Chronicles of Rachel’s Fight Against Cancer

Hi, my name is Daniel.

I'm raising funds for my colleague and dear friend, Rachel, who has bravely faced multiple diagnoses of a rare form of cancer over the past few years.

My goal is to help ease the financial burden on Rachel and her husband while she is unable to work and undergoing treatment. With the cost of living putting pressure on so many Australians right now, your support will provide much-needed relief during this incredibly tough time.

For those who know me—and even those who don’t—you might be aware that, at 38, it’s somewhat rare to still have a full head of hair that's not yet grey, having this Is something we often take for granted. But as you’ll learn from Rachel’s story below, it can change in a moment!

To show my personal support for Rachel, a fellow colleague and I will be shaving our heads in solidarity. It's a small gesture, but one we hope will raise both funds and awareness in the fight against this awful disease.

Rachels story

As a 23 year old in September 2013, the last thing I was expecting to hear after presenting to the GP with a swollen eye was that I had a rare type of cancer - esthesioneuroblastoma - a slow growing tumour that starts in the olfactory (sense of smell) nerve. But that's how it all started!

After a huge surgery to remove the cancer (whish had invaded my right hand nasal cavity, sinuses, eye socket, base of skull and brain lining) and subsequent radiotherapy for 6 weeks, I slowly started getting back to "normal". it wasn't an easy road, I went to have about 8 more reconstructive surgeries within 12 months to repair persistent wound breakdowns. You could say I was a frequent flyer at the Royal Melbourne Hospital!

Fast forward 9 years (almost to the day), I was going through the recruitment process for the DREAM job, when one of my routine scans showed a lump in a lymph node in my neck. It was the same cancer again, The specialist said it was very unusual to come back 9 years later but given the rarity of esthesioneuroblastoma, nothing is really "typical". So, more surgery and another 7 weeks of radiotherapy! On top of this, having to call my soon to be manager to say I'm going to need some time off before I even started was a bit daunting! But my manager and the rest of my team were very understanding and supportive and I was able to work 5 days in my new role before heading of for surgery.

They say bad luck comes in threes....At the end of 2023, I received the dreaded news that I had another tumour, this time on my brain lining and surface of my brain. A biopsy wasn't feasible due to the location so in January 2024 I had another surgery to remove the tumour which was then confirmed to be another esthesioneuroblastoma. I wasn't able to have radiotherapy to the head and neck for the third time because of the damage it can cause and thankfully the surgeon got all of the cancer out so it wasn't necessary.

In December 2024, I noticed a little lump above one of my teeth at the front of my mouth. I presumed it was an abscess but it did look a little odd for an abscess. It was right before the Christmas break so I wasn't able to get to the dentist until just after the new year. And so my story continues.....After scans and a biopsy I was diagnosed with a different but even rarer cancer, chondroblastic osteosarcoma which is an aggressive (fast growing) bone cancer. the specialist believe this was caused by the original radiotherapy I had way back in 2013/2014. It is know rick that radiotherapy can cause secondary cancer but it is a very, very low risk - about 1%. Osteosarcoma is more commonly seen in the extremities ie. arms and legs so to have it in my head is even rarer. My oncologist told me its 1% of 1%. I'm a data person so can appreciate what we are working with here!

I had complex surgery to remove the tumour in April this year and have been recovering at home since. Because this cancer is fast growing, I'm having chemo for 6.5months starting in June. I will unfortunately have all the unpleasant side effects of chemo that most people will be familiar with, including hair loss. Which brings us to this moment - Dan and Sonja are bravely joining me in shaving their luscious locks of when my hair starts to fall out, 2-3 weeks after treatment begins - just in time for Winter!

Thanks for reading Rachel's story/journey and hopefully donating! I will continue to provide updates!

Thanks again, Daniel.