Grace’s story

Grace was immediately admitted, and in the following days, she had an electrocardiograph (ECG), a trans thoracic echo, blood tests, and received multiple units of blood. Grace had a bone marrow aspirate to determine which type of leukemia she had, and a port-a-cath inserted, and within days of diagnosis, Grace started her first cycle of chemotherapy.

“After Grace was diagnosed it became just so overwhelming. We were very upset and did not know what was ahead for our Gracie. There were so many people from each department coming to speak to us, but the support we received as a family we are truly grateful for.” said Grace’s mum Philippa.

The protocol Grace follows for her treatment is broken into three phases, induction, consolidation, and maintenance. In the induction and consolidation phase of her treatment, Grace was at the hospital at least once a week for lumbar punctures, bone marrow aspirations, or IV and intrathecal chemotherapy. In the maintenance phase, Grace was at the hospital every two weeks for blood, lumbar punctures, or chemotherapy. She also has daily oral chemotherapy at home.

A few weeks after Grace commenced treatment, she got an infection. She was admitted to hospital for several weeks and ended up in the Paediatric Intensive Care Unit, ventilated and in renal failure. She also had a gastric bleed and had to be rushed to theatre to repair it.

The chemotherapy gave her severe neuropathy and she stopped walking. Thankfully, with weekly physiotherapy and her hard work, she was able to start walking again in November 2018. But sadly, in July 2019 she broke her leg, and because Grace developed oesteogenisis from the treatment, it took many months to heal and for Grace to learn to walk for a second time. Grace also has a bug in her system that has given her multiple urinary tract infections.  One infection caused her to become septic and she required emergency treatment and another extended stay in hospital.

“The Children’s Hospital Foundation volunteers have been absolutely amazing. When we have had long stays in hospital, they make it just that bit easier with the services they provide and friendly smiles. Grace is often confined to her room during an admission, so the volunteers deliver toys and books for her to play with which is absolutely amazing. They also gave Grace a beautiful quilt to make her room just a bit more like home which was absolutely wonderful! They made an overwhelming experience just a little easier.

When in hospital one of Grace’s favourite things was pet therapy, she loves dogs! Whenever she received a visit from one of them, she was always up and ready to give them a pat. Her other favourite activity was music therapy. The relaxing music provided to Grace when she was in PICU was amazing. Since then, and to this day Grace will not go to sleep unless there is relaxing music playing.” added Philippa.

Brave little Grace finally finished treatment in November 2020 and got to ring the bell to signify her brave fight and mark the end of her treatment.  Grace will require ongoing blood tests and follow-up appointments for the next 10 years.

Philippa said “We are so proud of Grace.  On top of everything that comes with a leukaemia diagnosis, Grace also had to learn to walk again, not once but twice.  We had a big celebration at the end of her treatment and enjoyed a wonderful Christmas at home together.”