{"id":9516,"date":"2022-04-13T09:45:39","date_gmt":"2022-04-12T23:45:39","guid":{"rendered":"https:\/\/blogs.rch.org.au\/news\/?p=9516"},"modified":"2022-04-13T09:45:39","modified_gmt":"2022-04-12T23:45:39","slug":"global-mission-to-save-little-willow","status":"publish","type":"post","link":"https:\/\/blogs.rch.org.au\/news\/global-mission-to-save-little-willow\/","title":{"rendered":"Global mission to save little Willow"},"content":{"rendered":"

Words:<\/strong>\u00a0Brigid O\u2019Connell
\nPhoto:<\/strong>\u00a0Alex Coppel<\/p>\n

Willow, who has neuroblastoma, is the first child at The Royal Children’s Hospital to be signed up to an international trial testing a new treatment.<\/strong><\/p>\n

\"\"
Willow Lawton, 3, being treated for neuroblastoma at the RCH with mum Kirsty.
Picture: Alex Coppel<\/figcaption><\/figure>\n

Willow Lawton does not understand what cancer is, only that it has taken away her \u201cbaby hair\u201d.<\/p>\n

And a rainbow-shaped scar on her abdomen is the reason why the three-year-old can spend a month at a time confined to her hospital room, away from her two beloved older brothers.<\/p>\n

She knows \u201ca tumour\u201d is the reason for a medicine-feeding tube taped to her cheek, going into her nose.<\/p>\n

Only later may she \u00adappreciate that a crack team of oncologists \u2013 the brightest minds in Victoria, another network of Australian specialists, and experts from the US \u2013 are working to find the right combination of treatment to overcome the neuroblastoma that continues to invade her tiny bones.<\/p>\n

Willow is the first child at The Royal Children\u2019s Hospital to be signed up to an international trial testing a new combination treatment \u2013 a different kind of chemotherapy and an immunotherapy \u2013 and a promising medication called DFMO.<\/p>\n

The drug, difluoromethylornithine, aims to starve the neuroblastoma cells, restricting their growth and spread.<\/p>\n

Willow took a textbook path to diagnosis in September last year.<\/p>\n

A two-year-old child first develops a limp. Next they \u00adbecome irritable, pale and generally \u201coff\u201d.<\/p>\n

Given the vagueness of the symptoms, neuroblastoma is typically diagnosed at stage 4. In addition to the main \u00adtumour that grows on the \u00adadrenal gland on top of the \u00adkidneys, this cancer invades lymph nodes and bones.<\/p>\n

Children diagnosed with neuroblastoma need at least two years of treatment.<\/p>\n

Willow\u2019s oncologist, Molly Williams, the only dual-qualified pediatric solid tumour and neuro-oncologist plus palliative care specialist in the state, said when she started working in the field 15 years ago few children were cured.<\/p>\n

But with the addition of high-dose chemotherapy and immunotherapy on top of the standard chemotherapy, surgery and radiation, survival rates were now well above 50 per cent.<\/p>\n

Willow, however, has been \u201cone outside the box\u201d.<\/p>\n

While the initial induction chemotherapy shrank the \u00adtumour enough that she progressed to surgery as planned, unusually the cancerous cells in her bones increased.<\/p>\n

\u201cThis does make us scratch our heads, and back when I started in oncology we\u2019d get extremely nervous about these kids,\u201d Dr Williams said.<\/p>\n

\u201cBut now we\u2019ve got a few more tools in our basket and we\u2019ve still got a lot we can throw at Willow.\u201d<\/p>\n

Mum Kirsty Whitbread and Willow make the most of each day and each hospital stay. They wheel in a trolley for each hospital admission that contains matching quilts, fairy lights, musical \u00adinstruments and supplies to create an instant art gallery behind her bed for the crafty creations she makes while room-bound.<\/p>\n

Willow has just started kindergarten on the ward, and is relishing the chance to do music and art therapy now that Covid restrictions have eased \u2013 all part of the RCH\u2019s mantra about treating the whole child, not just focusing on medical treatment.<\/p>\n

\u201cI just want them to find the individualised treatment that works for Willow so her disease stabilises and we can start to get rid of it,\u201d Ms Whitbread said.<\/p>\n

\u201cShe\u2019s gone from this healthy, bubbly, social child to now being so removed from all other kids.<\/p>\n

\u201cI can\u2019t even take her to the supermarket because she\u2019s so immune suppressed. She \u00addeserves the chance to be a normal kid.”<\/p>\n

Thanks to your generous support, we can make a difference to children like Willow and support world-leading care at the RCH. Click here to donate today to the Good Friday Appeal.<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Willow, who has neuroblastoma, is the first child at the RCH to be signed up to an international trial testing a new treatment. Click here to read her story. <\/p>\n","protected":false},"author":229,"featured_media":9524,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[8971,7198,6],"tags":[],"class_list":["post-9516","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured","category-good-friday-appeal","category-in-the-news"],"acf":[],"_links":{"self":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/9516","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/users\/229"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/comments?post=9516"}],"version-history":[{"count":2,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/9516\/revisions"}],"predecessor-version":[{"id":9526,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/9516\/revisions\/9526"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/media\/9524"}],"wp:attachment":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/media?parent=9516"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/categories?post=9516"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/tags?post=9516"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}