September’s Warrior of the Month – Xavier

Xavier was born with gastroschisis – a condition where the bowel develops outside of the abdomen. He arrived prematurely at 36 weeks, and spent 3 weeks in hospital as his intestines were gently squeezed back into his belly and surgeons repaired the hole in his abdominal wall. Once he arrived home, Xavier endured a lot of tummy aches and constipation – but he always had a smile on his face.

At age 4, after a series of common but not particularly concerning symptoms including enlarged glands, tummy aches, sore legs and tiredness, Xavier suddenly came face to face with yet another life-threatening condition. A blood test at his mother’s insistence was followed by an urgent call from the haematologist instructing Xavi be rushed to hospital, where he was diagnosed with acute lymphoblastic leukaemia.

Xavi is now 7, and throughout his 3 and a half years of treatment, he has always been a brave little fighter, taking his chemo and other medications every day without complaining, despite having complications from many of them.

A common allergic reaction to the second dose of one of his IV chemo drugs required a shot of adrenaline, and meant that for the remaining two fortnightly treatment cycles a different medication had to be administered via 2 needles in his bottom every second day. He had a severe allergic reaction to his platelet transfusions, which in a matter of moments gave him hives all over his face and caused his throat to swell up so much that he couldn’t breathe – he had to be sedated and have a shot of adrenaline, and now requires additional medication before each transfusion to prevent another reaction.

He also has a reaction to his steroids – they cause bad pain in his legs, hips, back and tummy, as well as causing the fluid on his brain to build up, giving him massive headaches. He takes an additional medication every day to help, and after his lumbar punctures every 3 months to administer chemo into his spinal fluid they also drain the excess fluid from his brain, and he has to lie flat for 3 hours afterwards.

His treatment has been so harsh on his body that he needs monthly IVIG transfusions to boost his immune system. The muscles in his legs have deteriorated and the arches of his feet have caved in, so that he often suffers bad falls and needs regular physiotherapy and orthotics in his shoes to help.

Xavi is on the home stretch, and should have his last lumbar puncture, IV chemo treatment and port removal at the end of September. Just a few weeks after that, he will take his final oral chemo dose. Once treatment is finished, Xavi is looking forward to receiving his wish to go to Queensland to Movie World, Dream World and Australia Zoo!

Xavi loves drawing, writing stories, art & craft, Minions and Super Mario. Xavi also loves music – he plays the drums and guitar, and his favourite band is U2. He plays along to their songs and knows every word.

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