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Thursday, 25 May 2017

Little Eddie’s Ongoing Fight

Her story, as written by her mum Beth



I became a mum on the 27th March 2014 when my little girl ‘Edwina’ was born. She was such an amazing baby and I always considered myself extremely lucky and blessed to have such a perfect little girl! I thoroughly enjoyed every stage of her development from tiny baby to busy and very chatty toddler. On the 17th December 2015 Edwinas little brother Harry was born. It was a busy time being Christmas and summer holidays but we enjoyed a wonderful few weeks down at Middleton and the York Peninsula spending time with Edwina and Harry. Life was wonderful. Then in January 2016, Eddie slowly started to become irritable and over the following 8 weeks presented with on and off low-grade fevers, became very withdrawn and physically flat. This was around Edwinas second birthday and her symptoms were put down to typical toddler viruses, having a new baby brother and going back to daycare after the holidays.

But my gut instincts were telling me otherwise and I knew there was something else going on. This became most apparent to me at our weekly kinder-gym sessions where Eddie, who was once very involved and loved every moment, had become extremely withdrawn and didn’t want to participate in any activities or songs. Seeing all the other children playing and acting like normal two-year olds broke my heart. I just wanted her to be happy and enjoy herself. Where had my happy little girl gone?

Following numerous GP appointments over that period, finally on the 1st April, Edwina had a blood test, which revealed she was severely anaemic, but the doctors said it was simply diet related and told us to give her an iron supplement. Once again, my gut instinct told me this wasn’t right, as shed always been a good eater. The following day we took Eddie into emergency after she complained of tummy pain several times throughout the morning.  After a long day in the hospital we were given the devastating news that Edwina had a large mass on her right kidney. I was in some way relieved that they had worked out what was going on but not really aware of how serious the situation was. Our life was turned upside down in an instant. We were transferred straight to the Michael Rice Ward and over the following week, Edwina had numerous scans, tests and surgery, which confirmed Stage 4 High Risk Neuroblastoma. Her cancer had spread to both her femur bones and she had a large football size tumour coming from her right adrenal gland. Once Eddie was strong enough following her biopsy surgery and port placement, we started her first round of chemotherapy, which was the beginning of a challenging 18 month treatment process.

To give you some background, Neuroblastoma is a childhood cancer, which arises from nerve cells. Around 50% of cases start in the adrenal gland above the kidney, which is what occurred in Eddies case. It is a rare disease with about 40 children diagnosed in Australia each year. There are no known reasons as to why this cancer occurs and there are no environmental links. It is often difficult to diagnose, as symptoms may be subtle and similar to other childhood diseases. Therefore when diagnosed it is often already progressed to stage 4. It is such a rare disease it is unlikely that a family doctor will ever see a child with neuroblastoma in a lifetime of practice. I went through a period of doubting myself and questioning whether we could have done any more, if only she could have been diagnosed earlier, but I know now that we did all we could.

Edwina was given a 70% chance of survival if she was to complete a gruelling 18 month treatment process. This has included 6 rounds of intro chemotherapy, a 10 hour tumour resection surgery, 2 stems cell transplants, 20 sessions of radiotherapy, 5 rounds of immunotherapy and 6 rounds of retinoic acid. This has included many general anaesthetics, blood and platelet transfusions, IV antibiotics, weekly dressing changes and IV pain relief, the list goes on.  She has had to endure severe nausea, vomiting, diarrhoea and the worst of it all was the mucositis, which is ulceration from their mouth all the way down to their bottom, causing severe pain. Eddie was unable to eat for weeks at a time and was reliant on IV nutrition and fluids. It was extremely hard to watch and seemed as though the pain would never end. Neuroblastoma has a high relapse rate, and if relapse occurs it is usually considered incurable, which is why the treatment is so aggressive. I have been told that it is the hardest of all cancer treatment protocols. She has endured more than you could ever imagine and it has been the hardest experience as a mother to watch my child go through so much pain and suffering.

Throughout our time at the Womens and Childrens Hospital, which has become our second home, we have been blown away by the level of service and amazing staff who have looked after Edwina. The treatment she is receiving here is at the highest level and we are confident that its as high as anywhere in the world. The doctors and nurses in the Michael Rice Ward and throughout the hospital truly care for each and every child and Edwina has formed fond relationships with many of her regular carers. I think her quirky personality has resonated with them too. There are play and music therapists and a hospital school so Edwina always has toys and activities to keep her busy during her appointments and long stays in the hospital.

Throughout this time we have cherished the good days, which have been few and far between, but each one gives us the strength to help support Edwina through the next stage. Edwina has responded so well to her treatment and on her recent scans we were given the amazing news that there was no active disease found. She is currently in the final stage of her treatment, immunotherapy, and a relatively new treatment, which has only been around for roughly 5 years but has increased the survival rate of high risk neuroblastoma from 50 to 70%. Its aim is to mop up any undetectable cancer cells so the relapse rate is reduced. We are so happy and proud of our little girl and how far she has come. She is truly a Little Hero.

Finally, I would like to thank the Little Heroes Foundation for all their support throughout this process. In the first week at the Womens and Childrens Hospital we were greeted by gorgeous Mel who informed us of all the services and support they could provide, including car parking close to the hospital, home cleaning, fuel and grocery vouchers and financial assistance for bills. Over the past year all of these things have helped us enormously as we were reduced to only one income, as I had to stop working to care for Edwina full time. We have also loved the Little Heroes morning teas in the Michael Rice Ward, as it can sometimes be a very isolating place so it's always nice to see a friendly face and enjoy a coffee and a donut. We were recently invited to attend the Little Heroes Easter Adventure at the Adelaide Airport, which was undoubtedly a highlight for the kids. Not much beats an Easter egg hunt on a plane. There is not much more left to say other than, with utmost sincerity, thank you for supporting a cause that has supported us during our time of need. 

 

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