So after delays and dodgy knees Michael and I are finally going ahead with tough mudder. I have never ran anywhere in my life, not even for a bus..so this in itself is a massive challenge. We have decided to Race for grace, my beautiful little cousin who has been through so much in her life already and she is only 4 years old..we hope that whatever money we raise will go towards making amazing memories for her and her family. Below is just a snippet of what Grace has been through. Grace is one of the most courageous, bravest little girls Ive ever had the pleasure of knowing. She is such a fighter with heaps of character. Such an amazing girl with a heart of gold. And so very strong.
Her Diagnosis was June 2014 - Adrenal Cortical Carcinoma and Cushing's Syndrome.
Treatment - Intensive chemo for a week, strong doses of 3 chemos mixed together - few weeks off and repeat.
Daily oral chemo which had to be stopped due to neurological side effects.
Steroid replacement for Cushing's Syndrome. Horrid side effects.
Result - unsuccessful given prognosis of Dec 2014!
Next - 2 more chemos daily for approx 2 months including steroid use.
Side effects - sickness, skin rashes, hands and face peeling, folliculitis, hospital stays, blood transfusions etc.
Small success rate and reduction this stalled after further treatment.
Trial 1 - 21 days on 7 off and repeated for 3 cycles like swallowing sand.
Cushing syndrome out of control and limiting lifestyle, hormone levels off the scale - surgery agreed for purely palliative care.
This was successful - 6 hour surgery, chest drains, wound drains, stomach drains, cafeter, Central lines, cannulas, NG tube.
Trial 2 - weekly infusions - unsuccessful
Nasty side effects.
Trial 3-this is the most successful so far, and Grace has a scan at the end of may to.see the results so far.
With frequent tests, ECG, CT scans, X-rays, Echos, Nasal aspiration, blood transfusions, hospital sleepovers, nuetropenia, illness, high temps, extreme fatigue and also highs, at times she has been so many meds daily highest being 9 different ones at different intervals throughout the day for them all!
We would like to thank you all from the bottom of our hearts for your generosity no matter how big or small.