary family reunion took place. Delighted to have his sisters on hand again to play with and make fun of, Jan was sporting an infectious grin that widened with each new Xbox game level he conquered.

On the day of the interview for this story, Jan was about to celebrate his 12th birthday. As Anna recalled, her son was the result of an “easy delivery”.

Proving that his wild wit can never be subdued, the seemingly oblivious Jan glanced up from his Xbox encounter, and emphasised, with a grin, “a special delivery!” he said.

Touché, Jan! You’re so clearly right.

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