Happy-birthday-finlay

Happy 5th Birthday Finlay!

One of our favourite young ambassadors, Finlay Higgs, recently turned five on 23 July! We had the pleasure of wishing him a very happy birthday and giving him a present!

Finlay Higgs was a happy little blue-eyed, fair-haired, 18-month old boy when his mother, Katey Higgs, discovered an unusual protrusion on his stomach on the Australia Day Weekend of 2015. Doctors found that the lump on his side was caused by a large tumour distending his stomach. They diagnosed him with Stage Four High Risk Hepatoblastoma, which is a very rare form of liver cancer that is most often diagnosed in children under the age of three.

His only option at the time was to undergo surgery to remove the tumour and the diseased parts of the liver. Surgeons managed to remove the entire right lobe of Finlay’s liver, leaving only the smaller left lobe behind. They removed his gall bladder, bile ducts and also cut out a tumour from his diaphragm. Pathology on the tumour found that the cancer was active tissue, however all margins around the tumour were clear of cancer cells, which was good news.

To this day, Finlay continues to bravely fight his cancer. After multiple surgeries and treatments, his diagnosis is now Stage Four High-Risk Refractory Hepatoblastoma, and is a living and breathing miracle to have survived so far. He is receiving CT scans as well as liver function and other tests every three months.

Finlay turning five is a very happy and momentous occasion for the Higgs family! The Foundation wants to wish Finlay the very best birthday and also many, many more to come! Finlay will be the star of the Friends of Finlay Camp Out on 27 October at Lathlain. Be sure to buy tickets for the Camp Out that will raise awareness and money for research into childhood cancers!

Gracie-image

Gracie meets Nic Nat from the West Coast Eagles

It’s not often you have the opportunity to meet your sporting icon at just six years old, but that’s exactly what happened to six-year-old Gracie who is fighting a double dose of childhood cancer, Acute Lymphoblastic Leukaemia (ALL) and Lymphoma.

Gracie attending a closed training session at Lathlain Park ahead of The Eagles trip to Victoria to take on Collingwood at the MCG.

Whilst the Eagles are fighting for a final berth on the field, Gracie has been fighting her own battles closer to home for nearly three years.

Back in 2015, after suffering urinary tract infections and severe bouts of pain for six months, she was diagnosed with Acute Lymphoblastic Leukaemia (ALL). She had only just turned three. Over the two-and-a-half-year treatment period, Gracie endured innumerable and varied chemotherapy treatments, countless invasive procedures and scans, multiple blood transfusions and platelets, regular needling and painful dressing changes, a nasal gastric tube, over 40 trips to theatre and was kept in a hospital isolation room for weeks on end, unable to leave.

She also suffered many side effects from the treatment that rid her body of the leukaemia.

Her treatment also meant she couldn’t do the things other three-year-olds would take for granted, such as a trip to the shops, swimming lessons, playing with animals and attending friends’ birthday parties, as her body lacked the ability to fight infection.

Despite all the setbacks, mother, Catherine, said despite the physical and mental traumas that no child should ever suffer, Gracie has a huge, warm personality.

“She is captivating, creative, funny, charismatic, intelligent, loving, and incredibly empathic. She always carries a beaming smile, no matter what she endures, making the two and a half years of treatment so much easier on those around her who are still struggling to come to terms with it all.

“She has the ability to always make the most of every single situation, and takes great pleasure in helping people and making them happy.”

The chemotherapy was initially successful but after five months, she showed symptoms of a virus-like illness and it was discovered that Gracie had relapsed.

This time the disease had come back refractory and it had mutated. Not only did Gracie have 70% leukemic blasts in her bone marrow, she also had a large lymphoma mass between her abdominal wall. After consulting with specialists all over the world, it was discovered that no one had ever seen a presentation like this, not in children or adults.

Gracie was immediately started a 29-day cycle of chemotherapy which required her to be an inpatient for just over seven weeks. This really took a toll on Gracie emotionally and psychologically.

Gracie was then put on a 28-day course of continuous IV Immunotherapy. It initially required a week’s stay in hospital, then the majority of the rest of the course at home. Scans at the end of this treatment had shown her bone marrow was in remission, and the tumour significantly reduced.

