Personal Story

Zahra’s Journey with Myelodysplastic Syndromes

Zahra outside playing with her mother and sister

Zahra is a charming and curious toddler. She is very cheeky, chatty, clever and fiercely independent. Zahra is curious about the world around her and likes to know how things work. She has a sharp mind, and a very good memory – often randomly bringing up little things that happened from months before!

Soon after Zahra started day-care in early 2021, she began to become unwell more frequently. Her mother Anna noticed that she was bruising a lot on her legs and she would get some petechiae on her body. Zahra’s fatigue and symptoms increased, and at a family holiday her parents noticed she was lethargic and didn’t want to play or eat. Zahra was taken to the Royal Children’s Hospital Emergency Department, where they were seen immediately and given blood tests.

“We were told the results may take at least an hour or two, and so we kept Zahra as comfortable as we could. Within half an hour, a haematologist came in and told us that they had come across some irregular results; Zahra’s haemoglobin level was seven – the lowest they had ever seen in someone who was still alive.” Anna says.

As soon as Zahra was given a blood transfusion, some colour started returning to her face. She was smiling and started making cheeky comments to the nurses. For her parents, this was such a relief to see!

Once Zahra was stable, the haematologist spoke to her parents about the various avenues they were investigating for a diagnosis. Their initial look at her blood work warranted further investigation; a bone marrow biopsy and aspirate.

“This is when we knew things weren’t looking good, and Zahra just wasn’t low in iron.” Anna says. “When we realised that the ward was dedicated to looking after oncology patients, we were filled with dread. Something that still hasn’t fully left us.”

By the end of the week, Zahra received a diagnosis of Severe Aplastic Anaemia. The following weeks, Zahra had regular outpatient appointments in Day Oncology, receiving blood and platelet transfusions, and dressing changes.

Some things had changed in her bone marrow, Zahra’s cells were looking abnormal and now everything was back on the table.

Anna says the feeling of dread returned when Zahra received a new diagnosis of Myelodysplastic Syndrome (MDS), a condition that can develop from Severe Aplastic Anaemia. “It meant that the only treatment option now was for a bone marrow transplant and Zahra needed to be put on the registry immediately.”

The Gift of a Life-Saving Bone Marrow Transplant

Zahra’s parents received the good news that not one, but two anonymous cord blood donors from overseas were a solid match. Zahra and her family spent Christmas, New Year, and Zahra’s 3rd birthday isolated in hospital for the transplant, with hospital staff making the experience as festive as possible.

The bone marrow transplant journey has been long and hard for Zahra. From pre-transplant procedures that resulted in additional admissions and fertility preservation with removal of an ovary. “Zahra continued to be her resilient self, which helped us as her parents be strong for her.” Anna says.

While the bone marrow transplant was successful, the road to recovery was difficult. During that time, Zahra also had to learn to walk again after three months. Being so unwell, she was not up for walking and stayed in bed or was carried to the couch. It took some coaxing, but after a few initial difficult sessions with the physiotherapist, Zahra started to build up more strength on her own and was waddling through the ward in no-time.

Zahra was finally discharged exactly three months after her admission, finally coming out of the isolation of the bone marrow transplant ward for the first time.

One long journey ending, with the recovery process just getting started.

Looking to the future

Whilst most of Zahra’s recovery has been good, it hasn’t been without its hiccups. Bone marrow transplants can be a difficult treatment, and Zahra is currently seeing specialists for health concerns as a result of the transplant.

“It is quite a scary thing to experience as parents. As new symptoms appear, we always worry about what it could mean.” Anna explains.

Zahra’s hair has grown back after her chemotherapy, and Anna says her cheeky personality is back too. “She’s gotten through the most difficult part of treatment, and now we continue with regular hospital reviews to ensure that her blood work looks good and nothing changes. This will be her new normal for at least another year. We’re now looking forward to her Zahra starting kinder in 2023.”

Thank you Anna for sharing Zahra’s story with us.