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ELLIE’S CAMPAIGN

Ellie was diagnosed with a blood cancer called leukaemia in 2014. The following are all Ellie’s words, shared with the Leukaemia Foundation to help raise awareness of blood cancer during September’s Blood Cancer Awareness Month. You can share your story, too, by clicking here.

In February 2014 I turned 40 and my three boys were 20, nine and six. My two grandchildren were just three and nine months.

I had felt “off” for a couple of weeks, then people started commenting that I was pale and looked tired, which I put down to long hours training to be a chef.

I went to visit my GP. He looked at me in the packed waiting room and called me in next even though it wasn’t my turn. Before I had even sat down, he said, “You’re anaemic and I’m doing a blood test.” I thought maybe I was a bit low in iron. That same Saturday afternoon, my GP called back and confirmed I was anaemic and that I needed a blood transfusion immediately. He contacted the hospital and sent me the results to take with me.

I was taken in straight away, and all the usual poking and prodding began. That night I received three bags of blood and was transferred to a ward. On Sunday, I met with a haematology team telling me something was wrong with my blood and a bone marrow biopsy the next day would give us a definitive result.

Bone marrow biopsy

I had a bone marrow biopsy to confirm my worst fears, and yes, good old AML was back. Even my haematologist was visibly upset. Then came the news. I needed to go through chemo all over again to get me into remission, then my only chance for survival was a bone marrow/stem cell transplant.

One of my sisters was a full match, so we embarked on another enormous round of testing. I had to transfer from Nepean Hospital to Westmead [both in Sydney], where transplants are performed.

They had to keep me in remission in order to have the transplant. The Westmead transplant team told me how unwell I actually was, and they had never seen or done a chemo regime as tough as mine.

I was admitted on 9 November for nine days of conditioning therapy, to prepare my body for transplant. The actual infusion of my sister’s cells was just like getting a blood transfusion − nothing exciting. Then came ‘day 3’ and beyond. My mouth was full of mucositis and ulcers, so I had to be tube fed, with my meds crushed and squeezed down my throat or through my nasogastric tube.

I think I got to about day 15 without having much recollection of that time. I was highly medicated on fentanyl and ketamine. I know my kids were snuck in − as they don’t let kids under 12 in the ward − to say goodbye. I wasn’t coming home. After the two weeks, I woke up looking at the face of one of my doctors from Penrith. I think we both teared up. He had been watching me and waiting for me to wake up.

Graft vs host disease

They gave me a few hours out on Christmas Day. My oldest son came to pick me up and we surprised the family. I also came home the week of New Year’s and I lasted about five days, then was back in for a check-up and re-admitted to the transplant ward because I was running a temp.

I had developed a condition called ‘c-diff’ (which is a form of colitis) and GVHD (graft vs host disease) where your body fights the new cells.
Eventually I got to go home the week of Easter 2016.

Everyday that I spent in hospital having transplant, Lauren from the Leukaemia Foundation visited me. Those visits were a big part of my recovery & kept me going.

Since then, I’ve had many ups and downs. My GVHD is chronic and is in my eyes, mouth, liver, lungs, kidneys and gut. I also now have an autoimmune disease called scleroderma. I was given a trial drug under compassionate grounds for my GVHD and scleroderma. After a few months on it, I injured myself and the trial drug caused an internal bleed. I was taken off this drug and my steroids were increased significantly. About two weeks later, I was back in hospital unable to walk with an infection from the internal bleed.

Going home after cancer

While healing, I started rehab to get my legs moving. We thought our best option was to go private, and I was transferred to a rehab hospital.
I spent three weeks in rehab, with a stint back in Westmead for the infection. By October 2018, I was home.

I am walking with mobility aids but getting better everyday. I still have IVIG – intravenous immunoglobulin infusions – every four weeks, and with the GVHD we are trying new things to settle it down.

My team at Westmead are amazing & look after me very well.

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