A second 28-day course of continuous IV immunotherapy began and Gracie is currently half way through this treatment cycle.

There is a scheduled bone marrow transplant in August, which increases chances of survival from 5% to 50%, followed by two weeks of radiotherapy.

“Gracie deserves the chance to beat this beast once and for all,” said Catherine.

“She has so much to offer this often bleak world. She is one of a kind, she is here to make a difference, and she will.”

The Children’s Leukaemia and Cancer Research Foundation wishes Gracie the best possible outcome in her up and coming treatment and we know her constant determination and a positive attitude will pull her through!

Sebastien-Malinge-Interview

Dr Sébastien Malinge Investigates Resistant Cancer Cells

French scientist, Dr Sébastien Malinge, moved from Paris to Perth six months ago to work as an Ursula Kees Fellow. He now works in a lab funded by the Children’s Leukaemia & Cancer Research Foundation within the Telethon Kids Institute. Sébastien is enjoying his time in Perth and continues his insightful research into better therapies for children who have leukaemia. We interviewed Sébastien on 12 April at the Telethon Kids Institute to learn more about him and his research.

Sébastien’s PhD research in 2006 at the Necker Hospital in Paris was focused on discovering the genetic causes of leukaemia among children with Down’s Syndrome. Sébastien then moved to the United States to complete a post-doctoral fellowship to investigate why children with Down’s Syndrome were at higher risk of developing leukaemia than children without the condition. He moved back to Paris in 2012 to expand on what he studied.

When asked about what receiving the Ursula Kees Fellowship means to him, Sébastien says he feels privileged to receive this position.

“I met Ursula in 2016 when she invited me to present my work at the Telethon Kids Institute.

“I am very proud of having received this fellowship and continue to pursue her legacy. We work towards the same goal of finding better treatments for children with leukaemia.”

Sébastien is currently focusing on building a cohort of preclinical tools to test hypotheses with the view of testing new cancer therapies. He seeks to understand why some children relapse and the reason as to why some cancer cells are resistant to chemotherapy. He hopes that his research will give some clues to develop new therapies targeting therapy-resistant cancer cells and decrease the rate of relapse.

Sébastien believes that funding into cancer research is crucial for discovering better therapies.

“Some of these leukaemia treatments for children are successful but have high toxicity. Therefore, we need funding to find better ways to maximise the well-being of these children not only during but also after chemotherapy.”

Thank you Dr Sébastien Malinge for accepting the Ursula Kees fellowship. We are excited to have you on board and look forward to learning more about your research into finding better therapies for children with leukaemia.

Antonio-Argentieri

Antonio’s Support for the CLCRF

Antonio Argentieri, a well-known cake decorator from Italy, has been a passionate supporter of the Children’s Leukaemia & Cancer Research Foundation (Inc.) for several years. In 2017 Antonio organised the 19th National Cake Decorating Seminar in Perth and raised funds for the CLCRF with the help of the Cake Decorators Association of WA.

More recently, Antonio has put together a ‘Cooking Charity Show’ on popular Italian television cooking show, ‘La Prova del Cuoco’ in Italy to raise money for the CLCRF. The show will air on 17-18 July at a bistro called Alla Marino in Italian city, Vasto. The show will be streamed live in Australia, Canada and USA from 5.30pm Italian time. Over two days of fun, the show will feature Italian culinary excellence from Antonio, special guests, his friends and other chefs. The CLCRF will feature during the show and viewers across the world will find out more about the Foundation and the great importance of raising funds for world class child cancer research.

When asked about why Antonio has such a heart for funding child cancer research, he believes that he did not choose the Foundation but it chose him.

“I did not choose the Foundation but the CLCRF, in a sense, chose me. I have been working with the Cake Kids Therapy group where children who have had difficulties in life are taught how to make and decorate cakes. I ‘fell in love at first sight’ with the CLCRF because I really want to give hope to children suffering from cancer.

“No one can know if among these many suffering children there may be a man or woman who will make the difference and build a hopeful future. Together we can put smiles on children’s faces by giving to the CLCRF.”

The Foundation thanks you for your passionate and invaluable support Antonio! We are deeply touched by your love for children going through such a difficult time and your help in promoting the cause of funding child cancer research in Italy and across the world!