Feature member story: Ella's leukaemia journey
Little fighter ... Ella after her hair began to grow back. Photo: Dani Burrows @ Dream and Just Believe Photography
It was July 2009, and life was starting to get back on track after the death of my husband Mark seven months earlier. My daughter, Ella, had settled into daycare and I’d started working again.
My new job required me to do two weeks of training, so I sent Ella to spend some time with her grandmother. One afternoon I got a phone call saying Ella had hurt her leg climbing off a chair; she’d been taken to the local GP but was cleared of any serious injury, so we didn’t think much more of it. But two days later Ella was still refusing to put any weight on her leg, and cried whenever I tried to touch it. I took her down to the emergency department and had her looked over, but there was no evidence of serious injury. They said that if she was still refusing to put weight on it by the end of the week we’d have to return. And by the week’s end we were back in hospital while Ella underwent a series of tests. But they all came back clear, so we were sent home agian.
My GP called us in and we sat down. She looked at us and said, 'Oh dear Ella ...'
After several weeks with little improvement, I took Ella to our GP. By this stage Ella had started walking again but with a very obvious limp. My GP checked her over and found she had an ear infection. She prescribed antibiotics and told us to come back in a week. The day she was due back I noticed she had a red spotty rash on her bottom, which looked very much like a meningococcal rash. The GP checked her over and requested urgent blood tests. I was told the rash was petechiae (pinhead sized bleeds under the skin) – the cause needed to be investigated immediately.
The next day I dropped Ella off at daycare and made my way into work, where I finally gave in and googled ‘petechiae’. The first few results popped up with the words ‘leukaemia’. Within minutes of seeing these words my mobile phone rang – It was the doctor’s surgery requesting I go in immediately. I felt sick. That drive to pick up Ella and get to the surgery was the longest drive of my life.
My GP called us in and we sat down. She looked at us and said, “Oh dear Ella ...”
And on that day, September 2, 2009, my 22-month-old baby girl was diagnosed with leukaemia.
I cried. I wailed. I managed to whisper the words, “Will she die?” My GP grabbed my hands, looked me in the eyes and said, “Kids are resilient. She has a good chance of beating this.”
The next few hours are a bit of a blur. I managed to call a friend to come and help me pack our bags and head to the Royal Hobart Hospital, which became our home for what seemed like eternity. We were met at the paediatric oncology unit by the head clinical nurse, Helen, who became our rock. She took us to see the paediatric oncologist, who explained what we were up against. I was told that Ella had acute lymphoblastic leukaemia, and that of all the childhood cancers, this is the one you’d want your child to get.
There was one question that was continuously going through my head: “Is this linked to the brain cancer Mark died from?” The answer was a reassuring “no”, but that led to even more questions of “why us?”
Ella would need a bone marrow biopsy to confirm the diagnosis and determine the cell type of the leukaemia. Once this took place, treatment could begin: just over two years of chemotherapy, including a number of phases of varying degrees of toxicity. Our world had been turned upside down once again.
While waiting in the clinic for a bed to become available on the ward, we were handed a red and white striped bag that was filled with lots of information, support service details and a gorgeous teddy bear, who Ella named Charlie Bear, from Red Kite. We also got a visit from Camp Quality staff members, who have now become part of our family.
We spent the next few weeks in hospital as Ella started her treatment. She tolerated it well with no major hiccups, and held Charlie Bear close through every single treatment. The initial bone marrow biopsy showed she had 98 per cent blast (cancer) cells in her blood. She was administered a concoction of drugs orally, intravenously and via lumbar puncture, all of them forming her leukaemia-fighting army.
By week five, a bone marrow biopsy showed less than 5 per cent blast cells, which put Ella into remission. But by week six her body was black and blue from bruising, and her veins refused to be pricked even one more time. She was given the go ahead for a port-a-catheter to be inserted into her chest, which provided direct access to a major vein in her neck. This was an absolute godsend for Ella over the following years.
January 2010 saw the start of the delayed intensification phase, when the nastiest drugs were brought in, and Ella started to lose her hair. It hurt to the core to see my little girl lose big chunks of hair. Thankfully she was none the wiser, and it seemed to affect me more than her. Again she coped amazingly well. This time, however, she experienced regular bouts of neutropaenia (low white cell count), which would often see us in home isolation, or admitted to hospital to treat fevers from bugs and viruses she had picked up.
In March 2010 we began the maintenance phase of treatment. This was less intense and much more manageable at home, and I was even able to administer the chemo. It was the time when Ella became more like her happy, bubbly, former self. She was finally able to reintegrate with her peers, to get out and about and discover the world. Her hair started to grow back and we celebrated when piggy tails were achieved!
Finally her last day of treatment arrived on November 8, 2011. She took her final dose of chemo in legendary style, and was brave going under general anaesthetic for her final bone marrow biopsy. Thankfully it proved that she was still in remission and cancer-free.
One of the greatest challenges on Ella’s journey was doing it alone. I wasn’t truly alone in the physical sense, as I had amazing family and friends who stepped up and became my life support when I needed them, but I still very much felt alone. I was dealing with overwhelming grief from Mark’s death while also tackling the uncertainty of the future. To others I looked like I was coping well, but on the inside I was crumbling away. I was terrified I was going to lose Ella, and as I’d had to resign from my job I was constantly worrying about surviving financially. Most days, trying to balance being a good mum, carer, nurse and grieving widow was just too much.
Regardless, I bumbled my way through by accepting help from others when it was offered. I certainly wasn’t strong enough to ask for help when I felt I needed it, and as a result, my mental health suffered. By the time I finally found the strength to say “I need help”, I was showing classic signs of post-traumatic stress disorder and generalised anxiety disorder. With some intensive work with my psychologist, and the encouragement to finally open up emotionally to my family and friends, I’ve been able to rebuild my mental and emotional health in a positive way, and now look at life with a little more optimism.
Now our mission is to keep Ella in remission for five years, with regular hospital check-ups along the way. She started school this year and is happy and healthy, an almost-five-year-old who has only a few battle scars to remind her of the journey she’s been on for the past two and a half years.
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