Johey was diagnosed with DSRCT, an aggressive childhood cancer, on Christmas Eve of 2018. Being a rare disease, this type of soft tissue sarcoma has no standard protocol for treatment. Aggressive chemotherapy, surgery and radiation are all commonly used, but relapse is common and the documented prognosis is horrific.
But, there is hope! There are new targeted therapies being developed that promise less toxic treatment and hope of a desperately needed cure for this cruel disease.
We are raising money to fund care, treatment and if possible, experiences for Johey. His parents and his medical team are determined to try everything to fight and win this monumental battle. There have been a few cases of cured patients (in America) and we intend to come through this with Johey as one of them.
The battle will be long and hard, but we are up for it. After 10 weeks of chemotherapy, the tumours have shrunk a little. Johey is tired and it knocks him around, but he bounces back after each round. He is brave and a quietly determined fighter! More tumour shrinkage is needed before it can be attempted to surgically removed them, which is the only known way to cure this cancer.
Genetic profiling of his tumour has identified 4 drugs that would shrink the tumours. One of these we can access in Australia under the PBS and we will try it. However, the drug that is indicated to be the most effective in Johey's case would have to be self-funded at a cost of $25,000, so that is included in the figure we are currently aiming for. This drug has been shown to cut-off the blood supply to the tumours and stop them from spreading.
We thank you for any donations. Please know that they will be very much appreciated.
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Acc Name: Scott and Emma Basedow
ACC NO: 10068165
More about our journey so far:
Johey had been tired, lost weight quickly over a few weeks, and had complained of a stomach ache. We put it down to a teenage growth spurt and end-of-year stress due to exams and assignments. We were all tired from the year's efforts.
On the first day of the school holidays, his Mum (a dedicated school teacher) took him to a GP. Much to our horror and shock, his scans showed ascites and a heavy tumour burden in his abdomen, from his lungs to his pelvis - hundreds of tumours on the surface of his organs. We were devastated to hear that our beautiful boy had cancer, but watching Johey himself come to terms with the diagnosis a few days before Christmas was absolutely crushing.
Our little family spent Christmas in hospital together. It was surreal. Johey's Portacath was implanted on Christmas Eve during the laparoscopy to confirm his diagnosis. He recovered in a room with a plaque above the door that read "Paediatric Palliative Care". We spent a very sombre Christmas Day in this room.
It was decided that Johey should commence chemotherapy ASAP to try to shrink the tumours, so he was moved to the Oncology Ward on Boxing Day to start chemo, where only one parent could stay with him. Days and nights when our little family of four have all been together have been few since then.
Johey had just finished his first year of High School - a year that had seen him thrive in terms of his growing independance and his education, as he started to develop into a responsible young man with firm aspirations of becomming an Aerospace Engineer. He has both the intelligence and the determination to do the hard work to achieve his dream.
Within the first few weeks of Year 7, Johey's intelligence and drive were recognised by his teachers and he was placed in a Gifted Education program. Johey loves school and took up every opportunity to get involved in his school community, including voluntary Music Performance Groups, Academic Competitions and helping out at Open Days. He found it all to be good fun. He finished the year with Academic Merit. Outside of school, Johey enjoyed playing Hockey and was a valued member in teams for local and regional competitions.
Tragically, Johey's diagnosis and treatment have stopped him in his tracks and launched us into a parallel universe of round-the-clock cancer treatment and the battle of our lives - the fight for Johey's life.
His current treatment involves a combination of inpatient and outpatient chemotherapy with regular blood transfusions, all of which make him too tired and unwell to attend school for now. He is doing some work from hospital and home, but misses going to school. We hope this is a temporary interruption to his education and childhood experience. We know he'll catch up when he can!
Johey's parents, family and friends are devastated. Johey's parents have both always worked in paid employment and are proud of their little family and their home that they have worked so hard for. It is not in our nature to ask for help from others, but we find ourselves in this desperate situation with no choice. Your donation will be very much appreciated.
Johey's Dad (Scott - a mining machinery operator) has had to return to work to support the family. It pains him greatly to be away from Johey. His Mum (Emma - a Secondary School Science teacher) has taken leave to care for Johey. Her paid leave will soon run out and the family will be faced with a drastic reduction of income, which adds additional stress to the family's situation.
We will sell what we can and are adapting our lifestyle to cut back on spending. This diagnosis is life-changing and we will strive for our little family to survive it together. Thank you for your thoughts, prayers and support.
The Basedow Family
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