Zane’s life battles Even in utero Zane managed to do what is supposed to be impossible and kick his foot through the cervix at 23 weeks gestation. Zane was born premature and had an APGAR score of 3 and need to be resuscitated 3 times within his first 24 hours of life. From the moment he entered this world he’s had to claw his way through it, from spending time in NICU as a baby, learning to walk on a broken leg, overcoming difficulty learning to read with severe SLD being dyslexia and dysgraphia. Coming to understand his neurodivergence - after recovering from not one but two broken arms. All the while battling difficulties that come with intergenerational trauma being a Bunurong/ Boon Wurrung, Wiradjuri BrotherBoy. In a fair world, this kid would be given a break. But life isn’t fair and he has been dealt his most difficult hand yet- an osteosarcoma diagnosis at 15. Essentially Telangiectatic Osteosarcoma is an aggressive rare form of bone cancer found in young people. As a result Zane has become wheelchair bound which means massive changes in the home are needed to accommodate him (with the potential for a whole house/family move). As our family continues to adapt to this challenge, we have had to implement significant changes into the home. Including modifying our downstairs bathroom to make it wheelchair accessible, install a ramp in the room Zane is currently occupying, and install a handheld shower head and railing. We are still needing to modify access to front and back entrances to the home. A new fancy washing machine has been purchased to ensure any cytotoxic material on Zanes clothing is cleaned to protect him and the rest of the family. Exhaustion of work leave. These are just a handfall of cases which demonstrate the significant upheaval our homelife has taken. In the future Zane will likely need significant physiotherapy post- tumor removal and knee replacement surgery, this will most likely come with unforseen costs around equipment and medication Having a severely immunocompromised child comes with its own challenges and needs including steam cleaning carpets, new linen, steriliation of crockery, etc. and a whole lot of anxiety ! At this point in time, Zane has only be home 5 days consecutively, meaning a lot of time and energy has to go into transporting Zane and all his items back and fourth from the hospital, wrangling the two youngest (who are struggling to conceptualise what is happening with their brother), and maintaining general cleanliness of the house. I ask from my family to yours to donate generously. Childhood cancer treatment takes a village, I’ve never experienced anything as hard as this and I hope you can lighten the load.
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