Madie’s recovery and rehab.
Donation protected
The beautiful young lady you see in the photo is our friend 16 year old Madie, she is a caring, strong, brave and intelligent young woman, and she needs our help.
Madie was like any other Australian teenager, spending most of her days outdoors swimming, off roading and caring for her plethora of pets. Things began to change when Madie started getting lower back pain in late 2020 and after a scan and several visits to Flinders Medical Centre the family were pushed towards physiotherapy as the solution.
Madie's family pushed for further answers as her pain was not subsiding, and her worrying symptoms were increasing. After months of searching for answers, they were eventually given the devastating diagnosis of Ewing Sarcoma in March 2021. The oncology specialist found that she had a tumour the size of a grapefruit in her pelvis. Adding further frustration to Madie's diagnosis was information from the specialist who confirmed that the tumour was visible in her original scans that were taken in November 2020, but as these scans were not sent to a specialist for assessment the tumour was left to continue to grow and cause more damage.
Madie began her aggressive treatment the week of diagnosis, she endured several months of intense pain due to the tumour compressing nerves in the tail bone and affecting leg mobility, due to the placement of the tumour Madie was restricted to the bed and could no longer walk.
During her treatment her sister a Charli wanted to show Madie that she was supporting her in any way possible, so she, along with all her classmates and teachers, organised a sponsored head shave at Seacliff Primary school for the benefit of Cancer charities.
As her treatment regimen gained momentum her pain could no longer be controlled by medication, so a decision was made to insert a intrathecal line into the spinal sac to inject pain relief directly into the area causing the nerve stress via a personal intrathecal pump. The insertion of the line controlled her pain but unfortunately caused a further loss of lower leg control and Madie became totally reliant on a wheelchair to be able to move around. Madie's chemotherapy and radiation treatment ran from March until December, after this the tumour was found to be effectively "dead" but the decision was made to leave the tumour in place due to it's size and placement which posed many risks if it was to be removed. As soon as she was able, the rehab department started to work on Madie’s mobility to get her lower legs strong again and work on movement as she lost all sensation from the lower legs down and could no longer feel her feet or move them. She powered her way through weeks of intense rehabilitation to gain back strength and mobility, this included having the fitting of AFO’s ( ankle – foot orthoses), she began to regain a limited amount of mobility away from her wheelchair.
From January 2022 till October 2022 Madie was slowly recovering and doing regular visits to the hospital to have scans and blood checks to ensure recovery was on track. She continued with her rehab and was gaining back strength through her amazing determination.
Unfortunately, on October 10th 2022 after a routine blood test the family were instructed to return to the Women’s and Children’s hospital in Adelaide as the blood test indicated that the treatment for Ewing Sarcoma had introduced "Treatment Induced AML Leukaemia". The AML Leukaemia was confirmed and chemotherapy started asap – this was in preparation for a marrow stem cell transplant to be carried out at the Sydney Randwick children’s hospital. Madie’s sister Charli was tested for a compatible donor and amazingly was a 100% match. The family flew to the Randwick hospital on the 19th December and Madie started conditioning for the transplant, Charli bravely underwent her harvest on the 28th December and Madie received the cells on the same day.
Madie is now experiencing the effects of the chemo and transplant – mucositis ( ulcers in the mouth and throat) and extreme nausea and fatigue, but she continues to be strong each day.
Charli returned to Adelaide on the 5th January and Madie remains in Sydney while her body slowly responds to the transplant.
Madie has fought so hard for so long, she has missed months of school, time with friends and family, and any semblence of a typical teenage life. The strain on the family over the past 2 years is on a scale most of us cannot comprehend. We would love to support them to ensure that Madie has the best recovery and rehabilitation, we are aiming to raise funds to improve her quality of life through adaptations to the home, physiotherapy, alternative therapies, animal assisted therapy and any other services that will offer her the best and most effective ways in which to recover.
Madie's friends are undertaking a "March for Madie." This will entail a walk of 40km, from Brighton and Seacliff Yacht Club to Glenelg and back until the distance is completed on SATURDAY 18th MARCH starting from 5am. Some of us will walk the whole distance, others will join us for parts and some will work in teams to cover the k's. Madie is going the distance with her treatment, so the least we can do is to march the distance with her.
I'm Marching for Madie....
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Organizer
Paul Burnley
Organizer
Hallett Cove, SA