Personal Story

Lily’s experience with Severe Aplastic Anaemia

At just three years old, Lily was diagnosed with Severe Aplastic Anaemia. What followed was a difficult experience for the family as they navigated Lily’s treatment and the trauma of so many procedures. Lily’s mother Emily shares their story:

When Lily was diagnosed in early February 2016 with severe Aplastic Anaemia, our diagnosis was hard. I had taken Lily to the doctor because she was overly tired, pale, and covered in bruises from head to toe. We were rushed to Nepean Hospital to be told Lily had Leukaemia for two weeks until we were transferred via ambulance to Westmead Children’s Hospital for a bone marrow aspiration and biopsy, and told our accurate diagnosis of Severe Aplastic Anaemia.

That was the start of our roller coaster ride. Lily has had countless blood and platelet transfusions, bone marrow biopsies/aspirations, Hickman line insertion and removal, a whole year in isolation at the age of three years old, four rounds of immunosuppressive therapy treatments, port insertion and way too many medications to even count. She was also diagnosed with medical anxiety, medical PTSD, and needle phobia.

In the same year of diagnosis, my mum gave up her job just to be able to support Lily and me going back and forth from the hospital so regularly. I remember at the start of Lily’s journey with Aplastic Anaemia, we were trying to find answers on how she became so sick after being a healthy, happy baby. My mum and I would search the internet for hours on end, even trying to find foundations to help support. After a long search, we were so grateful to have found Mei Ling from the Maddie Riewoldt’s Vision Telehealth Nurse service. She was a godsend who sent us so much support and checked in on us regularly.

Throughout her diagnosis and treatment, Lily was still such a bubbly, outgoing, loving girl with a heart of gold! But, it hasn’t been an easy ride with her severe needle phobia. We have been through countless endeavours to get her the right help – as this is now a part of her life. We have tried a play therapist, psychologist, Eye Movement Desensitization and Reprocessing (EMDR) therapy, and some medications to help relax her which sent Lily the total opposite way, resulting in her having to be restrained to get bloods drawn.  It was was absolutely awful and my mum and I would leave the hospital room in tears. Then we finally found our breath of fresh air, our amazing hypnotherapist, Vanessa. She has done a fantastic job helping Lily overcome some of these debilitating fears.

At this time, Lily still has her port in place, and as far as her blood counts are going, they have been stable for a while now, which is so refreshing! Our next hurdle is going to be vein access and surgery for port removal, but I’m positive with the help of Maddie’s Vision and our hypnotherapist that we will be able to get through it.   

Lily really wanted to share her story to help anyone who is going through Aplastic Anaemia, and trying to find answers or help. We are a big believer in spreading awareness of Aplastic Anaemia and getting the name of Maddie’s Vision out to the world, as having a support system behind you is so important for both patients and their families. We would also like to thank our haematologist, Dr Kilo, and our amazing nurse, Ady Woods, who have helped support our family and treat Lily.

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