Navigating an Acute Lymphoblastic Leukaemia (ALL) diagnosis- Children’s Cancer Foundation

Acute lymphoblastic leukaemia (ALL) is a blood cancer, the most common type of childhood cancer. While the majority of children with ALL can be cured with standard chemotherapy, some patients respond poorly to or relapse following first-line therapy. Research investigating targeted leukaemia therapies is making a real difference to children diagnosed with ALL, helping to raise long-term survival rates.

In 2017, the Children’s Cancer Foundation committed $1,370,000 together with the Victorian Cancer Agency and Murdoch Children’s Research Institute to fund Dr Seong Lin Khaw as the inaugural Children's Cancer Foundation Clinical Research Fellow at The Royal Children’s Hospital. Dr Khaw’s research focuses on improving the effectiveness of treatment in children with very high risk acute lymphoblastic leukaemia. His Fellowship supports salaries and research costs through to 2021.

The symptoms we couldn’t ignore

2018 started like any other year for us, a great summer break full of sun, water, fun and family. The kids were excited to be starting the new school year, but soon after classes began Alexandra “Lexie” become increasingly upset that none of her close friends were in her class. She seemed a little down but we thought she would soon adjust. She didn’t. Weeks after, she was still sad and upset and we started to notice our daughter becoming more tired and less active.

Lexie quickly went from being a kid who spent most of her time upside down practising round offs and back flips to spending long periods of time in her room.

One day while she was changing into her bathing suit. I noticed how thin Lex was getting, how pale she was. Before school one morning she complained about a sore neck, that I put down to a muscle strain from gymnastics the night before. I sent her to school shortly after received a call that she was unwell. I picked Lexie up and went straight to the doctor who thought she might have meningitis. We were told to monitor her symptoms.

Her symptoms didn’t develop, but she was still not herself and feeling dizzy. At this point, we made the decision to go to the Royal Children’s Hospital in Melbourne. The initial assessment didn’t reveal what was happening, but as the days went on, Lexie got progressively worse and I knew deep down inside, in my heart something wasn’t right. I took her to two more doctors and our Osteo before my GP saw Lex and recommended a blood test. This completely freaked Lexie out and even though she begged me not to, I knew we just had to.  

She had her blood tests and we carried on with the rest of our day. Later that evening, at 10:00 pm my doctor called and told me to rush Lexie back to the Royal Children’s Hospital and when she told me she had called the Emergency Department to let them know we were coming, I knew it wasn’t good.

All I remember hearing that night that something was wrong with Lex’s blood and it could be cancer.  

A few days later our worst fears were realised. Our beautiful little girl was diagnosed with Acute Lymphoblastic Leukemia (ALL)

The determination and pain that treatment brings

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After diagnosis, our thoughts were initially consumed by fear. But, as we learnt more about her illness and the treatment available, we set about getting through it as quickly as we could. Lexie underwent 9 months of intensive treatment and will be in maintenance for a further year and a half. She is currently in remission and her prognosis is very good.  

Treatment has been difficult for a number of reasons.  Knowing we had to make Lex really sick to make her better was hard to come to terms with.  Growing up, she seldom took Panadol and now I was watching her receive chemo, painkillers, nausea medication, antibiotics, steroids and even insulin.  

Lexie’s regime was complex. I worried about making mistakes so wanted to understand everything I could about her illness and cancer treatment. I wanted to know how best to take care of her, especially when she was home. As time went on, it became easier, our confidence grew and we knew what to expect with the treatment.  

Lexie has had her fair share of side effects, some brutal, others extremely painful. The one thing that bothers her the most is the loss of her hair, not surprising for an 11-year-old. As a family we focus on her hair growing back, her body getting stronger and getting through maintenance so we can have some normality come back into our lives again.

The impacts on our family

Alexandra___family-photo-at-lakes__WEBREADY.jpgWe were once a normal family; A busy household with 2 working parents busy juggling schools and sports. All this changed in an instant when Lexie was diagnosed, our lives were on hold. We could no longer plan the everyday things our normal family usually did and our little boy, Lexie’s brother, soon began to feel the effects of having a sick sibling.

The cancer treatment was difficult and all-encompassing. We decided as a family, that one parent should become a full-time carer, so I left behind the job and career I had worked so hard for, to focus completely on our family. We know how fortunate we are to have been able to choose this path.

It’s true what they say, you never imagine that something like this will happen to you or your family.

I remember early on our doctor telling us that sadly they had lots of experience treating this illness which helped them with Lex’s treatment but they still don’t know why ALL happens which is difficult to comprehend. I had so many “why” questions, but our wonderful doctors didn’t really have many answers, making ongoing and future research all the more important. 

Never having been in the hospital system before the thing that struck me the most was the love and support we received from so many people, organisations and staff. They not only take care of children who are unwell but their families too.

The little things made a real difference to our hospital experience. From art therapy, music therapy, and gym passes all funded by the Children's Cancer Foundation and massages to ease the aches of sleeping with your child in the hospital. We also had the warm and generous support of Family Resource Coordinator, Merridy Justice, also funded by the Foundation who delivers fresh fruit and bakery goods to nourish families when there was no time for meals. The hard work, money raised and donations really do make a horrendous experience a little more bearable.

 


Thank you to Joanne sharing her family's story with the Children’s Cancer Foundation. If you would like to know more about Dr Khaw’s world-class research program, please contact us.

 

Photo creditsJoanne Stogiannis, Mother of Lexie 

Acute Lymphoblastic Leukemia (ALL) patient, Lexie, in class at hospital